Myeloma & Me - John's Story
I guess I knew it could be coming because I knew that MGUS could be a prelude to that but it was still like being hit by a train really. I can remember it quite clearly, as you always do with something like that, you can remember the day, the time and everything. I went in and sat down and he told me that I had myeloma, that the MGUS had progressed into myeloma. The consultant said to me at the time, "we would like start on chemotherapy straight away, within the next few days" and threw lots of information at me. At the time I just thought I need just to let the dust settle and absorb this. I said, "Well can we just take a couple of weeks break so that we can at least take a quick holiday?" They were very helpful and said "yes" and we went off to Barbados for a week. I was in hospital for the stem cell transplant during which they gave me a very strong form of chemotherapy which kills all the bad cells that are left in the system after the chemotherapy plus all the good cells as well. So they give you that and then 24 hours later, they give you back the stem cells which they have previously frozen.
When I got home from hospital it was a bit unnerving because of the sensitivity to the risk of infection and I was worried having a dog whether I would be OK with the dog. I decided well I love my dog and I wasn't going to be put off by that. Things like that are quality of life issues.
It took me about 3 months to really let it be known that I had a cancer diagnosis because the first three or four people that I told, some of which I counted as really good friends, I had a really bad reaction from. Now I can understand maybe the reasons for that, in that nobody wants to consider their own mortality. When you present the details to somebody that you don't have a good prognosis, it is one of those things that can make people feel awkward. It's surprising how people come out of the woodwork. People that you wouldn't expect who turn out to be great sources of strength. Amongst those sorts of people, as I said I live in a small village, I would say that the local village community have been a great source of strength to me. I was quite fortunate in that a chap by the name of Duncan decided to start up a support group with the help of Myeloma UK.
Going along to that group has been, I would say in some ways, life changing for me. I was very grateful that I was told about the presence of Myeloma UK and the work that they do because it made dealing with myeloma a lot easier. The most important piece of advice I could give to anybody is make sure that what you're doing makes you happy.
I don't know what the future holds for me but I do know that for my own piece of mind and sanity and for those around me who care for me, I will always do my best to remain positive and to just get on with it really.
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