Experience stories of cancer patients how to live with cancer and / or survival.
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Experience Story Leukemia - AML - Acute Myeloid Leukemia: French
THE STORY OF A PARTNER (summary)
I Nijhuis Lucy born 1960 and in 1984 married to French (Acute Leukemia Meloïde-patient) was born 1957. Together we have a farm with pigs.
It all started in December 1987. French had been for some time suffered from bleeding gums, which eventually began to smell. He went to the doctor and sent him immediately to by blood sampling. In the afternoon the doctor called back, saying that the blood was not good and that he had to go to the Regional Hospital. After many trials that same afternoon, we knew at the end of the day, how serious it was, Acute Leukemia Meloïde. It's hard to describe how you feel after such a message. French was sick the doctors said, but he looked not ill, and he was not sick. The next day, she immediately started chemotherapy and became French in my eyes when ill. He felt sick and sick of courses and I was just scared. I cried with fear. It was so unreal! The seriousness of this situation calls for it to really slow you through. I had so many questions. We were only married for 3 years, what I had to imagine the future, we still have a future? Children? We were at that moment not ready, but it later? Questions, questions, questions, and never got a response.
The first chemotherapy has endured quite French. There were side effects, but we did not see the danger of this. Our goal was in Leiden. From the first week that Franco was sick, we knew that a bone marrow transplant could be his only salvation, without being aware that you first have good "clean" would have had you in Leiden.
While French was in the hospital went through our company. Then the remaining cows were gone and I focused myself on the pigs. I had always worked as a home help but the sickness was in French when ill. Later I could not agree stopped. The work in the stables was initially done by the farm (supplemented by family and myself) and over the years, I do everything myself. I was at that time also an avid handball star. The sport has always been my "outlet", I had only been to stop and listen to my body screamed for rest.
After the chemotherapy in the regional hospital but for the inclusion in Leiden, the semen of French recovered well enough to freeze.
Then the June 13, the day of admission in Leiden. At the moment the swinging doors of the department behind us are counted only: SURVIVORS! Was no room for anything else. Often I was asked: "how do you full?" or "can you still?" I did love the full and of course I could handle it. What was I supposed to? If I had not insisted that French then?
June 30 was the transplantatiedag. His brother (donor) joined us in the room during the transplant (bag of "blood" where the new bone marrow in it) You want to say much and there's nothing to say. The tears are high, you can only sincerely hope that this new "life" will catch on.
The first half year after transplantation, there have been regular hospital admissions. Shingles, intestinal infections, bladder infections and fevers. Often it was 3 weeks at home and then a few days shooting. Every time the weather was scared, uncertainty and fear. I kept in French, had my own "corner" in his room. For French, it was enough that I was there.
December 1988 will receive a French major complication. He is recognized for an intestinal infection, but it soon becomes clear that he has problems with his lungs. He was treated for fungal infection weeks until he suddenly gets a collapsed lung. His doctor told us that they can do nothing for him and that we should prepare for imminent death. Alone .... There is a small chance of 1%. Because they are 100% fungus never able to prove there was something in theory and lung rejection. French gets a mammoth dose of prednisone and must be within 48 hours refurbishing, .... And he does.
As a French after 10 weeks in the hospital back home, he remains very weak for many months. His lungs are a major problem. Again and again there are infections and fevers. But the complication Sclero Dermie (hardening of the subcutaneous tissue) that causes severe problems mee.Voor French because he has kept stiff muscles, but also for me because it really changed his body. It felt different and it gave me much trouble.
I had been taught to make arrangements in the social world. Too often I had to cancel because she was sick again French. I wanted to pick up threads of my life but did not get far. We lived a day. Every morning the face how he felt. The threat ofdeath was hanging heavy over us. In retrospect I think I already have started to get minor irritations. We had no normal man / woman relationship, but more patient / carer. French was sick and I did everything for him. I got problem with that life revolved French. He had been sick long enough, I wanted another "normal" life for both of us, as far as was possible. With any attention I said I felt guilty. Was this justified? French was sick, not me! But I lived here as well? It happened to us more often that we were silent rather than unnecessary words. The conversations were superficial. Each topic that we knew that it hurt the other was avoided. I got stuck. I wanted to talk with French about the fear I was losing him on the uncertainty of the future. Physical contact was not at all, I was often rejected because every time something was what bothered him. I missed that intimacy with the French.
Meanwhile, the company (what I did) and the sport continues. I had all the limits of my abilities already exceeded but did not give me tired. Our relationship was in a bad way and I go and look at the RIAGG and later in a haptotherapeut (because I had many problems with my body). The psychologist encouraged me to write. What I've done in the form of letters to him. Letters full of guilt, fear, despair, anger and powerlessness. Finally, we combined five years in therapy and thus stopped in 1996. We are now well together! His lungs are a persistent problem (a few times a year with pneumonia) muscles are stiff (2 times a week physiotherapy), his skin is very thin. In 1996 he got diabetes, jan.2000 a new hip and cataract surgery in March 2001. A new complication to his lip still needs to be addressed. My story is apparently impossible to close. I now know that it will never be as it once was. Include fatigue, forgetfulness, loss of concentration and altered body: it belongs to French. I can better accept and handle them better if I stay it is often still very difficult. Despite everything, his mood is good and we have fun together again. Our good fortune was born in January 1997. After 3 failed IVF attempts, the time it hit the 4. We got a healthy twins and have a future.
My story as a partner .... appeared in book form titled "Re-touching following cancer" f obtained by transferring 28.40 (including p = 3.40 postage) to Rabobank 39.75.65.739 tnv Number Nijhuis, Saasveld stating your name and address.
