It’s been great being out of hospital for a decent amount of time – properly out, without having to return once a week for blood tests etc, and there has been much loveliness, including the chance to spend lots of time with my darling father (who hasn’t forgiven me for moaning about Southbourne yet). But I was very much looking forward to going back today to discover just how the final phase is going to pan out, as I wanted to start thinking about when I might be able to see London friends in a non-hospital environment, when I could start working again, and whether I’d be needing to go straight to Oxford from St George’s for Graduation or what, and many other things.
Unfortunately, I was a bit ahead of myself when I assumed this phase would involve less hospital in-patient time (my hope was that it might be a few days in, followed by a week out, not too neutropaenic, for example), and more chance to get back to a normal-ish life. According to the protocol, I should have cranial radiotherapy to protect my brain from leukaemia before embarking on the chemotherapy, but somewhere along the line it didn’t get organised… My consultant was very apologetic that the people who should have done it hadn’t, but explained why it shouldn’t be an issue to delay it until after the chemotherapy (namely 1. I’m young 2. I had a low blood count when I came in 3. They’ve never actually found any leukaemic cells in my spinal fluid 4. I had the methotrexate, which should have knocked out any cells that could have been there). He thinks it more important to get on with the chemotherapy.
The continuing chemotherapy, it transpires, involves four blocks of approximately four weeks each… My reading of the protocol had produced the assumption that the gaps where there was no chemo would see me out and about, and I believed some of it may have been done as an outpatient. Unfortunately, it seems I will be in hospital for each block, as my blood counts WILL be lowered to the extent that they will want to keep me in.
As my father suggested:
- Bang go my hopes of squeezing in some semblance of a social life between chemo;
- bang goes my chance of graduating with my friends in a couple of weeks’ time;
- bang goes my expectation that I could go to Lourdes in July;
- bang goes my plan to pop back to Literary Review to work when possible;
- bang goes my joy at having spent the winter months in hospital and being out to enjoy the summer.
I am pretty disappointed, though of course I know it could be much worse. This chemo is all intravenous or tablet form, I think, and shouldn’t be as bad as what I’ve had so far. After the chemo, I’ll have the cranial irradiation, and then the maintenance chemo is really not too regular (2 weeks every 3 months, I think). One of the nurses I saw today was telling me about someone who’s just finishing their treatment (same as mine): apparently he occasionally misses appointments because he’s busy playing football, which is very encouraging.
I’m probably heading in on Wednesday, or if not then Thursday or Friday, and will have a few different chemotherapy drugs in the first few days, by the look of it. I’ll be in for 3 or 4 weeks, depending on my blood counts at the end of the treatment. I’m actually not worried at all about the chemo itself – it’s just hospital food and being stuck in my room for a good while that I’m not looking forward to, while it’s frustrating not to be able to get back to life, and a great shame that I’ll miss Graduation and Lourdes.
However, it’s all for good reason: to keep the damned leukaemia away! So it’s all worth it. Right?