Then in 2007 I went for a review again to the hospital. I’d been feeling a lot more tired, a lot more lethargic, and just no energy at all to do anything. Mentioned it at the hospital, but I also saw a different consultant this time, who then said to me that, did I realise that I had exceeded half my life expectancy?, which was a real shock when I’d gone along to the clinic expecting them to just say, “Fine, everything’s okay. Go away. We’ll see you again in six months”. And she just said, did I realise I’d exceeded the life expectancy?, because at diagnosis it was fifteen to twenty years. And I just sort of was taken aback quite a bit with what she said. And then she said that, would I consider a bone marrow transplant?, which was the first I’d ever, ever heard about bone marrow transplant. In the literature that I’d read up myself I’d found that there were stem cell transplants but it was only done in exceptional circumstances. Certainly this was the information I’d had in 2000 to 2002. And obviously this was something totally new for me to sort of consider.
She then asked if I would speak to my siblings to ask, because that’s the only person that can actually give the donation, and to ask them if they would then consider having testing.
And I then went, I contacted the hospital and I actually spoke to the haematology nurses again, who said that it would be an idea to come back and speak to the consultant but not in a clinic time. So she arranged for me to go back to the hospital to speak to the consultant, who explained that she didn’t necessarily mean that I was going to have a transplant there and then; this was something to be considered for when things get worse but that she would still like my sisters to be tested so that they actually have the records for it. And I actually came away from there feeling even more confused, if anything, because one minute you’re being told you’re going to have a transplant, the next minute, “Oh no, you’re not going to have a transplant. This might happen in five years time or it may not happen at all”. And you’ve just then told sisters, “Well, I’m possibly going to have a transplant”. So everybody was completely confused with the answers that I was told.
My sisters were tested before Christmas, and it took two and a half months before you get, they get, they receive the results. You’re not allowed to receive or be told the results in any way. It’s up to the person concerned, whether they are possible donors or not, to tell you. My sisters contacted me and both told me that neither of them were possible donors.
So I now know that I haven’t actually got a family donor. And I went back to see the consultant again at the hospital, who explained that she would wait until things got any worse before putting me on a donor list. There may be a way of treating me with other forms of treatment, and she listed, she explained what those were' one being chemotherapy, on a low dose system where you would take a tablet every day; and then the other form would be a more aggressive form of chemotherapy and radiotherapy, and explained that if I did have to have a transplant I would have to have chemotherapy and radiotherapy and be in hospital to receive all of that but it would only be via a transfusion and nothing worse than that to go on.
I have continued to have the tiredness and the pain and the joint pains but they’d actually asked in the clinic in the latter part of 2007, had I had any chest infections or anything like that?, because apparently that’s another symptom of leukaemia developing and increasing intensity. And in fact I’ve started gettin