The 27th of February. Day one of photopheresis. I got up at half past eight to be ready for us to leave at quarter to eleven. They weren't quite ready for us when we arrived, so we waited and I was set up by twelve.
I ran fine, and we got chatting to the lady having her cells harvested next to me. She and her husband were very nice, and we actually know a few of the same people because she works at BCH! The only problem I had today was with returning again - the machine kept alarming because the white lumen just seems to be too narrow. They should've given me an apheresis line but I don't think there's anything that can be done about that now. I think we'll just have to do single needle treatment every time, which is just going to make it take longer. Joy.
We left at twenty past two, so this afternoon I read a bit and drank coffee and all sorts of mundane but nice things.
I am panicking about getting on the scales in the morning, what with Mommy's birthday yesterday and the birthday cake now residing in our kitchen. I hate my brain.
The 28th of February.
Why are my Fridays in hospital so long? Today was just a total write off from the journey to hospital to the end. It started with breakdowns in the tunnels and an accident further up our route that made our journey go from half and hour to an hour and twenty minutes. So upon arrival, I got settled in a chair and got going quite nicely, when suddenly the machine just stopped drawing blood and essentially died. So we had to stop and I had the 200mls we'd collected back, then I moved to another machine and we started the whole process again at about half past two.
Then I sat and trundled along for another two and a half hours, alarming often so I just plugged my earphones in and drowned out the noise with Nils Frahm. It is still incredible to me how music without words can make me feel so much. I also finished The Humans and it is so perfect. It is beautifully written, and I loved it. It's peculiar - I just read a book about cancer and dying that I struggled to relate to, yet a book about humans and learning to really live made me remember some of the beauty in life, and feel a little better about mine. I tweeted Matt Haig, the author, to thank him for writing it. There was a woman in the bay having a plasma exchange and they were having serious trouble finding a vein in her, which I can sympathise with, but when she started literally screaming and saying "I can't take it no more, I'd rather die", I felt like saying "Okay, you die, and I'll have your problems. Shut up; it is not that bad."
When we got home at quarter past six, Mommy didn't really feel like cooking so we had a Chinese, then cake. I've put on another pound but I don't know what else to do to try and fix it so I am giving up for a while and it's Betty's tomorrow and Pancake Day soon so fuck it.