My story, my blog, my journal about my life with the disease Non-Hodgkin’s Lymphoma....
Last Updated April 5, 2012.
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visiting this site since December 8, 2010.
Me on the Klondike Trek in 1998, in Alaska.
December 8, 2010.
- In summer of 2002 I was diagnosed with the disease Non-Hodgkin’s Lymphoma and I have been thinking for a while now to start up a blog, or you might want to call it a journal, to let family, friends and other people in the world to know what has been going on with me and my illness, month by month and then later what is going on day by day.
Doing this is much easier for me than writing a bunch of e-mails, talk on the phone etc. As well as I might be feeling a bit better.
Maybe doing this I also might be able to help anyone else out there, someone out there, there are in a similar situation like mine.
Maybe also someone out there in the medical world or other people can learn something from my story.
I will try to write my story as positively as possible but you can expect some sadness as well, and most things are written completely from my memories.
And maybe there will be some misspelling here and there, especially when it comes to medical terms.
Right now it is written in the stars what is going to happen to me and I am in a period of great worries.......
All revealing of my medical status in this journal is entirely of my own choice.
Continue down this page to read my story…
Me in September 2011, after two long years of heavy cancer treatment.
When I in May of 1999 discovered my first symptoms, swollen lymph knots in my left groin (sw transl: ljumske), I didn’t realize that it was a beginning of a really bad rollercoaster that would last for many years and still are going on, now worse than before.
I also slowly this year lost about 6-7 kg in weight, but this took about the whole year to happen. At the time I thought it was just a good thing to lose weight and just thought it might had to do with the fact that I was training quite hard. I used to run 3-4 times a week, about 10 km each time.
I did however continued to travel, doing my beloved wilderness Treks, I did two Treks in 1999 and didn’t worry about it too much, just a little.
I went to see a bunch of doctors, but no one said it could be anything serious, just that I should keep an eye on it.
So I did my last Trek in September of 1999, it was hard now to sleep on the ground in a tent, when that swelling of my groin was bothering me. There was no pain and I felt just fine otherwise, it was just uncomfortable. I did however booked another Trek in 2000 but cancelled it just a couple of months before the trek were about to start.
I decided to take a break in my travel.
Me with the mountains behind while hiking in Denali, Alaska in 1999.
Me and my darlings Bettan and Jan. My very, very best friends in the whole world. On our Gypsy/Hippie tour 1986.
In January of 2001, I left Gothenburg for the town of Linköping and a new job and boyfriend and still there were no worries until June of 2002 around midsummer time. Now the swelling of my groin were as big as something around 10cm x 6cm and putting on a bikini and lay on the beach, made me feel like some kind of freak.
So once again, for the third time, I went to see a doctor, and told him that whatever this swelling in my groin were caused by, please remove it.
Finally I was lucky enough to meet a doctor that had seen this before and he sent me up to the university hospital right away to first take out some cells with a needle from the swelling of the groin but also an ultrasound of groin and stomach.
Now, being working in the laboratory business for many years, I was well aware of hematology diseases but for some reason I had managed to block this out in my mind. So imagine my shock when the doctor that were performing the ultrasound told me of all of the many swollen lymph knots I had in a chain from my groin up to and inside my spleen. As soon as he had said this I understood right away what was going on, so I asked the ultrasound doctor if this was Lymphoma and he said; YES, I am afraid so.
And by this many years of struggling and worrying began.
My first doctor that had sent me up to the university hospital called me up and confirmed the whole thing and that I now was under the care of the Oncology department at the University hospital.
But he also said something like this; Now Gunilla, do NOT go home and write your last will, there are many patients of mine that are living with this disease and are doing fine, and have been doing so for many years.
At the time I can’t say that those words really helped, I was devastated. I have always said that if any disease really scares the hell out of me, it is cancer.
When getting this notice my best friend, I also call her my sister (we go way back), Elisabeth, left her family to be with me on those first shocking days and I do not think someone could do a better gesture than this, I really love you for this Elisabeth and also that you and your family have been there for me on the coming struggling days.
You, Jan and the kids are a bunch of stars.
My dad, well he got really shocked when I told him, and hangs up on me on the phone. But came back the next day and told me that this had really shocked him. My mum had after just a few months of sickness passed away due to cancer in the end of 1998, however not in Lymphoma, so he was still struggling with his shock and sorrow about this.
After getting this really devastated news the rest of the summer was filled with investigations of what type of Lymphoma it was, there are a few different types.
It started up right away with a surgical removal of a lymph knot, then it continued with a full body CT scan and also a bone marrow biopsy and many different kinds of blood samples.
Being a laboratory person I had participate on many bone marrow biopsies on patients and I was absolutely terrified about doing this procedure and I am still that terrified and just hate it and today I have done many.
I managed to go on my vacation in August in peace but didn’t dare to travel very far, and the whole time I was really scared and worried about what would happen.
So I spent most of the time in the Gothenburg area with Elisabeth and Jan and their kids and with some other friends and everyone was trying to help me trough this ordeal.
For some reason when I look back I can’t find one single photo of the summer of 2002.
Some of my dear friends; Lotta, Bettan, Helle, Madde, Lena and me in Sälen 2002.
Me, Madde and Lotta at our dear Hultet in October,2002.
So then in September I was called up to see my Oncology doctor to get the results of all the investigations and to hear what they planned to do with me.
First I was told that the kind of Lymphoma I had was the Follicular one of B-cells type with antibody CD20 on it, and that it was of low malignity, that is, it had a very slow growth potential. This type of Lymphoma belongs to the group of Non-Hodgkin’s Lymphomas.
So at this point they were not going to do anything at all, just have me on regular checkups. I was told that they normally don’t do anything when the patient does not have any major problems with the disease. But I was also told that there was no cure for this and that I had to live with it.
I was also told that Lymphoma was not of hereditary but when I look back to my family history, my grandmother on my mother's side passed away in Lymphoma and my grandfather on my dad's side passed away in CLL, Chronic Lymphatic Leukemia, which is a kind of sister or brother to Lymphoma. However, both passed away in old age.
So in my case I can’t really say that I believe it is not of hereditary, whatever someone else claims.
But for now I was really relieved about everything, I didn’t need to go through some major chemo treatment or anything, at least not for the moment.
But oh dear, I was definitely going to get there alright.....
I was feeling fine for some years and not much happened, but of course I had some symptoms, for instance sweating during the nights now and then, but not constantly every night and this is a typically symptom for Lymphoma.
Hmmm, these sweating had actually started probably before 1999, and we even joked about it at work at the time that I potentially had come in to an early menopause, which made me a bit upset since I was very much too young for that to happening, but at the same time we all laughed about it. And I still had that swelling in my groin and still felt like a freak in bikini, but at this point I could do no more than accept that.
I went on my regular checkups every 3 months or so and did some CT scans and took blood samples now and then and things were pretty good; I calmed down and tried not to think too much about the whole thing, but of course when every checkup came up, I got really worried. I could also notice during this time that every time I got a cold, my lymph knots started to swell again some weeks after I had got rid of the cold but then later, months later, they slowly went down again.
The whole thing was more or less constantly spinning in my head but I also managed to block out my worries now and then and for almost 4 years I had some kind of peace and quiet.
But other than this, I was feeling fine and in October of 2002 I went to England to participate in my dear Trek friend Andrews wedding with Sarah-Jane in Doncaster.
Me, Julia, Tim, Pat and Agnes beeing very touched by the beautifully wedding ceremony between Andrew and Sarah-Jane, in October 2002 in England.
Trek group photo at Dennis and Relinde's wedding in Belgium, September 2006.
Well, at some point between autumn 2002 and 2006, can’t remember when it started, I also had started to get a really big swelling on my left side of the neck, this made even more made me feel grotesque and ugly since it was now very visible to others as well and people that did not know about my illness could ask me if I had been to the dentist and removed a wisdom tooth or something.
But also I had started to get some problems with hiccups after eating.
The hiccups were another symptom of my spleen that now were full with lymph knots and quite big and pressed against the stomach. So now my doctors at the oncology department decided that it was time to do something.
But before anything started I was able to participate in my dear Trek friend Dennis wedding to his beloved Relinde in Belgium on September 9, 2006.
When I got back from the wedding; again I first had to do a cell biopsy of the swelling of the neck to see that things had not turned into the aggressive type of Lymphoma as well as another bone marrow biopsy….Oh god I just hate that.
The needle sticks of the lymph knot on my neck was also an ordeal, after 15 needle sticks I lost count. The good news was that the cell biopsy of the neck, confirmed that it was still the low malign Lymphoma, but something was needed to be done about the current symptoms.
It got decided that I was going to start up with a pretty mild chemo therapy for some months, so mild that I was not going to be hospitalized and still could work and with no hair loss but I could feel some nauseous and that I did, but it was not worse than I could cope with it.
This chemo was just some pills called Leukoran and the treatment was in a 3 week session. I took the pills for 5 days and then there was a hold up till the end of that 3 week session. Before I started the next 3 week session I had to go and take some blood samples to check up on the amount of the white blood cells, the Leukocytes. The meaning of this was that the drug should kill my sick cells but unfortunately with every chemo the healthy cells are getting killed as well. So the amount of the Leukocytes should drop during the first maybe 10-12 days and after that they should rise again before the next 3 week session began.
Here we soon discovered that there was a problem in getting back on the amount of Leukocytes and a new session could not start until the amount of Leukocytes was ok again. So after maybe 3 sessions they decided that this was not working as it should do.
The gang with the Swiss Track And Fields Athletic Marc Schneeberger at The European Athletics ChampionShips in Track And Fields. Gothenburg-Sweden 2006.
Me standing to the right with that awful swelling on my neck.
Me and Jan at our annual New Years Party 2006-2007.
It was now January 2007 when the decision was made to stop the Leukoran chemo treatment. Chemo was for some reason not my thing and I was told that I probably would never ever again get any chemo.
Now the word bone marrow transplant also got included in the discussions for the first time but we were still a long way from that.
Instead the decision was taken to start up with a drug called Mabthera, which is given in infusion and particularly targeting the CD20 antibodies that I had on my sick cells and it is some kind of chemo but at the same time not, I was not going to feel sick or lose any hair this time either.
So in the end of January I had a pick line put in to my left arm and this is a kind of tube that goes into the vein in the arm and then up to the heart.
This was done so they didn’t need to put any needles in me every time it was time for a Mabthera infusion. This was kind of a new thing at the time for the Linköping hospital and to be honest I think they wanted to test it on me, I was told I was just no. 2 at the whole hospital to get a vein tube like that. This tube was going to be stucked in my arm for the whole Mabthera period and for some time afterwards.
So then started the Mabthera sessions in February, and I was going to have one infusion every week, 6 times.
On that first infusion with Mabthera I was a really scared, I had been informed that there could be a serious allergic reaction to it so they were going to start the infusion slow and every 15 minutes I was checked up with blood pressure. I could also see that beside my bed they had put a table with drugs and things for any eventualities that they needed to revive me.
Believe me when I tell you I was petrified that first time.
But everything went well and if nothing serious happens on this first infusion the other infusions normally should go fine as well. So this went on and then after the 6:th infusion I was about to do a new CT scan after 3 weeks to see if there was any good results.
The pick line, well it was still there and I had few problems with it apart from that it was quite uncomfortable and in the end of March I went as usually to the yearly ski trip to Sälen with it too.
That was not a hit, I was a bit concerned that something or someone should rip it out by accident, so I took it very easy up there and did not do any skiing at all.
Two days after coming home from Sälen I had my last infusion and then 3 weeks later a CT Scan was made.
Myself and my Pickline together with Lena, a very dear Champs sister, in Sälen in March of 2007. Me still with that awful swelling of my neck.
Me at our annual barbeque at work in June of 2007.
Well, I did the CT scan sometime around the 20:th of April and then in the end of April I was called in to my Oncology doctor for the results.
The Mabthera had done its job very good, most of my swelling lymph knots were gone and my spleen had almost got back to normal size from being almost like the size of a football before. I was also told that I probably would get a refill with Mabthera again after a year to keep the Lymphoma in a calm state.
I was very happy and the pick line got removed and boy did it felt really good to get rid of that. However the swelling on my neck was still there. So next decision was made that I should get some radiation therapy on my neck to try to get rid of that too.
The radiation therapy did however not concern me at all and I was soooo happy about the good results despite the swelling of the neck that still was there.
But if I knew then what I know today I would have gotten really worried about the radiation therapy.
I started up the radiation therapy in the end of May and was going to get 10 sessions, one each day, just locally on my left side of the neck.
It didn’t take long until I started to feel the side effects of the radiation. I had been told later that having radio therapy on your neck are one of the worst radiation therapies you can get.
I developed some really nasty burns in my mouth and throat and lost the taste sensation and it hurt like hell and I could not eat much other than soup so I lost 4 kg during those two weeks. This continued for some weeks after the therapy had ended and nothing had happened on that swelling on my neck.
I was really disappointed about this and not having the taste sensation was horrible, I had also been told that it could be permanent.
It is not so hard to explain what it is like to lose the taste sensation, imagine yourself the taste of ketchup and then mix it with water. That is, you can taste that is actually ketchup but it is like someone had mixed it with more water than ketchup.
At midsummer I was invited to a surprise wedding between Elisabeth’s brother Kent and his Nina, whom I have also known forever.
It was a beautifully wedding and Kent, who is a trained chef, had made a really nice wedding dinner. I know it tasted really good since everyone told me so, unfortunately for me, who just loves food and eating, I could barely taste anything, but despite that I ate like crazy.
It was some time during July I started to notice that my taste sensation was slowly coming back and then suddenly I also started to notice that the swelling on my neck was going down slowly. Believe me when I cried out Yippeeeeee.
That swelling went down completely and has not returned and finally I didn’t need to feel so ugly anymore.
The bride Nina, me, Jan and Elisabeth's mother Birgit at the wedding in June of 2007.
Me, Lotta and Elisabeth at our annual New Year Party 2007-2008.
August 2007-March 2008.|
I was so relieved about that the radiation therapy did its trick and now I once again had some months of no hospital visit, just went back for my normal checkups, every 3 months or so.
Then in January-February 2008 I got a really bad cold that lasted for many weeks and after that the swelling in my groin took up the speed again.
Phuiiii, oh no here we go again.
By now there had been reorganization at the Linköping hospital and I was transferred over to the Hematology department instead and got a new doctor. So basically my disease history needed to be read and told to this new doctor. It was like starting all over again and to tell you the truth I never got the same trust in this new doctor as the old ones I had at the Oncology department.
This doctor had some really strange ideas that didn’t cope at all with my previous doctor’s as well as with the doctors I later met at Sahlgrenska hospital in Gothenburg. The first thing he told me was that the treatment I had been given, the Mabthera infusions was a long shot he didn’t believe at all in and that I had been lucky that it actually had worked well. Wow, was my first thought, does this doctor really know what he is talking about, Mabthera is one of the greatest inventions for treatment of the kind of Lymphoma I have and everyone is using it. I had also done my own investigations about the Mabthera so I knew quite well what it is all about, so basically I just sat there stunned by surprise and stared at him and didn’t know how to respond to this strange point of view of his but thought well he is the doctor here, I am not, so what do I know.
Well this of course meant that I never got the refill of Mabthera I was supposed to have after a year.
The second thing he said was that he believed that CT scanning was not a good thing to do, that it could increase the disease. Well, he was very alone with this idea as well. So let me tell you that these strange ideas of his made me lose my confident in him right away.
Anyway, my groin was swelling again but it took another 3-4 months before anything was done.
Again I needed to do a bone marrow biopsy, Oh My God Not Again, and also this time again a surgical removal of a lymph knot from my groin. My new hematology doctor performed the bone marrow biopsy himself and he was extremely brutal compare to the other ones that had performed it on me, the pain was horrible and this of course just increased my fear for this procedure.
But at this point the swelling in the groin had started to go down again, but the operation was done anyway.
This time I was put to sleep during the surgical procedure and since I had not been going through any sedation since I was a teenager I was really scared about this.
That poor anestesiologist had to put up with my mouth blabbing like crazy before he put me to sleep.
But I woke up after an hour and was totally in love with that doctor…:-).
The result; well once again the bone marrow biopsy and biopsy from my groin showed no movement in my Lymphoma and the groin was slowly getting back to normal again.
Me, Elisabeth and Hanne in summer of 2008.
The kids chearing for the fireworks at our annual New Year Party 2008-2009.
Once again I had some time free from the hospital visits besides the checkups and in December I went home to my dad in Karlskrona to celebrate Christmas as I usually did.
We had a nice Christmas together and I helped dad to buy a new computer but I could also see that something was very wrong with my dad. When we were standing in a huge line at the computer store and I could see on my dad’s face that he got pale and sweating and started to stumble. I made him sit down and took care of the computer buying but was a bit worried about his blood sugar since he was a diabetic, he had fallen into a coma many times before, so I was worried that it was time again. So I ended the purchase of the computer as quickly as I could.
But we managed to get home again, without any problems, with a brand new computer and the rest of the Christmas was nice and calm with a lot of good Christmas food and dad was really happy about his new computer, so I didn’t worry too much about him. I was so used to his diabetic problems that it didn’t occur to me that something else could be wrong.
So I went home to Linköping again, dad said he was feeling fine but what I didn’t know at the time were that things were about to escalate in to a very bad situation during 2009, for both myself and my dad.
And then New Years was spent as always with Elisabeth and Jan and our friends and we had a good time as we always have.
In January I once again got this really bad cold, this time that cold lasted for 6 weeks and was really bad. Then in the end of January I suddenly got a phone call from my dad’s neighbor.
Dad's very nice neighbor Arne used to check up on my dad to see that everything was ok, that he was out with his two dogs every now and then, so he used to call me when something happened to my dad. He told me that my dad had been found unconscious in his car in the city center of Karlskrona and had been sitting there for several hours without anyone noticing the situation but eventually someone did and he was rushed into the ICU at the Karlskrona hospital.
Again we all thought that it was his diabetic causing this. But this time it was something else, his hemoglobin level was extremely low and he had been given blood transfusions and the suspicions were that he was bleeding from somewhere. But once again my dad insisted on going home to the dogs so they let him and scheduled him for some investigations about what had caused his low hemoglobin value.
Unfortunately this investigation took until end of March before they planned for it and by this time it was too late. At the same time no one could tell that it wasn’t too late anyway.
Beautifully Fjärås surroundings in January of 2009.
Carina a dear Champs sister and me in Sälen, in March 2009. At this point I had no clue what would happend in just a few days.
So my dad then finally got an appointment to do a colon scope in the beginning of April. Me, well my groin was swelling again but I thought it was just the effect of that bad cold and that it eventually would go down again, as it usually did.
I went on my yearly ski trip to Sälen and came home to Linköping again on Monday March the 23:rd and had planned to go down to my dad in Karlskrona to accompany him to that colon scope that was scheduled to Thursday April 2 the following week.
During February I also got the news that I had gotten an apartment in Gothenburg and planned to move back there and I was very happy about this and the move was planned to May 15.
Well, my dad’s investigation were about to be cancelled. On Monday March 30, my dad’s neighbor Arne called me up again and told me that he had seen that my dad hadn’t been walking the dogs since yesterday so he had gone into my dad’s house to check up on him. He found him unconscious on the floor in his bedroom and called the ambulance. This time my dad didn’t wake up as quickly as before and he was in very bad shape.
I rushed home to pack my bag to go down to Karlskrona since this time I thought, this is it. And now for the first time ever despite all troubles with his diabetic and this was not the first time he was at the ICU ward, one doctor called me from the ICU ward and told me my dad was there and in very bad shape.
So I rushed to the train to be there for him and to take care of the dogs and the house.
Well my dad survived this as well and eventually was moved from the ICU to a normal hospital ward, but he wasn’t the same anymore. Again the low hemoglobin value had caused this and he was very week. I stayed in the house the whole month and my dad was at the hospital the almost the whole month as well. Eventually that investigation was done and they found out that he had colon cancer that had spread to the liver and that there was nothing to do.
During this month I was sitting at the kitchen table working between the visits of my dad at the hospital and walking the dogs, taking care of house, the bills etc. The nice thing about my current job is that I can sit remotely and work. But the kitchen table was not the best suited workplace in the world. Then on April 10, on my birthday, I was invited to Elisabeth’s family and it was also Easter holiday and Elisabeth and Jan was there as well. It was a very nice evening and it felt good to get away from the house for some hours. During this month I also had a huge help and support from my dad‘s very nice neighbor Arne that checked up on me now and then, to see if I needed any assistance with something and also took care of the dogs when needed, I thank you dearly for this.
The day after my birthday one place just below my left groin in my thigh started to hurt like crazy and that area also got red and warm and something had started to swell, could it be new swelling lymph knot that had not been there before I asked myself. I knew I had another check up coming up in the end of April so I let it be and after two weeks it had started to get better.
In the end of April my dad came home and got help from the community and I could go home to both prepare for my move to Gothenburg in two weeks as well to go on my own checkup.
This checkup ended up as usually with this new hematology doctor, some blood samples and a phone call with the doctor, he never wanted to see me in person for some reason. He said it was to save money for them and to save the trip for me. Hmmmmmm, once again really strange ideas.
Well, he told me my blood work was just fine and that was good news so I told him about this new event that had happened in my thigh and he told me he was certain it had nothing to do with my Lymphoma. Oh boy, was he wrong about that.
The next thing was that I told him about my move to Gothenburg and asked how I and my files should get transferred over to Sahlgrenska hospital in Gothenburg. He told me good luck and that I needed to call them up myself. Oh boy was he wrong again.
Our family house in Karlskrona which was build in 1961 and where I grew up.
Helle and Lotta, when I managed to get away for a day in May and spent it in Helles cottage in the woods.
Well, with some help from Elisabeth and Jan as well as my coworker and friend Marianne and her husband I managed to pull through with the move from Linköping in the middle of May.
Thank You sooo much for that help, as well as Lena, Carina and Monica that also helped out when getting to my new apartment in Gothenburg and Helle that came with Thai dinner to me that first evening back in Gothenburg, I have no idea how I would have managed this without you guys.
I only had 14 days to pack after I got back from Karlskrona so it was kind of stressful as well as that I was worried about my dad, things were not working so good with him home in the house, despite all the help he had.
The two dogs had also started to be a major problem, since my dad couldn’t walk them himself so we had some help with that, he spent more or less all his time in bed, so we needed to address this problem quite soon.
After the move a time began with going back and forth between Gothenburg, Karlskrona and the office in Linköping, which lasted the whole summer. I was only a few days in my new apartment before I left for Karlskrona again, and for the coming months I spent more time in Karlskrona than in Gothenburg.
The swelling in my groin was still there and by now it usually had started to go back, but not this time.
In the end of June my dad was once again rushed into the hospital for a major surgery, his tumors’ in his colon had stopped the flow in his intestines so he had developed an ileus.
So they needed to take away the tumors’ as well as a piece of his intestine and he got a bag on his stomach. This time he never came home from the hospital and a few weeks later he was relocated to a hospice and we could expect the end any time soon now.
By now we also had to relocate the dogs with a huge help from dad’s neighbor Arne and that was very sad but we made certain that they came to good new homes.
In the beginning of July my left leg started to swell, the swelling of my groin was still there and had not gone back as usually but now my whole leg and feet got swollen and it was really uncomfortable.
Elisabeth, who is a nurse, got worried and told me that it really needed to be checked up. But me, well I said it has to wait, I can’t go and see a doctor while this thing with my dad was going on.
So I kept driving between Karlskrona and Gothenburg and the swelling of my leg just got worse and worse.
In August I realized that my leg really just needed to be investigated, but I had my vacation and on my vacation it got a bit better since I didn’t need to sit down as much as when I was working.
But sometime during August I did call the Hematology department at Sahlgrenska to try to get in some time soon. I talked to nurse Ingela at the Lymphoma team and she was very nice and also told me that my Linköping doctor had made a major error not referring me to them and that she should call Linköping to get my files, for me.
She also told me that she strongest urged me to go to an emergency ward with my leg to speed things up. At this point my dad could pass away any day so I didn’t go.
The Family Dogs Ronja and Raffa.
September 2009 - at this point probably the worst month of my entire life.|
Probably the last picture of us together; my brother with Ronja, our dad and myself with Raffa at our house in Karlskrona.
My father passed away on September 2:nd and after taking care of funeral things together with my brother I now took the decision it was time to
take care of myself.|
On September 7, five days after my dad’s passing, I was back in Gothenburg again and called the primary care to let them take a look at my leg, that by now was 16 cm thicker than my right leg, and they told me to come down right away for a checkup.
The doctor there just took a quick look at my leg asked me a few questions about my medical history and then sent me straight away to the emergency ward.
Now everything got speeded up and it became really scary.
I got to the emergency ward and they took me in right away and the first thing they did was to check if I had any circulation in my foot, and I did.
They continued with some blood work and an ultrasound of my groin and thigh and then later I got too see a doctor that told me that they suspected a blood clot in my thigh caused by the swelling in the groin but the blood samples and ultrasound couldn’t tell exactly that this was the problem so they were going to refer me to the Hematology department right away because of my medical history. So after this I was sent home with blood thinning shots that I needed to take myself in my stomach every day, just for precaution.
