Multiple Myeloma community

Myeloma, also known as multiple myeloma, is a type of cancer arising from plasma cells which are found in the bone marrow.

Geneviève's Story

Written by Geneviève, published 5 months ago.

My name is Geneviève Gigand. I have been living in Germany for a very long time now. I have been in Germany for 33 years, and for the 23 years before that I lived in France. Ever since I came to Germany I have always wanted to teach and paint, and as a French woman in Germany I felt right in my element – my environment really suited me.

For three years now I have been living in Lienen, a small town not far from Osnabrück, in the north of Westphalia. The landscape and the countryside do me good, and I make use of all the opportunities there for my personal development. By chance I was diagnosed very early on, but it was ten years ago that things seriously got going.

One amusing little detail in passing: after a rather banal visit to a fortune teller who told me that I might have a problem with my health, I decided to go and see someone. I was told that my values could develop in a negative way. I had what was known back then as “monoclonal gammopathy“.

What the doctor said was: “At the moment there is nothing at all we can do. Your bones are healthy, and you don’t have any problems with your organs, but you must be careful to avoid infection.“ And I was perfectly happy with that.

In 1994, I was on holiday with my mother in the Canary Islands. I went swimming, and the next morning I woke up with inflammation of both of my ears. I decided I had to go back. Everyone thought I was mad, but I flew back home. I had to. I had to get back without fail, and even that was extremely risky. As soon as I arrived I was operated on, I had a blood test, and the next day the doctor came to me and told me that I had a blood disorder.

So that was it. It made no sense to me at the time. It came as a complete shock. That all happened ten years ago.

Back then I knew nothing at all about multiple myeloma. It meant nothing to me. In Germany at that time they called it “plasmacytoma”, which was just as much of a mystery to me. They said that it needed to be monitored, but my doctor had explained nothing about what it was, and I didn’t ask either. I didn’t even think of asking. And actually I think I didn’t want to know that I had something serious. I lived for almost ten years without knowing what kind of illness it was that I had.

Then I needed to begin a course of chemotherapy very quickly, and a friend recommended me a doctor in Berlin, who spent six months (laughs) trying to convince me that it really was time to start.

For me that was something very important - to have the support of a doctor who also considered my personality; who stressed what was important, but who was also able to wait, because I needed the time.

And then I started. I started getting treatment. It consisted of infusions - infusions of chemotherapy and cortisone. And I remember that the first time when I went back home I felt really good, and I said to myself, “This is going to work.“ The fear had gone completely. The treatment was repeated every two weeks, and then every four weeks, and I think this treatment continued for at least three years. During all that time I was back teaching. I was able to get treatment but teach as well. I dealt with it very, very well. And no one knew a thing about it.

In 2001 I had a relapse. It was very bad, because they also had to do dialysis; my kidneys didn’t work properly any more. But I think I was really lucky again: after three weeks of dialysis my kidneys were fully functional again, and were possibly working even better than before.

Since 2001 I have thought again and again about going back to work, but I very soon realised that it would just be too much for me, and that I really just need to stop working. So since 2002 I have been retired. Since 2001, I have been continuing with my chemotherapy, and for two months I have been on this new treatment, because the illness is still there. My condition was no longer very stable, so we had to find something else. This medication, Velcade, has only been available since last year. At the moment it seems that it’s working already.

At first it was a secret: only my friends knew that I had this illness. I believe that multiple myeloma, as I now call it, is really a part of me. I have always needed friends, I have always needed people who I can talk to, even if just in a café. Now it is possible to find groups, like the one at the cancer centre in Osnabrück, which provide so much help for people who are lacking something: lacking contact, lacking information. It’s also great to know that, as well as all that, there are also things that you can do together.

So I think, when you have an illness, there is always the opportunity to do something, or to improve something. The most important thing is to talk, really to find the opportunity to talk, either over the Internet, or by meeting up with people who are in the same situation.

I think I was incredibly lucky to meet my boyfriend, and to have the courage to begin an adventure, and to try to live as normally as possible. That was really very, very important for me, I think. I think that was the most important thing of all.
I think for people with this illness, the most important thing you can do is to try in every way that you possibly can to overcome the fear. Of course you can't simply leave your fear by the wayside, but you can integrate it. Fear is poison.

Story courtesy of Myeloma Euronet, originally published online here.

Written by Geneviève, published 5 months ago.

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