Mar 162019

There’s an update buried in the musings here.

Way down at the end of the list of side effects of one of the steroids used to control my nausea it says “Very rare: <1/10,000: Hiccoughs”. Hiccoughs are funny, right? You burp and make a funny face and hold your breath and nothing works and then they’re gone.

Except when you have them for 3 solid days.

You get a lot of information when you get cancer therapy. A long list of things to watch out for (blood clots, high fever, chest pain on breathing, stroke symptoms) and a card to show that you’re on active chemotherapy which apparently bumps you up the queue at A&E (which I thankfully haven’t had to use yet). There’s all the usual stuff – hair loss, nausea, vomiting, pain, confusion, diarrhoea and constipation (yes, both possible in one day. Neither pleasant nor recommended).

Uncertainty becomes your watchword. Long lists if potential side effects and lack of clarity about the treatment’s efficacy.

I’m currently in the control group for a drug trial. The chemo I was on (Doxirubicin) “wasn’t having the desired effect” AKA it wasn’t working or it wasn’t working well enough. The decision tree pointed to a new therapy which looks promising with a control of an older therapy (Ifosfamide) as a solid treatment against which to compare. Obviously “Head of Innovation” me wants the new thing but my respect for RCTs also has me right there with the computerised coin toss.

Reader, I got the established treatment. Which is fine. Uncertainty reigns. Established Treatment might be the thing that controls this tumour. If so great (less my ~5-6 days a month in hospital and whatnot. And it means I get a PICC line, which is a tube that goes almost straight to the heart up the arm vein. Exciting. Pictured here.

It’s really the uncertainty that gets you – constantly unsure when you can schedule people to come round, or tradesmen do work on your house, or schedule work meetings more than a few days in advance. It’s the constant feeling like a tennis ball bouncing between different hospitals and specialists to work out what’s best, next. It’s the 6 drugs you get before the chemo to protect you from the chemo and the 6 drugs you get afterwards to help you deal with the side effects. The tiredness. The lethargy. The “one more trip to the chemist/post office is going to kill me” (and C, as always, is a star here.

I’m feeling and bearing up well, despite my enormous moan above. Yes, I’ve got all that going on and I get tired and breathless walking more than 50 metres but I live in a place with a significant social safety net (despite attempts to cut it due to austerity) every bit of which helps. I’ve got groups of friends sending messages of support and bringing food and wishing they could bring food. It’s kind of overwhelming (and the NHS staff are as always stellar, supportive, professional)