I was still quite confident even now that everything was going to work out just fine. Oh boy was I wrong or what.
Then on Friday the 11:th I got a call from the Lymphoma team at the Hematology department at Sahlgrenska hospital that they had received the referral from the emergency ward and they wanted to see me that same day. It was about lunchtime when they called and I had already made plans for the weekend so I replied to them, could I come on Monday instead, the answer I got was a big NO. So I took the bus to Sahlgrenska hospital and found my way to the Lymphoma team reception room and a doctor came to pick me up.
What happened next I was not prepared for at all. They had confirmed the blood clot in my thigh and now my leg needed to be saved and that was to put me straight away on heavy chemo for at least 6-8 times, with every chemo session including an infusion of Mabthera as well, every 3 weeks, to lower or get rid of the swelling in my groin. And yes, this time I was going to lose, as they said it, my beautifully long curly hair and yes, I was going to feel bad and yes I was going to be sensitive to infections etc. etc .etc……
So within the hour or two after I had arrived to Sahlgrenska I was tucked in a bed with a needle in my arm and the R-Chop-21 chemo treatment was running in my veins. Believe me when I say I lied in that hospital bed, cried and felt so alone and scared.
But I got through it and came home later that night and Elisabeth called me up on the way home from the airport and said, we are coming home to you to pick you up. But by now I was prepared for start feeling very sick so I said; if I am going to start feeling sick now and start to throw up, I would like to do it at home. But I never did got sick but I felt very poorly for 7-10 days after every chemo session and then it turned back to, if not to normal, so at least that I could cope with it.
Two weeks later we had the funeral for my dad and it was around this time I slowly started to lose my hair. It started slowly and it took quite a while until it was visible to others. However, at home there was hair almost everywhere and I have never used the vacuum cleaner as much as during this autumn.
Yea I got a wig right away after the chemo treatment started but I didn’t feel comfortable in it, it wasn’t me, even if the hairdresser tried to make it look as I normally do. No, I felt I looked like a bad version of Britney Spears :-). So I used just a scarf on my head most of the times and just used the wig when I was at a party or something similar.
The blood thinning shots? Well, I had to keep taking these for at least 6 months and the first thing they also did that first day was to raise the dosage.
Me, Suz and Elisabeth at the italian restaturant on December 4.
The chemo sessions continued every 3 weeks but soon it was discovered that the same problem as I had in Linköping, when eating the Leukoran pills, my Leukocytes had a hard time rising before the next chemo session. So every now and then they needed to postpone the chemo for some days and eventually I also needed to take some Leukocyte stimulate shots. The swelling of my leg was however much better, if not normal, then close to it, so happily some good had by now come out of this.
After the 3:rd chemo session a CT scan was done to see any progress and to also see if it was necessary to have 6 or 8 chemo sessions.
I think it was sometime in November that CT scan was done and it showed that the progress was not as expected after 3 sessions so it was decided that I would get 8 chemo sessions totally, instead of just 6.
By now my dad’s house also was sold, this procedure was something that had been going on since September as well, and we needed to empty the house before December 21.
On December 4, before next chemo and when me and my brother needed to leave for Karlskrona, I could manage to go out on a restaurant with my Champs sister, to celebrate our sister Maritas birthday that had taken place a couple of months earlier. We had a nice evening together, even though I skipped the party after the restaurant. At this point I still had some hair left but not much.
So sometime in December me and my brother drove down to Karlskrona to empty the house. We left just two days after a chemo session for me and I was very worried how I would cope with this during the empty process.
Well, my brother had to do the hardest work and I tried to help out as much as I could. It ended though with that, after we had tried to pack everything away that we wanted to keep, which wasn’t much considering, with that we called an auction firm and they came and took basically everything that was left, for nothing.
Now afterwards I can have some regrets about certain things which we let them take and we missed out on, but on the other hand, it was just things, at least we got all important things with us such as photos etc.
But after 5 days of struggling with all this, both my brother and I was very tired and just wanted to go home, so we stopped caring about things. What I didn’t know at this point, my brother didn’t tell me until later, was that his wife, Gun, were now sick in cancer too and was about to go through a major surgery between Christmas and New Year.
So I spent Christmas with Jan and the kids, Elisabeth was working out on the North Sea at an oil platform but came home to New Years and we celebrated New Year as traditional with some close friends.
Me with that ugly Britney Spears wig, used for the first time in December 2009.
Jan with Babuschka on and look like something....eeeeehhh don't know actually....
On New Year’s we had a good time as we always do and yes, the ugly Britney Spears wig was on along with the little black dress. And at the dinner table the wig was going around the table and everyone tried it on with variably results but this night the wig also got a name; Babuschka and we laughed like crazy about how ridiculous most of us looked with it on.
Then I went back to my place a couple of days later, it was now time for another chemo session again, and when coming home an e-mail was waiting for me. It was my brother now telling me what has happened to his wife and that she also had cancer and I started to cry right away.
Oh my God, haven’t this family now suffered enough was my first thought, this have started to look as a very bad movie, I can’t believe it is true, that this is happening.
Elisabeth, Rebecka, me and Lotta on New Years 2009-2010.
Then finally in the end of February I had my last chemo session, just a few weeks before my annual ski trip to Sälen, and I was a bit worried that I wouldn’t be able to go, mainly because of the infection risk if my Leukocytes didn’t improve this time either after the chemo session and I really wanted to go.
I was not prepared for what was going to happen just one week later on Elisabeth’s birthday on March 7. I got a really bad ear infection which just popped up because my Leukocyte level was extremely low. My ear started to itch like crazy around the time of the last chemo and of course I scratched it and got this really bad infection that lasted for some weeks. To my big surprise I was told it was Shingle (Sw. transl: Bältros) I had in my ear that also had turned over to a very bad infection. I was put on medication right away, both antibiotics and antivirus and was referred to the ear/hearing department. The pain was horrible both in my ear and also out in my cheek and I was in bed for a whole week with also very strong pain killers that didn’t help much. I can easily say that this is probably the worst pain I have ever experienced so far.
But eventually I got better and was able to go on the ski trip, even if I felt extremely tired and felt very ugly with no hair and all. I tried to participate in most activities, but no skiing of course. But on day 3 I was tired so I didn’t make it to the last After Ski party with Rydell and Quick, which have been a kind of tradition every year with me on stage with them taking photos. I also that last evening just participated in our mutual dinner party with the Champs girls and then instead of continue partying at Högis after dinner, went home to our cabin and got to bed. And yes, this time I was wearing that ugly Britney Spears wig when we were out in the evenings, during daytime the scarf was on. By now most of my hair was completely gone.
A week before taking off for Sälen another CT scan was made and then on the 29:th of March I went to see Monica, one of my doctors with the Lymphoma team, to get the result, and Elisabeth was with me and I was extremely nervous about what Monica was going to tell me.
Elisabeth and I went home and celebrated with Champagne, I was cleared to finally start my new Gothenburg life. To be honest I don’t remember one thing Monica said to me that day but I was cleared at least.
Also I could stop taking those awful blood thinning shots.
Me with some of that new hair that actually had started to grow again after last chemo. In the end of March 2010.
My Trek friends on our annual Trek reunion with the Happy Birthday wishes.
I got back to work on 50% to begin with at 2.nd of April and was working from home. After the move back to Gothenburg I knew I had an office place at our Tieto office in Gårda, but I told my boss that I wanted to wait a while, a couple of month or so, to take it in position. I was still a bit afraid of infections and that it would get more tiring with travel back and forth to the office every day.
It was also fun to work with all the pictures from our Sälen trip, for our website www.asv12.com which had been put on hold for almost the whole time since my dad got sick.
During April my Trek buddies also had our annual Trek reunion, as understandable I couldn’t go, and sent me a really nice group photo of them with the Happy Birthday message since my birthday was at the same time.
I was really fun to get back to work, and every one of my coworkers seemed to be glad too that I was back which felt really good. Marianne, my friend and coworker, kept me however under strict control that I didn’t overdo things and took it easy.
I worked 50% for three weeks and then went up straight to full time and I felt fine, of course I was tired but who wouldn’t be after an ordeal such as mine. But……
Well, of course there should become a big BUT.
After only 4 days of working full time in the end of April, my left leg started to get bigger again. I just couldn’t believe it was true so I first ignored it, thought it might be that I am not used to sit down for 8 hours every day. But also I started to notice that my groin had started to swell again as well as that new lymph knot lower down in my thigh that appeared in April 2009.
Oh my God, I can’t believe this is true, this can’t be happening…NOT AGAIN, NOT SO SOON!!
Well, I tried to ignore the whole thing for another 10 days in May but eventually on May 11:th I had to call the Lymphoma team again. I could barely work now, since my leg was swelling like crazy and so was my left groin. I got a doctor appointment the next day and after that my life was in total chaos again.
All of those horrible investigations needed to be done once again. A cell punction of my groin, a CT scan and that horrible; Phuiiiii, bone marrow biopsy which I just hate. All of this was done in the matter of a week. And also for precaution, I was put back on those blood thinning shots again.
Everything showed that it was all back again but this time it had most likely also transformed into an aggressive form, the cells taken out of my groin had looked wild, as Monica my doctor expressed it. However, the bone marrow biopsy showed that it at least still were the Follicular Lymphoma, so it had at least not transformed into something else, as it could.
So now everything had turned into very serious and my doctor told me it was now time for a more aggressive chemo treatment but also an autologous bone marrow transplant (I am not entirely sure this is the correct medical term in English, but is when you actually get a transplant of your own bone marrow, but first there is a need for killing as much of the sick cells as possible), otherwise I would probably be dead within 8 months. Believe me I was all over again devastated.
I got all this information on May 19:th and on the 21:st I was admitted to a hospital ward. That day I also needed to do a kidney function test to see if my kidneys were in good shape. This time the chemo was going to be quite heavy and could affect the kidneys. It was Friday afternoon when I got to the hospital ward and eventually got to see a doctor there that told me I could go home over the weekend and come back on Monday.
So I went to Elisabeth and Jan and spent the weekend with them. Thank god for you guys. Thank god for you also Lena, my "probation officer" as I calls her for fun, for all your help with driving me around and helping me do my shopping during all this time and still are.
On Monday morning on the 24:th of May I was back to the hospital ward and later that day I was transported to the Neuro OR in my bed, I was not allowed to walk by myself to this procedure, to have a central vein catheter inserted. And then in the evening the heavy chemo treatment started and lasted for 3 days. This time I was also put on all sorts of medication to prevent from kidney damages, virus infections, bacterial infections etc. etc. etc.
O boy did I feel dreadfully bad this time because of the chemo and in a matter of a week after this first heavy chemo that poor hair of mine, that actually by now had grown into a couple of centimeters at least, was fallen off again. This time all of it fell off right away and I was completely bald.
I came home and was trying to cope with all that bad side effects, such as nauseous for instance. I took all the anti nauseous pills I could and it helped a bit but not completely. Compared to the R-Chop-21 chemo, this chemo was much worse when it came to bad side effects. No, that first chemo was in fact nothing compare to this one. Every week I also needed to go to the hospital to have that central vein catheter flushed and cleaned.
Three weeks later it was time again for the next chemo treatment. On June 21 I was admitted for the 2:nd of that three day chemo session. This time I was feeling nauseous from day one of that session.
On day three, just a couple of hours before I was leaving the hospital to go home, I started to throw up, and it just came. But after that, my nauseous was in fact feeling a bit better, but it didn’t last long.
Leaving the hospital I went straight to Elisabeth and Jan, we were the next morning leaving for Karlskrona to celebrate midsummer with her family. That night I woke up and felt extremely nauseous again and was awake for several hours taking all the anti nauseous pills I could. I thought, Oh my god, how will I cope with this 350 km drive to Karlskrona, feeling so sick. But I did, and eventually the anti nauseous pills helped.
This time I was also put on those Leukocyte stimulating shots again, to prevent my Leukocytes to be getting so low after the chemo. So before we left for Karlskrona, Elisabeth and I went to the pharmacy to get them for me. To our surprise they didn’t have them at the pharmacy we went to, so we needed to drive all the way up to Gothenburg and Sahlgrenska again to get them. So we left for Karlskrona a little bit later than we had planned for.
We had a good time with Elisabeth’s family and I was very well taken care of. Her family is like my second family and I know I am always welcomed to them. I must admit however that I had to work hard and concentrate for not feeling too bad during that weekend.
Me and Elisabeth helping out preparing for midsummer lunch.
Me trying to look as crazy as I can in Karlskrona at midsummer.
About three weeks after that second chemo session a new CT scan was done. It was to see how things were going and if I should have three or four sessions before any bone marrow transplant could be planned. It showed once again that the progress were not as expected. The lymph knots of my groin and thigh had been affected and gone down, but not enough. So now the decision were made to switch over to another kind of chemo, which was called DHAP, and sort of start all over again.
I think it was about now the hopelessness in all of this started to kick in. I had been confident almost this whole time that they were going to fix me but now things started to get a bit too much.
On July 12 I was once again admitted to the hospital for that new chemo and again it was a three day session, same as before. Once again I felt really nauseous and on the third night I puked almost the whole night. But I got through it this time also and came home and felt awful and this time I could also start feel another kind of bad side effect, I could barely eat.
Almost everything tasted like shit (forgive the shit word but that is the only way I could explain it), so I could barely eat anything and started to lose weight. After 10-12 days it did however start to get better and I could start eat again, so eventually I gain weight again.
Then suddenly I started to hear things strangely, everyone including myself I heard as they were lisping as well as a bad tinnitus. At this point I was not aware of that hearing problems were a side effect, but a more less common one, of the DHAP chemo and that the damage could be permanent. When seeing my doctor Monica, I told her about this event and before the next chemo session was done I was referred to a hearing specialist to check up on my hearing. I also got the question if I could cope with this and maybe sacrifice my hearing and continue with the chemo. The decision for that was not very hard to make. I said I do not care about my hearing when it comes to my life, so just continue.
In July, my friend Cilla, whom I hadn’t seen for about 25 years, came to visit me and it was nice to see her again. It was like those 25 years hadn’t passed, it was like we saw each other yesterday and we sat on my balcony in the sun and drank wine and talked and talked and talked and looked at some really old photos.
In the beginning of August me, Elisabeth, Jan and their kids had a crayfish party and since I just love crayfish we had the party before I was going to have the next chemo again, so I was going to be able to eat.
Then on August 3, the 2:nd session of the DHAP chemo was taken place and before I got up to the hospital ward I got to see the hearing specialist to check out my hearing problem. Monica, my doctor had decided, despite my own decision to continue, that this needed to be done before the start of the chemo session that same day.
The hearing check confirmed that there were some damages, especially in the letter of S frequency, which explained the lisping I heard. But it wasn’t too bad so I could continue with the chemo session.
This session ended however this time with that I was not let out of the hospital ward until after four days, instead of three. Again I was puking like crazy and they did not want me to go home until they saw I was ok and I got some extra fluid in my central vein catheter on that fourth day after the chemo was done.
By now that feeling of hopelessness had started to go away and I started to feel confident again, I could feel the swelling of my groin and thigh was going down again and I felt a bit happier. Maybe this time the chemo would do the trick. The next Chemo session were planned to take place on August 24. That never happened.
A new CT scan was once again done on August 17 and by now I had started to get very nervous about the CT scans since every time something bad came out of them. So it did again.
On August 23 I got to see my doctor Monica again, and once again I was told that the chemo had failed. Yes, the Lymph knot swellings had gone down, but again not enough. So now they needed to think about what to do, the chemo was now a closed door for me. My sick Lymphoma cells weren’t chemo sensitive and for that autologous bone marrow transplant to happen that was a must, since when doing the bone marrow transplant they needed to be able to kill ALL of my cells, before the transplant could be administrated. My bone marrow was sort of supposed to start all over with the transplant but the failing of the chemo treatment, proved that this wasn’t possible.
So it got decided at first that I should do a surgical biopsy of the now again very big lymph knot in my thigh, and if you have read my story, the very same lymph knot that my Linköping doctor had been so convinced had nothing to do with my illness when telling him about it in April of 2009.
After this a decision were about to be made. Again that hopelessness kicked in and it was about now that I started to have problems sleeping. I don’t have much problems getting to sleep, but I always woke up in the middle of the night and lay awake for several hours, and this had continued since then.
The beast and the beauty, myself looking as the cancer freak I am and Elisabeth at the crayfish party in the beginning of August.
Lena, my probation officer, and myself at the "Da Babes" party at Ullis house in September.
On September 3, the biopsy were made at Östra Hospital, and this time I had asked for it to be done with just local anesthesia and not be put to sleep. It was an ordeal, and when taking out that piece of lymph knot from my thigh it was like an explosion in my thigh, it hurted like hell. The surgeon told me that the lymph knot was very big and I later got home with a 4-5 cm big scar on my thigh.
On September 11, Ullis one of my dear Champ sister had a party for us “da babes” and I managed to have a good time, even though I had some dips now and then and was worried for the doctor appointment I had on Monday the 13:th. It was however very nice to see most of the girls again.
So then ten days after the biopsy, on September 13 I had a doctor appointment with my doctor Monica and this time Elisabeth was with me to listen to what Monica should say. I do not have a hard time understanding what the doctors are telling me, the problem is that today I have a hard time to remember what have been said.
To begin with, my primary fear at this point had started to be that they would give up on me, that they would say; sorry Gunilla but there are nothing left we could do, and for now on, this kept coming back over and over again on basically every doctor appointment I had.
Monica told me that the biopsy had confirmed that I definitely had the aggressive form of Lymphoma now and that she had been thinking that whole weekend how to proceed. She had come up with a plan and this plan included a bone marrow transplant from another person, but it might be that I didn’t have the time left for it to happen. This was now the time to ask my brother if he could donate since this would be the fastest way to get it done, but there was also a big risk that he wouldn’t match, the chance of a match was only 25%. Otherwise the only option would be to search in the international stem cell register, but that would probably take too much time, time I didn’t have.
It was horrible to ask my brother to do this, because of his own family issues, but he said he had expected this question much sooner and of course he said yes. So that same day after talking to Monica some blood was drawn from me to type my cells and then later my brother was going to do the same. That same day my central vein catheter also was removed and that felt really good.
The plan was now like this:
A. I would get radiation therapy of my left groin and thigh to stop or slow down the process.
B. After the radiation therapy I would get a radioactive isotope called Zevalin in my blood that would get around and take a shot at all my sick cells that had antibody CD20 on them.
C. Then an allogeneic bone marrow transplant, hopefully then from my brother.
D. The combination of B and C are a study that has just been performed on a few patients in Sweden, so this was a bit scary.
It was on September 24 I was at the radiation therapy ward for my first visit and a form was made that I would lay in, to get a proper position of the body. The therapy was then planned to start on October 13 and I was also told that I would get 22 sessions, one every day. But a few days later they called me up and told me they would start earlier, on October 7 instead.
However, this month ended with some bad news, a phone call from Monica my doctor, who told me that my brother’s cells unfortunately didn’t match mine. This meant that now the international stem cell register was in fact the only option. I cried after that phone call.
October 7 – The 22 radiation therapy sessions of my left groin and thigh started and this was on a Thursday. That same day I also had a doctor appointment for a sort of zero evaluation of the swelling of my groin and thigh.
That same weekend, only two days after the start, I started to feel that the swelling was going down. I couldn’t believe it was true.
October 21 – Today I had a doctor appointment to see how things were going and by now I had gone through 11 radiation therapy sessions, so we were in the middle of the whole thing. Monica my doctor confirmed by looking at my groin and thigh that things were actually going down and she was full of joy. So she rushed into the BMT Team (Bone Marrow Transplant Team) to tell them to start the search for a donor in the international stem cell register. That same day the team called me up to ask me if I could get in on the next day to take new cell typing blood samples. So I did and at the same time I was also informed that all administration of the Swedish search in the international stem cell register were performed by Huddinge Hospital in Stockholm and that my blood samples were about to be sent to them. I was excited about that this procedure finally took place.
November 5 – It was now close to the end of the radiation therapy sessions and by now I had gotten the side effects, I had developed some nasty burns from the radiation but I was able to cope with it with having a bandage on. This weekend I was invited to Elisabeth’s dads 75 year birthday party in Karlskrona and we had a lovely time and I felt just fine and happy.
November 8 – This was the last radiation therapy session day, the 22:nd and it had gone very well, but now it felt good to not have to travel to the hospital every day. And during this period I could feel that the swellings had gone down quite a bit. So finally something good happened, my tumour’s were in fact sensitive to radiation. But now my body needed to rest and heal from this so I was left alone for a while.
November 17 – Today I had a meeting with a wonderful doctor of the BMT team, his name was Professor Mats Brune or Professor TeddyBear as I would like to call him, or as he called himself, the transplant freak.
He was a man with the most intense brown eyes I have ever seen and I stared into those eyes for the whole meeting, trying to focus to what he had to say. He talked to me for almost the whole hour, explaining the transplant procedure and what kind of medication that would be involved and that was a lot. He told me that it would probably take 2-3 months after the transplant before you could see that the transplant cells had taken over, that I would lose all my previous vaccinations and these needed to be administrated once again. He also told me that if the donor had another blood type than my own I would switch over to the donor’s. I asked him how far the search for a donor had proceed and he went away and came back to tell me that they had so far found 3 potential donors in Germany but that they were not completely investigated yet, and I was stunned. But he also told me that he did not want to do the Zevalin isotope thing, since it had only been tested on such a small amount of patients, I definitely agreed on this.
This was only a small amount of everything he told me but he finished the meeting by saying to me: Gunilla, there is hope…and I started to cry. But I left that meeting very calm and assured that I was in the best hands.
November 20 – Since I was not sure what would happened the following weeks I went to see my brother and his family and it was nice to see them again, hadn’t seen them since april I think. We also sorted out some of our family photos that we had taken with us from our dad’s house.
November 23 – Late in the afternoon I got a phone call from the BMT Team. It was one of the nurses of the team that wanted to inform me that I would get admitted to the hospital on the 21:st of December and have the transplant done on the 28:th. THEY HAD FOUND A DONOR!!!
Believe me that I got really shocked about the news, and after the phone call I first started to cry and then I got so thrilled that I couldn’t sit still and there were not much sleep at all that night.
November 24 – This was a day when I was so high of yesterday news and ran around my apartment and cleaned and put up my Advent Christmas stick, I just couldn’t sit still at all. I had informed Elisabeth the happy news the evening before by e-mail since she was out on the north sea working, and had got a reply this morning with her just screaming YIPPPPPPEEEEEEEE!!!
November 25 – I started this morning with informing my closest family, work and friend about the news and that I would spend Christmas at the hospital, which of course was the bad side of the whole thing, but also thought that nothing can stop this now and I was so happy, it is hard so hard to explain what this meant for a person in a life threatening situation.
But say that happiness that would last. In the afternoon I got a letter from the hospital that I would go and have a CT scan done after the following weekend. Believe me when I say that my mood instantly switched from high to low. If anything now would spoil everything it was that CT, as it usually did. I started once again to be very, very worried about the situation.
November 26 – Then I also went to Linköping to see my colleagues, whom I haven’t seen since June 2009, but that trip ended up with some major problems with the trains because of the heavy snow and chill and I only got maybe 1 hour or so to meet up with them at the office. I stayed at my coworker Marianne and her husband’s house over night and we had a nice evening together and before I left the next day we went out into the city center to have a look around. But despite the fact it all ended up in such a short meeting it was nice to see at least most of my colleagues, that could stay put at the office until I arrived. However, it was hard to stop thinking about that CT scan on Monday, it was basically spinning in my head the entire weekend.
November 29 – I went to do that CT scan and by now I was so worried about this that I didn’t sleep much that night. God I just hate this awful rollercoaster now. Up and down, up and down in everything that happens. At this point I was worried sick.
Elisabeth and her parents at Christmas in Karlskrona in December.
December 2 – Today I was going to get the result of the CT scan from my doctor Monica and I didn’t really wanted to go there, I had a feeling it was not going to be positive results, and I turned out to be right.
The CT scan had shown that although my left groin and thigh had successfully went down in swelling, with the radiation therapy I had two other lymph knots, one behind my kidney that had start to swell quite much since last CT and that my transplant planning were now in great danger. Once again had that CT scan spoiled everything. Again I was devastated and I told Monica that soon I can’t take anymore of this
My transplant doctor, Professor TeddyBear aka Professor Mats Brune was at the time in the USA to participate in a huge Hematology conference and Monica told me she would try to get in touch with him to discuss with him what to do. But as she said, my scheduled bone marrow transplant was in a very shaky state.
At this point I also had cancelled all my Christmas plans because I was going to be admitted to the hospital so now I didn’t know what to do.
December 9 - In the evening I got a call on my cell phone from my doctor Monica but unfortunately I missed it so she had left a message there. The message was that they now had finished their discussions and that the plan was ready again, but she didn’t want to tell me the plan over the phone, but that she would try to call me again on Monday. The message got me extremely worried.
