Hi, I’ve not been on for a while, been trying to sort out the many emotions going on in my head and heart.
After my stem cell last October I was ready to start living again, I knew I still had a mountain to climb but felt more ready to face it. Last year I’d signed up to five trials (what’s a bit of extra blood to save a future sufferers life eh?), one of them was a DLI trial where I would be given a top up at set intervals instead of when I actually needed it. My blood levels seemed to be recovering well, except my red cells, which the health professionals were expecting because a) that’s the sub type of my leukaemia and b) due to the mismatch of me and my sisters blood groups... anyways long story short I have become blood transfusion dependant. It was decided that as I hadn’t suffered any GVHD the docs were going to give me a top up to see if it would kick start my red cells into working properly, not a biggie I thought as it’s just like having the stem cell again minus the crappy chemo lol BUT on going to my follow up appt my consultant gently informed me that my sister has refused to donate again... at first I laughed, a weird but normal reaction from me when I’m given info that my brain can’t compute, obviously they’re not allowed to tell me why because of patient confidentiality but I needed to find out why. Don’t get me wrong my sister and I have a complicated relationship, I was surprised she offered to donate the first time but why start something if your not gonna see it through to the end... anyways I texted her for an answer and she said it caused bone and muscle pain that none of the docs can explain or get rid of?? I didn’t text back ... I was so grateful she’d saved my life but so angry that she could so easily turn her back, I don’t know how to feel towards her and have chosen at the moment to cut her from my life mentally and physically before I drive myself insane. The anger I felt, once my brain had processed all the info was about to consume my life and put me back at square one.. my councillor taught me how to use that anger to my advantage and to her I am so grateful.
Im now going for weekly blood tests, regular blood transfusions and there is talk of me maybe having a new pill to help with the iron overload problem... in six months time if my red cells don’t start working on their own I will have to have EPO injections to try and help instead... I’ve just had my day 180 biopsy and am now waiting on the results. It’s stupid but I need my sister to be winning inside but there is another part that secretly wishes she wasn’t ... sibling rivalry at its worst and ironically totally out of either of ours control.
