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)

  5 Responses to “What they don’t tell you about Chemotherapy (& other assorted cancer life)”

  1. Glen, Patrick had hiccups too. It was the most upsetting symptom for him. We did get a RX that took care of them but not for several days. I’m so sorry you’re going through all this. Sounds like you’re getting the best of care and have great support. Thinking of you and wishing you the best.

  2. Rob had a several days hiccup episode in 2007. It was a reaction to a sulpha antibiotic of all things! He also went fully psychotic and was having full conversations with an alligator named Yoyo we had “met” the week before on a trip to Louisiana (we were still living in Tennessee then). It was a fucking wild ride.

    We love you, Glen!!!

  3. Thinking and praying for you. Stay strong! Love and hugs ?

  4. Dear Glen, your wit shines through your writing and your humor I’m sure is one tremendous asset right now. Thank you for sharing and please let me know if I can be of any help! If you practice meditation I’d recommend the 432hz bowls to listen to on YouTube, I know you’d enjoy. Love, Laura, fellow Sept2er

  5. Love you boy. Is it weird that it makes me happy to see that tattoo and know we’re still connected in an odd way? I also use that orange pitcher, the one you gave me as a housewarming present nearly 16 years ago, every single day, so I’m always thinking of you. I’m constantly reminding myself that you’re a charge ahead and get things done guy. And you’ve always got it done. That single mindedness and strength of focus is hopefully your ally in all of this to help carry you through. But sending some positive juju through the aether can’t hurt either, right? So consider it sent.

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