December 10 – When the mail arrived at lunchtime there was a letter from the hospital and I opened it and there was a call from the radiation therapy ward that they was going to start a new radiation therapy on December 20 and that they wanted me there to make a new body form on the 15:th.
When getting this letter I started to understand where everything was going and I could only sigh to the whole thing. I could also suspect now that my admission to the hospital on the 21:st of December were for real in great jeopardy.
In the afternoon I also got a call from Nurse Seija at the Lymphoma team that she had been instructed to give me an appointment for another bone marrow biopsy on Monday the 13:th as well as a meeting with Monica so she could inform me what was going to happened.
Let me tell you, when she said bone marrow biopsy I started to shake and this spoiled my whole weekend, Oh dear how much I hate doing that. I told Seija, ok this time you really have to give me some drugs before the biopsy, I simply can’t cope with this anymore, that biopsy terrifies me completely.
December 13 – The meeting with Monica was planned to 09:30 in the morning and the biopsy for 10:00 but that I should be there at 09:15 to get the pre medication. I was terrified and extremely nervous and felt a bit nauseous because of it all. Both the information I was about to have but most of all because of the biopsy.
When I got to the Lymphoma team I told them, please give me all the drugs you are able to, I have arranged for my "probation officer" Lena to come and pick me up afterwards so you can give me all the drugs you want to.
But before I got the pre meds Monica wanted to talk to me and give me the information about what they had come up with. As she put it, we’ll wait with the pre meds for a while so you don’t sit there and giggle while we are talking. I replied to her that I don’t mind giggle at all.
As I had suspected, Monica told me that they have planned two new radiation therapy session of the swelling of that lymph knot behind my kidney, only two sessions because that the kidney was going to be involved. After that I was about to have that Zevalin isotope even though Professor TeddyBear aka Professor Mats Brune, previous had told me he didn’t want to. It was now I was also told that the reason for this switch of plan was because that the donor hadn’t been able to do the donate procedure until February, so they basically didn’t had any choise but to administrate the isotope because of this, trying to keep the illness in a calm state until the transplant could be done, that is, basically buying me more time.
So this was the now I understood that there definitely were not going to be any admission to the hospital on the 21:st and no transplant on the 28:th. However the transplant, Monica explained, are not fully cancelled but we need to do something in the meantime until February and that this specific donor would be kept for me.
Sometime during our conversation Nurse Seija came in with the pre meds, a cocktail I had to drink and also a Morphine pill.
Boy did that cocktail work fast. Monica was going to do an exam of me as well after I had told her that I had felt movement in my lymph knots, this time in my right groin. It was after that exam the pre meds kicked in and I was sitting on the side of the exam table and Monica was telling me about the Zevalin procedure and I started to feel that I couldn’t focus on what she said.
Just a couple of minutes later I was about to stand up and walk to the bathroom before going into the biopsy room. I stood up and then fell like a tree and Monica had to catch me and call for help, my legs didn’t carry me. So she and a nurse had to more or less carry me first to the bathroom and then later to the biopsy room and now everything is quite fuzzy, even though I remember most of it.
Well, the biopsy got done and I got through it, thanks to the drugs, and the reason altogether for doing this biopsy all over again was to find out that my illness hadn’t turned over to some other type of Lymphoma, if so it could jeopardy the administration of the Zevalin.
After the procedure I was put into a bed until Lena showed up and before I was permitted to leave I had to prove that I could walk straight and could answer some questions. I can only say, thank god that you Lena could come and pick me up, I wouldn’t have made it home otherwise.
Despite everything that happened this day, this event with drugging me was a bit funny and I laughed about it later and also later told Nurse Seija, please give me that cocktail again next time I have to do this.
December 15 – Another body form was made today at the radiation therapy ward and after that a CT scan was made with me put into that form. This was made for the purpose of having the radiation therapy given to the exact place on my body as well as they were drawing on my body with a pen to pinpoint the locations. Again I stained everything from that body paint and had to avoid any scrubbing when shower and it was of the color blue so I needed to change the sheets in my bed to the color blue as well to avoid permanent stains. This was what they did today to prepare for the radiation therapy and after that I could go home.
December 20 – I had my first radiation therapy out of two and it became a real hazard before they even could start the session. I was lying in that body form with my arms stretched over my head for one and a half hour while they prepared, prepared and prepared for the session and it was really hard and my arms were aching because I needed to be completely still in that position for such a long time. When they finally was done with all preparation and the sessions could start I had started to developed a bad headache and felt a bit nauseous. We were almost done when the computer software for the machine broke down, Phuiii.
It took a while before they had fixed it and since I had been into that form for such a long time by now, they told me to sit in the waiting room instead to ease my aching arms and to be able to go to the bathroom. While sitting there, I started to puke. The reason for this was that they had to do the radiation therapy on my left side of the belly so the radiation also affected a piece of my stomach.
Well, they fixed the computer software at last and the last piece of the radiation therapy was done and I could go home. That trip with 25 minutes on the bus was not so pleasant. I felt extremely nauseous and could only try to tell myself over and over again, just one more bust stop, just one more bus stop. I made it home to my bus stop but the minute I stepped out of the bus I puked again, and then I puked over and over again that whole afternoon. I felt awful and stayed in bed that whole day.
December 22 – The morning after that first radiation therapy on Monday I had some stomach ache and started to take both anti nauseous pills
as well as stomach pills trying to prevent me from feeling nauseous again and I kept taking these pills for a whole week.
I had my second session today and was really nervous about it, that I was again going to feel bad. I did however not feel bad today,
but once again the session got interrupted after a long time of preparation with me once again lying in that body form with my arms stretched over my
head for about an hour. This time they couldn’t even start the therapy and this time it was the machine that got broken and they had to send for an
engineer. But after two hours it got finished and I went home to pick up my things to go to Elisabeth’s and Jan’s house.|
The next morning we were on the road on our way down south east to Karlskrona to celebrate Christmas with Elisabeth’s family.
Me and Philip at Christmas in Karlskrona.
Me at Christmas in Karlskrona.
December 23-26 – On the morning of the 23:rd I felt extremely nauseous and the pills didn’t really help and I thought, Oh no, how will I cope with that
350 km drive on bad snowy roads. So a bag for any eventualities that I would start to throw up in the car was put down in my backpack.
But after driving for a couple of hours, the whole trip took us about five hours, I started to feel pretty ok again.|
So we had a wonderful Christmas with Elisabeth’s family and I could cope with my nauseous with taking all those pills every day but was extremely tired and spent several hours on the sofa every day, resting, to be able to participate in all the Christmas dinners and thankfully I didn’t have any problems eating of the very good and much Christmas food.
Thank you so much everyone for inviting me to the family Christmas and you know that I consider you all my second family.
On the 26:th we drove back to the west coast and I was at this point dead tired.
My tiredness didn’t really come from all the Christmas activities even though I still slept extremely bad, now even worse than before. No, I am pretty sure it came from a really bad month, December, that had become the worst rollercoaster ever with bad news and no news and not knowing what would happen. At this point there actually is a plan for what will happen, but that plan could get spoiled again and it is terrible not knowing about this, but at the same time you don’t want to know either, if it would be bad news all over again.
Elisabeth's mother and myself at Christmas in Karlskrona.
Elisabeth's mother, myself and Elisabeth at Christmas in Karlskrona.
December 27 – Elisabeth and Jan had a dinner party today with some other family members, such as Jan’s mother and his sister Helene.
It was a really nice dinner and it didn’t get too late but my problems sleeping had really gotten to it’s worse now. I was so tired that my head was
spinning but despite that I didn’t fall asleep until the next morning at around five o’clock. I am almost desperate now because of the lack of sleep.
December 28-31 – I came home to my apartment on the 28:th and felt like my body was made out of lead. At this point I had already decided that there would be no celebrating new years for my part, I am so tired.
To my surprise that evening I fell asleep alright and slept almost the whole night with just a few interruptions and slept until late morning, I slept almost straight for eleven hours. Well, I thought that yea right, this will only last for one night but to my surprise I slept at least almost well for several days.
New Year’s basically came and passed for my part. I actually fell asleep at 09:30 on New Year’s evening and had not planned to even look at the fireworks. But strange enough I woke up at about half an hour before midnight so I got up and at least looked at the fireworks for a couple of minutes but at about ten minutes past midnight I was back to sleep again. I saw the day after that I had received some text messages from some of my friends shortly after midnight, wishing me happy New Year, but I didn’t hear them when they came. Thank you so much my dear friends that you are there for me and thinking about me, even though I am not responding now and then.
Between Christmas and New Year I also received a letter from the Lymphoma team for some blood collections next week and then a doctor appointment on the 10:th of January. My mood went down straight away when that letter arrived even though I knew it eventually would do so, but I am working really hard now to put this as far away as I can away from my mind even though it is not easy.
This doctor appointment could either be “this is it” or that they are proceeding with the plan, so I know that until the 10:th of January my worries will increase for each day and on that particular day I will most likely feel extremely bad.
Snowy picture at Christmas in Karlskrona.
January 1 – Well, what can I say more than a huge Happy New Year to all my family and friends and for my own sake I hope this new year will be a lot better than the past two. Thank You All for being there for me in this ordeal of mine and I love you all very much.
January 4 – I went in to the hospital today to have the blood collection done and I had to sit and wait for a while before it got to be my turn. Many people were there waiting since the place had been closed during the holidays but I was told there were even more people there yesterday.
I am not the easiest person these days to find a good vein to draw blood from so the nurse had to try twice before she managed to get the blood she needed.
To my surprise they also requested height and weight and this is not normally done. When being in the middle of a chemo treatment the weight is usually measured now and then to see that you don’t lose too much weight, but when measuring the height as well it usually only means one thing, to calculate the dose for a drug administration of some kind. This could either mean that I am will have some kind of a treatment soon, but it could also just be a preparation just in case. I’ll simply just have to wait and find out on Monday the 10:th.
I have slept pretty good for some days now but now my sleeping problems have started again.
January 10 - This day then finally arrived, the doctor appointment that should tell me what would happen or if nothing at all would be done, if this was it. The whole weekend I had struggled with my worries, trying really hard not to think about it with various results.
I arrived to the Lymphoma team half an hour too early and sat in the waiting area and waited for Monica my doctor to come and pick me up.
But before I tell you about our meeting I just need to tell you about this lovely lady that works at the reception desk and whom I have met for so many times for the past one year and four months. She always says something cheerful to me and smiles and today she put a remark about how lovely and cute I looked with that new hair of mine, that it really suited me and that the ordinary scarf was not on my head. Given a remark like that from her actually made my shoulders lower a bit and I couldn’t help but start smiling. That hair thing is actually one of the things that had made me very sad after I had lost my long hair and it is extremely ridiculous to even think about this considering everything that had happened. But you know, the hair thing is also one of the things I had to look at every day in the mirror and it is a reminder at all times about what is going on. Anyway, seeing that smiling face and been given that remark from this lovely lady made me a bit calmer so when I arrived up to the 5:th floor to the Lymphoma team I noticed that my head weren’t spinning so much anymore and I tried to start thinking positive thoughts.
Monica came and picked me up and I tried to read her face as much as I could, I could see that she looked very serious, and I thought Oh No, but I was very wrong, for once things were actually pretty good.
She started to inform me about my blood work that I took on 4:th of January, that they looked very good and here came the first positive news. There is a blood sample called LD which is a direct measurement of any activity in my illness and the LD was now back to normal which it hasn’t been since April 2009, I was stunned. The second positive thing was that my bone marrow biopsy, which I did on December 13, had shown no Lymphoma activity at all, again I was stunned. However there had been a remark from the pathologists that they thought that the biopsy sample had been slightly too small. The biopsy sample had been almost in the size of one centimeter and Monica said that this should have been enough, so I try to hang on to that remark and look at it as positive.
All together this could mean that my illness for now had gone into a calmer state, but I must say “could mean”, it’s not for certain and even if my bone marrow didn’t show any Lymphoma activities right now, the rest of my body does. But these positive news, together with the exam Monica performed on me which showed that there didn’t seemed to be any major growth activities on my lymph knots in my both groins and thigh and on the rest of my body, made Monica making the decision to go ahead with the plan made up in December.
So I am now about to have the Zevalin isotope treatment and the procedure will start now on Friday the 14:th, with an infusion of Mabthera and then on next Friday on the 21:st, another infusion of Mabthera, as well as the infusion with the Zevalin isotope.
This means there will be some kind of “Star Wars” inside my body, with the Zevalin shooting a cross fire at all the CD20 cell enemy. So I will be joining Luke Skywalker, Han Solo, Princess Leia and Chewbaka in the fight against Darth Vader and the empire, that is, all the CD20 cell enemy in my body.
The transplant? Well, I decided not to raise the question at all today and Monica didn’t say anything about it either (as they say; no news are good news) and for now just take one thing at the time.
So I left the hospital and got home and by now I had developed a headache and was completely exhausted, most likely because of the stress for this meeting, but I also felt that at least for now, I can calm down a bit, that they still hadn’t given up on me. However, I can’t say I am that happy about having to do the Zevalin procedure but at the same time I realize that I have no choice, they need to buy me more time, so right now I can only be glad that there still is hope and maybe also that the transplant eventually will happen.
I thought that I actually would sleep ok this night but no way. I woke up at about two in the morning and was once again awake for several hours but also started to sneeze like crazy. I sneezed and sneezed over and over again and thought oh no, am I going to get a cold now. But now in the morning of the 11:th I feel almost ok again, so hopefully the sneezing was false alarm but just in case I am right now having this cup of hot tea with lemon, honey and whisky trying to stop it if it’s actually something going on.
January 14 - Early morning today and I was sooooo tired when I got up at about 05:45, it felt like I didn’t sleep anything at all tonight, which I actually didn’t. I had to get up that early to take the premedication which is necessary before having the Mabthera infusion and these should be taken about two hours before the infusion starts. These premeds are necessary to prevent from having an allergic reaction from the Mabthera or if not preventing it totally so at least to ease the reaction if it should happen. However, in my case I have never had any reactions to the Mabthera before so hopefully it will stay like that.
Well, I got to the Lymphoma team in time and the male nurse managed to set the needle correct at first try, which these days is not that easy, so that was good. Then the infusion of Mabthera started, first slowly and then after half an hour they speeded up the flow, when it was confirmed with blood pressure a couple of times and asking how I was feeling that it didn’t seem to be any reaction to it. After one and half hour it was done and then another half hour with just some saline. So basically after 2,5 hours it was all done and I could go home.
Next Friday, the same course of action will occur and within two hours after that, the Zevalin isotope will be administrated.
Today I also got to see a doctor whom I have never met before I think, and seeing a doctor is always something that is done when having a treatment of some kind, to discuss any problems or something else. However, since this doctor was not one of my ordinary doctors we could not discuss much about the coming days or any plans for the transplant, more than that after the Zevalin I have to go and take blood samples every week. The Zevalin will affect the bone marrow so I could be sensitive to infections again or could develop an anemia or bleeding disorders, the latest due to low amount of platelets and all this needs to be monitored on regular basis, but hopefully it won’t affect the bone marrow as much as when having the chemo. This could continue for about 12 weeks but as I have been told before the transplant should be in a combination with the Zevalin but I don’t know in what timeframe so as of today I haven't got a clue about when or if the transplant will occur, but at least for now my files does not say anything about that the transplant might not happen at all, but I must admit that I am really worried that something should happen that would jeopardy the transplant again.
If the transplant for some reason now should be cancelled there is a chance of 75-80% that the Zevalin could buy me another 1-2 years according to the facts (on www.fass.se and in a brochure I’ve been given) but it won’t cure me, the only thing that most likely will cure me is a stem cell/bone marrow transplant.
There is also a bunch of other bad side effects that eventually could happen due to the Zevalin but I can only keep my fingers cross that those won’t happen.
January 20 - Nervous, Nervous, Nervous……about tomorrow!!!
January 21 - The Star Wars has begun and Luke Skywalker, Han Solo, Princess Leia and Chewbaka are in action!!!!
I was an early morning again, to take the premedication before the Mabthera infusion. Arrived to the Lymphoma team in time and was put to bed and the nurse managed this time too, to set the needle correct at first try. However, this time I had to wait for an hour with just a saline drip before they started the Mabthera infusion, to have the correct time frame between the Mabthera and the Zevalin infusions. Elisabeth arrived to accompany me after a couple of hours and that felt really good. I was very nervous about the Zevalin procedure (not so much because of the Mabthera this time, since I by now have done it so many times) so my pulse was at first at 90 when I was checked up as usually with blood pressure, pulse and oxygen level, but an hour later the pulse had lowered. So at 09:30 the Mabthera infusion started and was done at about 11:00 and then I had about 15 minutes of saline before I was hooked off from the drip pole and Elisabeth and I could start walking over to the Oncology/Isotope administration lab to have the Zevalin, which was scheduled to 11:45.
The Zevalin procedure was a bit scary and to tell you the truth I wasn’t that aware how much radioactivity it in fact was in the Zevalin but I was about to find out. I still had the needle in my arm from the Mabthera infusion and luckily they were able to continue to use it at the Isotope lab so they didn’t need to try to put yet another needle in me. Two very nice women took care of me at first, a nurse that prepared the needle in my arm and checked out that it worked and flushed it and then a physicist that had prepared the syringe with the Zevalin. The syringe with the Zevalin was put in to another kind of container to shield the staff from the radiation as well as myself and then this container, with the syringe inside it, was put in a little machine you can call it, made out of lead. This little machine was made so they didn’t need to have their hands on the container with the syringe at any times during the infusion. Since the needle in my arm was located close to my hand, a shielding plate was also put over my hand, to shield it from the radiation in the tubes going from the syringe into my arm. Then the doctor showed up to administrate the Zevalin and to be there in case something should happen to me. By now my pulse had raised again because of all, in my opinion quite scary preparations, so my heart was pumping like crazy.
Then the doctor started the infusion and he did it extremely slowly but it only took about 6 minutes to finish it, it was only 6 ml in that syringe, a very pricy/expensive 6 ml. In fact I have checked it out how much it actually coasts and have on various places find out that the price could be somewhere around 130.000 SEK or around 14.500 € for those 6 ml of Zevalin. During this process I was also informed that only two patients are getting the Zevalin treatment in the Gothenburg area per year. So it’s extremely unusually to have this treatment and unfortunately this also means that when my doctor Monica are not on duty, which she hasn’t been for the past two hospital visits, no one knows much about this and can answer any questions of mine.
Well, it got finished and the needle in my arm and tubes got flushed with some saline to be certain that all of the Zevalin was administrated and nothing was left in there. I didn’t feel bad, strange or anything, so the needle and the tubes were removed from me, they were now considered as hazard materials and should be treated as such and be thrown in specially sealed and marked containers.
It was when removing the tube from the needle in my arm, one tiny little drop of fluid came out from the tube and it was now I realized how very radioactive this in fact was, and the drop you might think was only saline since the tube and needle had been flushed. The nurse picked up the drop with a little sponge and then went to a meter of some kind (Geiger?) to check out if she should consider the sponge to be hazard material, if it was radioactive as well. The meter went sky high right away....Oh dear!!
After it was all done me and Elisabeth had to go back to the Lymphoma team, they wanted me there for observation for about two hours after the Zevalin procedure, so we did. But before we left the Isotope lab I was told a few important rules that I had to follow for some days ahead, since I was now going to be a bit radioactive for a couple of days. It was not of any danger to be social with people but I was not allowed to have any kind of body contact with young people, so for instance I was not allowed to hug Elisabeth’s kids, sitting together by the dinner table was ok. Jan and Elisabeth was ok to hug, they are too old to have the risk to be affected by any radioactivity from me during their lifetime. The second thing was that I had to be very careful when going to the bathroom, for instance I had to flush the toilet twice after using it and wash hands very carefully.
Hearing all this made us joke about that now we didn’t have to turn on any lamps in the evening, we could managed to get enough light just by having me in the room since I was glowing of radiation ;-). I even checked my wristwatch and cell phone if they were still working afterwards as well as was a bit concerned when putting on the TV set and the computer. I am well aware that these actions of mine were really stupid and extremely absurd (have seen too many science fiction movies!!) so at the same time you can laugh about the whole thing, that is, now afterwards when it is done.
But let me tell you that if I had discovered for instance that my wristwatch had stopped working, I would probably have freaked out :-).
After I was released from the Lymphoma team I went home with Elisabeth and spent the night in her’s and Jan’s house, it felt good to not have to be on my own for this first night after going through this procedure and we had a lovely dinner together with their kids.
Now, after this procedure, I have to visit the Lymphoma team once a week for some time ahead to have some blood work done, to follow up any downhill in my Hemoglobin, Leukocytes and Platelets levels. From now there is a big risk that I will develop a sensitive to infections again, anemia or develop a bleeding risk and might need to have some transfusions, but the latest is of course not for certain but it might happen and exactly the same thing could happen during any chemo treatment so this is not of any newsflash for me.
But the sensitivity to infections will most likely occur and it is such a hazard when not being allowed to meet people unless they are extremely healthy but even if they are healthy you might not know so no hugging are allowed, not use any public transportation such as bus or trains or go food shopping, I can get dangerously ill if I have bad luck and have been near the wrong person. If I should get extremely sensitive to infections I also won’t be allowed to eat anything that has not been boiled or cooked properly, such as fresh vegetables for instance or a fruit which you don’t normally have to peel. For instance an orange or banana is ok, an apple is not (even if you peel it). The reason for this is actually the dirt in which for instance vegetables grows in that contains a huge amount of bacteria which is not a danger for a normal healthy person but for a person that is sensitive to infections it could be very dangerous, it does not matter how much you try to rinse it. During my chemo treatments I had been as this extremely sensitive for infections many times and it is very boring not to be able to eat anything that has not been cooked or boiled and be so isolated from people as well as you actually need to ask for help with food shopping.
This also means that if I develop a fever I have to call the Lymphoma team right away and have antibiotics as well as antivirus pills at home at any times, which I always have.
So for now I just know what will happen for the next two weeks and then on the 3:rd of February I’ll have the first follow up doctor appointment after the Zevalin, maybe then I will be told a bit more what will or might happen further on. Until then everything is once again written in the stars.
January 27 - So far so good. Went in to the Lymphoma team today to have the first blood samples taken to see if anything have happened in any downhill in the Hemoglobin, Leukocytes and Platelets levels. I am not feeling bad or so except for my extreme tiredness of course. I still sleep dreadfully bad and soon I need to address this problem to my doctors but don’t really know if they can do anything about it, I don’t want to start taking sleeping pills and I guess that is probably the only thing they can offer me.
If I should get sensitive to infections, I normally don’t feel anything that that’s the case which is a bit of a hazard. Only a blood sample can show that my Leukocytes are low. Low Hemoglobin as well as very low Platelets gives you symptoms which you can’t ignore. For instance shortness of breath, extreme tiredness or weakness and getting pale when having low Hemoglobin and easily get bruises if low Platelets as well as that you bleed a lot if you for instance should cut yourself or get nosebleed very easy or for no particular reason. None of these symptoms I experience at the moment, well except for the extreme tiredness of course, but that is something I feel all the time now, even when my Hemoglobin are ok, and know what is causing it. However, a few days ago I got one symptom that could mean that I am a bit sensitive to infections now, but on the other hand it can also just be false alarm, the symptom could be one of my own reactions to something else, which I don’t know if it is, or if it’s just a coincident.
But last year, when going through the first period of chemo and when I was very sensitive to infections, I got these cracks on both sides of the mouth and since a couple of days ago they are back and normally I do not have this kind of problem at all. If this now is an effect of being sensitive to infections I could expect a phone call from the Lymphoma team probably already today or at latest tomorrow morning, as soon as they have looked at the results from the blood samples, they need to warn me as quickly as possible about it if this is the case now. Also if they call, I need to tell them about these cracks on the sides of my mouth since it can be very bad to have any wounds when being sensitive to infections. If things don’t look too bad I don’t normally hear from them at all.
January 28 - It’s now 10:50 in the morning and so far no phone calls from the Lymphoma team. Can only hope it stays that way during the day. Keeping my fingers crossed.
Forgot to write something yesterday about this thing with being sensitive to infections. Even if I should not be sensitive to infections right now I need to be careful about getting any kind of infections any way, such as a cold for instance. If I should get a cold and then suddenly my Leukocytes starts to drop, that is not a good thing either, I would not have the protection and be able to fight the cold as normally people do. So I have to keep being cautious about getting to close to people and wash hands very carefully when being among people but it’s not that extreme as if I actually should be sensitive. But for instance, after being in a food shop I need to wash my hands afterwards very carefully and while being in the shop, not put my hands up in my face. If you only knew how much nasty things that for instance could be on a food basket that have been used by so many people before you.
February 3 - May the hope rise again!!
Had my doctor appointment today and I was extremely nervous and felt a bit nauseous before the meeting with Monica, my doctor. Elisabeth was with me to listen in to what Monica had to say and I am really thankful for that as well as having such an angel and sister by my side at all times.
