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SCT

Well, yesterday we went to Bristol to see Proff Marks, what a lovely man he is! They have found a donor, or several and are running a few further tests to make sure they get a perfect match. I will be having a reduced intensity SCT next month, so not hanging about. Had the talk, warts & all, at the end of the day, if I dont have the transplant then my life will be cut short, so looking forward to lots more years of being here!
As my spleen in enlarged again he is going to start me on hydroxycarbamide along with the interferon.
We had a look around the transplant unit so it doesnt feel quite so strange when I get there.
There is so much to take in & I am feeling the full range of emotions, elated, scared, terrified, tearfull & optomistic all at the same time. The thoughts of leaving my home for such a long time & being away worry me (dont know why, no more chores for a while)! I am so lucky that i have the support of my family & many friends.
I will be doing a journal with caring Bridge for anyone who wants to follow & leave their comments.

Thanks Sandy for your advice re support for my daughter. I will have a word with the SCT nurse next week, good idea, thanks!
Love to you all.

I wish you the best of luck!

Keep us updated.

Keeps us posted, or let us have the blog web address. Glad there are options with the donours, and a couple of matches.

Nigel and family

Dear Ali,

I am so glad to hear you will have a reduced intensity SCT. As you know this is the kind I had in 2003- it seems so long ago now!
Please read the first few entries on my diary (you can see a photo of me actually having the donor stem cells infused) as it will at least give you some idea of what is -and what is not- involved. RIC transplants are so much easier to tolerate than the full (traditional) one and I am sure I can advise you on how to deal with the effects that will inevitably pop up.

During the induction period (first week) I was allowed home during the weekend. This really helped me and my family, even though I was pretty exhausted and didn't do much other than lie on the sofa and watch television. But it helped normalise life.
In fact I was allowed home on the second weekend too as my neutrophils were still high enough at that point. As soon as they dropped to 0 I was confined to my room..... but still could have visitors. To cut a medium long story short, the whole thing was over 4 weeks (start to finish) and I was allowed home. Take lots of reading material/music/talking books/laptop etc. You will have time on your hands and you will need a diversion from thinking too much about what is actually going on.

If at any time you need advice, then do not hesitate to contact me. I am going on holiday for 2 weeks this coming Friday and will back at work by September 10th.

Good luck Ali- I am sure you and your family will cope well and you will be back home in no time- which is when you start the 'work' to get to PCR negative. It took me a couple of years to reach negative- but since then I have never looked back.

I have put the link to your journal on the blog/journal page.

Best, Sandy