The 8th & 9th; I forgot how hard it was.
The 8th of September.
Such a terrible back. Absolutely shocking. I knew when I was lying in bed this morning on my side and it hurt that I was not going to have a good day.
Upon getting up, I found my assumptions to be correct, and I could not stand up straight. I haven't been able to all day. I spent the morning trying not to move, doing my blog post and watching Nish try to dampen his laugh during Sunday Brunch. I also carried on with the hell of unravelling my jumper, but I've worked out a few key tips: 1) Can't unravel from the bottom unless that's where you finished. 2) Get the sleeves out of the way first. 3) Undo the side seams before the panels. Follow these handy hints and hopefully it will not be a disaster! Unless you lose the end when you cut it off the ball of wool you're spooling and then it all gets tangled. That was not fun.
After lunch, I went back to the computer to do more talk research. We changed the chair for a dining room one with a cushion which was more comfortable for my back, but I'd only been there about half an hour when my eye started getting unhappy. I went and had half an hour of Dark Time, then went back to the screen for an hour. I had a cry this time, although I'm not sure if it was more down to being upset about what I was reading, or being in pain from my eye. I'd got to the point where my liver is failing and the doctors wanted to biopsy it, but it wasn't safe, and I was getting distressed and frustrated because I hadn't got any better since I'd been admitted, and I didn't feel like enough was being done. What I didn't know/understand was that my liver was failing, my body was trying to shut down, and the doctors were doing everything in their power but they couldn't treat what was going on. I was just this poor little sick girl in a cubicle whose body was falling apart and brain was being poisoned, and I just want to hold her. I forgot how hard it was. I've told myself I wasn't really with it for a lot of the time, that I was just high on morphine, but looking back at the notes, I was present. I was in pain, struggling through every day, getting weaker and more confused with each one that passed. And suddenly, the notes from Ward 15 stop, and start again two days later, on Ward 8, after my liver transplant. That's when I thought it was time to stop. It was nearly four o'clock, so I did my cold eye drop, took my gabapentin and went and had another hour of Dark Time. I've realised I do need to go back to my notes at some point to find the letter from Anthony Nolan about the second German, but that can wait for now. My eyes need time off.
The 9th of September.
The back is much better today, I am very glad to report. This morning seemed to disappear...I don't know how I filled the time, apart from painting my nails at some point after eleven. I finally finished unravelling the jumper last night, so I began crocheting a circular blanket with a 9mm hook, but it was too small, so that got unravelled too!
After lunch, I went upstairs for some Dark Time, during which I enjoyed listening to the end of Ed and Matthew's Radio X podcast and the first episode of Book 5 of Belinda Blinked. Too much horrific language to mention here, but let's just say that the words "thick, lumpy semen' have probably put me off penises for life.
I returned to the computer to try to find some stuff about my accidental transplant or from Anthony Nolan about the second German. I was nearly at the end of the first disc, and I found some interesting pages, screengrabbing them and sending them to my phone. I finished just after four o'clock, swapped discs and came downstairs only to find that none of the pages I'd sent hadn't actually saved. This was most frustrating, so I decided to go back up and see if I could get through the second disc (only about 1200 pages), because I knew I didn't want any admin numbers or handwritten notes, so it was quite easy to skip through. I found several pages that were essentially the same as a couple of the ones from the first disc, which was handy, and some more from the West Midlands Regional Genetics Laboratory which show how my marrow changed from the German donor to the liver donor. In just over three weeks, it went from 90% German male to 100% liver female. To be honest it might well not be of any use to the talk, but now I can put all these screengrabs into my Medical folder on Dropbox and they’ll be a lot closer to hand than somewhere buried in thousands of pages of notes!