Before the meeting with Monica I had some blood samples taken as well as weight. The meeting with Monica was a bit as I expected it to be, we talked and Monica then also did an exam of me, to see if any progress might be seen in my swelling lymph knots. Monica said she thought that the swelling in my left groin had changed a bit, from being as one big lymph knot to that it seemed to have shrunken in the middle of it, and her face lighted up quite much when telling me this. Me, well I can’t say that I had noticed this but after this information, maybe just maybe I can feel it too. Last week’s blood samples had also showed no particularly downhill in the Leukocytes, Hemoglobin or Platelets levels, so I am still not sensitive to infections. However, today’s blood samples did not show up with any results before I left the Lymphoma team.
What will happen next now is that I still once a week have to go and check up on my Leukocytes, Hemoglobin and Platelets levels and then I will have a CT scan done on February 17. The CT scan will show if the Zevalin isotope actually helped stopping up the growing process.
So this CT scan will then be the evaluation if there will be a bone marrow transplant or not….Phuiiiii, here we go again, I will be terrified after that CT to find out the results.
The good news, if you can say it is actually good but I think I can, is that the CT scan does not need to show any disappeared swollen lymph knots. No, it’s enough that it shows that there has not developed any new ones and that the ones I already have, that they haven’t grown any bigger. If this is the case the transplant will be activated again right away. This means that the donor will be activated to donate stem cells and the plan for me being admitted to the hospital will take place as soon as possible.
Well……I have been here before and this time I will try to not have my hopes up too high but I can tell you that it is really hard, I really wish the transplant will take place now, otherwise I am most likely running out of options.
February 10 - Blood samples today and also had gotten the time for the next doctor appointment.
Today I had to go out in the once again snowy world (please stop snowing now, I am so tired of it) to have the weekly blood samples taken to check out the Leukocyte, Hemoglobin and Platelets levels. No one called me from the Lymphoma team after last week’s checkup so hopefully I am still not sensitive to infections. As usually I expect a call from the team if that is the case, they will call me either later today or early morning tomorrow.
A couple of days ago I also received a letter from the Lymphoma team with the scheduled doctor appointment to find out the CT scan result, from the CT that will take place next week on the 17:th. Just a few days later I have the doctor appointment, on the 21:st, to find out what the CT says.
Oh dear, how much I will hate that day when it comes, I am so afraid that it will turn out to be my doomsday.
February 12 - So far no phone call from the Lymphoma team.|
Well, it seems that I am still not sensitive to infections since no one called me from the team for the past two days, that’s good. Finally I had also had a good night’s sleep, but only because of yesterdays night, which was terrible. I woke up at 20 minutes past midnight and couldn’t go back to sleep so yesterday I was even more tired than usually. Yes, I got these sleeping pills on last doctor appointment but I haven’t tried them out yet. Stupid? Yes I know, eventually I have to try them out.
So today I feel a bit more up so I will try to take this power walk today, the weather is beautifully and sunny after the heavy snowfall’s for the past days, but it is a bit cold outside. I am trying to slowly get back in some kind of shape, no matter what happens now. If the transplant gets cancelled again, I have no idea what will happen but as long as I can at least walk, I will try to do that, even if I would have preferred to put on my jogging shoes and be able to run again. But of course trying to do that at this point would probably be very unwise, so I am not even going to try. Also if the transplant will take place I feel the need for at least have a few muscles back when it occurs since I then will be hospitalized for quite a while.
“Always Sälen Week 12”? We are getting there quite fast and it’s only 39 days left at this point, but as you all probably have understood by now, is that I won’t be able to go this year, no matter what happens to me next. I can’t make any planning what so ever to do anything for a while.
Today’s view from my apartment windows. Next to the hill, I can also see some horses. Almost like living on the country side, which feels very nice.
February 17 - CT scan and blood collection today.|
Early morning today, had to get up at about 07:00 in the morning to start drinking the contrast medium for the CT. It is half a liter of contrast medium that I need to drink in small doses for about two hours. The contrast medium is not that bad to drink these days, I had experience much worse before and of today it tastes a little bit like candy. No the worst part is that I actually have to sit on the bus or train and drink it as well, to be able to get it administrated in the correct timeframe before the CT scan starts.
So I arrived to the radiology department and had to sit and wait for a while but eventually it got to be my turn. On the top of drinking the contrast medium I also have to get contrast medium in the blood stream so a needle was put into my arm and of course they had to try twice before the needle was set correct. I have done the CT so many times before but it’s always a bit claustrophobic when it actually starts and you are pushed in to that big wheel, back and forth, as well as when the contrast medium is administrated in the blood stream and it feels like you are getting very warm in your whole body. You can actually feel when the contrast is spreading inside your body.
After the CT scan was done I also was about to have the weekly blood collection done at the Lymphoma team and have yet another needle stick. However, today I decided to be the annoying patient and asked the radiology nurse not to remove the needle in my arm and when I got to the Lymphoma team I went in to the nurses office and asked if they could draw blood from the needle instead of having another needle stick. To my relieve they were able to do that. Then finally this day’s struggle was done and I could go home and when I came home I went more or less straight to bed to lay down and rest for a while. I was quite tired after it was all done, not so much because the early morning but this CT scan and blood collection always make me feel very stressful, since I know something bad can come out of it.
Now I have to wait until after the weekend to meet with my doctor Monica on Monday to have the result and believe me when I say I will be extremely worried the whole weekend about what she will tell me and what the decision will be. I wish however that if it would be positive news that Monica would call me up tomorrow Friday and tell me so I don’t have to worry the whole weekend but I also know that that will most likely not happen, whatever the decision would be. She have a lot more patients than me to pay attention to and will most likely not have the time to even look at the CT scan pictures until Monday.
February 19 - No calls from the Lymphoma team or Dr. Monica.
Well, my wishes that Dr. Monica would call me yesterday and tell me any good news didn’t come true, but on the other hand that would have been extremely unusually if she would have call me. No nurses from the Lymphoma team called me either about any downhill in my Leukocytes, Hemoglobin or Platelet levels. So I simply have to be patient and wait until Monday, but I am so extremely worried, stressed and nervous right now. I almost feel like the woodpecker that is terrorizing Donald Duck in the jungle, in the cartoon that shows on Swedish television every Christmas.
I try to hang on to the fact that since I still don’t seem to have developed any sensitive to infections nor have developed any low Hemoglobin or Platelet levels, that the Zevalin isotope didn’t need to do any or not much crossfire shooting in my bone marrow and that it should mean that there was no, or at least not many, sick cells to shoot at. At the same time, this could actually be the case, since the bone marrow biopsy I did in December actually didn’t show any Lymphoma activity at all. Also one other symptom has changed, the sweating during the nights have slowed down quite much as well. All this together is something I try to hang on to and try to think positive.
So this is it, I can only hope that this might be the case, that my illness really are in a calm state and that all of this not are deceiving me and not had given me any new swelling lymph knots inside that I can’t feel or see from the outside, and that hopefully the swelling lymph knots I already have, haven’t grown any bigger. But my worries goes up and down, one minute I feel fine and calm and the next I start feeling like that woodpecker.
So this weekend I can tell you that there will be a few glasses of wine, to try to relax from the worrying and to tell you the truth I really don’t care at all, if I meet up with Dr. Monica on Monday with a terrible hangover :-).....
February 21 - Walking the ant trail in my apartment but are back on track…
Oh dear what a horrible but also good day this day came to be, but to begin with, No I didn’t wake up this morning with a terrible hangover :-).
I woke up pretty early this morning and couldn’t go back to sleep so I went up to make myself ready for the doctor appointment and believe me when I say I didn’t want to go there. I even thought now and then of calling the Lymphoma team to tell them I couldn’t be there but of course I didn’t do that. So I was ready to start my journey to Sahlgrenska Hospital about two hours before I actually should go and was walking back and forth, back and forth in my apartment and made a big ant trail :-). During this time my hands were shaking, my head was spinning and my heart was pumping like crazy and I thought both now and then that soon I will have a heart attack.
I arrived to the Lymphoma team once again half an hour too early and that turned out to be a good thing. Also again I met this lovely lady at the reception desk that once again made a remark about my new lovely hair, some day I hope will be able to tell her about what a lovely person she is.
So I then sat there in the waiting area when Nurse Seija came and picked me up and told me that another blood collection needed to be done, the same blood sample that I do weekly to check up on my Leukocytes, Hemoglobin and Platelet levels. This could only mean one thing, that the blood sample I took last week on Thursday was for some reason not totally ok.
Then Dr. Monica came and picked me up and once again I tried to read her face, but today it was impossible to read anything at all and I tried really hard to put up all my efforts to stay strong for about what she would tell me.
She went straight ahead and told me right away that everything from the CT scan looked good, that I was now in the state of exactly where she wanted me, in some kind of steady state. My growing lymph knots had gone down in swelling, the ones that I had the two radiation therapy for in late December and which had cancelled the transplant, and the other ones were steady and hadn’t moved at all. Also, there weren’t any new swelling lymph knots that haven’t been there before. If all this was the result of the radiation therapy or the Zevalin isotope was impossible to say. So now she was going to activate the transplant procedure again…
At this point I first just stared at her, I really couldn’t believe what I heard and then I just fell in to tears. I told her how very nervous I had been for this meeting and how relieved I now was about what she had just told me and then she told me how relieved she was as well.
But I will still be in a worrying period for a while. The BMT Team has to speak their opinion and a meeting with them is scheduled for tomorrow Tuesday, but as Monica said, have we said A we have to say B. So I can only hope now that the BMT Team won’t object to go ahead with the transplant for some reason. Monica will call me after they have had their meeting tomorrow. The other thing and maybe the more worrying thing is the donor, if the donor now can go ahead and do the donate thing. The information in December was that the donor weren’t able to do the donate procedure until February but this month has soon ended so I really hope that this won’t spoil the whole thing now.
So I really don’t dare to do any cheering just yet even though I wish I could, there have been too many ups and downs before, but maybe I can in a few days.
The blood sample? Well, it turned out that I have had a really quick downhill in the Platelet level for the past week and are now on the borderline for a Platelet transfusion. The result from the blood sample got in just before I left and the Platelet level was only 25, which are extremely low, and the limit for getting a transfusion is 20 or below that. So on Wednesday I have to visit the hospital again and do yet another blood collection to check this out. I also have to be extremely careful now about how I act since the bleeding risk is very high and if I start to bleed from somewhere I have to call the Lymphoma team right away. Having low Leukocytes and being sensitive to infections I am very used to by now and low Hemoglobin value is something that easily can be treated so this I am not so worried about, but having low Platelets and a bleeding risk, this I have great respect for.
February 22 - The BMT team had said go ahead but still there are worries…
I woke up very early today as well, guess it must because I am quite worried about what the BMT team was going to say about going ahead with the transplant but it took until half past one in the afternoon when Dr. Monica finally called me.
That phone call made me once again extremely worried even though I should be very happy that the BMT team in fact had said go ahead with the transplant. Unfortunately these days there aren’t much at all that would get me in a state of extreme pessimism and worrying, and I can’t help that; there have been too many disappointments on this horrible journey of mine. So I have a hard time to see the positive in things and instead just see the negative. I don’t know if it maybe could be some kind of self defense to be prepared for the negative instead of seeing the positive.
Anyway, we are facing two issues now that might turn out to be a problem concerning the transplant. The first thing the BMT team are going to do now is to find out if the donor is actually still available, if not that could be a major problem if they have to start all over with finding another donor. The second thing is that they right now don’t know how to immune suppress me, to be able to administrate new stem cells to me. It’s necessary to suppress my current immune system when having the stem cells, otherwise my body would reject the foreign cells and this is basically the same philosophy as when having an organ transplant. So if the donor is still available they need to discuss further how to do this and my major problem are that I am not sensitive to many chemo’s and this is the most common procedure to suppress the immune system when it comes to bone marrow/stem cell transplants.
This last problem made me so very, very disappointed since my chemo problem has been a known factor since last summer and didn’t even come up in the discussion in November/December, at least not communicated to me, when the transplant was prepared and cancelled the last time. Another option to suppress the immune system is to use radiation therapy but this is also now a problem since I have been given so much radiation including the Zevalin isotope that they need to calculate how much radiation I have been given altogether, they can’t give too much radiation altogether either.
So altogether, this information I was given by Monica made me very sad and of course trigged my worries to be very extreme again. I mean; having one problem, that maybe the donor wasn’t available anymore that I was prepared for, but that there was going to be yet another problem, that I wasn’t prepared for at all.
Well, I got angry as well about the disappointing information but after a couple of hours I had calmed down a bit but started to think instead that I don’t give a damn about what happens now, I have had enough,this is torture when not having at least one really smooth ride…
Then nurse Wase from the Lymphoma team called me up at about 6:30 in the evening and when I talked to her I was myself again and not angry anymore. She wanted to have me to the nurses office for the blood collection tomorrow morning instead of going to the general blood collection place, in case I would need a Platelet transfusion, so I could be given that right away instead of going home in between.
February 23 - Platelets are still sinking but still no transfusion.
It got to be an early morning again to get in to the Lymphoma team to find out if I was in a need for a Platelet transfusion.
Nurse Seija took care of me when I got to the Lymphoma team me and I had agreed with Nurse Wase the evening before that I would get a needle set right away. To draw some blood from to check up the Platelet level instead of having first the blood collection done with one needle stick and then having the needle set if I needed an Platelet transfusion. After the blood was drawn I had to sit and wait for a while and after about half an hour the result came in. My Platelets are continuing to sink and was today at 22, but is not that much of a different from 25 two days ago. But I am getting closer to the limit of 20 so a doctor needed to be consulted if I should get a transfusion or not anyway.
The doctors were in a meeting so I had to sit for an hour or so and wait but it was kind of peaceful to sit there so I didn’t mind. Then Dr. Monica was consulted and they decided not to give me any transfusion today either, I have some bruises here and there which I don’t know where they come from, but are not bleeding from anywhere so that was what they based the decision on. But I have to get in there again on Friday for another checkup. So the needle was removed and I could go home.
Well, of course when you are concerned about being careful and not hurt yourself you’ll get very clumsy, on the other hand it wasn’t really my fault. I had just got up on the bus home and was walking towards a place to sit when the bus driver took off and I fell against a pole and one of my fingers took a small punch against the pole. It didn’t really hurt so I sat down but a couple of minutes later I was trying to bend the finger and felt that it hurt quite much. Hmmmm, I took off my gloves and looked at my finger which had started to swell and go blue. This is actually just what it takes to hurt yourself and get a bleeding when the Platelets are as low as mine are right now, so at the moment I am not doing any walks, just in case, if I should get unlucky and slip on a ice spot or twist an ankle or do something else really foolish.
February 25 - No transfusion today either, that’s good.
Jan had his birthday yesterday so we had a small birthday party for him. Elisabeth and I had on Monday after the doctor appointment decided to have some Champagne to both celebrate Jan and my forthcoming transplant. However, I said yesterday we have to wait to celebrate any transplant of mine and celebrate the birthday boy only today, until the transplant is a fact; there are still too many things to consider before the transplant will/could be planned and we can always have Champagne one more time. Right now I don’t dare to challenge my luck to celebrate before anything has been totally decided. However, that Champagne tasted really good and I hope we will have another opportunity to drink Champagne again, and next time hopefully for celebrating my transplant.
So early in the morning today Friday I entered the bus, train and then bus again to go to Sahlgrenska Hospital for my checkup today. My Platelets were today at 25 but as I had said before, it is not that much different from the other checkups this week. But since the Platelets have been quite steady during the week, together with the fact that my Leukocytes and Hemoglobin doesn’t seem to move down very much either, even if they have lowered a bit as well, it could mean that the whole thing has stopped moving down now and hopefully now soon will rise again and get back to normal. As long as I don’t have to have any transfusions, that’s good.
I have to continue though to go on regular checkups because of the still low Platelet value and will have another checkup on Tuesday. Hopefully on Tuesday we will see a turnaround and rising in the Platelet value.
March 1 – Immune system is dropping and...Oh no, this is not fair and really sucks, had developed shingle again.
For a day or so I have had this nagging pain on my chest and back and thought it was just that I had overdone something but this morning I realized that I had some sort of rash and blisters on my chest and on my back. My first thought was; Hmmmm, strange where did that come from, but I got dressed and then went in to my checkup at Sahlgrenska Hospital to do some blood work again to check up on my Leukocytes, Hemoglobin and especially the Platelets that has been so low for the past week.
Today I went to the generally blood collection place at the Hematology department instead of going to the Lymphoma team but it’s basically also the same place. The nurse, who draw the blood asked me if I should have some kind of treatment or so, this so she should know how she would handle the blood sample, that is how fast they needed to get it to the laboratory. Well, I told her about my low Platelets and that I had been on the border line for a transfusion for the past week and apparently that made them rush down to the lab with the blood sample. So I was basically in and out in about five minutes today and entered the bus again to go home.
It was on the bus home it all hit me like a punch in the face; Oh my god, could that rash, blisters and nagging pain be that I had developed a shingle again (sw. trsl: Bältros) which I had in my ear almost exactly one year ago at a time when my immune system was extremely suppressed. The symptoms I have right now are more or less from a school text book when it comes to shingles; the nagging pain and the rash with the blisters. Just a couple of minutes later still on the bus, my cell phone rang. It was Dr. Monica to tell me that the analyzing of the blood sample was already done. She told me that my Platelets were still steady and still very low, at 22 today, but now my Leukocytes also had started to drop in value and there was a risk that I would be sensitive to infections now or would be quite soon and that I now needed to be careful. At that point I understood that it was then mostly likely shingle I had developed so I told her about that, but also said that I wasn’t entirely sure. Well, Monica couldn’t do more than agree with me, the symptom for shingle was too obvious. So I was put on medication right away, Aciklovir, which is an antivirus medication. Also Monica wanted me to be sure that I had antibiotics at home as well, just in case, and the usually thing that I needed to call them right away if I developed a fever and that I had to visit them latest at Monday next week, both for another blood collection as well as a doctor appointment.
When I got home I looked at the rash again and became more and more certain that it actually was shingle. The pain is also so special, it feels like someone is twisting your muscles really hard now and then and then letting go and it comes and goes like this including the nagging pain that also is there all the time.
Well, I can only sigh to the whole thing, but also thinks that this is definitely not fair and that it really sucks. I can also only hope now that we caught it in time and that it won’t escalate and act as last year with a bacterial infection as well and with the most terrible pain I have ever experienced.
March 2 – The pain is slowly increasing...
Had a horrible night tonight, the pain are slowly getting worse and about 03:00 in the morning I couldn’t cope with it anymore and had to get up and take pain killers.
If I wasn’t totally sure about the shingle thing yesterday I am 100 % sure today. I can only hope that the more antivirus medication I put in my mouth the faster this will go away.
I also talked to my “probation officer” Lena yesterday about this and since I am bit scared of getting really sick now, she is a darling angel and will see to that she get in touch with me every day and if she can’t contact me in any way she will drive over to my house to check up on me. Tomorrow we will also try to go food shopping so I can fill my cabins with groceries in case I won’t be able to go food shopping from now on because of the infection risk or if I should get very sick.
March 4 – The shingle aka the plague is getting worse...
Oh dear how horrible this is, the shingle is getting worse each day. Today both areas with rash and blisters on my chest and back almost have joined each other with new blisters, which is one of the most common events that eventually will happen when it comes to shingle. It’s really hard to tell if the antivirus medication is actually doing it’s job or if it could been even worse if I haven’t taken them. Also, the whole thing looks so disgusting, almost like having the plague or something.
Nurse Wase also called me the other day and gave me a time on Monday for another blood collection as well as another doctor appointment so a doctor can take a look at this. Can only hope this won’t get too bad during the weekend since I would have hoped for an earlier doctor appointment. On the other hand, there isn’t much to do about shingle except taking these antivirus meds since it is a virus, same as chicken pox. At least for now I have still not developed a fever but my body is very tired, I am freezing and feel a bit cold all the time and feel somehow weak, but thank god, the pain have at least not gotten worse, no it have in fact relieved a bit, even if it’s there, nagging.
Darling Lena, my “probation officer”, came over yesterday and picked me up and drove me to a grocery store so I could fill up my kitchen cabins with food and I got as much food as I could carry, so I don’t have the shopping need again for at least a week. I also bought a new thermometer, since the one I had is about 20 years old and I felt I couldn’t trust it anymore. Thank you so much for your help and support Lena, you are a star.
March 11 – Doesn’t feel too good...
Well, I should have written in my journal several days ago, but haven’t really had the strength to do so. The shingle does really affect me and it feels like having the flue, except still no fever and at least that is good. But I am freezing and aching all over and for the past days I have been in bed more or less the whole time. Have been trying to find out how long this will last and found out that all together before it might be over could take as long as 3-4 weeks and that does not sound very encouraging to me. At least if I could see that there would be a turnover for the better, but it has still not happened much when it comes to that.
Anyway, I was on my checkup on Monday the 7:th with both blood collection and a doctor appointment with Dr. Monica as well as another blood collection yesterday with later a phone call from one of the doctors, however not from Dr. Monica. On Monday there was in fact at least one positive thing concerning the transplant even though that there has been some silence for a while and still are about the whole thing.
I was forced to take a taxi to the checkup on Monday as well as yesterday because of the infection risk but will probably not do so on the next checkup which is on Tuesday next week.
The blood collection taken on Monday showed that my Platelets seemed to have started to rise and was at 28 and yesterday at 26, still low but a bit better. My white blood cells, the Leukocytes, had lowered a bit more since last week but not much, but as Dr Monica said and as I know myself being a “lab rat” and all, we can’t trust that value completely since the shingle could be affecting that value right now. The Hemoglobin value has lowered as well but still not too bad.
Yes, she also looked at the rash and blisters on my chest and back and there was no doubt about that it is shingle but still it doesn’t seem to have become any bacterial issues about it, which is my biggest fear right now, since then it can become really serious since I am so immune suppressed at the moment. Another thing that could happen and become serious is if it changes area path and I start having rash and blisters on another part of my body, but still it looks as if the shingle is taken its natural course, if you actually could call it natural. But shingle is normally affecting just one specific part with nerves on your body but more areas can be involved if you are unlucky and could happen if you are immune suppressed as I am right now.
When it concerns the transplant Monica hadn’t heard anything about the donor yet, it is the BMT team who are responsible for this investigation. It is a bit disturbing that none of them seems to know yet if the donor is still available or not and I think this has taken a little bit too much time now to find out, which makes me think that this might actually be an issue now. Monica said she would raise this question at their weekly meeting, which should have taken place on Tuesday this week, but so far I have not been given any information about what they came up with.
However, Monica also told me on Monday that she had discussed the immune suppress problem, the issue about how they would suppressed my immune system, before I could be given the foreign stem cells/bone marrow, with a colleague of her who is a radiologist. They had agreed that they should not suppress my immune system with radiation, but instead take the classic road and do so with chemo therapy. The reason for this are that my intestines have been involved on both radiation therapies I have had, that doing this yet another time could cause some serious complications. So in the end I was a bit relieved that at least there could be one problem solved about the transplant but again, since I am the mighty pessimist these days, I am sure that when one problem is solved another one will pop up.
So right now I have started to be pretty convinced that they in fact have been forced to start all over with the search for a donor but it is pissing me off a bit that no one can inform me about what is going on. At the same time, when I am feeling as I am right now, I don’t really have the strength to care about it either and are not making a fuss about it. In fact I am not sure I can handle any information right now that says that they have been forced to start all over again, since that can take another 2-3 months to find another donor and then all the things they have done to buy me more time might have been for nothing….here we go again, the pessimist have spoken :-).
March 11 – EXTRA: The mighty phone call from the BMT team - The transplant is scheduled...
The spring is here even though it’s snowing :-) ...
I am writing this on the morning of March 12 and I haven’t really slept at all during the night. Approximately four hours after I had written the March 11 notes, at about four o’clock in the afternoon, my cell phone rang. It was nurse Katarina from the BMT team and she had some wonderful news to tell me. The donor had been reached and the dates and plan for my transplant are now in action and set again.
I could only whisper oh, oh, oh, oh in the phone and said; now I think I will start crying and Katarina replied to me that she would do the same. But I didn’t start to cry until I was in bed later in the evening, at that point the thoughts and the whole thing came over me and the tears just started to flow.
Katarina told me the dates for the admission to the hospital and on which day the transplant would occur, but at this point the dates are preliminary for a while but at the same time scheduled. She also told me a bit about the donor; which sex, young or old and from which country. This is about it what I will be told about the donor right now, later I will get an opportunity to thank the donor in some way but I am not sure how this will be done, if I by then get more information about the donor or not. However, the information I have gotten about the donor I will keep to myself for a while. I can tell you though that the donor is not from Germany which I had thought from the beginning.
There will also be a lot of investigations before it all happens, among other things another CT scan will be done. The one I had some weeks ago will be at the time for the transplant too old. Katarina told me that about one week before I will be admitted to the hospital the CT scan will be scheduled and I can only hope now that this CT scan is just a sort of zero evaluation before the transplant will take place and that it won’t spoil the whole thing once again. But all of this investigations that needs to be done, I will be informed about in a near future.
Please, Please, Please don’t let anything stop this now.
March 15 – The shingle is slowly turning over for the better. Blood collection today...
