Reboot Cath With HSCT - for real...
Updated: Feb 4
Hello and welcome to my blog. Bear with me, I've never written a blog, or at least not properly. I am doing so for anyone who wants to know what I am going to be up to in Mexico during my HSCT treatment.
I am officially on count down to leave on 23rd April for 6 weeks. This has been more lifechanging a countdown than I would have thought as I have recently stopped taking Tecfidera which is my disease modifying drug. Its the thing that is wasting the NHS a lot of money - somewhere in the region of £30,000 per year - and the pill that does the most harm as well as the most good. You see it stops me having relapses but it causes nausea, stomach inflammation and pain, burning sensation and flushing, super itchy skin, rashes and potential low levels of lymphocytes (a type of white blood cell) which can cause the fatal PML (ie its a big deal and is a strong drug) and the list goes on
I have to have a 3 month DMD flush so I have none at all in my system when I start my treatment. This in itself is a leap of faith, as without it, will I relapse? symptoms get worse? new symptoms appear? who knows?
But for now I will cross my fingers in the hope I am doing the right thing, and ride the wave of whatever that brings me. To take my mind of potential disasters, I have thrown myself into buying all the things I will need when I am away, like soft cloth caps and satin pillowcases for my soon to be prickly bald scalp, and a heat pad for my sore bones before stem cell harvest time. I'm hoping I wont need them but its common to need these things and I want to be prepared for when I cant get to the shops.