Not the week to practise juggling knives

I’ve been back in hospital this week. I had an appointment with my doctor, who sent me for a platelet transfusion. (Platelets make your blood clot.) I came home, and straight away had the shivers and shakes, then a temperature of 39. So back to hospital I went. Five hours in emergency later, I  was back home on the ward, where I stayed for two nights on IV antibiotics. Before my transfusion my platelet count was 8. After being admitted my platelet count was 7. Normal range is 150-400. When I left hospital my platelet count was 29. Still critically low. When I was admitted my wcc was low. When I was discharged it was critically high at 43. Normal range is 4-11. So, in short, my bloods are crazy. My wcc was high because I don’t take my Leukaemia medication when I’m in hospital. Sometimes I’m glad to take a break from it, but obviously, I can take a break for too long. When I started back on it after chemo this time, I had a severe pain in my neck and shoulders, like whiplash. I couldn’t turn my head. I couldn’t sit or stand without pain. I spent a few days just lying down, and crying when I tried to sit up to eat. I’m very relieved that hasn’t happened when restarting it again this week - I’m taking a lower dose.

And here’s why I’m relieved. Because I need to clean my house. The contrast between being in hospital and being home is too stark. I can’t come home from chemo, or from the transplant, to such a mess. So, that’s the plan for this week. Catch up on all the forms and payments that are the start of the year business, and clean up the house. I’d be embarrassed to die and leave the house like this. I have a week or so to fix it before going back in.

Ding! Ding! End of Round Two!

And no, I won't be extending the ‘fight against cancer’ metaphor.

I do feel much better than I did at the end of Round One, although some other things happened. But I haven’t come home with that haunted chemo look in my eyes ( I hope).

I was in hospital for eight days and feeling like I could just live there indefinitely, which I will be doing in a few months. I’ve learned you can spend all day doing nothing and the time will pass. I can measure out my life in coffee spoons, or my temperature, or latest blood tests. The chemo part went well. I found a doctor who is good at lumbar punctures, and I’ll be asking for him each time. I had a temperature, which meant staying longer, on IV antibiotics. I believe the source of the infection was developing cellulitis at the cannula site. Um, when I tell the doctor or nurse that something isn’t right, I mean it. The next cannula on my other arm became blocked on its second day. It’s a bit strange having fluids dripped into you you that just leak out. Fortunately this all happened after the chemo (no-one wants leaking chemo) and after a blood transfusion (my haemoglobin was too low) and fluids (my blood pressure was too low). Oh, and I met an intern who liked to stick needles into very small veins, and missed each time; my hands, wrists and arms aren’t pretty. I suggest she’d make a good GP but won’t have a career in Haematology. But  I’m fine now. Just have to avoid getting an infection. I’m likely to need a platelets transfusion next week, but we’ll see.

For the first few days I was in my own room. Lovely and peaceful. I could hear 2CH playing from the room next door. It was a comfort. The playlist has barely changed since I was a child. I might bring in my own radio and play 2CH when I have my transplant. And I read Salinger. ‘Raise High the Roof Beams, Carpenters’ which I like very much. (The title is a quote from Sappho.) The other story it is published with, ‘Seymour: an Introduction’ is less successful. Salinger starting to slide down his own crack. I’ve said it before and I’ll say it again, I like the Glass family stories. Seems such a complete world. But I don’t like Salinger as Buddy writing about writing the stories. When, oh when, will the posthumous works be published?? I’m waiting.

I also read Julian Barnes ‘The Sense of an Ending’ which I enjoyed. I wouldn’t consider it a ‘masterpiece’, and I suspect it won the Man Booker Prize because of its brevity. If the judges were seriously shocked by the ending, and impressed by the subtle plotting, they need a slap. I took it as an example of dramatic irony; the reader knows more than the narrator, and there’s the pleasure. It would be a good book for bookgroups to discuss. Linear and brief.

Then I moved to a shared ward where patients had their text message alerts set to horses and ducks. I met a patient who had a transplant last year, and she gave me some tips. Her white blood count had plummeted after a year of recovering well, and she needs a liver transplant. Her condition is more complicated than mine. She hates the procedures and tends to scream during biopsies. I go for the relax and breathe approach. I also met a young woman who became engaged two weeks ago, and last week was diagnosed with aggressive leukaemia. She wasn’t undergoing treatment. She was waiting to talk to the specialist about treatment. And then she went home. It turns out the outcome would be about the same with or without treatment. So now she’s talking about quality of life. She’s a lovely young woman. Religious. Works in a religious institution. Her family are lovely and must be very proud of her. What has happened to her is totally devastating and undeserved. It shows how life can change in a moment, especially when you body does things without your consent.

It is a very strange land the Magic Faraway Tree has delivered me to, and I’ll be back there before the month is out.