During the past days I have finally been able to see that the shingle is turning over for the better even though it is going very slowly and the pain is still there, but at least the blisters has dried out and the rash that have been very red in color has started to fade. I do wish the pain to go away now as well so I can start taking my walks again.
Today I have also been to the generally blood collection place at the Lymphoma team and had the usually blood collection done. I had just got home from that when Dr. Monica called me about the results. My Leukocytes and Hemoglobin is still dropping in value but not much from last blood collection last Thursday. The Platelets had of today gone up to 30 so I hope now that this really means that they are actually rising for real this time.
We also talked a bit of the transplant but not much, it is now the BMT teams responsible and Monica is not any expert of it even though she knows a lot anyway. I was a bit curious about which chemo therapy they would give me when immune suppressing me before the transplant and Monica could tell me which one, or maybe I should say which ones. There will be a combination of different kinds of chemo’s, and most of them I haven’t been given before. Unfortunately then these chemo’s is out of Monica’s expertise since they are not given these at all at the Lymphoma team so only the BMT team have the knowledge about them. The reason for me asking this question is that I would like to be prepared for how the chemo will affect me, how I will feel and if I will lose my hair again. So I will ask the BMT team the next time they contact me.
Monica then ended the phone conversation by saying that we now have to keep our fingers crossed that it all will keep its steady state until the transplant can be done. So I am now in exactly the same situation as I was I December, really happy about that the transplant is in action, but this time also extremely worried that something could happen that would spoil the whole thing once again. So again when that CT scan is coming up…well, what can I say more than as usually I will be terrified about what it will show.
March 16 – The BMT team have called again...
This morning I had yet another phone call from nurse Katarina of the BMT team, to tell me that a letter had been sent to me with information what will happen the next coming weeks, which investigations that will be performed. I did ask her however which ones it will be over the phone and……Oh dear, this will be a full time job, that’s for sure.
I’ll see if I remember them all:
The CT scan (which I already knew of course), a lot of blood collections, x-ray of lungs, x-ray of the sinus to see that I don’t have any infections that needs to be handle before everything is in action, lung function test, kidney function test, ultra sound of the heart, ECG (Electro cardio gram). Phuii, I think this was all, but I am sure I have forgotten something, but the letter is suppose to tell me everything that I need to know.
I also asked Katarina which chemo’s I will be given and this time I wrote down the names of them and will Google them later and see what kind of side effects to expect. I was also informed that they would start the chemo’s basically right away after my admission to the hospital, after they had set the central vein catheter. The catheter thing I knew from before and that procedure is not something I am looking forward to, but at the same time I prefer to have that instead of having all those needle sticks.
Katarina also told me how the procedure with the donor is going to be done. That the cells from the donor will be collected the day before my transplant and if they don't manage to get enough cells in one collection they need to continue with a second collection the next day, which then would be on the same day as my transplant is scheduled and if that should happen the transplant would be performed in the evening, otherwise sometime during the day. However, they usually get enough cells on just one collection but that I need to be aware of that it could happen that they need more than one day for the collection. Also, someone from the BMT team will be flying over to the country in question and pick up the cells in person.
Well, there are a lot to take in and absorb and I am trying really hard to keep my faith up that everything will work out as it should. Please, Please, Please....
March 23 – The Birthday party, The letters with all the investigations and the big surprise...|
Been away for the weekend to celebrate Elisabeth’s mother’s 75 years birthday down in my home town Karlskrona and it was a lovely party and it was nice to see all the family members of Elisabeth again. Thank you so much for inviting me, you are such a lovely family and I always have a very good time together with you all.
Elisabeth with the birthdaygirl her mother at the 75 years birthday in Karlskrona.
Me and Emelia at the 75 years birthday in Karlskrona.
Got home late Sunday afternoon, very tired, and a big surprise were waiting for me. Some of the Sälen/Champagne sisters and friends had arranged a present
for me, a “Feeling Well” gift with among other things a couple of bottles of wine and flowers. We are this week having the “Always Sälen Week 12” trip
for obvious reasons I can’t go this year, for the first time in eleven years. My dear Champs sisters and friends; Anna-Karin, Carina, Katarina, Anki, Helene,
Kerstin, Kicki, Susanne, Christel, Lotta, Anette, Suzanne, Camilla and Borås Repro…..THANK YOU SO MUCH, that was so sweet of you, it was indeed a
nice surprise and believe me that the tears started to flow.|
Also a bunch of letters from the hospital had arrived while I was away, with all the scheduled investigations I need to do before the transplant. As I had said before, it will be more or less a full time job, even though they have managed to try to schedule the investigations I have to do in a way that I at least don’t have to travel to the hospital every day, but still quite a few days will be occupied. So when the Champagne bus leaves for Sälen tomorrow morning, I will be sitting at the hospital for the first of many investigations and I will be thinking about you all and I'll hope you all will have a good time.
I also had gotten the letter from the BMT team that I knew from Nurse Katarina had been sent to me. Among other things it contained a schedule how my first week at the hospital would look like. It was interesting to find out what would happen but also a bit scary, especially with all the chemo’s I would have for several days. Yes, I did Google very shortly about how the different chemo’s would or could affect me and at least one thing looked promising, I couldn’t find out anywhere that I would lose my hair again. Yea, I know it’s not a big deal and ridiculous with the hair thing considering it all and I would of course accept losing the hair again if I had to. But of course there will be a lot of other side effects, as it is with every chemo, such as nauseous for instance.
Yesterday I also had the weekly blood collection with some more blood analyzes than usually taken for the past weeks and since no one called me from the Lymphoma team during the rest of the day, I assume that the results weren’t too bad and hopefully the low values has started to rise again.
March 26 – Almost two full days of investigations are complete...|
Wow, I am so tired after spending almost two full days at Sahlgrenska hospital doing almost every one of the routine investigations that needs to be done before the transplant. As far as I know right now the only investigations left at this point is that hated CT scan that could spoil everything again and the ECG and some more blood work and the two latest might be done on day one after been admitted to the hospital ward. Of course any of all these investigations could spoil it as well, but for now they don’t really worry me that much.
Started up on Thursday morning by taking the bus to the hospital and went straight to the X-ray ward. The first investigation was to x-ray the sinus to see that there were no infections that needed to be taken care of. After that was done I had to sit and wait for about 20 minutes and then the x-ray of the lungs was done as well. No results were revealed to me about these two x-rays, but I don’t feel anything that could be suspected as an infection so hopefully everything is ok here.
After these two investigations were done I had to sit and wait for the next one and since I didn’t feel of doing anything in the meantime I found myself a bench in the sun and sat there for several hours. Phuii, it was a long wait and I really felt that my butt could have needed a massage after that but it was nice in the sun and actually quite warm when sheltered from the cold wind. The only move I actually did during this waiting time was to go and buy some lunch and then back to the bench and sat there again eating my lunch.
Then finally I could go and do the ultrasound of my heart and this I have never done before so I was a tiny bit nervous about it. Not so much because of the investigation itself, an ultrasound is as far as I know always harmless to perform, but I had no clue in what shape my heart would be in, even though I have never suspect anything wrong with it. This time the lady that performed the ultrasound told me the results afterwards and she said something like this; I can’t find anything wrong with your heart and it will continue to pump for a while more. Hmmmm, I am not sure that this was a very wise remark to say to a person in my situation but she was probably just trying to be nice and of course I was glad that everything looked ok there.
Early Friday morning once again entered the bus to go and do the next investigations and the first one was the kidney function test. This investigation I had done before, in May last year, before I was going to get the heavy chemo therapies that lasted through the whole summer. At the time my kidneys was just fine but since chemo can affect the kidneys in a bad way I don’t know how much damaged the chemo could have done to it all so this test I was also a bit worried about. I have however taken a blood sample (creatinine) several times afterwards, this was included in last blood collection as well, and I think that if my kidneys are damaged in any way that blood sample should have showed it. This test was performed by that first a needle was set in my arm and a zero blood sample was drawn and then a substance was injected that my kidneys are suppose to filtered out in a certain amount of time. So I was let go for four hours, still with the needle in my arm, and then I had to go back and have some more blood drawn to measure how much of this substance that was left in my blood.
In the meantime I went to the next investigation that was to check out my lung function, the lung capacity. This I had never done before as well and to my surprise it was harder to do than I expected. I had to do two different exercises blowing into a machine in certain ways and both holding my breath for a long time as well as blow out air, empty the lungs, for a certain amount of seconds and this was not easy to do at all, especially not since you have to do the whole thing looking at a schedule how to do it at the same time. And not to mention the lady sitting next to you shouting; Hold your breath now, come on, come on, come on, a little bit more, a little bit more, a little bit more….And then the same procedure with blowing out; Blow out hard, come on, come on, come on, a little bit more, a little bit more…
Phuiiii, I was glad when this was over. I would have been interesting to find out the results here but the lady told me straight away that she wouldn’t reveal any results to me, that a doctor would look at the curves/result and write a statement and then send it to the transplant team.
After the lung function test I was back to the same bench as yesterday, sitting in the sun and just waited to go back to draw the blood for the kidney function test and when that also finally was done I could finally go home. I was sooooo tired by now so it felt really good to know that I will be off the hospital duties for at least a few days.
I have been extremely tired for the past week and this time not so much because of my previous sleeping problems. No the shingle is still affecting me and still hurts almost all the time. It feels a bit like you are having a terrible sun burn, now I understand why this is in the old days was called “hell fire” or something like that, so every time I move in bed during sleep I wake up because it hurts. Also even though the rash and blisters are almost gone now, you can still see the affected areas and it itches quite a bit and since the nerves are involved and you try to scratch somewhere, it hurts in the whole affected area and not just on the spot where you scratch.
But I try not to scratch too much even though the itching sometimes drives me nuts but if I do, I do it very gentle, I can’t afford now to get any open wounds that could get infected.
March 31 – The transplant is cancelled...
I am writing this on Saturday April 2 and haven’t really had the strength to write everything that has happen the last couple of days. The transplant is once again cancelled and I am not feeling that well right now, I am more or less devastated; I was so close…..
April 10 – Thank You all so much for the attention on my birthday and for the support...
Thank you all so much for text messages, e-mails, cards, facebook messages etc. on my birthday as well as the support after the sad transplant news. I need to thank you all by writing this here since right now I feel really weird and totally wacked because of a new drug I am taking so even writing a few words here is not easy.
Thank you all so much again.
Me and my birthday cake and even it doesn't really tell I was feeling really weird.
April 16-31 – Well, what did go wrong?
Yes, what did go wrong this time? Well the same thing as last time happen, my illness were not as steady as we had hoped for after all radiation therapies, isotopes etc, which were something that was necessary for the transplant to happen.
But I was so close this time and had completed all of the planned investigation and one of the last investigations I did was the CT scan and this then showed that my lymph knots had begun to grow bigger again. So the plan, if it would have happen, was that I would have been admitted to the hospital on April 5, just five days after I got the word what had happened and the transplant itself was going to take place on April 12 after five days of immune suppress chemo treatment.
Monica my doctor offered me right away in the same phone call as she gave me the information that they had cancelled the transplant, to try an alternative drug, and of course I said yes right away. Unfortunately this drug had a huge amount of bad side effect which now is affecting me a great deal so I can barely function. I’ll write more about it next time...
This comment was written in October of 2011:
I spent most of the time in April with Elisabeth and her family and most of the time just sat in a chair and didn’t have the strength to do much. But I tried to participate as much as I could in everything and on the Easter weekend Elisabeth invited the Champs girl for a little party and we had a good time. But most of April I also felt so low and depressed and some days I didn’t have the feeling to even put on some real clothes or makeup so I was most of the time also feeling extremely ugly, my thoughts were; what’s the point. So I hated see myself on pictures since I felt so ugly, so the two pictures below were actually taken in April but I didn’t put them in the journal until 6 months later.
Beautifully Rebecka, the beauty and myself the ugly beast...
Lena, me and Elisabeth at the party on the Easter weekend.
May 10 – Still here, despite everything...
Just a quick note that I am still with you but are at the moment feeling a bit so, so. I am writing down most things that have happened lately to put in here, but it takes time now, can’t say I am doing so well. But it will get here eventually even though everything I do right now is like climbing Mount Everest, even the simplest things...
May 21 – Coughing, Coughing, Coughing, been so sick lately...
Well my bad luck seems to keep on going. Exactly one week ago, last Saturday, I developed a high fever and couldn’t really find out why. The only thing I could feel was that I had a hard time to take a deep breath and going up the stairs made me start breathing heavily, even though not carrying anything heavy or so. So on Saturday evening I had to call the Hematology doctor, that was on call during the weekend.
Since I am extremely sensitive to infections right now, have very few Leukocytes and have had that for some time now, the doctor put me on two different antibiotic’s, trying to cover at least two different kinds of bacteria areas, since we couldn’t really tell what was wrong. Then I needed to call the Lymphoma team on Monday to give them an update how I was feeling.
Then on Sunday I started to cough a very dry irritating cough and the high fever was still there. So on Monday I called the Lymphoma team to give them the update and talked in a message on their answering machine and was expecting a call back during the day. That call never came. So the next day, on Tuesday still with high fever and all, I took a taxi to the Hematology department to have my ordinary weekly blood samples taken. When I arrived there Nurse Seija happens to see me coming and now they had noticed my message from the day before and were just about to call me. To make a long story short it ended up with me sitting there for several hours before my blood samples had any results, including a sample that measure infection levels (CRP) and a doctor could take a look at me.
It happened to be so that Dr Monica was there so when finally the CRP result was in Dr Monica came and picked me up. She listened to my lungs and checked out the results of the blood sample and told me that she had been afraid that I had developed a blood clot in my lungs but right now there was nothing conclusive that said that was the case. The reason for this fear of her is that this new alternative drug I am going on now, the most common bad side effect of it, is blood clotting, so I am taking blood thinning shots every day but just in a small dosage and for precaution. Anyway, she put out the alternative drug, which by the way is called Revlemid, for the time being and then I could go home and come back on Thursday for another blood sample collection including the CRP, which by the way had been rising but not enough to that it could tell if it was a bacterial infection or a virus. Including on the Thursday sample collection was also a sample that is called PD Dimer that could tell if you have a blood clot or not. Monica was pretty sure I didn’t have a blood clot but she wanted to see the results of that blood sample anyway, better to be safe than sorry.
So I was home again, and basically all this week I have been lying on my sofa, with no energy what so ever and also I had no feeling for eating anything. I kept coughing like crazy and the high fever was still there. Then on Thursday I went in to the Hematology department again for the blood collection and later Dr Monica was going to call me about the results. She called me late in the afternoon and the CRP was slightly higher but the PD Dimer result was not normal but slightly too high. But a slightly too high Dimer result doesn’t mean exclusively that it is a blood clot, no it could also mean that a inflammatory process are going on somewhere. But then Monica asked me about if I had any problems with shortness of breath and I realized that I hadn’t told her about my problems with the stairs that after coming up to my apartment I had to sit down and breath heavily for several minutes, but this had been going on for a while, but had been worse this last week. That made Dr Monica take the decision that we needed to do a CT scan of the lungs to be sure there was not a blood clot anyway and she was going to sent a stat referral right away to the x-ray department and it could mean that they could call me in that same evening.
Now I began to be quite scared, I am sure every one of you out there knows how extremely dangerous Pulmonell emboli (Sw transl: Lung emboli) could be.
Anyway, they didn’t call me in that evening and of course I had a hard time sleeping, thinking; what if it actually is a Pulmonell emboli I have, oh my god. No, they did however call me early morning the next day, on Friday, and told me to be there at 13:00.
So I went there, had the lung CT done and then went home to wait for the results, Dr Monica was going to call me when she had the results. Late afternoon Dr Monica finally called and by now I was climbing the walls out of nervousness.
Dr Monica told me that it wasn’t a Pulmonell emboli I had, Thank god. No what I had was some sort of Pneumonia (Sw transl: Lunginflammation) including fluids in the Pleura (Sw transl: Lungsäck). The latest is probably something I have had for a while because the heavy breathing after walking up the stairs I have had for a while but not as bad as right now. I was so relieved to finally get a diagnosis of what kind of infection I had. Dr Monica wrote a prescription of a Sulfametoxazol (Sw transl: Sulfa) drug and I went straight to the pharmacy to get it, it was just about closing time.
Got home again and took the first two pills right away, Monica had prescribed a double dosage instead of the normal dosage, together with a cortisone pill which also was prescribed. Then finally about 4 hours later I could already notice the effect. The fever had dropped a bit compared to the other evenings in the whole week. And after a night sweating like crazy, and for the first time for a whole week my temperature was normal when I woke up this Saturday morning.
What a horrible week this has been. Now, it will probably take a while before I am totally ok, but just seeing the quick result of getting the right medication and diagnosis made me get at least some energy back but are still a long way from being back in shape.
May 26 – Much better now, the meds are working as they should...
Well, well, yet another problem is hopefully solved. The meds prescribed by Dr Monica worked right away and as of today I can even walk up my stairs without collapsing, the fever and the coughing is gone. The energy is slowly coming back as well as the appetite for food, but I have lost 4 kg the last month or so and this is not good at all for me.
Went in to my ordinary blood collection on Tuesday and then later Dr Monica called me to tell the results. Besides the blood collection they also did a swab far up in my nose, which wasn’t that pleasant. The reason for this are that they would like to confirm that the pneumonia I got were base on a fungus (Sw transl: Svamp) called Pneumo Cystis which is quite easy to get when the immune system is very suppressed and there aren’t much to do to avoid it, as far as I could understand when I read about it, these fungus spores are in the air everywhere. But also when reading about it I realize that basically all the typical symptoms were the one I had and I could have had it for a while, even for a whole month, before I noticed it. But all of this is not confirmed just yet, from the nose swab, it takes a few days to analyze the sample, but everything points in this direction, that it actually are Pneumo Cystis I have.
My CRP was now back to normal but my immune system seems to have park it selves on a very low suppressed level; that is the Leukocytes are still very low and I am still extremely sensitive to infections. Monica then decided it was time to get the Leukocyte stimulate shots besides continuing with the Sulfa drug and the cortisone, so I better could fight this. So I started with these shots yesterday Wednesday and will take them each other day three times. I have taken these Leukocytes stimulating shots before and they are usually very effective.
Next week I have another CT scan scheduled and that one was suppose to be the evaluation, to see if the Revlemid drug had helped at all, but due to the fact that I got sick now, I haven’t been able to take all the planned pills. But Monica wanted to go ahead with the CT anyway to both to see what have happen in my body lately and also so she can take a look at my lungs and see if there is an improvement in the Pneumonia thing. But I already know now that one of the growing lymph knots I have behind my breastbone, between my lungs, had grown a little bit bigger since last CT, this was shown on the lung CT I did last Friday. So I would say that continuing with the Revlemid drug is something I don’t think is a reality anymore, unless Monica thinks that it might at least have slowed down the growth process, maybe the CT scan also tells a completely other story about the other growing lymph knots I have.
May 27 (written June 18) – The result of the nose swab came in...
When writing this it is already June 18 and I haven’t update the blog for some weeks now due to the fact that the past 3 weeks have been awful to say the least, and a lot of things have happened and I haven't been feeling that good, so it will take a while for me to get up to speed again.
Late Friday afternoon May 27, I got a call from Dr. Monica who told me that they now had received a preliminary result from the nose swab I did a few days ago and it was a fungus I had in my lungs alright but not just any fungus, it was Aspergillus (Sw. transl: Mögelsvamp) and I needed to have another drug right way, the one I was taking was not good at all, and for a immune suppressed person Aspergillus could be very dangerous. Thank god I got those Leukocytes stimulated shots that were as effective as expected and my Leukocyte level had risen very well. However, the Aspergillius also needed to be analyzed even further to know what type it was, and that would take another few days.
So I took off right away to get that new drug and started up with it that same evening. Monica did warn me on the phone that there were some really bad side effects and that I should be aware of that. Wow, even though I was then a bit prepared for the bad side effects I had no clue at that point how awful it was going to be. The first 24 hours I had to take double dosage and that first evening I took the drug just shortly before I went to bed and when I got to bed the little light coming in through my window was blinking like crazy (in reality the lights were not blinking at all), that was the first side effect that kicked in, strange visions, but the next morning I was really going to be aware of the bad side effects of this VFEND drug.
The next morning about 20 minutes after taken the drug again the bad side effects really kicked in. I started to see everything in strange colors, the room seemed to shrink towards me, and it also felt like I was going to fall down any second, so I had to go and lay down in case I really would fall down on the floor. What side effect was this? Yes, hallucinations which I have never experienced before and it was totally horrible. So this drug more or less destroyed and controlled my life for some time ahead. I also became afraid of going out since I got really dizzy in my head, and if I had to stand up and stand still for some minutes I needed to have something to hold on to. I even took side steps now and then and I was really afraid someone would see that and think I was drunk. So this made it hard for me to function what so ever, even though it got a bit better after lowering the dosage to the normal one. Besides this really horrible side effect there were a huge amount of other side effects and maybe one or two of them started a few days later to kick in as well, but at the same time that is hard to tell, I’ll will come to that later. Besides this new drug I should also continue to take the cortisone pills.
May 31 (written June 18) – The doctors have now given up on me, but...
I went to the CT scan and then the doctor appointment a couple of hours later. Dr. Monica then informed me that the CT had shown a fast growth of lymph knots in my belly and that proved that the Revlemid drug hadn’t helped. Dr Monica then told me that now she didn’t have anything more to offer me concerning treatments, nothing seems to fight my Lymphoma.
Somehow I was prepared for this to come now and I managed to stay calm while I still didn’t want to give up so Monica and I continued our discussion and finally she came up with another option when I said that I would be satisfied if we at least could try to keep the Lymphoma in some kind of steady state or slow it down. One positive thing came out though out this meeting and that was that the Aspergillus in my lungs were almost gone including the fluid in the Pleura, even though I had been given the wrong drug for it, Monica thought it might have been the Cortisone pills that could have done the trick. But despite that my lungs looked good she wanted me to continue for a while more, both with the VFEND and the Cortisone.
Back to the new drug option, which was a mild chemo taken in pills and usually the patient didn’t feel bad because of it, however since it is a chemo the immune system will drop again, but hopefully not so much as before. I had a feeling that Monica just was trying to be kind to me by offering this option, since she didn’t tell me about it right away and I am very doubtful that it had slipped her mind, but I still refuse to give up. The drug is called Ixoten and to be honest with you, it is considering a drug you’re given for palliative care.
But despite the mostly bad news I left the hospital and still felt pretty good, the new growing lymph knots in my belly didn’t bother me in any way at this point. Monica did however had to apply to the Swedish Medical board to be able to give the Ixoten drug to me, since it is not on the market anymore. It’s a licensed drug which means that you have to apply for it at the Swedish Medical board and this should take a few days before I had it in my hands after the Swedish Medical board had approved the application from Monica. She thought that most likely I was going to be able to start the Ixoten drug on Tuesday the 7:th of June because now there were two different Swedish holidays coming up and everything would be closed. Of course something should happen that made me not be able to start with this chemo until the 14:th of June because the Swedish Medical board made a mistake as well as for closed pharmacies etc. The pharmacy was going to call me when the approval came in and I could come in and get the drug and that didn’t happen for while...
June 2 (written June 19) – Have started to gain weight in a disturbing way...
During my Pneumonia period with fever for a week and all, I lost my appetite and even though I tried to eat I lost a lot of weight, 4 kg, and that was not good since I was kind of thin even before. So after the fever was gone and my appetite was back I concentrate to eat as much as I could and ate at least two cooked meal per day and slowly after that I started to gain weight again, like 0,5 kg per day. You might think, Wow 0,5 kg per day that is pretty much, but to tell you the truth I ate constantly and it might also have had something to do with the Cortisone pills as well, since it could raise your appetite.
So imagine my surprise when I this morning, standing on the scale, I had gain 2 kg over that past 24 hours. Hmmm, very strange I thought. But the next day on the 3:th of June I was back to 0,5 kg per day again and I thought that; well it must have been a coincident.
It wasn’t a coincident. The next day again, on the 4:th of June I had gained another 1 kg and the next day again another 1kg. Now I started to think, something is definitely wrong here, have I started to keep fluids inside?
June 7-10 (written June 19) – Still gaining weight and still no call from the pharmacy...
On June 7 I realized that I had gain 4 kg in weight for the past 5 days, and I felt that I was some kind of swollen, particularly in my both legs, but still it didn’t worry me that much until this late afternoon. Elisabeth came and picked me up so we could spend some time together for a couple of days. By now I hadn’t seen her, Jan and the kids for a month or so, so it was very nice to see them again. We went to the shopping center in Kungsbacka at first to do some shopping and to have some lunch. It was at the lunch table I realized that my feet had started to swell like crazy and I haven’t had any problems with my feet before.
Two days later, on June 9, I went home and by now I also had started to notice that my belly also had started to swell and it pressed upwards towards my lungs which made me start taking short breath and it also hurt a little bit in my stomach just beneath the ribs. When I stood up on the scale this morning, another 2 kg were there. What the hell is going on here, I thought, at this point I had gained 7 kg in about a week and it was definitely not caused by eating a lot.
