face 3.png

Documenting not dying since October 2013.

The 19th & 20th; Everything feels wrong and I'm scared.

The 19th of July.

Now I'm up to 50. It seems to improve, then get worse. We're almost definitely going to to hospital on Monday because I'm beginning to think I might need some IV methylprednisolone to try to get it under control.

The storm had me awake in the night but not too much, so I didn't get up until about eight today which is nice. Mommy washed my hair, and at lunchtime, Daddy and I went to see Boyhood. It was very much a beans on toast kind of day as it has been pissing it down, but my lunch was a bag of Pom Bears and a packet of Refreshers. Not ideal, but since we chose to go to a 12.20 showing of the film that didn't finish until four, lunchtime was not normal.

The film was everything I expected/hoped it would be, and I'd recommend going to see it before it goes out of cinemas! It is all the good things you have heard about it. There was a power surge at the cinema just as we were waiting for the lift, but Daddy knew what was going on and we were not actually inside the lift yet, so I was not worried. Then we drove home in the storm and listened to the Wish You Were Here album on cassette tape because we are old-school and awesome.Β 

I had some more tweets today which are honestly one of the only things keeping me going. I've had an email from Fran but because she's not based at the QE, she can't really help, but she's going to pass it on to the transplant team.

The 20th of July.

Last night I started adding things up in my head and hoping I'm massively wrong, then got very stressed and upset so I took three lorazepam. Basically, I have been burping after every meal, even when there is no frying or fat, so that's unusual and has been a precursor to biliary stones. Severe GvHD flares also usually coincide with infection so bad GvHD, wind, feeling shitty now, all adds up to me becoming possibly very poorly in the next week.

We were driving down to Wales this morning so I was able to just plug my earphones in and still feeling dozy from the lorazepam, basically forget about my life for a few hours. We picked up Taid and took him to The Groes Inn, where I had pigeon which I thought might have been jointed but no, I had to completely dismantle it. I was terrible company, just not speaking, eating, then drinking my coffee. By the end of the meal, I was feeling totally rotten, didn't want to get out of the car and just cried at Mommy whileΒ Daddy helped Taid at Tesco, then home.

On our trip home, we stopped at Starbucks Oswestry but I didn't trust them to not make me something that would make me feel ill, so I just bought a bottle of water and some of the plain shortbread.

Tonight I'm going to have an early night but I think we might be at the QE all day tomorrow. I want them to do all of the tests because everything feels wrong and I'm scared.

The 21st & 22nd; We can breathe easy again - they're all fine.

The 21st & 22nd; We can breathe easy again - they're all fine.

The 17th & 18th; Four years of hard work and photopheresis completely undone.

The 17th & 18th; Four years of hard work and photopheresis completely undone.