The Wide Awake Club

EC update, fasting to the rescue - & the women in the 3am insomnia club.

Warning: contains references to grief and loss.

Thanks, Dexamethasone. You’ve given me insomnia, but also a flashback to a particularly annoying 80s kids’ TV show.

If you’re fortunate enough not to remember The Wide Awake Club, the jingle went: it’s good to know you’re ready and you’re WIDE AWAKE. Even the graphics are triggering me right now… because I’ve spent far too long this last week WIDE AWAKE at 3am.

But on the plus side, I’m now seven days since my first dose of EC¹, aka the Scarlet Saviour, and I’ve had fewer side effects than I’d feared. It’s mostly been about being either Timmy-Mallett² level wide-awake (from the steroids), or dormouse-drowsy (my body using all spare energy to dispel chemo).

For the first time since starting treatment, I used the tool I’ve relied on since 2012: fasting. Research suggests that restricting food the day before and on the day of chemo can reduce fatigue and nausea. But it’s not straightforward: my digestion isn’t in the best shape, plus some of the drugs that stop chemo reactions should be taken after food.

After checking with my consultant³, I decided to eat very little over those two days.

My aim was to try to put my body’s healthy cells into a dormant (dormouse?) state by reducing food intake, while leaving an open goal for the intentionally toxic chemo to attack cancer cells. In addition, the less food I took in, the less my digestion might be upset by the drugs.

I did discover I’m less able to fast completely then I was before, because of heartburn - but small snacks of crackers, bread sticks and some sugar-free sweets definitely helped. The strategy certainly made me feel more in control (yes, Claire, that one’s for you). I can’t say this has been a brilliant week, and my tastebuds aren’t behaving, but overall, it’s been better than I feared.

One dose down, three to go…

The insomnia game

Let’s return to the 3am club and boy, it’s one lonely joint. Previously, when I’ve been the person waiting in A&E or ICU family rooms for news of loved ones , 5am was the worst time. But that was in winter, when the darkness was so profound and the uncertainty even more so.

This time, my mood is different. It’s nervier and more active, thanks to steroids. And 3am is when I always seem to wake up.

What do you do when you can’t sleep? I often start off doing all the ‘right’ things but progressively veer off course. Here’s my rough journey from coping to, um, not.

1. During Phase 1 aka Sleep Hygiene Goody-Two-Shoes, I try Calm’s sleep meditations, plus audiobooks which sometimes send me to sleep (having finished The Wedding People which was utterly brilliant, I moved onto Maurice and Maralyn - but perhaps a midnight mid-ocean collision with a whale isn’t conducive to restful sleep. Who knew?).

2. By Phase 2 aka Scrolling Hurts No-one… sees some of the rules go out the window. I stop trying to resist the lure of the screen. I might begin with Substack and newspaper features (I’m way too raw for the news right now). But soon I’m giving into the full tappy-tappy of Lily’s Garden (not the relaxing bits, the flashing neuron-firing game rounds). All under the duvet until my phone or brain overheats.

3. Phase 3 aka I’ll Sleep When I’m Dead Which Might Be Soon: overheated and utterly awake, I admit defeat by moving to the spare room (I am so lucky we moved house before I got ill, so I have this option). I promise myself I’ll do Duolingo but usually end up doom-scrolling (sometimes even haunting cancer forums) till my eyes stop working…

Pull up a chair…

This week, something’s shifted. It kicked off with morbid thoughts, which wasn’t a promising start. But bear with me…

My 3am thoughts turned to two writing mentors, both lost too soon due to cancer. The irrepressible Crysse Morrison was an icon in the lovely Somerset town of Frome. She worked with me on my first longer piece of fiction (thankfully unpublished: despite being based on a real-life experience of dating a liar with a double-life, I could never quite make it believable) and celebrated when I was finally published.

Crysse; an article she published after my novel came out; her poetry collection, which I highly recommend

And then I remembered Clare Boylan, a generous and tremendously witty Irish author I met in Thailand. It was my first solo long-haul travel experience - after I took redundancy from the BBC, I went on a Skyros writing course on the Thai island of Koh Samed. As we sipped sundowners and fed the mosquitos, Clare made me believe I could write.

Clare, Clare's novel, a screenshot from the video I made of me looking impossibly youthful.

Both women dazzled. Both died too young. When I looked it up - yes, 3am obituary reading is another bad habit - I realised Clare was a year older than I am now, when she died from ovarian cancer.

Maybe you think I’m a glutton for self-punishment, creating this image of a sticky, waterside bar table where I sit toasting these women? I wasn’t sure myself at first. Shouldn’t I be focusing on survivors?

But it’s easier to picture the people we’ve lost in the twilight hours. In daylight, reality makes it impossible to populate your imaginings.

What is clearer to me in the day is that this isn’t morbid. Those women inspired me then and they are inspiring me now, too.

Both were older than me when I met them, and represented the kind of woman I wanted to be: outspoken, brave, confident. I don’t think I’ve qualified 100% for those adjectives myself yet - I am still a little too tentative and careful at times - but if not now, then when?

I don’t know if they were ‘brave’ in the face of cancer because I’m not even sure what that means. But I sense that they both would have squeezed the most out of the days and hours and minutes they had.

So here’s what I’m taking from The Wide Awake Club and my VIP guests: it’s a wake-up call for me to grab life by the short and curlies - as soon as my energy returns.

And the next night, I allowed some other women to join me at the 3am club.

A sweet sherry, a Snowball & a Gordon’s with bitter lemon

My mother, aunt and grandmother never travelled beyond Europe, but this week, I welcomed them to my Thai table, to enjoy their favourite tipples. Their voices seem both fainter and stronger to me: it’s seven, 16 and 29 years respectively since I lost them.

I’ve recently started writing some fiction inspired by their early lives and it’s another conduit to who they were and what we shared.

My relationship with my grandmother was the purest. She was a strong, tiny woman and everything about her felt safe. My aunt was a musical prodigy, vulnerable yet inspiring. And my mother loved her two daughters, and books, except when she couldn’t. It’s taken me a long time to understand and process the second part of that sentence. But I think I am there now and it’s a huge comfort.

I remember when my mum was in pain, she called out for her mummy and at the time it surprised me, though it shouldn’t have. Perhaps we all want our mums in our loneliest hours. Perhaps that’s why she’s present now.

And, because nothing comes from nowhere, it can’t be a coincidence that today would have been my parents’ wedding anniversary. When I went through their many boxes of stuff after they died, I found their very long-buried wedding film and edited it down to less than a minute of 1960s retro bliss. It was quite the society do, in its day (my grandmother is in blue). So I’m sharing it now… it looks like the most beautiful day.

As for the 3am club, I don’t know who’ll be there next time, but it’s less scary than it was. And I’ll welcome all comers (except perhaps Timmy Mallett).

1. Read how nervous I felt about it here.

2. The ‘colourful’ presenter of WAC and sequels, now on Insta.

3. You have to do this before fasting or doing anything similar during treatment!!!! Everyone is different.