By now I had also started to be concerned why I hadn’t heard anything from the pharmacy about the Ixoten drug, so before I went home I went in to the Sahlgrenska Hospital pharmacy to get some more VFEND and also to investigate why they hadn’t call me yet about that I could come in and pick up the Ixoten drug. Unfortunately most of the drugs I had been given for a long time are not available at any pharmacy so most of the time I had to go the Sahlgrenska Hospital pharmacy to get them and their opening hours are not that good.
Anyway, I got to the pharmacy and when it finally was my turn the pharmacist started to investigate what had happened with the Ixoten. She found out that Dr. Monica’s application had been sent in on the same day as I met her last, on May 31, so everything was correct there, but that they still hadn’t got the approval from the Swedish Medical board. She told me she was going to call them the next day, they were themselves just about to close for the day, and find out what had happen and then call me.
Unfortunately I didn’t get the call from the pharmacy until 6 o’clock on Friday evening on the 10:th and I got the information that everything was sorted out now, the Swedish Medical Board had faxed the approval to the wrong fax number and in fact approved the application quite quickly. Since it was now after closing hours for the pharmacy and they were closed over the weekend I was not able to get the drug until after the weekend.
I have to admit that this unprofessional act made me quite angry, because of the big delay that now would end with a delay of a total 14 days after Monica’s application had been sent in, before I finally could start with the new drug. How the hell could a big government not check that they are faxing important and personal documents to the correct fax number, that’s one thing, and also where did that fax end up with personal details of myself, at a grocery store??? And why does a big government still uses fax machines, they are ancient history to me.
June 13 (written June 20) – The result of the type of Aspergillus came in...
I forgot to write something in last comments. Since I was fairly convinced that the gaining of weight had something to do with keeping fluids inside, I googled trying to find out if there was anything I could try to do myself to get rid of the fluids. I found out that there are various kinds of herbal teas that might do the trick to get rid of body fluids, especially the tea of the flower Dandelion (Sw. transl: Maskros) was suppose to be good. So before the weekend I went to a health store and bought that tea and in fact I thought it helped a bit but not much. But this morning I had lost 0,5 kg instead of gaining weight and I thought, yes finally this weight thing had turned around. I had by now put on 9 kg in weight and my swollen belly really ached because of the pressure as well as legs and feet.
While I was going to take the Ixoten drug I also had to continue to go and take some blood collection once a week. Both for checking the Leukocyte levels as well as the liver since the drug can affect the liver as well, so this morning I went in to Sahlgrenska to both have that done and finally be able to pick up the Ixoten.
While I was sitting and waiting for my turn at the Hematology blood collection place my phone rang. It was one of the doctors from the Lymphoma team that told me that the result of the typing of the Aspergillus had come in and that the drug, the VFEND with all the horrible side effects, I had been taking for the past 18 days was no good for this type, in fact had no effect what so ever. So I had to change the drug once again, to another one specific for this type of Aspergillus, and the drug was called Noxafil. I had to stop taking the VFEND right away.
First I could only sigh to the whole thing, it had now taken over a month to get the correct medication to what really had caused my pneumonia, at the same time I was soooooooo relieved to get rid of that horrible VFEND that caused so many problems. You might wonder why I had to keep taking drugs for the Aspergillus, when somehow some of the drugs I had taken actually had helped, but the truth is that Aspergillus is very difficult to get rid of and can come back so the normal treatment is that you have to keep taking drugs for it for a pretty long time, even after it had appeared to have disappear, it can easily come back.
The doctor also as always asked how I was doing in total and how the Ixoten drug was working. I told him about the Swedish Medical Boards mistake and that I was going to pick the drug up after I was done with the blood collection and start with it later that evening. However, I didn’t mention anything about the gaining of weight which was extremely stupid, but I honestly thought that this morning it had turned around, but I was sooooo wrong about that.
So after the blood collection was done I went to the pharmacy to pick up the Ixoten as well as the new drug for the Aspergillus. After I had come home I then sat down to read the information document inside the drug boxes, to be informed about any bad side effects. To my relieve the Noxafil didn’t have as bad side effects as the VFEND so after starting with this I didn’t have to suffer any more of the VFEND’s bad side effects, thank god. However, when I opened the Ixoten drug package I found out that all the information was written in German. I can slightly read German but this was way too hard to understand. No big deal, I thought, I will look it up at the internet. To my surprise I couldn’t find anything useful on the internet as well, so this made me not dare to start the medication that evening in case I would start feeling bad in some way that I wasn’t prepared for, but I thought, what are a few more hours compare to all this delay alltogether. So I decided to wait until the next morning.
June 16 (written June 20) – Had to call the Lymphoma team for help...|
On the morning of June 16 I realized that I now had to get some help with the weight issue, another 2 kg was put on for the past two days and in total I had now gained 11 kg in 14 days. I could barely walk or bend because of the swelling in my legs and feet as well as on my belly and I could hardly breathe because of the pressure up towards the lungs. So I called the Lymphoma team first thing in the morning.
Elisabeth was suppose to come over and have a cup of coffee but she called in the morning and suggested that she instead would come and pick me up so we could spend the day by the swimming pool since the weather was very nice. I accepted that proposal right away, but said I just have to wait to get the prescription for something for the fluids first.
After a couple of hours one of the doctor's called me up and we decided to try home medication first to get rid of the fluids before trying to do anything else. If this didn’t work I probably had to be admitted to the hospital and get heavier medication than the medication I got to try at home.
So Elisabeth came after that and picked me up and we drove down towards Kungsbacka and stopped at the pharmacy on the way. Thank god, the drugs I got are that common so no going to the Sahlgrenska Hospital pharmacy was necessary this time. Immediately after I got out from the pharmacy, in the car, I put in the first Furix pill, I was very desperate at this point to get it to work as soon as possible. I also got a prescription for Potassium (Sw. transl: Kalium) since I was now going to pee so much that I would lose a lot of Potassium and this is not good to lose too much of that.
However, there was also one other thing I was informed about from the Lymphoma team when I called them up first thing in the morning that got me a bit worried. The blood collection I had done a few days earlier had shown a slightly raised Creatinine value, which is a measure of how the kidneys are doing. I haven’t had any problems with this before so it was not any good news, this could also be one of the reasons why this problem with keeping fluids had started, that the kidneys didn’t work properly. But the value wasn’t sky high but even so it got me a bit worried.
Me standing in the pool with my swollen belly and legs.
Altogether it is very hard to tell right now why all of this suddenly had happened, could be a numerous of reasons. But one reason could be that the
VFEND drug could have caused it since some of the common bad side effects are precisely what just have happened, kidney failure and edema. One other
reason, and this is not what I wish for, is that the new swelling lymph knots in my belly could somehow now affect me, now I could also feel them from
Anyway, we got to Elisabeth’s house shortly after the visit to the pharmacy and we had a very nice day by the pool. However the water in the pool was still not warm enough to bathe in, but the day was so warm so we now and then got to the pool stairs to cool down the feet. In the evening Elisabeth’s son and his girlfriend cooked us dinner and we had a nice evening together, so altogether it was a very lovely day.
Hmmmm, what about the peeing? Oh Yes, it started about 30 minutes after I took the first pill and kept on going for another 4-6 hours which is the amount of time the effect should be there, I had to go to the bath room many times during those hours. I was suppose to take just one pill per day, but I wanted this to ease as fast as possible so I took another one in late afternoon, and got to pee some more.
The day after I could already feel that at least something had happen because of all the peeing even though I didn’t expect it to go so fast. I decided however to wait to the morning after to check the weight again. At lunch time I then went home.
June 18-19 (written June 20) – Thank god, have lost weight...|
When I got up in the morning of June 18 I was a bit nervous stepping up on the scale to measure the weight, I was afraid that I would be very disappointed if nothing or very little had happened with my weight, even though it felt like something had happen. To my surprise I had lost 3,3 kg and this not even in 48 hours. Yippeee! I decided to continue to take two pills per day instead of one at least over the weekend to get a fast result, after that I didn’t dare to continue doing that. To tell you the truth you shouldn’t fool around with drugs like this by yourself but at the same time I had it under control and the drug is not dangerous or so, but keep doing this could change the balance of your body fluids in a serious way and that is not good at all.
The next morning, Sunday June 19, I had lost another 1,1 kg so now 4,4 kg altogether was gone since Thursday morning and by now I really could feel the difference in the swelling of my body. Today the swelling of my legs and feet were almost completely gone as well that I could breath easily. But my belly is still bothering me and is still quite swollen, especially in the morning after a night’s sleep, but I can feel the difference here as well, mostly because of the pressure upwards toward the lungs that had been much better.
Hopefully after a few days of more medication that swelling is under control as well.
June 21 – The weight lost has slowed down and blood collection...
I am back on track now concerning the journal and if you have read the past 3-4 weeks notes you will understand why, haven’t been feeling so good. Still I can’t say that I am ok in any way but at least it is a little bit better.
I am standing on the scale every morning to measure the weight to be sure that the medication do its job to get rid of the fluids I still are keeping inside, still my weight are like 6 kg too much, but now things seems to have slow down. Yesterday morning nothing at all have happened and I was very disappointed and as of this morning I have just lost 0,5 kg. That weight lost is too small to say that it actually contains fluids and not are a normal lost. Guess I have to be patient but at least I have now lost about 5 kg and hopefully all that is fluids.
Today I also went in to the blood collection place at the Hematology department and took my weekly blood samples. I can only hope that my Leukocytes haven’t dropped too much after one week of taking the Ixoten drug, I definitely do not want to be back to the “sensitive to infections” thing so soon again. I am also a bit concerned about how the kidneys are doing, if the Creatinine value has raised some more or not.
I didn’t take the Furix pill this morning because I was going to sit on a bus and at the blood collection place and felt that I didn’t want the need to go to the toilet all the time so I waited until I got back home. But what I notice by doing this was that all night, this morning and before I got back home again, I didn’t pee much at all, despite the fact that I had put in quite a lot of fluids. This could actually mean that my kidneys are not working as they should; I have a feeling that I normally would have needed the toilet a lot more than I actually did. Now, almost two hours after taking the Furix pill I pee like crazy again. IF all this actually would be a kidney problem I wouldn’t be surprised, and it might not at all be the fault of the VFEND drug. Considering all the poison I have been given now since September 2009, what my poor kidneys actually have had to put up with for a very long time, you might think they would have stopped function a long time ago.
June 22 – It’s a day of great sorrow...
I wasn’t sure I was going to write about this morning’s extremely sad event, but then I felt like it actually was something I have to do, to let the world know about how awful things can turn out. I can’t say that I feel too good to write about it since I can relate to it a great deal myself and it makes me very sad, but mainly this is a day of tragic for my brother and his family.
My sister-in-law Gun passed away this morning in the age of 48 due to cancer and it is a day of great sadness for my brother and their children, as well as for Gun’s family and friends.
Life is so unfair and really sucks sometimes...
June 28 – Doctor’s visit and quite nervous...
Yesterday I went to Sahlgrenska Hospital to have my weekly blood collection done and it’s always so surprising how deserted and empty Sahlgrenska are on people when vacation time has started, from just one week to the next. This meant that when I got to the blood collection place at the Hematology department only three people was waiting in the waiting area, so quite quickly it was my turn. At the pharmacy it was the same thing, where I had to go and pick up some more meds. So I was in and out from Sahlgrenska quite quickly compare to how it’s usually is.
Today I then have my now monthly doctor’s appointment and I was a bit nervous. I still have problem with keeping fluids inside and the Furix pills seems just to maybe keep it under control, I still have 5 kg of weight that I haven’t been able to get rid of and it shows particularly on my left leg and foot and on my belly and the swelling belly is really bothering me. If it hasn’t been because of this problem I would probably feel a lot better than before since I think all previous bad side effects of my previous meds are gone and at least what I can feel at the moment I haven’t felt any bad side effects with the new meds. Anyway, I was a bit nervous about what the doctor would say about the fluids.
So I got to the Lymphoma team in time after sitting on a bus for half an hour sweating like crazy. It’s very warm here in Gothenburg right now and the bus didn’t have a working air condition, so it was a suffering half an hour. Also, after sitting on that bus my legs and feet had swell so much that I could hardly walk after getting off; my legs were like two big wooden logs.
Well, the doctor’s appointment went quite well, nothing came up that caused any tears so later I left the hospital a bit relieved. I think my doctor have during these soon two years of trying to get my sickness under control or cure me, have understood that I don’t want to talk about any really bad stuff if I can avoid it and with really bad stuff you can probably understand what I mean. This is my way of keeping the thin tree branch I am sitting on right now to hold on and not break.
Anyway, my blood work was almost fine, including my Leukocytes, so I am not sensitive to infections or so despite the chemo pills, Ixoten, I have been taking now for 14 days, and my kidneys seemed to be ok again. However, my Hemoglobin level still refuse to rise, it had parked itself at around 100 g/L but as far as I can tell I have no problem with it, and it is not catastrophically low. I am still using the meds for the Aspergillus fungus but Monica told me that I could probably stop when the meds I still have left for that are finished, which would be another 14 days or so. But also, before I went in to Dr. Monica a couple of new blood samples was taken to check out how the Aspergillus was doing, but hopefully those blood samples will not show any leftover of the Aspergillus.
So we then also talked about why I am keeping fluids inside and one of the most likely reasons for this are definitely not positive. Dr Monica thought that the reason for the fluid problem most likely is because I have lymph edema but it also could be that the swelling lymph knots I have in my belly might be pressing against different kinds of blood vessels. The latest is not good at all, so I definitely hope that the chemo pills will diminish those swellings.
But the fact that my Leukocyte level were good made Monica decide that there were room for increasing the dosage of the Ixoten, the chemo pills, and that was positively….I think. There is always a bigger risk of bad side effects, I could start feel nauseous for instance which I don’t feel at the moment, but by increasing the dosage there is also a chance that the pills can fight harder against my swelling lymph knots. If we are lucky we can get a steadiness in the lymph knot swellings and if we are even luckier maybe they also can diminish.
But for now this is written in the stars and if it doesn’t work I can only rely on my body’s own capability to keep fighting.
July 5 – Blood collection and a new battery for the “Black Pearl"...|
Today I had my weekly blood collection and when I got to the blood collection place at the Hematology department, I came in straight away; no one was waiting for their turn. That was a big surprise.
Maybe, just maybe the Ixoten pills after raising the dosage, but also the cortisone pills as the dosage were lowered at the doctor’s appointment last week, had maybe now given so much effect that I haven’t been forced to take any Furix pills for the past three days. The weight seems to have stopped moving up even if I don’t take the Furix pills (made a try not to take any Furix one day last week but that try gave me another 1kg of fluids in my body over the day) but now it seems to be keeping steady instead…knock, knock on wood, hopefully it stays like this or even better if it could go away.
However, I still have that swelling belly that is bothering me so much and I can’t take deep breaths properly. Unfortunately this problem makes it hard for me to take my daily walks which would be very good for me to do. Also today, when I was walking to the bus stop to catch the bus to Sahlgrenska, I got a bit dizzy when I was almost at the bus stop which is only about a 10 minute’s walk from my place. Also, this is probably why I am coughing a lot, especially when trying to take deep breaths; it sort of feels as I don’t get enough air.
Now, this is a huge problem for me since when I need to go food shopping, it’s a lot of hard work and quite strenuous. My dear “probation officer” Lena does however help me now and then and goes shopping with me and drive me back and forth and I am so grateful for that help. But most of the time I would like to be able to do things by myself, at least as long as I can, so now I will try to get my dear car “The Black Pearl” running again.
Me and my "Black Pearl" straight from the car dealer in 2004.
That poor car have had to put up with a lot of things during these soon two year of heavy cancer treatment, because of all the heavy medication and
chemo’s I haven’t been able to drive. I made a try in October-November last year when I was feeling pretty good but it didn’t last long. At the time
when I first tried, the poor car didn’t start of course, the battery was completely dead. So with a little help I was able to charge the battery and
the car started and I was able to drive for a couple of weeks. Then of course the snow came and I couldn’t drive anyway, despite that I was feeling
pretty good. I don’t have any winter tires and that is the law in Sweden to have on from December to March, so the car was standing still again for
long time both because of the snow, and then again because of heavy medication and sickness.|
Then just a couple of weeks ago I tried to start the car and again the battery was dead and this time it didn’t help by trying to charge it, it was completely dead, I simply had to buy a new battery. To tell you the truth I think it was time anyway to buy a new battery so the heavy cost for a new battery didn’t really bother me. So Lena came and picked me up after the blood collection was done and we drove to get me a new car battery and then we went food shopping as well.
So the plan is now that tomorrow I will replace the battery in the car and then hopefully it will start and not having any other errors (God forbid) and then on Thursday Lena and I will go for a drive around and give poor “Black Pearl” a good treat and also give it a good wash which is sooooo necessary. Hopefully by being able to use the car again I would gain some more life quality and not feeling so trapped at home, especially if the problems I have now will continue.
Maybe you are wondering about the cars name; “Black Pearl”? Well, I have a liking for naming things and if you know your “Pirates of the Caribbean” movies you’ll know that “Black Pearl” is the name of Jack Sparrows' ship that earlier had been taking over by his ship crew in a mutiny and when he meets them again, they had turned into ghosts. So when I bought the car seven years ago it got its name straight away but just like Jack I normally just say “The Pearl” when I talk about the car.
July 12-14 (written July 30) – Blood collection and visit from Linköping...|
On Tuesday July 12, I went into the hospital for the weekly blood collection and it was a bit hard walking to the bus stop because of my difficulties to breathe properly, but I made it. Again I had to sit and wait for a long time in the waiting room at the hematology department, the past weeks with basically no people in the waiting room was over. Also again my veins were not behaving themselves and two tries were needed before the blood collection could be complete.
The day after I had a very nice visit from Linköping, my colleague and friend Marianne and her husband Håkan came to visit me. We took a drive down to Kungsbacka to visit the Outlet there which we visit last time they were here and they went shopping like crazy just as last time :-). The day after, they came by my place again for a cup of coffee and a chat for a couple of hours before they went home again. It was very nice to see them again.
July 18-19 (written July 30) – Needed to be admitted to the hospital...
On Monday July 18:th I realized that I needed to call the Lymphoma team about my difficulties to breathe. I talked to nurse Seija and she got a bit scared hearing me gasp after air on the phone but we talked a couple of times and then we agreed to have me coming in the next day for an x-ray of the lungs and seeing a doctor. This time I didn’t even try to walk to the bus stop, I simply couldn’t, but ordered a taxi for the next day.
Tuesday July 19 – Got in to the Lymphoma team at first for some blood collection but before that, one nurse was measuring the oxygen level in me by walking around with me for a while, the oxygen level was bad. Then a needle was set in my arm and some blood work was drawn, then I had the x-ray of the lungs done and it was done quite quickly. After this I had to sit and wait for while at the Lymphoma team ward before the results of both blood work and x-ray was in.
The doctor came and picked me up and he showed me the x-ray of my lungs and I got quite shocked. The right lungs Pleura (Sw transl: Lungsäck) was almost completely full with fluid, the only empty space left was of the size of a golf ball on the top of the lung, no wonder I couldn’t breathe properly. So the doctor told me that I had to be admitted to the hospital right away and have the Pleura emptied. I wanted to go home and then come back, to pack a bag and get my Ixoten pills, but I wasn’t permitted to go anywhere.
On top of all this my Hemoglobin level was quite low so a blood transfusion was necessary and after talking to the doctor I was given two bags of blood. After this a long wait began before a hospital bed was found, it was occupied everywhere at the hospital. The first option that came up was a place at the lung ward but late in the afternoon a bed was fixed at the hematology ward instead, where I actually belong.
The doctor thought that the emptying of the Pleura was going to take place the same day, and that I then could go home the day after. That didn’t happen. I was also a bit concerned about the Ixoten pills, that the hospital ward wouldn’t have them in storage since they are a licensed drug and later I turned out to be right about that, so I called Lena and she was kind enough to drive home to my place to get them for me. Thank you so much Lena that was so sweet of you.
Then the waiting for the emptying of the Pleura began and even though I was a bit nervous about the procedure, the doctor had explained it to me, I wanted it to be done as soon as possible so I could start breathe properly again. However, it took some time before it finally could be done.
At the same time this day, the funeral of my sister-in-law Gun was taken place and this was in my thoughts that whole day too.
July 20-21 (written July 31) – The days at the hospital and the long wait...
I had been given a place in a room with two beds in it at the Hematology ward but I was the only one there so during the first night I slept like a dead, completely exhausted. After that night I didn’t sleep much, I got a roommate that snore like crazy and despite the fact I had been given ear plugs, that loud snoring was heard anyway. Oh dear, how I wanted to go home and sleep in my own bed and in silence ;-).
During my waiting days here I was given twice a day a Furix pill to get rid of the fluids that I still have in my belly and I pee like crazy as usually when taking this drug and this was not so pleasant. Just between Wednesday and Thursday I lost 3 kg of weight in fluids but this also came with a not so nice side effect. I woke up on Thursday morning with an extremely low blood pressure that made the nurses on the ward go a bit nervous, so that day I was not given any Furix. I could also feel that the muscle strength of my legs was not that good. Both the low blood pressure and the weakness in the muscles are bad side effects when pee so much, you’re losing some important minerals in your body that effects both blood pressure and muscles. My legs felt so weak so when walking around I had to keep my hand on the wall for support.
Being admitted to the hospital again, made me realize that I had developed some psychic problems since last summer’s chemo therapy sessions when I throw up like crazy. Some things remind you of this and make you feel really uncomfortable as well as a bit nauseous, even just writing about it. The first thing is the sound that goes off from the drip machines when a drip has finished and on a hospital ward like this you hear it all the time. The second thing is that one of the chemo’s used by these patients are in the color red and every time I see another patient having one of those red bags hanging at their drip pole I feel uncomfortable. The third thing is the hospital food, which in my opinion is really horrible anyway, and again the food was reminding me of throwing up. This of course made me not be able to eat much at all during my days here. But despite the fact that I couldn’t eat much because the food really made me lose my appetite just seeing it because of last year’s experience, I really would like to have a serious discussion with the person that had come up with this horrible menu given to patient that really needs to eat while having these hard chemo treatments. That person should find a new job. Trying to eat these overcooked small squared pieces of carrots makes me want to hit somebody ;-).
The emptying of my Pleura was going to be performed by doctors at the Lung Diagnostic ward and the ward had promised to take me in and do the procedure as soon as possible and that it could happen at any time, so I just needed to be prepared to be there as soon as they said so. But I was sitting in a chair at the Hematology ward for almost two days before it was done plus that whole day on Tuesday while waiting for a bed at the Lymphoma team ward, so in total I was sitting up in a chair for three days. Sitting in a chair was the easiest way for me to be able to breathe better but my poor, now very skinny, behind didn’t really approve of that and I came to suffer from that after I was released from the hospital.
Then finally late afternoon Thursday I was sent to the Lung Diagnostic ward in my bed to do the emptying of the Pleura. I was looking forward to it, and said to myself - FINALLY, but at the same time I was a bit nervous.
July 21 (written August 1) – The emptying of the Pleura...
Late Thursday afternoon I was then sent to the Lung Diagnostic ward to empty the Pleura but when I got there, they were delayed so it came to be another hour of waiting at the ward.
There were two nurses and two doctors in the room when the procedure finally started. I was nervous but not as much as I had expected but to my surprise I started to hyper ventilate as soon as they put the first needle in me and then my left foot started to wiggle in a not controlled way, I couldn’t stop it, and it came to continue during the whole process and a long time afterwards, it also felt like I wanted to crawl out of my skin. At the time I didn’t realize I was having my first real panic attack ever, but a week later that became clear. My mouth was also babbling like crazy and I was asking questions all the time about what they were doing, even wanted to know the details.
The first thing they did was an ultrasound to find out where to go in and not hit any other major organs such as liver for instance and then I got the first needle stick, somewhere between my ribs on the right side, filled with anesthetic just to stun the skin and a bit underneath. After a minute or so I got the next anesthetic syringe that went in a couple or centimeters. To my surprise none of these needle sticks hurt anything at all.
Then the BIG needle came! To tell you the truth that needle was never shown to me but I noticed the size of the hole afterwards. The needle was forced in to my Pleura and it was a really strange feeling that is very hard to explain, but again to my surprise it didn’t hurt at all. The closest thing I can say to explain the feeling when that needle was forced into my Pleura was a feeling of the sound “pop”, like going inside a bubble or something.
Then they began to draw out the fluid with one big syringe which I could see the whole time and I could see it be filled with Pleura fluid, over and over again.
I was told before the procedure that they, at the most, would only take out one liter of fluid, even though there might be more left. The reason for this is that, after emptying the Pleura of fluid, the lung would start filling itself with blood again and if taken more than one liter of fluid, a too big area of the lung would be blood filled at the same time and could cause a very nasty drop in the blood pressure.
So they kept drawing and drawing and drawing and I thought, oh dear wont it ever stop, but they didn’t stop until they had to, after taking out one liter of fluid. I was shocked and haven’t realized that there actually could be space for such of amount of fluid and of course that I actually had it and that there even was fluid left.
