The 10th of October.
Agh. We did well this morning, but this afternoon we were here for four hours. I shall elaborate.
My 10 o’clock dose went up fine (well, without any major problems), then the doctors came. Apparently, the microbiologist is unhappy with my drug times because the night time gap is too big. So now my drug times will be 6.30am, 1.30pm and 8.30pm. This was after a discussion with Sophie the WonderNurse about what times are best for the nurses. We decided that early mornings are better than late nights. I pray to God that tomorrow they say I can change to this tablet.
This afternoon, we arrived for my 3 o’clock dose, but I needed a colomycin level doing with is bloods from a vein before and an hour after it’s finished. After four people stabbing me five times for about 3mls of blood, my drugs got started at ten past four, so finished at ten past five, but then no one came to bleed me again until seven because someone else was basically dying.
We got home about quarter to eight, ate some chicken, leeks and rice, then we came back to hospital for nine but nothing is ready and at twenty five to ten NOTHING HAS HAPPENED.
The 11th of October.
When they told me I needed another liver transplant, I had a feeling that I was not going to be so lucky this time. It turns out that I was right.
Today was the transplant meeting and Dr. Thompson was there. I’m not going on the list. They do not think that they would be able to get me off the ventilator post-transplant and that’s if I survived the surgery.
So I will die. I don’t know how, I don’t know when. Which I suppose was always the case, but now it’s just going to happen a lot sooner than I planned.
I have cried a bit. The hardest thing right now is not being able to talk about it because Christine is still in New York and I cannot tell her while she’s still there, yet telling her the moment she comes back might be even worse. I’ve been thinking a lot about how to write about it in some beautiful way but I can’t because there is no beauty in death. It sucks and I don’t want to do it.
I just don’t know what else to say.
The 12th of October.
Describing what happens every day seems somewhat pointless now, but I don’t know anything else.
I had about five hours of sleep before having to get up and come here, but it wasn’t too bad. I had a mini sleep during the qualifying.
We stopped at M&S on the way home because I wanted a chocolate-filled croissant for breakfast, so I had that with a coffee while I watched Agents of S.H.I.E.L.D. and it was lovely.
My lunchtime session was fine because Marc was on and he knows what he’s doing. He had to deal with another patient who wanted to leave but that was not going to happen, but then he did my drugs. He runs the colomycin over half an hour so we were still out of here pretty speedily. We saw Ella on the way out and she said they are exploring ways to help with my drainage but I don’t know what that would entail.
This afternoon I had another nap, ate some chocolate and banana loaf and got tweeted by Jameela Jamil which was nice.
Tonight I have Brian who is really organised so even though my drugs are going slowly, I’ll still be out of here a lot earlier than last night.
Not being able to tell anyone or talk about it is killing me.
The 13th of October.
Today has gone pretty well! Brian was ready for us and did the drugs slowly but we still got away in good time.
I had a bagel for breakfast and watched Sunday Brunch with coffee. That is literally all I did. Wait, I tell a lie. I also made a cheese toastie. Important.
My lunchtime doses both went over half an hour which is a new combination but the nurse was prompt so I was quite happy.
Becky came over pretty much as soon as we got home, and she updated us on church drama. I still haven’t told her. I don’t know how I will.
Tonight I have Mel and she’s drawing them up now.
I just don’t know what to say. Tomorrow I need to ask the consultant how long they think they can keep me alive for. I started a bucket list. I’ve started the blog post. I’m afraid to start things I won’t get to finish.
The 14th of October.
Oh, fuck am I tired. All this getting up at twenty past five business is not fun but I can deal with it better than being in here.
Mel did this morning’s colomycin over half an hour so it was a very speedy visit. We wanted to see the doctors but knew they wouldn’t arrive until late morning, so we went to Yorks for breakfast (I had a poppy seed bagel which was exciting as I can never find them anywhere), then to M&S to pay Grandma’s bill. We still had time to kill, so I got a jumper from French Connection and a Rob Ryan calendar for next year before coming back to hospital at about eleven.
Marc did my drugs early, so then we were just waiting for the doctors, who turned up at about twenty to one. The consultant wasn’t there, and he’d apparently arrive between one and two, so we waited. He came at three. But it was fine. There has been much email traffic about me – some people want to stick a bile drain in, and some want to carry on with drugs and see what happens. I’m with them, so that’s what we’ll do. He couldn’t give me a time frame, but he said it’ll be an infection that gets me. At least I know.
Carlos is on tonight; should be in bed by half ten.
The 15th of October.
Today has sucked beyond measure. It started with having to tell Christine the shitty news. She cried a lot and it was so awful. I hate that she was on her own and I couldn’t hug her. She’s coming home this weekend (as are Dan and Angela).
The middle of the day was sufficiently average. I ate food, I had drugs. Then I had to tell Becky. The were more tears and my mama had to make tea and give hugs because Oscar was no help.
And tonight I have told everyone else. No one has words. I hate that I have to give this news. I hate that I can’t control this. I hate that I have to leave.