The 6th & 7th; You think you’ve left these things behind.
The 6th of September.
It's been a very medicine-heavy day! I got woken up by Mommy at twenty past eight saying we had to be at the GP in two hours. We had to get an emergency appointment to get more gabapentin, now that we've decided that 2700mg a day does do something, even if it doesn't get rid of all my pain. We arrived there on time, but they were running incredibly behind. I was able to cope with that, until a child whose sibling was a patient started watching videos on his mother's phone, and once the baby shark video began I began to get irate. Thankfully, we were called in just after that, and even if it was an hour after my appointment, I was just happy to be out of the waiting room. The doctor was very helpful, dealing with the gabapentin immediately. We then had to sort out my eye drop prescriptions, because they were generally a mess. We explained exactly what I require, and she was incredibly obliging. She was a junior doctor from Northumberland, obviously doing her GP training, but I like her, she can stay.
We left at twenty to twelve, popped into to M&S for a pretzel because at this point why not, and got home at noon. Mommy went to Boots straight away to see what they could give us, and for once they can get everything I need and aren't going to be arses about anything!
This afternoon, I have been going through my medical notes from BCH in preparation for my talk/interview at the conference next week. I have specific points that the questions refer to, but my notes are just thousands of pages that have been scanned in, not really in any particular order. I have two discs, each with one PDF file on it. In that file will be chunks that belong together, in chronological order, but not all of that chunk will be there. It will be a few months' worth, then it will be a different chunk. For example, it begins with lots of letters about my acute eye GvHD, jumping all over the years. Then we have almost all of the pathology reports, which range from the very dull blood results, to the analysis of my removed liver, and the diagnosis of relapsed AML. There are notes from nurses, emails about my potential liver transplant and the lack of existing protocol, so trying pinpoint dates is not easy! Therefore, I've essentially spent the afternoon just skipping what is obviously irrelevant, and then reading what remains. It's been interesting, and emotional. When I read the analysis stating that my leukaemia had returned, my heart started pounding in my chest. You think you've left these things behind but reading it in black and white is something else. I've taken a lot of screengrabs though and scribbled stuff down which will be useful.
I think I stopped at about half past five, and now my eyes are tired. I should not have looked at my computer for that long.
The 7th of September.
On boy, my back is fucked. So painful. The desk chair in Christine's bedroom is not good for me at all. No support for the old lower back.
I stayed in my pyjamas all morning until I'd decided what I was going to do. I wanted to get back to my notes, but I had to think about what was good for my eyes and my back, and came to the decision that I should go to the gym. I didn't think I'd be able to do everything as usual, but I could do things that wouldn't cause me too much pain.
After lunch I went upstairs to get dressed, and had a half-hour lie down, really trying to press my lower back into the bed. I felt a bit better afterwards, although that seemed short lived. At the gym, the 3 o'clock police were not being diligent so it was busier than I would have liked, but hey ho. I didn't do the hand-cycling, because there is no back support there, and still ended up being there for about the same amount of time as usual, but I struggled on the floor and with the abducting machine. The thighs did not want to play ball!
When I got back, I got frustrated at how I can't do any fine crochet or knitting at the moment, and I won't be able to make anybody anything for Christmas (yes I'm already thinking about Christmas), nor can I make the mice I got the stuff for last year! The only work I can do is using chunky wool, which I didn't think I really had an abundance of, because I tend to buy it specifically for projects. However, Mommy remembered I have several things that I've made and decided to unravel, which are all chunky, so I'm unravelling a jumper I made a long time ago, before I really knew what I was doing, so it's an absolute fucking nightmare! I'll be happy when I have lots of balls of chunky wool to make cat blankets with, but at the moment it feels like the worst decision I've ever made.