Now after this, there were going to be some tests on the Pleura fluid. For instance there were samples sent to the Pathology lab as well as the Clinical Chemistry lab and Bacterial lab. But I asked the doctor who were there what he could see visually on the Pleura fluid and he told me it looked as a typical Hematology patient pleura, that is with cells in it, but it didn’t look as it contained any bacteria. But again the visually look are not conclusive but with some experience most can see on any body fluid where it might be heading, even I could when I was working at the lab. It would however probably take a week or so before any results of all the tests would be revealed.
I had been told that I would feel the effect as soon as the procedure was done, that the breathing would be easier, but I was still hyper ventilating for a while afterwards so it took a few hours before I could feel the effect. Another thing that happened was as soon as my poor lung started to function again, I started to cough like crazy.
After a while I was sent back to the Hematology ward and had to be lying on my back for at least an hour after the procedure and then I was going to be sent to another x-ray of the lungs to see that they were expanding as they should again, and as soon as a doctor at the hospital ward had evaluate the picture I was told I could go home.
However, it took until 8:30 in the evening until the x-ray was completed, so I never went home that evening, there were no doctors left to evaluate the x-ray pictures at this time. At the same time I have to admit that I didn’t feel very confident in going home at this point, felt a bit shaky to say the least, so it felt good to wait until the next day.
July 22 (written August 2) – Finally released from the hospital...
Sometime during the morning hours of Friday July 22 I finally fell asleep so when the nurses came in early in the morning I just didn’t want to get up, but I could feel that my breathing was much better even though I was still coughing now and then, so now I felt ready to go home. It took however some hours before I could do so, not until after the doctor’s round.
The first thing the hospital staff do every morning are some checkups such as measuring temperature, pulse, blood pressure and in my case the oxygen level, which now had raised up to 97% (you should have close to 100%) and during my stay here it had been at 92, even though I was not moving around. However under normal circumstances my oxygen level usually is at 99%, so it’s still not completely back to normal. They also are measuring ones weight every morning as well as doing some blood collections. So I crawled out from the bed and went out to the scale in the corridor.
Holy smoke, the scale showed that I had lost 5 kg during the days here and most of it was just fluids and approximately 1 kg of those 5 kilograms had been in my Pleura. But I also knew that a small amount of it was probably also normal weight lost due to the fact that I hadn’t been eating that much for three days. But I could also see and feel that the swelling of my belly was not so bad anymore, so that felt good.
So then finally then the doctor’s came to tell me I could go home. The x-ray of my lungs had showed that my lungs was as good as they could be under the circumstances and the most important thing was of course that my right lung had started to function again, that it was expanding with every breath as it hadn’t before but there were still some fluids left in the Pleura, about 5 centimeters. Unfortunately this would probably not go away by itself and could also mean that the Pleura could fill up again and I have to go through this again. But I could go home for now and that felt soooo good.
Before I could leave the hospital I needed to go the pharmacy to pick up a new diuretic (Sw transl: Vätskedrivande) medicine I should try, a medicine that should save the mineral Potassium. This mineral you lose a lot of while taking the Furix and pee so much and losing this mineral could cause a drop in the blood pressure as well as the weakness in muscles, exactly the thing that happened to me yesterday. The medicine is called Spironolakton and is slightly milder than Furix, it should still make me pee more than usually but not as much as with the Furix. Along with this new medicine I was prescribe to take a Furix pill in the afternoon when I felt necessary. Of course when I got to the hospital pharmacy the doctor’s had forgotten to send in the prescription so I had to call the ward and tell them, but it ended with that I went home without it. I thought that by the time I had gotten home, they had fixed the prescription, and I could pick it up at my local pharmacy instead. The doctor did fix the prescription at once after my call but by the time I got to my local pharmacy they had to my surprise just closed for lunch…
Grrrrrrrrr, by now I was quite irritated and very tired so I went home and didn’t care about the medicine at all, I’ll pick it up on Monday and take the Furix during the weekend instead.
When I got home I just gave my poor plants some water and then went straight to bed to rest until Jan and Elisabeth would come over, I had talked to them earlier. It was nice to see them again after such a long time and we had some coffee and talked about the possibility for me to come over the next day for a small crayfish party with the family.
After they had left I was basically just resting and didn’t do anything at all and went to bed very early and slept like a dead, I was exhausted. When I woke up the next morning and was walking pass the morning paper on the floor I got a really big shock, seeing the headlines in the paper about the tragedy in Norway. This should come to occupy my mind for the coming days and seeing all sad reports from Norway on TV made me cry several times.
July 23-25 (written August 3) – The first days after the hospital visit...
Well, I thought that after the emptying of my Pleura now was done and I was home and was able to sleep properly as well as be able to eat again, that I would get up and jump and become extremely fit again, oh boy how wrong I was about that.
I soon realized that I was not going to run up and down my stairs again without any problems nor put on my jogging shoes and go for a run, sorry Andrew ;-), but thanks anyway for your cheerful words. No instead I felt very tired and weak and also still was breathing heavily while doing something strenuous. For instance when I tried to vacuum my apartment, which I btw didn’t even try to do for days, I could only take one room at the time, then I had to sit down and rest for a long time and was breathing heavily. The same thing with trying to take walks, which I did after a couple of days, I had to walk very, very slow and also here I was breathing heavily.
So, to my big disappointment, I simply had to take one day at the time and slowly try to get back in some sort of shape again.
I was still coughing a lot and by now I realized that I had coughed so much for such a long time that I probably had a muscle rupture or something somewhere on my left sides’ ribs or maybe I had even broken a rib, which I doubt btw but who knows, and this hurt quite a lot when taken deep breaths, not to mention while coughing or sneezing. I also now started to suffer from having been forced to sit down so much during the days at the hospital, I had developed some kind of Pressure Ulcer (Sw transl: Trycksår). On Saturday morning I realized that I had some kind of abscess on my skinny behind, on the same place where you usually are sore when you have been sitting on a bicycle for the first time in a long time, in Sweden we call it our “sit bones”, have no idea what it is called in English though. This felt quite a bit as well and made me not be able to sit down for any longer periods.
Oh dear, wont the problems ever stop I thought, I just can’t call the Lymphoma team so soon after the hospital visit and tell them that I now needed help again, with a sore ass ;-).
So all of this meant that I spent most of these first days out of the hospital lying on my sofa watching TV or reading, so sadly enough there was no crayfish party with Elisabeth and Jan and the kids for me on Saturday, I simply needed to take one day at the time for now.
On Monday I took my first walk outside, to go to the local pharmacy and get my new medicine, the Spironolakton. I was a bit afraid of the walk but took it very slow and aimed for one lamppost at the time, to have something to hold on to if needed and concentrated hard on the breathing. But I made it without any major problems even though my legs felt a bit shaky and when walking home I felt a bit more confident so it got a bit easier to walk home.
When starting to update my journal again after the hospital visit, I realized that I had forgotten to write something, something that became clear some time ago, after the discovering of the fast growing lymph knots in my belly. It is about what type of Lymphoma I have. However, it has not been confirmed by any tests or so, it’s just the behavior of my illness that had made my doctor’s change the Lymphoma type I have to a combination of two types, that most of my Follicular Lymphoma has transformed to another type and especially then in my belly. It could however still be the Follicular one in my groins for instance. This means that on all my hospital papers only the new type is written now, the Follicular Lymphoma type is in their minds history and the new type is called Large Diffuse B-Cells Lymphoma. Bad? Yes unfortunately it is.
July 26 – Been admitted to the hospital...
Just a short notice today and I will try to get up to speed with my journal later, maybe in a couple of days or so, we’ll see, what actually have happened after last insertion in my journal on July 5:th, need however get my strength back now after quite an ordeal.
Last week I was admitted to the hospital after a not scheduled doctor’s visit, due to the fact that my ability to breathe got worse and worse. So on Tuesday last week, after an x-ray of my lungs and seeing the doctor, I was not permitted to go home again. My right lung (in the Pleura - Sw. transl: Lungsäck) was more or less completely full of fluid and needed to be emptied. On top of this I also needed to get a blood transfusion since my Hemoglobin level was quite low. So I was released from the hospital on Friday afternoon but I still feel very tired and weak after this ordeal and my lungs are still not completely ok.
The insertions between July 5 and today will be written on a later day but will still be located before this one, see insertions above.
July 29 (written August 10) – First doctor appointment after hospital admission and it got to be really scary...
Today I had my first doctor appointment at the Lymphoma team ward after the hospital admission. I was due to be there half an hour before seeing the doctor for a blood collection so at least the Hematology analyses was done before seeing the doctor. But this day came to be very strange and also a bit scary. I was soooooo close to be admitted to the hospital again because of what happened.
These days I am always a bit worried when have to see the doctor but also the blood collection is something that I don’t really enjoy anymore, there has been too many needles in me by now. But I didn’t think I was more worried than usually, but I was sort of feeling a bit strange before I left home, like I had a low blood sugar level or something, but I couldn’t really put my finger on it. So when the taxi arrived that I had ordered the day before I left my apartment.
As soon as I had got in to the taxi I began to hyperventilate, but I didn’t realize that it was that I was actually doing. For the whole drive to Sahlgrenska hospital, it takes about 15-20 minutes, I was hyperventilating and felt like I didn’t get enough air and wanted to get out of the car and crawl out of my skin, and when we arrived to the hospital I felt really strange, a bit weak and dizzy. I got up to the Lymphoma team ward and sat down in the waiting area and while sitting there I was still hyperventilating but then suddenly my left foot also started to wiggle in a not controlled way. If you have read my experiences during the hospital admission last week you probably now understand where this was heading, but me, well I still didn’t understand at all what was going on.
One of the enrolled nurses came to pick me up for the blood collection, I knew her from before and she was quite skilled doing blood collections, but when I stood up from the sofa I started to stumble and had to hang on to the wall, it felt like my legs were made out of jelly, they felt so weak. But we managed to get in to the closest room and had me sit down in one of the blood collection chairs that you can lower down and I told the nurse that I really wanted to be lowered down a bit while doing the blood collection, I felt really weird.
She did the best she could, trying to do the blood collection but by now my veins had completely disappeared so no blood came out and I was still hyperventilating. While digging in my arm, trying to find a vein, she kept asking me over and over again how I was feeling but by now I could hardly talk but just gasping after air, but I managed to whisper that I felt really dizzy. So she stopped what she was doing and immediately lowered the chair even more so I was lying down with my head and my feet in the air and then she quickly put the oxygen clip on my finger. The oxygen level was only at 85% which meant that I was very close to pass out, so the things she did was in the last minute.
I had to lay there for a while and slowly my breathing became better. One of the registered nurses, Ingela, came in to check on me and told me I was quite pale in my face but as my breathing became better and better and after I almost had stopped hyperventilating she helped me getting to a bed instead by pushing me in a chair with wheels on it. By now I had finally realized what was going on, that I have had a really bad panic attack, again, the exact same thing that had happened during the emptying on my Pleura last week, which I at the time didn’t understand at all but by now I did. Ingela told me that she had alerted the doctor how I was feeling and that I might needed to get admitted to the hospital again but I said that this was not physical, it was in my head since I now had understood what was going on. However, as soon I was in the bed the doctor came in to check up on me, he was quite concerned about the oxygen level at 85% even though it by now had raised to 97%, he asked me if it felt like I needed to be admitted, but now I was feeling much better and since I was now so convinced about what just had happened I said No, No, No.
So finally then the blood collection was done but I had to stay in the bed until all the blood was totally analyzed, not just the Hematology samples, and then the doctor came to see me again.
After the doctor had examined me, he checked the lungs and checked out the swollen lymph knots that are visible, we talked. I still have fluid in my right lungs pleura, even though it is not as much as it was before the hospital admission and this are still causing the heavy breathing while doing something strenuous, as well as still coughing. So he told he thought that I should take the Furix pill every second day instead of trying to determine myself if I should take it or not. I had not taken any of these pills for the whole week because I hadn’t exactly gain so much weight for the past week nor felt that I my belly had started to swell again, but apparently I most likely had fluids in my belly anyway even though I didn’t notice it myself. The next thing was my blood work which was pretty good, even my Leukocytes were at an acceptable level even though they still were low. Then also some of the results, if not all, from the tests of the fluid in my pleura that had been sent away to different lab last week, had arrived and had showed no sick cells or bacteria. This was very good news and I had been a bit nervous about these test results since the Lymphoma can attack the lungs as well but still this don’t seem to have happened.
So after a not very fun beginning at all of this day it then ended in a much more positive way, as positive as it could be under the circumstances, but anything that is not bad news makes me at least a bit happy these days. However, these panic attacks that now have happened twice makes me worried and I am quite scared that they will happened again, a not so fun experience that I definitely can live without.
Well, the month of August came to be a bit relaxing and again I am behind with writing in my journal/blog. This time not so much because I have been feeling very poorly, even though I still have problems with my right lung that still contain fluids, but I have not been spending so much time behind the computer, instead spending a lot of time with Elisabeth and her family and other friends.
The three birthday girls in Varberg; Yvonne, Monica and myself turning 25 years in 2011...
August 12-13 – The 150 years birthday party in Varberg...|
I haven’t been to the hospital now since July 29 but next week on the 18:th I have next blood collection and after that the doctor visit. But before that a big party was held in the town of Varberg for me and two of my Champ sisters; Yvonne and Monica, because the three of us have turned 25 years this year and 3 times 25 is 150.....Ehhhhhh, kind of.
For once this summer the 12:th of August turned out to be very nice concerning the weather, bikini weather in fact which was a big hit for the party. Otherwise this summer it has been raining and raining over and over again and although the west coast is known to have a lot rain they say that we haven’t gotten so much rain since 100 years or so.
Anyway, most of the girls in the Champs gang got to Varberg sometime shortly after lunch and we all dressed up in our bathing suits, had a few drinks and was sitting in the sun for hours at the sun deck with ocean view at our Champ sister Marita's summerhouse. Some of the girls also went in to the ocean, skinny dipping, but not me who preferred to sit in the sun with my drink instead of risking getting a cold together with my bad lung, the water was kind of cold even though the girls said it was not, but I didn’t want to risk anything.
Myself at the birthday party in Varberg with the lovely necklace I got in present.
When all the girls had arrived the three of us who had turned 25 had to listen to the Happy Birthday song from a bunch of happy girls and then we
cheered with Champagne. When they also turned up with a lovely birthday gift for each one of us, I, as usually got to be very touched and the tears came.
The birthday gifts were a lovely necklace that should symbolize each one’s character and I loved it right away and will never take it off. It also went
very well together with my golden feather necklace that I had worn since my Trek in America 1995, and which I bought in Jackson Hole in Wyoming, so I
didn’t need to take that off either.|
In the evening we had a barbeque and together with different kinds of salads and a potato gratin and a lot of wine it tasted really good. It came to be a very late evening/night before we got to bed which always is the case when we meet in the Champs gang but we have such a lovely time together when we meet.
Thank you so much my lovely Champs sisters for this, it was exactly what I needed after a very bad as well as boring summer and when we left the day after I could feel a lot more mental energy than before, even though I was also dead tired because of lack of sleep, but hey, that comes with the territory.
Carina, Lena and Elisabeth with the Champagne; Cheeeeeeers everyone.
Me in tears when hearing the birthday song.
August 18 – Blood collection and doctor appointment...|
Since I had this really bad panic attack last time I went to the hospital I was a bit frightened how it would end up today, so I was kind of relived that I could do the blood collection the same day as the doctor appointment, even though it meant I had to wait until the blood was analyzed before the doctor took me in to her exam room. I was bit nervous when I got in to the taxi that were going to drive me since last time the hyperventilating started right away as soon as I got in to the taxi, so I was concentrating hard for the whole drive to breath properly, nice and calm, and thank god, it worked. No panic attack during the drive and also not at the hospital visit in total, I think my confidence increased quite a bit because of this.
Then Dr. Monica came and picked me up from the waiting area and as always she did her exam of me and asked me how I was doing in total and even though my right lung still have fluids in it and it is really bothering me, in total I was doing better now than I had been doing for several months. My blood work was pretty ok, even though still low values in Leukocytes, Platelets and Hemoglobin, but this is sort of my normal state now since I am taking these chemo pills. The sickness itself seems to have calmed down a bit now so the main problem right now are the fluids that I still have in my right lung and we decided together that we needed to address this issue now. So Monica suggested that I now should “glue”, as they call it, the pleura so there could not enter any fluids in there anymore. This procedure meant that I once again needed to be admitted to the hospital for some days to empty the pleura completely and after that they would insert some kind of other fluid that would seal off the pleura. But before this was happening I needed to have another x-ray of the lungs done to see exactly how much fluid there were left at this point, even though Monica could hear with the stethoscope that there were fluids left in my right lung, it was impossible to say how much.
I can’t say that I look forward to this but at the same time I don’t really have a choice, I have such problems when doing something strenuous and start gasping after air, even though it is much better than it was in July, but it is not such a good life quality to have it like this. So now I first just have to wait for the call from the x-ray department for the x-ray of the lungs, before I would know when the “glue” procedure could be done.
August 24-31 – The x-ray of the lungs, blood collection and downtown Fjärås again...
The call for doing the x-ray of the lungs came very quickly as I had expected since it’s a very fast procedure, takes only a few minutes even in my case since I have to do it in both a standing position and in a lying down position. So on the 24:th of August I was in to do the x-ray and I was more or less just in an out from the hospital and then I went straight to Elisabeth and Jan for the second time in August and stayed for a few days before I had the next hospital visit again, yet another blood collection.
On the 30:th of August I then went in to the hospital for the blood collection and again I was basically just in and out and then went home to pack my things for going to Elisabeth and Jan again the day after, for the third time this month. Poor Elisabeth and Jan that have had to put up with me so much lately but I do appreciate being with you guys and being so well taken care of and it also feels so good to get out of my apartment which more or less feels like a prison now, especially since I can’t really do much since my lung is bothering me so much. Other than this I am just waiting now to get a call from the Lung Diagnostic Ward for the emptying and “glue” procedure of my Pleura and I have started to get a bit nervous now about the procedure.
On the 31:th I also went to the hairdresser and cut my hair for the first time since it started to grow back again a year ago. My hair is extremely curly now and not very easy to do something with. I also put in some color to highlight the whole thing a bit and it felt really good when I left. However, my plan has from the start been that as soon as I had some hair back I would put in extensions to get my long hair back sooner but when discussing this with the hairdresser she told me that I need to wait a bit longer, until next spring she thought would probably be good, so I need to be patience. But for now I have at least some kind of hairstyle.
September 1 – Nurses worried about x-ray result, made a doctor call me...
On the morning of September 1 my cell phone suddenly rang showing “unknown number” and I of course missed taking the call. I knew it was most likely someone from the hospital calling since it didn’t show any phone number so I waited for it to call again and it did, just 2 minutes later. Whoever it was who called was obviously anxious to get in touch with me. It was one of the doctor’s from the Lymphoma team, however not anyone I have spoken to or met before.
He told me that one of the nurses in the team had gotten worried after discovering the result from my x-ray of the lungs I did on the 24:th of August, so she had made him call me to check up on me. So he asked me how I was doing and I replied that it was pretty ok and then he told me that my x-ray had shown that I had gained more fluid in my right lung since last x-ray but I told him that I couldn’t feel that it had gotten worse. So we discussed then how to proceed and I told him that I really wanted to get rid of the fluid so he said that he would call the Lung Medicine department and discuss with a doctor there and then call me back. It only took about 15 minutes and then he called me back.
Our discussion then ended up with that we would do another try to empty the lung completely but we would wait with the “glue” procedure until there might be a next time. After he also had explain to me a little bit more about how the “glue” procedure really was working I started to hesitate if I really wanted to do this right now, instead of see if we could keep the lung clean after emptying it from fluid completely. He explained to me that the substance they would insert in the pleura when doing the “glue” procedure would actually cause an inflammation in the pleura and that this then caused the pleura to seal off. This didn’t sound nice at all to me, so I told him; let’s try the “easy way” first (hmmm, I am not sure if I really should call this the easy way, but if you compare it…) and if the lung still kept filling up with fluids afterwards and I need to do yet another emptying of the pleura we can do the “glue” procedure next time, I can’t keep doing these pleura emptying over and over again. So we ended our conversation with that the doctor would now send in a referral to the Lung Medicine department for doing the emptying of my right lungs pleura and not then doing the “glue” procedure this time.
Bettan, Helle, Carina and Monica taking a "dip in the pöl" after the Sauna...
The Sauna, Pool and Crayfish girls in the middle of the night...
September 3-4 - The Sauna, Pool and Crayfish Party...|
After having such a wonderful time in Varberg in August with our Champs gang Elisabeth wanted to have some fun at her house as well so she invited everyone for a combination of Sauna, Pool and on top of this a Crayfish party. Unfortunately this time, not everyone could make it so in the end there were just five of us that could participate; Carina, Monica, Helle, Elisabeth and me, and we missed the rest of the gang very much but we did have a really good time anyway. We were a bit concerned about how the weather would turn out since the Pool are outdoors, but the day at least came out to be quite sunny but not so warm, so the temperature in the water in the pool were just around 18 degree Celsius.
So when everyone had turned up early in the afternoon we started up with eating lunch and have a few drinks and then the five of us went into the Sauna. Those who wanted could hop in the pool now and then to cool off and then go back into the Sauna. Me; Well as last time I didn’t want to risk catching a cold on top of my bad lung, as well as I thought the pool water was way too cold for me to enjoy it, I was the photographer instead. After the Sauna and Pool session we all dressed up nicely and started to prepare for the Crayfish party.
Carina and Bettan looks very serious while singing, as they are singing in the church...
Helle and Monica; are the singing tone maybe too low for you...
Oh boy what a party it came to be and we sang all those Crayfish songs and in the beginning we all took that very seriously, as you might see at the
photos, but later it got to be extremely crazy and it was a long time since I had been laughing so much as I did this evening because of all crazy
stunts and singing. After a few hours we thought we needed a brake of eating and singing so we could play “kub” (have no idea what this game is called in
English, it might even be the same as in Swedish) before it got too dark outside. I thought that; Well this is not so strenuous so I am sure I can
participate, but if I had known that Elisabeth was going to try to knock me down I would have stayed beside and just watch the others play :-).|
Carina, Bettan and myself trying to look very cute in our silly Crayfish hats...
Myself, Helle and Monica in some sort of grouphug...
It was when Elisabeth was throwing her “kub-stick” towards us, the opposite team, when the “kub-stick” hit the grass it suddenly took another turn
than Elisabeth had aimed for, towards me and it hit me hard on my leg, on my shinbone (Sw transl: skenben) just beneath my knee. It hurt like hell
and I was jumping around shouting; Aj,Aj,Aj. But after a few minutes I managed to calm down and we continued the game. My leg continued however to
hurt so I thought I’d better take a look at the leg and see if there were any damage.|
I got shocked when I realized that the leg had started to swell on that point where the “kub-stick” had hit me and I don’t lie when I say that the swelling or bump was as high as like 4 centimeters or so. Carina rushed into the house and came out with a bag of frozen chicken to put on the swelling and that was really funny. Then Elisabeth, as the nurse she is, she pressed with her single hand really hard on the bump and THAT I can tell you really hurt like crazy. She managed to press in the bump so it didn’t look as it had been there at all, and that was impressing, and then I got a “real” ice bag and a hard bandage on the leg. It was still hurting quite a bit but we just continued playing and then we went back to the eating and singing. Now afterwards I understand that the big swelling was in fact most likely mainly caused by me having a low Platelet level at the time. It took however a few more days before it stopped hurting and I was a bit blue here and there, but that was just about what was left of it. I can’t help keep teasing Elisabeth though about the whole thing; that she had tried to knock me down...*giggle*...
Carina tries to steel the last Crayfish from me...get lost Carina, this is mine...
Since the last Crayfish was taken by me, Carina and Bettan had to eat the leftovers...the shells...
|It came to be very late before we headed to bed and me I was very surprised that I managed to stay up as long as the others (well, almost all the others, someone crawl into bed earlier than the rest of us), usually I am to bed quite early. The next morning when we all came out of bed you could really feel that there had been a big party the evening before and I was suppose to go home today but I just felt that I didn’t even had the strength to pack my bag. I think this was the first time ever I actually have said; I am getting too old for this ;-).|
September 8 – Nurse Seija called me about the schedule for the Pleura draught...|
In the afternoon Nurse Seija from the Lymphoma team called me to tell me the schedule for the Pleura draught and that I needed to have a blood collection done close to the procedure. The reason for this is that my Hemoglobin and Platelets, the latest because of the bleeding risk, needs to be at a certain level otherwise they can’t perform the procedure. The Platelet level needs to be over 60 but at the same time if my Platelets would be at 59 it would probably be ok as well, the 60 level is something they just need to have to go on. The Pleura draught was planned to around lunchtime on Thursday the 15:th of September so Tuesday the 13:th would be a good day to do the blood collection.
Then after the blood collection on Tuesday one of the doctors would call me and tell me if and how we would proceed.
