Not so bad

I've had a few phone calls and messages from friends who have read the last blog and are really sorry to hear the bad news, and I realise that I may have been overly negative in that post as that was how I was feeling at the time. I shall acknowledge the disappointment of having the transplant pushed back 3 maybe 4 weeks and proceed on a much more positive note...

I had an appointment with consultant yesterday and we have it confirmed that we have another donor. She is a female, 50 and from Germany. She is a 9/10 match, so as good as the Portuguese male, and the slight increased risk in GvHD which we will get due her being female is generally controllable and this can also be a good thing as it also means an increased chance of GvD which we want. He discussed the odd balancing act or trade off which exists because of this, i.e. they want to minimise GvHD but they want GvD, GvHD is nasty but is generally controllable and generally short-term, GvD is desirable as it results in the long-term cure. So for short-term discomfort you get long-term cure. The less short-term discomfort the less likely this is to cure. Are you happy to take a little bit more risk with short-term affects if it means you are more likely to be cured? Yes I bloody well am. So bring on the woman.

I don't want any more jokes about getting a sudden urge to knit in hospital.

We also found there is another potential donor they are looking into before this goes ahead just to make sure she (it is another woman) is any better. Results of SFLC and bone marrow aspirates show no increase in Myeloma cells again which is great and maybe the reason my consultant feels he has a bit of time to look into another donor first. The urgency is there but not as bad, and I think the fact that 2 donors have been found has possibly made them think it is worth keeping on looking for more. Which makes me feel that any nasty procedure which was discussed a while ago is well off the cards now. Which is great.

So we feel loads more positive about all this having had this meeting so I want to make sure anyone who cares realises that this loss of a donor, although disappointing, really isn't that bad.

I also passed my lung function test, so I am happy that nothing to do with my body that will hold this up. It was also conducted by a much more relaxed fellow who explained everything to me, let me see the computer screen as I was doin it and just kept telling me 'that was spot on'. He made me realise the last tester's hammering for that 'last little bit' in my lungs was actually a bit unnecessary as my lungs are well within the normal range and that last little bit would have made no difference to the results!

Delays

Today was supposed to be my last week before going in to hospital for the transplant, we were waiting for confirmation from my donor of a date when he wanted to donate and I would undergo tests this week to check my fitness to go through the procedure. I went in today for the kidney function test which involves me being injected with radioactive material then having blood tests after 2 hours, 3 hours and 4 hours to see whether the substance has been adequately dealt with by my body. On Thursday I will be having the dreaded lung function test.

Now I have been getting progressively more anxious in the run up to this transplant and have stated I would relax a bit when I heard the donor had set a date, but would not be completely happy until those cells were there in front of me. This anxiety was based on my fear that he would pull out, that they would not be able to find a suitable time or that the plane carrying the cells would crash with my cells on it. What I had not planned for was him being found to be 'medically unfit' to donate; this is what the transplant nurse informed me this morning. In what way we will never know, but in one second suddenly all the hope and happiness that had hinged on this one fellow being found, against the odds, to match me was gone. My stomach dropped in that way that reminded me of the feeling of pressing 'send' and realising that you have just replied to all. But worse, much much worse.

Then in the next breath the nurse told me that there is another donor who has always been there and who is an equally good match in terms of tissue type, the reason they chose the Portuguese male is that the other donor is a 50 year old German woman. However, if she had been the only donor available they would have gone with her straight away. She has had 2 children, and both this and the fact that she is a woman make Graft-versus-Host Disease more likely. The nurse was quick to point out that GvHD to some extent is desirable as this means you are more likely to get the desirable Graft-versus-Disease effect, and she also told Jo later that they do plenty of female-male transplants and that the GvHD is generally controllable. She also said it would be very unlikely for both my donors to be found unfit to donate - however it is very unlikely that a 32 year old would get Myeloma, but I did - so my anxiety about getting these cells will not diminish now until they are there, in a bag, going down a tube into my arm. Her age may affect how long it takes to get the number of stem cells required to do the transplant as the bone marrow is not as efficient at producing cells as it gets older, but there is no reason to think that the quality of the cells would be any less than those obtained from a 37 year old man. The ball is now rolling to get in touch with this lady in Germany to find out a suitable date for donation, and undertake the tests for medical fitness, this will take a further 2-3 weeks.

So another rollercoaster day at Addenbrookes. After the conversation with the nurse I didn't know what to feel. I went to loos and cried for about 5 seconds then pulled myself together as I am in no worse position than I was in yesterday. I am still a man (for now) awaiting a transplant with a suitable donor for whom we are awaiting confirmation when and whether they can donate. It's just another 3 weeks of limbo time.