Transplant delay

2 minute read time.
Not much been going on the last few weeks, I havent been on any chemo since I'm well in to remission so I've been feeling good. Still going in for ambisone and various tests and checks in preperation for my transplant. I was given a transplant date of a couple of weeks time but it turns out my donor cannot make a Tuesday or a Thursday and according to the coordinator it has to be one of those days. So they've moved on to my backup donor and I'm currently waiting for the results of the high resolution matching tests to see if this donor is as good a match as the first one. By the sounds if it there's going to be a three week delay, I was given a date of the 6th for admission to the BMT ward but now its looking more like the 27th. I'm going to see Prof. Marks on Wednesday and by the sound of it I won't be having any more chemo in the mean time, which is great, though a little bit worrying, I wouldn't like to think it's giving the disease a chance to come back, but obviously the Doctors know best. I've had a few appointments down in Radiotherapy one for a test dose and another to have a mold made of my head. The technician even went to the effort of making the full head mold even though I don't need it... just because I wanted to keep it after they were done with it! One of the Doctor's down in radiotherapy talked to me about the possible and likely side-effects of the treatment. It was another conversation I was dreading really but you've got to hear it, the short-term effects sounded prettybearable like cataracts, skin irritation and mouth sores (which hopefully should be made easier with the Palerfirmin ). More worrying are the long term effects, it was made pretty clear that I'm likely to develop another cancer in the future and he mentioned that the treatment essentially ages your brain so I may develop dementia-like symptoms in a decade or so. At the end of the day though, if I developed something like skin cancer it is very treatable and who knows what advancements there will be in the future, plus I'd be very aware of looking out for early symptoms. As for the dementia... well... the amount of marijuana a lot of my generation smoke I think I'll be in the majority of 30-year-olds who suffer from that kind of crap. I was just reading the Leukaemia CARE magazine and there was a story about a 20-year-old girl who was diagnosed with CML in the middle of her degree. She decided to carry on with her work, it made me realise I've really got to find some sort of normality in the 6-months following the transplant, because it is a long time. Hopefully I can spend the time between now and the transplant feeling good and trying keep a relatively 'normal' regime.
Anonymous
  • FormerMember
    FormerMember

    Hi Will, I must have missed this latest update! How's things? Is the transplant still on for end of this month? YOu are right about finding some sort of normality after the transplant, although my brother always said the time flew, he really was back to normal PDQ - and actually back at work as soon as he could be. It really did not stop him doing anything for a significant period of time. He did get a cataract but it was easily treated, and actually his vision became perfect in the affected eye after treatment. He did have to be careful with the sun but other than that no problems. Of course he was also alot older than you - and yes you will be closely monitored so any side effects should be icked up early.

    I hope you have managed to enjoy the Bank Holiday weekend and maing good use of your time before the transplant.

    Take care, hear from you soon!

    Debbie x