There are around 200 separate cancers we currently we know of. Each of them is unique in the way it works and how it can be treated. No two cases are the same and are as different as the people that get them. The one common bond with all folk with cancer is that of sleep, or rather the lack of it. At a mindfulness group (yes I know) I attended at Barts the first thing we all had in common was our stories of insomnia, of the dreaded 3am eternal. We all had experience of being wide awake in the middle of the night either through the effect of steroids that counter the worse effects of the chemo, or scanxiety over upcoming results, or just the plain old brain processing a million thoughts that you’d been successfully avoiding all day by being “busy”.
Sleep is one of those things that you absolutely take for granted until it disappears, then your whole world revolves around it, like being able to see or having a functioning government. While the rest of the world recharges it’s batteries for a new day ahead, the still, dark night is perfect for all your anxieties and fears to take charge of your thoughts. It’s like supercharged hypochondriac insomnia, but cancer folk really do have something to be frightened of. The night just extenuates that. Why do you think horror fiction and films largely centre on the night? I watched a video of the first ‘Nightmare on Elm St’ at a friend’s when I was 12 (!) and couldn’t sleep for weeks afterwards.
I had a huge case of insomnia last autumn. It was triggered by my second four month chemo course of the year, grief, frustration and utter boredom that I had been ill for three whole years. For some reason that number really hit home. In that time I could have done so much. I could have written a book! Lived in sub-Saharan Africa! or become an academic (a masters and half way through a hastily conceived PhD course where I end up having a drink problem and a small nervous breakdown). Friends of mine have got married, bought houses, had children and split up in the time I’ve been ill (not the same friend I hasten to add). So what better time to think of all the different scenarios your life could have taken than at 03:37, especially when you have an early appointment the next day.
The middle of the night can be the loneliest time for people with cancer. I’ve been single for the course of my illness, but on the rare occasions I’ve had company, I still can be found staring at the ceiling while they sleep soundly next to me. In my head all I can think of in a jealous rage is “How are you able to do that you FREAK?!” In full knowledge that I’m the one that’s malfunctioning.
So with all that in mind I decided to take some action. With my break in treatment that I’m enjoying now (Update!: The Sirolimus seems to have started working and my tumour markers are being capped at the moment), I have the strength to try out a few techniques to help my sleep. After reading countless books and blogs, all major sleep advice is based around the following 5 things.
Establish a routine. Now this is all well and good when you have a steady job with fixed hours, but every cancer patient will tell you there’s nothing routine about being ill. It takes some work but I’m trying to be in bed by 11pm and by 12 go to sleep. I’m trying not to look at my phone and read a few chapters of the latest book I’ve got on the go instead. At lights out I’ll listen to a podcast - science, nature or comedy are good for taking your mind away from itself through my sleep headphones, as modelled above, which as they are flat means you can lie on your side and not hurt your ears. Most podcasts last around 30 - 40 mins and I can set my app to turn itself off after a prescribed time. This seems to work for me as distraction is a welcome relief from the incessant chatter of my brain.
Set an alarm and get up straight away. I set my alarm for 0730 and have to get up. Even if it’s to make a cup of tea and go back to bed with my book. I’m not allowed to snooze again. This my seem like obvious thinking if you have a 9-5 but cancer life is never like that. If you’ve had a long hospital time the day before, getting up early can seem as enticing as sticking pins in your eyes. It does work though. Limiting your sleep time is proven to help you get a better quality of sleep. It may feel contradictory but I seem to be getting more actual sleep as a result.
Get some exercise. I’ve been doing the 76 mile Capital Ring stage walk and I have to say that I’m sleeping a lot better on the nights afterwards. Again this is really difficult if you can barely get out of the house for a pint of milk, but exercise really does seem to help.
Limit alcohol and caffeine. Oh what a joyless lot these sleep experts are! What’s the point of living if I can’t have a triple espresso with a whisky chaser? I obviously have failed miserably at this one, but you definitely get better sleep when you’re not half cut. I’ve yet to find a herbal tea which is as nice as a hot ‘bina though.
If you can’t sleep, get up. Apparently there’s no use in staring at the ceiling. Get up and have a drink of water, read a chapter of a book (don’t pick up your phone - I fail all the time at this). Write down anything that is bothering you and say you’ll look at it in the morning.
I hope some of this helps you, cancer person or not, if you have insomnia. It’s still a work in progress for me.
This week I’ve been….Listening to.. Rachel Bland, Deborah James and Lauren Mahon’s new BBC 5 Live pod, You, Me and the Big C…..Reading Ben Aaronovitch’s The Furthest Station, the latest in the Rivers of London series about nasty goings on at the end of the Met Line….Watching…..I, Tonya with great performances from Allison Janney and Margot Robbie.
Next week: Mind your Language! Why cancer isn’t a battle, it’s not about bravery and other overused expressions which should go straight in the bin.
Note on the title it's from this Gene track, and nothing to do with actual fighting cancer obvs.