So what's chemo REALLY like?

what shocked me about Cycle 1 (with tips & a hair update)

This week I completed Cycle 1 of my chemo: that’s three treatments, seven days apart. I have 13 more treatments ahead, ending in May. It’s both very early days and a milestone.

Cycle 1 done - time to celebrate (photo by Jackie Hope on Unsplash)

So what has surprised me the most so far?

1. I’m still here.

2. I still feel pretty well.

3. I haven’t turned into either an ethereal flower or a saintly patient.

Big conditional statement coming up: even though I don’t really believe in fate, I also don’t want to tempt it. So what follows is based on the past few weeks. It might all change tomorrow.

But I also know from your comments that demystifying this process can help. Chemo especially is surrounded by myth and fear and awful scenes from weepy movies (I haven’t seen We Live in Time yet - am I missing out, film fans?).

My preconceptions meant I genuinely feared I wouldn’t be able to stand one, never mind 16 sessions.

I want to tell you that - 21 days in, anyhow - it’s not like the movies. And that’s a very good thing.

Want the TLDR version?

Chemo so far is more boring and less disruptive than I expected. It hasn’t been remotely painful, though side-effects can be pretty irritating…

Here’s the long version:

1. Prep helps me (and maybe you) feel in control

I am a control freak, unfortunately. Illness, and cancer especially, challenges that. Preparing myself allowed me to feel like an active participator rather than a passive patient. Those included:

• Consulting reputable websites and books. I did join some forums, too, but found myself withdrawing almost immediately because those sites are too much, too soon. And, often, people are posting for help with problems I definitely didn’t want to know about yet.

• Buying stuff: my cute pressure socks and gloves (which are now part of my chemo day ritual and may help reduce the risk of neuropathy), Polybalm to protect my nails, a gorgeous recipe book aimed at people going through treatment, a very soft toothbrush, even a tube of gel for mouth ulcers.

• Journaling and doing this Substack: writing about fears doesn’t neutralise them completely, but getting them out of your brain, either publicly or privately, makes them less intense.

• Having nice things done to me: following the advice to paint my nails dark colour to reduce damage (I’m now not sure there’s robust evidence for this), I booked for a manicure and pedicure before treatment began - and I had my hair cut, of course. After a fortnight of being scanned and tested, it was really restorative to lie on a couch, or sit in a chair, to have discomfort-free and anxiety-free care. I’d recommend this (NB: manicures/pedicures during chemo shouldn’t involve the cuticles being cut).

  

• Going into hermit mode: I have gone full Goblin now for three weeks, hardly seeing people. I needed that time to process this new phase. But watch out, world, I’m coming atcha very soon.

2. Most side-effects are more irritating than serious

Patients need to give informed consent to chemo - unfortunately that involves having countless potential side-effects read out to you, before getting a form with the whole lot highlighted, to sign.

And then they give you a book to record your symptoms, in depth.

But… you’d have to be incredibly unlucky to have them all hit you, or all at once. And what seems a big deal to you will rarely cause a flicker of concern from your medical team.

So, over the last 21 days, I’ve had: digestive issues (moderate but I often get them anyway), mild headaches, slight nausea but no vomiting (and this has reduced a lot now), tiredness (but who doesn’t feel weary in January?) and itchy scalp (again, this lasted a few days before settling).

The one that scared me the most was the dramatic rise and fall in my resting heart rate - something that I’d know nothing about if I didn’t wear my Fitbit. And it’s a known side-effect of the chemo drug carboplatin. I also had slight palpitations caused, by my picc line being slightly too close to my heart. The nurses tugged it out by 1cm - sorted!

The key question here is, would I have visited the GP or been worried by any of these if I wasn’t having chemo?

Truthfully, no. As it is, you’re actively encouraged to write down side effects, and report them.

That made me hyper-vigilant at first, but - crucially - taught me to trust my instincts.

I sensed that something wasn’t right with the picc line, but nothing as serious as what I’d been told to look out for. If I’d ignored what I’d seen, I would have stayed uncomfortable.

The only side-effect that seems to have bothered the chemo team is that my platelets - which help blood to clot - are very low, again thanks to carboplatin. So next time, I’ll have a lower dose. It’s made my nose bleed a tiny bit but again, I’ve barely noticed and wouldn’t have had a clue.

Now, I understand that side effects are cumulative so, as time passes, they’ll probably bother me more. But it’s significant to me that I have exercised every day but one since I started chemo, including 8 runs.

3. Your medical team are right behind you

When I was at my lowest ebb, before I got the results of my PET and CT scans, I had a long, tearful conversation with a Macmillan nurse. It was transformative.

One of the things she said (I transcribed it) has stayed with me:

“If you are exhausted, we will be beside you, walking with you. By the fourth or the fifth cycle, you may be more tired and feel you don't have energy to keep going.

“We will be right behind you. You are very fit and well, so you may not need me beside you, but if you do, we will be right there If we know that you are in that situation, we won't wait for you to signal us.

“And we will hold your hand and take you to the finish line, and we will finish that together.“

It comforted me, but I wasn’t sure I believed it in my heart. Now I do. The consultant said something similar - that I was entering their world now, and it was one they knew inside out, and one where they’d look after me. People choose Oncology as a specialism for many reasons but so far, these are some of the most compassionate and encouraging people I’ve met.

4. Chemo doesn’t have to be a full-time drama

Because cancer treatment is part of life - and death - it makes for good drama. Soaps and medical shows often choose cancer as a plotline because it’s so feared. They love a deadly complication, and feature recognisable aspects of treatment - hair loss, vomiting etc - to evoke sympathy.

I’ve written about cancer myself, before I was diagnosed. My last novel, Owner of a Lonely Heart, actually features a widow whose husband has died of cancer, and a young brain tumour patient undergoing proton beam (and a very naughty therapy dog and a lot of hot air balloons - the book is honestly cheerier than it sounds).

Maybe I was tempting fate - there’s that phrase again - by writing it? But really, I’ve written 20 novels, so it’d be astonishing if I hadn’t touched on a condition that will affect half of us directly during our lifetimes.

I researched it carefully, and leaned into my own experience of grief and childhood illness. I spoke to some incredible young people who’d had treatment for brain tumours thanks to the brilliant Brain Tumour Charity. I watched head-scarf tying tutorials (which may be about to come in handy), and cancer vlogs. And then, most of it, I didn’t use on the page.

Looking back now, I feel I got it right. Because the whole point of that novel, and of the best drama, is that story comes not from what happens to us, but from how we respond.

The characters are tested by their circumstances, but the book is a story about parents, kids, love, dogs, and savouring life’s best moments. I didn’t put that much in about treatment because that wasn’t the interesting bit.

I was right. Chemo is definitely not the interesting bit. The science fascinates me, but the actual process of treatment is mostly very dull.

What’s important about any challenge is how it changes how we see the world, and the people around us. I’m in the opening scenes of my movie right now, but boy, am I angling for a happy ending!

PS: A bad hair day update:

Alas, my hair started shedding quite a lot last night. I’d hoped that because I’d almost made it to day 21, that could be a good sign (often loss starts around day 14). But I do have a lot of hair, so keep your fingers crossed some will be hanging on in there…