My Journey with MDS

Yet another setback !!

05/07/2015 16:27

On Tuesday received the news that the Taiwan donor was not available for 12 months and the US donor likewise. So mid July transplant is off. The search for a donor has started again from scratch, clearly not the news Sally and I wanted to hear (to put it mildly) but we have to be positive and know the team here are working so hard to look at all of the options for really is a question of taking one day at a time, which is not necessarily one of my strengths!!! We should know a bit more at the end of next week. 

Still not completely clear of the infection, althouth the signs are it is improving after 3 weeks. I had my central line removed on Monday, and another inserted on Thursday so I have a fw stitches knocking around!

My "new" sister Bev paid a surprise visit this week coming down from Lancashire and it was good to see her and Keith on Wednesday and Thursday as they visited a number of times.

Also met Brian Baggott who had a stem cell transplant 3 years ago here at Southampton, with whom we have had contact via MDS and who has been a tremendous source of support. Thanks Brian!!

Sally has had a weeks leave, so she could get some much needed rest and some time for herself. I think the lack of a timescale to work towards makes it harder. I am sure its harder for carers juggling all of the commitments and Sally has been in to see me 62 out of 63 days!!l

As always many thanks for your e mails and good wishes 


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