September 13 – Blood collection and phone call from the doctor...
I had to get up early today to have the blood collection done as soon as possible today to get the blood result back in good time for them to be able to prepare a good plan for the Pleura draught on Thursday. So in and out from the blood collection place at the Hematology department early morning and this time I didn’t need more than one needle stick, even though they had to dig a bit in my arm to find the vein and get the blood they needed. Then Dr. Monica called me after lunch.
Unfortunately my Platelets were on the borderline for doing the Pleura draught; they were at 65, so Monica told me that she wanted me to come in early morning Thursday to measure the Platelet level again before the Pleura procedure in case they needed to give me a Platelet transfusion. So now it was heading for being a long day at the hospital on Thursday. Then a couple of hours later Nurse Seija also called me since there had been a confusion about what blood analyzes that had been needed, to be able to proceed with the Pleura draught. They had missed out on taking some other blood samples to measure the bleeding risk; analyzes PK and APTT had been missed out, so those needed to be taken as well in good time before the Pleura procedure. Now I had to be at the hospital even earlier on Thursday.
September 15 – Time for the Pleura draught, a looooong disappointing day...
It became a day of disappointments, not much did go as I wanted it to. Went in to the blood collection place at the Hematology department to have the blood collection done, that was necessary before doing the Pleura draught, to measure if there were any bleeding risk. I had the blood collection done and yes there were just one needle stick needed this time too but again they had to dig in my arm to find the vein. After this was done I had to sit and wait until at least the Platelet level was measured, to see if I needed any Platelet transfusion. I found a nice sofa in the building and sat there and just stared in to the air, even though I had a book with me to read, but I had a hard time concentrating on anything else but what was about to happen. The Pleura draught was after this, scheduled to 13:45.
An hour after the blood collection Nurse Ingela called me on my cell to tell me that unfortunately I needed the Platelet transfusion; the level had sunk to 55. I couldn’t help it but I swore in the phone about this information. I would have hoped that this wouldn’t be the case and this was the first disappointment of the day. So I headed down to the cafeteria to buy something to eat and then up again to the Lymphoma team to have the Platelet transfusion done.
As I have told you before I am not the easiest person to find a good vein on these day but most likely also today because I was nervous, it took four tries before a needle was set and I could have the Platelet transfusion – oh dear that was hard work to put up with it. While the transfusion was running I ate my lunch I had just bought in the cafeteria and after the transfusion was done it was just one hour left before the scheduled time for the Pleura draught, so I started to slowly walk over to the Lung Diagnostic ward.
I came to the Lung Diagnostic ward 45 minutes before scheduled time but they took me in right away anyway, they had to do some preparation before they could start as well as that I needed to undressed and take a hospital shirt on. I also needed to use the toilet since I was forced to lie on my back in a bed for an hour after the procedure as well as that the procedure itself took a while. I was nervous now and I told the nurses what had happened last time, when I hyperventilated through the whole procedure, but this time I was going to try hard to breath calm, last time I didn’t even understand what had happened until later. So when the procedure then started the whole room was filled with people; two nurses and three doctors(!!) and the head doctor hold my hand and told me that one of the nurses had told her about my last times hyperventilating. But I understood quite quickly the main reason for her being there and just holding my hand was because the doctor that was going to do the procedure had never done this before, so she was in fact there to instruct him and not to hold my hand as a main reason. Understanding that the doctor doing the procedure most likely never done this before; Well, I can’t really say that understanding this made me any calmer.
Then they started up with an ultrasound to see where to go in and the doctor said; Well there are a lot of fluids in there which made me very surprised and I said; What? There weren’t in my mind suppose to be THAT much fluid, I had already done one Pleura draught, so in my mind I thought that 7 centimeters of fluid could only be like 3-4 deciliters or something, so it made me a bit concerned about what this remark would actually mean in the end. But he continue by giving me the first anesthetic injection a bit under the skin and after that yet another anesthetic injection that went the whole way in to the Pleura, if not also inside the Pleura then just outside. Then the big needle came up and now I started to concentrate on my breathing, I could now feel that my heart beat started to rise and let me tell you that this needle is really big and I mean really, really BIG.
The big needle “popped” inside my Pleura and again it was this strange feeling when they finally came through the Pleura wall, it was a bit tough to get inside, and then they started to draw out the fluid. In the mean time I talked to the head doctor about the “glue” procedure and I told her that Dr. Monica and I had earlier discussed about doing this procedure and if the Pleura problem would continue after today, that I would probably do the “glue” procedure. She then told me that she was actually going to recommend to Dr. Monica to go ahead with this procedure anyway, whatever happened after this. I got very disappointed about this information but at the same time, I have to accept it, this Lung doctor is the expert. So I asked her if she could explain the “glue” procedure in more details to me and so she did. I can’t say that it sounded very fun at all and I won’t explain it to you right now, I will only mention that it contains several days of hospital admission, could be 3-5 days or even longer, with a draining tube from the Pleura. I was just about to ask her if the “glue” procedure would handicap me in any way when it all was done, if I ever would be able to run the Gothenburg Race again, when we were interrupted by one of the nurses.
While we had been talking the doctor doing the Pleura draught and the nurses had continued with their thing, but suddenly I heard the nurse say; We have 1 Liter now, should we stop? The head doctor said that since we didn’t experience any problems last time, withdraw some more. Me, I just stared at them, being shocked about what I just have heard. They had actually been taken out 1 Liter of fluid again and this time it would even be 1,1 Liter. Again today I got very disappointed, not in my wildest fantasy I would have expect it to be so much fluid in there this time too, and STILL there was fluid left.
Afterwards I was then forced to stay in the bed on my back for an hour and then they did a quick x-ray just to see that they hadn’t caused any damage to my lung while going inside the Pleura. The most serious thing that I know could happen is if they put in the needle too far in and causes a pneumothorax, which is when the lung collapse. But it looked ok and the doctor also explain on the x-ray picture how much fluid there had been before the draught, one third of the lung had been occupied with fluid this time, and now there was around 1-2 centimeters left that was seen on the bottom of the lung.
After this I was then released to go home and I came home and was extremely tired but also a bit depressed about all the disappointments this day so I had a really bad night sleeping and the next day I was still in a very deep mood, still tired and felt frozen, I was as you can call it, deep down in the basement, and this continued on and off for several days afterwards.
September 22 – Blood collection and call from the doctor...
The day after the Pleura draught I had a call from the Lymphoma team, they wanted me in on Thursday September 22 to have a blood collection done, only to measure the Hematology samples this time; The Hemoglobin, Leukocyte and the Platelet levels but also another sample was taken. I have no idea what this blood sample is called in English, in Swedish it is called “Bastest” but it is a sample you take in case you’ll need a blood transfusion. I could only suspect this was also taken because of the low Platelets I had before the Pleura draught to check that up but also then if maybe I was bleeding inside, or have been, after the draught because of the low Platelets, however I haven’t noticed anything myself that that could been the case. After the blood had been analyzed one of the doctors would call me during the day.
It is now a week since the Pleura draught was done and even though I could feel a bigger difference this time in my breathing, compare to the last time the draught was done in July, I have been very tired and frozen during this past week. So I have spent most of my time on the sofa, reading or watching TV, with a blanket on.
She told me that both my Leukocyte and Platelet levels had sunk since last week; the Leukocytes were however still on an acceptable level but not the Platelets. That the Platelet level now suddenly fast had started to sink could mean either two things; either my sickness now had started to move again in my bone marrow or that the chemo pills I am taken, the Ixoten, now had effected the bone marrow too much. So Dr. Monica now took the decision that I had to stop taking the Ixoten pills right away and next week on Wednesday have another blood collection to check up the Platelet level again. If the Platelet by then had risen again, we would know that the sunken Platelet level had been caused by the Ixoten pills, if not, well then I don’t know what would happen. But all this mean now that I have to be very careful and try not to hurt myself in any way so I would start to bleed but also I have to be aware of any spontaneous bleedings such as from nose, mouth etc. or suddenly gets bruises anywhere for no reason. If any of this should happen I have to call the Lymphoma team right away.
We also talked about the “glue” procedure of my lung and as for now we are not doing the procedure. We will wait and see if my lung can cope with it itself and not fill itself up again with fluid and of course they can’t do the procedure anyway right now because of the huge bleeding risk.
So I can only hope now that next week the Platelet level had risen again so I can start taking the Ixoten again, maybe in another dosage, since it at least seems to slow the tumor growth down, even though I can feel it pops up new ones here and there. But the interruption in taking the Ixoten pills scares me a great deal.
September 28-29 – Blood collection, the “Angry Walk”, call from the doctor and back on the Ixoten...
On morning of Wednesday of the 28:th I went in to have yet another blood collection done and this time I really would hope that my Platelets would have risen so I could start taking the Ixoten pills again. I was very nervous about this now since for the past week I have started to swell again, have gain more weight than normally and could also feel that my both legs have started to feel like two big wooden logs, so I was now back to be forced to use those awful compression stockings again, which I have more or less not used at all since the hospital admission in July.
When I came home I started to wait for the doctor to call me and I waited and waited and almost started to climb the walls out of nervousness. You might think I by now would have gotten so used to all of this but I don’t think you will ever get used to this torture of not knowing if the message would be good or bad from the doctor, unless you stop caring about what happens to you, I haven’t so I hate everything that is going on with me and around me when it concerns my sickness. Anyway, after a couple of hours of waiting I couldn’t stand it anymore so I went out on one of those “Angry Walks”. If I have been at the office in Linköping I would have said that I was about to take a walk to “Tekniska verken” and if I have had my office wastepaper basket available, I would have kicked it and put yet another buckle on it along with the many that already are there.
So I went on my “angry walk” aka “power walk” and to my surprise I managed to walk on pretty good, unless for going uphill; that I can still not handle that well and doing it makes me gasp for air and it takes a while before I start breathe normally again, but on flat land, and if I don’t have to carry anything at all, I can walk quite well now. However, the walk didn’t help that much about my angriness/nervousness. When the clock was about 5 in the afternoon I decided that if anyone from the hospital would call now I wouldn’t answer it. If the message was about to be bad I would probably not be able to either eat dinner or sleep in the evening. But no one called, not until the next day.
It was about lunch time on Thursday the 29:th when the call finally came and it was Dr. Sverker (as I call him; Håkan Södergren’s lookalike, a former Swedish hockey player that are bald and quite beefy (Sw. transl: biffig)) on the phone this time. Well, not much had happened with my Leukocytes and my Hemoglobin in a week but the most important thing was that my Platelet level had started to rise again even though it hadn’t been a huge rise but still, something had at least happened at all, Phuiii. So I could go back on the Ixoten pills again but Sverker lowered the dosage a bit and then I had to come back next week for another blood collection and then a phone call from the doctor about the results.
October 5-6 – Blood collection, call from the doctor and the “glue” process are on...
Have no idea why, but lately I haven’t slept very well the night before my weekly blood collection, so this night I didn’t fall asleep until 4 o’clock in the morning so when it was time to get up to get to the blood collection, I was dead tired. Today I also had a few more things to do at the hospital, go to the pharmacy to get some more Ixoten pills (these pills have more or less caused practically problems from the start, and of course also today) but also I was going to see a nurse to have an interview done about my psychological health.
So I started up after the arrival to Sahlgrenska with going to the pharmacy. As I have told you before, the Ixoten pills are not on the market anymore but they are still making them. This means however that for me to get them; my doctor have to apply to the Swedish Medical Board for an approval and since I started with these pills my poor doctor have had to make a new application every month for this since the board only had approved for a month’s supply on one application. This time my doctor tried a new way with the application so I at least can take out a month’s supply 3 times on the same application and a couple of weeks ago I got a call from the pharmacy that the application had been approved by the Swedish Medical Board and that I could come in and get the pills, still however then with just one month’s supply at the time, but this time then for three times and after that yet another application for it have to be made.
So I got to the pharmacy just to find out that they couldn’t find the approval of the drug from the Swedish Medical Board. I could only sigh to the whole thing and was standing there while they were looking for the approval, but they couldn’t find it. So I said that I had to go now to the Lymphoma team and be gone for a couple of hours and that they could keep looking for the application approval while I was away and then I would come back.
I went to do my blood collection and this time it went well, no digging in my arm and then I sat down in the same waiting area, to wait for the nurse that was going to conduct the interview about my psychological health. This interview thing are a study I am in, together with Elisabeth, and where they are trying to find out about a tool used on the web that we both are able to use, and see if it’s useful for both patient and next of kin when it comes to how we are feeling. This tool makes you get in touch with a registered nurse, basically in a normal e-mail, and you can ask question there about anything, but mostly if either one of you are feeling psychological bad in any way. The tool itself is not good at all and we haven’t really used it at all since it started. So I actually thought that the nurses question would all be about the tool itself and I had prepared myself to tell her what I thought was good and bad about it. Well, I got to say my piece about the tool but she was more interesting how I was feeling inside and she recorded everything I told her. She wanted to know all of my illness history, since it all started, and that took me a while to go through and then we came to the part about how I was feeling inside and I told her; I do not want to talk about the bad stuff at all but I can tell you how I am feeling inside, and so I did. I am not going to write about what I said but let me put it this way; I can only take one day at the time but basically all the time, all bad stuff is spinning in my head and of course this is depressing me and some days I wake up in the morning and don’t want to get out of bed. Now after this, she will do the same interview with Elisabeth, who had been beside me all these years through this really bad journey.
After the interview was done I went back to the pharmacy to see if they had managed to locate the application approval from the Swedish Medical Board so I could get my Ixoten pills. No, they hadn’t been able to find it!! So while I was away they had called the board and asked them to fax the approval again which they had done, so finally I could leave the hospital with my pills.
The day after on Thursday the 6:th I was going to have a phone conversation with my doctor and this time I knew I wasn’t going to get the phone call until the day after the blood collection, so around lunchtime on Thursday Dr. Monica called me. After one week of holding up the Ixoten pills and then now another week while taking the pills again, but in a lower dosage, both my Hemoglobin and Leukocyte levels had improved a bit, not much but in my case any improvement at all are positive. My Platelets? Well, they seems to have get stuck at a very low level but at least haven’t lowered since last week.
So we then got in to talk about my poor lung and I told Monica that I still kept breathing heavy when doing something strenuous even if it feels better after the last Pleura draught. Monica then asked me if it felt like it had gotten worse since the Pleura draught, if it had felt very good at first and then lesser good. I replied that it was hard for me to say and this made Monica to say that she thought we then should do the “glue” procedure of the Pleura now, to get me some better life quality. I can’t say I was too happy about that, I really had wished it could be avoided, at least for a longer period of time, but I realize also it is most likely for the best. So Monica will now send a referral to the Lung Medicine department about doing the “glue” procedure and all I can do now then, is to wait for them to call for me, have no idea how long time it will take. In the meantime I will keep going on my weekly blood collections.
October 20-24 – Yet another Pleura draught...
Well, I am behind with writing in my journal again and this is written in middle of November. Things are not exactly good.
Between October 5 and October 20 there had been some blood collection as well as some phone conversations with doctors at the Lymphoma team. My breathing problems caused by the fluid in the Pleura are really bothering me, can’t take two steps without starting to breathe heavily, and it really feels awful, it’s like I don’t get enough oxygen and I almost starts to panic when not getting enough air. The glue procedure is about to happen but the problem is that there is not one single hospital bed free and I need to be admitted during this procedure. So while waiting the doctors decided I had to have yet another pleura draught done, trying to ease my breathing and hopefully there would be a space for me at the hospital next week. They are trying to speed things up but there is not much to do when there is no space at the hospital, they can’t exactly throw patients out of the hospital.
So on October 20 I then had my third Pleura draught done and I have by now started to have this love/hate feeling about it. I know it feels really good after it is done, the breathing becomes much easier right away, but the procedure is not that pleasant. So again one liter of fluid was drawn out of my Pleura and I could start breathing easier again. Unfortunately this time it didn’t last very long. After the weekend it was all back again but on Monday on the 24:th they finally called from the Hematology ward and told me that they had a bed for me now and that I would be admitted the next day, to start the glue procedure which would take 3-5 days to perform. I was a bit afraid of the procedure but at the same time I was so looking forward to it, I can’t express hard enough how awful it is to not be able to breathe properly.
October 25 – The admission to the hospital...
I packed a bag the evening before and also took a book and my computer with me, I thought this was going to be some lazy boring days and I wanted to have something to do. Hmmm, well neither book or computer was used.
I came in to the Hematology ward and was shown to my room and bed and I realized I was going to share room with two other women. Thank God I took some ear plugs with me since I soon discovered that both these women snored like crazy. Not much happened with me this day, the first step of the glue procedure was about to happen the next morning, they just inserted a needle and took some blood samples and that was it, but I experienced a very interesting thing during the day, a bone marrow transplant.
One of the women in my room got a transplant during the day, in our room, and for me being a lab person it was extremely interesting to watch that procedure. Now I understood exactly why the hospital ward had asked me if I were sick in any way when they had called me the day before, but at the time I just thought it was a generally question, but this women had of course zero Leukocytes which is the case when a transplant is done and since they now days don’t isolate people they of course wanted to make sure this woman wasn’t expose to any sick people.
When I later got the results of my blood collection I got a bit of a shock, I had barely any Leukocytes myself, only had 0,5 in my Leukocyte level so I was extremely sensitive to infections too. This was not good at all since they were going to put a tube into my Pleura the next morning and we didn’t want any bacteria to get in there and the glue procedure itself was going to cause an inflammation in the Pleura so they put me on antibiotics right away as well as I had to start taking the Leukocytes stimulate shots. This got me a bit worried but I was looking forward to the next morning since my breathing now was very bad, and it was hard to find a good position during the night to be able to breathe so I could sleep.
October 26 – The insertion of the Pleura catheter and the emptying...
At about nine o’clock in the morning I was sent down to the Lung Diagnostic ward in my bed to insert the catheter into my Pleura, this catheter was then going to be stuck there for some days.
This procedure itself was very similar to a normal Pleura draught with the difference that this time they performed the procedure under very sterile circumstances and this time it was not just a needle that was put into the Pleura, instead a thick tube/catheter was put in there and the latest meant that a hole for the tube was cut open with a scalpel and the tube was then stitched into my skin. This time the anesthetic hadn’t worked when they had started to insert the catheter so I had to tell them to stop for a moment and just wait a while, I could still feel that it hurt, but after a half a minute or so I told them to continue and finally the catheter was in place. I didn’t realize that they had started to take out fluid at the same time as the catheter was in place but suddenly I could breathe easier and they showed me the one liter of fluid they had just taken out. After this I was sent back to the Hematology ward and had to stay on my back for at least an hour. The Lung people had also sent with me instructions how to handling the emptying of the Pleura, that was handed over to the nurses on my ward that was going to perform the emptying on me. I had understood quite quickly that this procedure was something that not many on my ward had any experience of, including the doctor’s.
The catheter was now hanging out from my side between the ribs and now the totally emptying of the Pleura began. Every second hour they were going to put a bag to the catheter and let half of a liter run out in the bag until the Pleura was completely empty. Every time this was done they had to do it slowly and also measure how much that was running out. This came to be a hazard later when the Pleura were almost empty, but also the pain when the anesthetic had disappeared was hard to put up with. I tried to explain the pain with as if I was a vampire and someone had put a wooden pole into my body and left it there so I got some strong pain killers which made me extremely tired and didn’t really help. Elisabeth came to visit me in the evening and she told me that I looked as I had fallen apart as well as I was in the age of 80, all this because of the pain from the catheter that didn’t go away.
It was after midnight when the fluid finally stopped running and the past 2 or 3 times they had sort of opened the tap I had started to cough hard and for a long time. I coughed so much as for an hour afterwards and that also made me to puke, not because I felt sick but because of the hard coughing affected the puke reflex. During the opening of the tap I also felt like the lung was drawn out of my body as well as dyspne’ (Sw transl: andnöd), later this was explained to me as what happened when the lung is sort of stretching out again after been disable because of the fluid in the Pleura. All of this was hard to put up with and on the final openings of the tap, it got worse and worse, so I was extremely relived when it finally stopped running.
After the fluid had stopped running the tap was kept open and the bag was not removed to let the “leftover”, that kept coming now and then, run out by itself. When the fluid stopped running shortly after midnight, as much as 4,1 liter had been taken out of my Pleura and let me tell you, that is a lot...
Now I had to wait for the “glue” process and that was going to be planned as soon as the “leftovers” wasn’t coming too much anymore. My Pleura didn’t need to be completely dry when they are inserting the “glue” but as dry as possible. When I was left alone and no opening of the tap was done anymore I fell into a really deep sleep but woke up about after an hour and had no idea where I was. I was completely disorientated for some minutes and was trying hard to figure out where I was and that felt really scary but as soon I realized where I was, I fell into deep sleep again.
It had been a hard day at the office.
October 30 – Been in bad shape lately and admitted to the hospital...
How good it felt to be able to sleep in my own bed and in silence during the night. Have been in quite a bad shape lately and had been admitted to the hospital for a while to fix my lung problems that fast came to be a major problem (and of course there came to be complications as well), and was permitted to go home late last night after many discussions between all involved doctors. I’ll write more about it all later, right now I just need to rest.
Later...what happened on October 6-30 is inserted before this one.
December 15 – Situation are bad...
I am not writing here right now or been doing so for a while, the situation is very bad at the moment, as bad as that it will probably take a while before I will be able to update here properly again. Merry Christmas and Happy New Year to everyone out there.
April 5 – Believe it or not, I am still here despite all bad things...
Phuiiii, what can I say more than I didn’t believe there for a while I would ever write here again, nor did anyone else I think, my doctor even wanted to discuss the possibility for me to get into a hospice in December.
I could write a really long story about everything but if I did that I would guess people would stop reading because it would be way too much to read. So the long story will be a much shorter one than it actually was…Hmmm, maybe I shouldn’t say that, if you know me.
On November 15, 2011, I was scheduled to start up with a brand new chemo treatment, so new that it actually just had been approved by the Swedish Medical Board just two months before. However, the fluid in my Pleura were still such a big problem so my doctor didn’t dare to do it because they didn’t have any experience how it could affect me, the chemo could get stuck in my Pleura and sink my bone marrow completely. So when I got to the hospital that day, I instead ended up in a hospital bed once again giving it a new try to glue the Pleura in my right lung, of course the first attempt in October had failed completely. What I then thought was going to be a hospital visit for 5 or 6 days ended up with 42 days with a draining tube in both lung’s Pleura, a lot of pain and morphine, hardship and struggle and when I finally came home again I was in really bad shape. I even had to spend Christmas at the hospital which I was very sad about.
About 10 days after coming home I had to call the ambulance since I could hardly breathe again so yet another week was spent at the hospital. When I finally came home for good I was in really bad shape, both mentally and physically. Then on January 17 I was back on a doctor’s visit and was put on a high dosage of Cortisone together with a rather high dosage of Diuretics, to try to slow down the high amount of fluid that kept coming but at least for now it seemed as the 3 attempts of gluing in both Pleura’s that had been done had been able to do it’s job even though it wasn’t 100 % successful. But of course this meant that the fluid filled up somewhere else instead, which was in my belly. But the Cortisone did work after a while even if it didn’t stop the fluid completely and I slowly started to feel a bit better physically. But for a long time trying to do things was like climbing Mount Everest. After the long hospital admission I had no strength left at all and needed some help at home.
After the last doctor visit in January I didn’t want to go to the hospital anymore, I was too weak and it was a lot of hardship to do it so after that I had been in contact with the doctor by phone every 2 weeks or so instead. I also have some help from the primary care, they are coming home to me and take blood samples so I don’t need to go the hospital to do it and that works really well.
So after slowly getting a bit better it was decided we would try to cut down the dosage of the Cortisone and this was in the end of February. That was not a hit at all; slowly I was feeling worse again and today I feel really lousy. So yesterday I talked to my doctor and I am back on the high dosage of Cortisone again and now I also can decide on the dosage myself, as my doctor said; the clock is ticking and that I also know about these things so I don’t have to wait for any orders from them. Hopefully this means that I can start feeling a bit better again even though it won’t happen over a day.
So this is where I am today and I know I have made some people worried by not writing here for a long time but when I said that doing things was like climbing Mount Everest that includes writing here as well. Some even thought I was gone by now but not yet, but eventually it will happen. When it will happen I don’t want to know, but it will someday, there is no hope left for me but I try not to think or talk about it even though it pops up now and then. This is my way of trying to cope with it, otherwise I would go crazy.
I also need to say to my lovely Champs sisters; many big thanks for all your support and help after I got home from the hospital with everything from grocery shopping to coming over with dinner as well as checking up on me and keeping me company for some hours now and then. I love you so much and I don’t know what I would have done without you, I am blessed to have such wonderful friends. I am also so glad that I managed to go on our yearly week 12 trip to Sälen even though it was a lot of hardship and a rollercoaster of emotions and I didn’t have the strength to do barely anything. But it was worth every second of hardship and when Rydell and Quick came over to our cabin on Saturday evening to play and sing for us unplugged, it came to be a magic evening.
To be continued......
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