Archives For TCT

The 10th of June.

Today has sucked.

I didn’t think I had a particularly bad night, but I must have, because I have been struggling to keep my eyes open all afternoon. However, my body didn’t seem to deem it bad enough to be able to have a nap, so a second coffee at 4pm was my only way to stay awake.

It started off badly because I found out that another one of my friends has died. A guy called Ash from my TCT group, one of the few people in there that I actually liked, relapsed a few months ago. He’d been really positive about his prognosis but evidently that wasn’t enough. And I can’t stop thinking about death.

That put a dark cloud over the whole day, and I wanted to kind of retreat from the world, so I crocheted. Just going back and forth doing the collar of the cardigan, and it takes twenty minutes to do a row. Given that there are 24 rows of the collar, it’s kept me busy all day, with the tennis burbling in the background. I’ve got eight rows left, so that’s nearly three hours of work remaining.

Dolly is still sad, and now she’s getting angsty with me when I stroke her. I’ve never had to deal with this before.

The 11th of June.

I was fully aware of having a terrible night because it was so warm, but today I have not been exhausted, which of course makes perfect sense.

Woke up to find a note under my door saying Mommy was over the road, but to text her when I got up so she’d know when to come back for us to go into town. She had left my breakfast prepared because she is an angel, so I didn’t have to do too much standing and cause myself pain. She returned as I was finishing my coffee, and we went shopping for Daddy’s birthday presents and other errands. I got him some fudge and a nanoblocks astronaut, then I needed some more body butter and hand cream. I had already got him a card, at least.

Home, and after lunch, it was time to power through the last few rows of the collar. I have just been doing that solidly all afternoon while catching up on Humans, and I am pleased to say I have finished! I have weaved in all the ends, so now I have to attach the sleeves. I really hope they’re long enough.

The 1st of April.

It happened! I took two Zopiclone but didn’t sleep well at all because I was enraged at the nursing staff for not sorting my admission very quickly and not turning the lights off until gone half eleven and the doctor for not turning up to clerk me in. When she did come, she woke me up my listened to my chest, poked my stomach a lot, then buggered off. So by morning, I was not best pleased. I found that under the bright lights, I could see just how much the GvHD has fucked up the skin on my fingers.

Mommy arrived at about half eleven, and we watched This Morning on the iPad as I’d been able to get on the TCT wifi again. I was first on the list, so got taken down to interventional radiology for 1 pm, where I had a chat with Andrew and signed the consent form. In the room, they sloshed me with the cold, orange stuff and the nurse have me some midazolam, and from then on I was kind of sleepy so the rest wasn’t too bad! I remember Andrew saying things, and a lot of shoving (it’s never a particularly delicate process), then shuffling back onto my bed and being taken to recovery.

Back on the ward, I ate some of Mommy’s crisps and drank some Tropicana, then after two hours of lying flat, I was allowed to go home! I have to be careful moving around and dressing, and it’s going to be tender for a good few days, but I’ll get used to it. I’ll be having to wear skirts for all my ECP sessions now.

The 2nd of April.    

For some reason I had a really terrible night, waking up three times, and the third time, I just gave up trying to go back to sleep. I watched an episode of Dexter and felt the strange protrusion coming from my thigh.

I had the phone interview with That’s Life at ten, which I’d completely forgotten about until Mommy reminded me, so it was a good thing I got up early and we ready. We talked for an hour and a half and she was very nice. I have an idea of how it’s going to turn out, and I think it will be good. I’ll have it read through to me before it’s published.

When I’d hung up, we went into Sutton to get boring bits like nail varnish remover and Easter cards. We also got some raw cacao powder to use in the vegan brownies we’re making for Romesh (Ranganathan) who will be coming round on Saturday. After returning home and having lunch, I swapped all my winter nail varnishes for more summery ones, and I’ve finished the body of Alice’s aardvark.

Now Christine is home! I gave her the aubergine vegetapal I made, so she can take him back and he can live on her desk.

My leg hurts.

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).