My Journey with MDS

An even more eventful period ....... bringing you up to date

05/06/2015 11:22

I must start with an apology but its been a really difficult period both for me but really for Sally watching on and helpless to do anything but be here (which in my eyes is a lot!!) 

So hot on the heels of the fantastic news that the new stem cells were starting to do their thing, i started to feel a bit rough which I thought was ususual as new stem cell activity is linked to feeling better. Anyway this culminated in a Sunday afternoon temperature spike and  associated  riggors and thereafter every 6 hrs, introvenous paracetamol worked for a while and yes back to those temperature spikes. 

Team here have been brilliant and in between testing everything they could and re testing, reassurred us that this was normal in patients and people were very lucky to not leave without such an episode. Well i have hardly been able to lift my head off the pillows most of this week. Had a visit for a CT scan wheeled down had to wear a mask and go a route which was not direct to minimise contact with public. I am sure some people thought the mask was to protect them not the other way round !! lol

I may now have some Graft vs Host Disease (or GvHD for short) which is not negative, I am on daily steroids for that and as at this morning had my last temperature spike yesterday afternoon. (fingers crossed) !!

Sally has been bearing an enormous burden for which I am both grateful and proud. She has been trying to keep people in the loop when they contact, and including banning visitors this week!!! To friends, family and colleagues (and any other category) apologies for being tardy in responding to messages but hopefully this explains why, but a big thank you for your support not just for me but also Sally.

Well finally confirmation that the hair has left the bit of my body that was a temple and the rest of my body too. Hopefully normal service will be resumed now ..........take care all




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