Home Again

I am home again and hopefully this time I will last through the coming weekend too, although this period of illness has shown us that I am still not quite fit enough to do the things that maybe I feel I should be able to do. This means I shall not be travelling to London this weekend to see Brother Fairchild run the marathon, which I am most disappointed about especially as I understand there is an Anthony Nolan get together at the finish. Tea, biscuits and stem cells... 

This is a final reminder to anyone planning on donating, the marathon is this Sunday donate now! www.justgiving.com/neil-fairchild

And the reason I was so ill...the common cold! Yes I was hospitalised for 4 days at a cost of £250 a night to the good honest taxpayer for the bloody common cold. I have to admit I felt slightly embarrased when the haematology doctor informed me of this, it seemed an incredible fuss for something which is not treated in any way, and most people just go to work and get on with it. I asked if it was normal for someone post transplant to suffer in the way I have over the past two weeks and was told that actually most people suffer more. I have the benefit of an immune system which has bounced back relatively quickly, my counts are all normal or well above normal, indicating things are working. So why am I getting so ill? It is because I have absolutely no defences ready, every bug, even the common cold is brand new to my body so there is nothing prepared, no memory, no antibodies to deploy, so although I would eventually fight a bug such as this off, my body needs some help and my reaction to it is in the extreme.

So I am much better, my temperature has stayed down although I still feel quite lethargic, and I have a pretty nasty cough. But I also have antibiotics to continue taking at home so hopefully that will shift. I actually felt better the moment I left the hospital as I had not been allowed out for a couple of days so I had been banging around in a room which had two beds in it all on my own...and I had finished my book and was rapidly running out of DVD entertainment. It is amazing how much better you feel when you are not just lying/sitting around all day doing nothing.

Once I had been diagnosed with that nasty, horrible common cold, the other bed in the room could be used and I was joined by an elderly gentleman who seemed really nice. Until he went and took his trousers and pants off without closing the curtain between our beds or, more amazingly, without closing the door to the room which faced out to the reception area. A nurse popped her head in and said 'do you want me to close the curtain for you?', 'no, no I'm fine thank you'. I don't know how much of that I could have taken.

I also had a serum free light chain (SFLC) blood test done yesterday (results take 3 days to come in) which is really nerve wracking as that will give some idea as to whether the stem cell transplant has got me into remission. We have recently come across a study of a very small number of people (studies of donor transplants and myeloma are always small as they are generally not done due to the age of patients) which showed that the likelihood of a 'curative effect' (never cure) of myeloma in patients going into a donor transplant in remission is 80%, if not in remission this figure falls to 20%. Bare in mind that I have undergone 9 months of chemo and never got into remission, in fact my SFLC have never been under 500 when a normal count is less than 20. So I am not hopeful and in fact I’m really nervous about finding out the result. I will also have to have another bone marrow biopsy done, which I am not looking forward to after the last one. If I am in remission though we will need to know how quickly they intend to proceed with the donor transplant as I am unlikely to be in remission for long. This will all be discussed with my consultant on Friday.