The 12th of August.
So I’m at home tonight, but for the next few days, I’ll be doing this from hospital, where I spent most of today.
I had the best night’s sleep I’ve had in ages – still awake at half four, but I felt well rested. Was at the QE for half eleven, but after explaining/showing Jo my arms, she wanted to Igor to see me, so we had to go over to clinic. Thankfully, Ram was also there and he remembers this from last year so he was very happy to just get Igor to see me, then organise the appropriate tests. Once we’d all had a chat, Igor went to see the imaging doctors, came back, and the decision was that I’d have my ECP today, go and be “officially” admitted onto YPU, go back for more ECP tomorrow morning, then be an inpatient in which case I can get a venogram done by Friday evening, whereas as an outpatient, I’d have to wait four weeks.
So that’s what happened! Had photopheresis, went over to YPU, then it was just waiting around for admin stuff to be done. There is another girl in the bay called Lucy with ALL, so we and our mums were chatting, imparting wisdom. We finally left about half six!
Popped into M&S on the way home for dinner and food for me to eat while I’m in, then after dinner we’ll pack my bag and it’ll be bedtime.
Robin Williams was pronounced dead this morning. His daughter posted the most appropriate quote:
You – you alone will have the stars as no one else has them. In one of the stars I shall be living. In one if them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night… You – only you – will have stars that can laugh.
The 13th of August.
Tonight I write from a cubicle in the TCT unit at the QE. My day has been largely uneventful, so this will not be long.
We came up here before ECP so they could do some obs, then I went to 621 and had to tell the falling-on-my-face story again. Was done and back here by half ten. We unpacked, then Mommy had to take Grandma to lunch club, so she left.
Doctors came to see me to make sure I was still fine and assure me they would chase up the scan. Then nurse Liz came and said it wouldn’t be today, and I could go home until eight, but Mommy wasn’t going to be back until 3, so it was pointless.
This afternoon I basically read The Goldfinch, occasionally distracted by Orlando, Lucy’s mum, or new people coming into the bay. I was also told I was being moved into a cubicle because I have had klebsiella and it could its ugly head at any moment, they have to isolate me for the safety of everyone else. Fine by me – I love being in a cubicle. Means I can do as I please.
Mommy and Daddy have both been and gone, Mommy and I texted during Bake Off, and tonight I have the dream team of Michael and Del on tonight so I may well get some sleep (or as much as is possible, anyway).