The 21st of July.
I am feeling slightly less stressed tonight. I was awake at four but that is just par for the course and there is nothing I can do. I am used to it now. We rang 621 first thing to explain my current worries about my liver/GvH etc which Sharon took very seriously and she said she’d find out who was where and what could be done. She rang us back very promptly and said that Igor and Susie would be on YPU, and to go and see them.
We packed a bag (if we didn’t take one, I’d need it) and toddled off to the QE, where we were greeted and I had all my bloods done, then in came Igor and Susie and Prem who’s obviously the consultant on at the moment, plus some sort of student doctor who I didn’t pay much attention to. I suspect Igor had warned Prem of my breakdown at him, and she listened to what I had to say. She thinks methyl-pred would be “like using a sledgehammer on a nut”, but to stay on 50mg of oral pred, keep using the cream and to have ECP again next week, so back to fortnightly. My bloods have all been sent so now I just have to be patient which I’m bad at. We also ended up having a conversation with a girl called Charlotte who has a brain tumour who had a really good real-hair wig and was going to this brain tumour support group type thing to meet other people with brain tumours as she hasn’t yet. And little nurse Laura came in who is now a clinical nurse specialist! So that’s fancy.
We decided to go investigate the Birmingham Boston Tea Party after my visit to the one in Exeter. We just had a flat white and caffé au lait, and Mommy also had half a chocolate and raspberry flapjack which lacked the advertised raspberries,
Came home for lunch, Mommy went to see Grandma, I worked out. Very hot and sweaty. At the end, I discovered that I am bleeding again! Going to ring Andy Toogood’s secretary tomorrow because I am not waiting until September for this so-called “urgent” menopause clinic appointment.
The 22nd of July.
One of the first things I did this morning was check my bloods from yesterday. We can breathe easy again – they’re all fine. My CRP is 0, and that’s what goes up if I am brewing an infection, so 0 is a very good number! It is just GvHD being ridiculous and a whole lot of wind. I’ve just got to be really, really careful not to overeat, even in the slightest, until all this burpiness calms down.
I had a productive morning, writing up a blog post, shaving my legs and tidying a load of boxes, books and shoes that were cluttering up the space in front of my bedroom window, all before lunch!
This afternoon, I wanted to be outside so I walked round the corner for a coffee cooler and some bits from Tesco and Boots. Upon my return, I sat in the warmth on the patio, read a section of Immortality by Milan Kundera (picked up in The Sanctuary in Lyme Regis, about different ideas of immortality via short stories? Not like anything I’ve read before), and then I took a lot of photos of the tree lilies because they looked glorious in the sunshine.
Then I came inside before I burned, read Heat, and watched the first episode of The 100 which is terrible so I’ve cancelled that series link.
Daddy’s knee has been weirdly broken today so he has worked from home and used Grandma’s old walking stick, bless him. It has been quite comical though. He and Oscar are a right pair, staggering around.