One of the best presents Lisa bought me in recent years were some swanky, silver-coloured Bose noise-cancelling headphones for our 25th wedding anniversary.
They've proved their weight in silver in recent months with the rubber on the headphone cups beginning to wear down as I repeatedly clamp them on to get me off to sleep, and then in the early hours when I wake again - listening to albums, playlists, podcasts and anything that will distract/feed me on Spotify. They're re-charging now after the past couple of nights when I've twice woken not long after 3am due to the steroids.
I went into my 11th chemo cycle on Monday pretty tired after a full weekend which saw our friends Mike and Helen drive down from their home in Scotland for a visit. They are taking six months off to travel South America in January and wanted to see us before they head to Mexico, armed only with a couple of large rucksacks-full of essentials. As someone who over-prepares for a trip to the cancer ward (my small rucksack usually bursting with books and food that I probably won't touch), the thought of packing for a half-year journey to another continent brings me out in a cold sweat.
It was lovely to spend time together with the visit revolving around food and drink - a Mexican restaurant and the pub on Friday night, then cafe trips on Saturday and Sunday. Although they stayed at a local hotel rather than in our packed house, they were the first people we've had visit for a whole weekend since my diagnosis. I was slightly worried about fatigue and at one point had to be honest that I needed some downtime. This didn't come easily as, as I've mentioned before, I'm a bit of a people pleaser and don't like the thought of offending. Still, it also felt like necessary self-care and I was proud of myself for risking any awkwardness which, obviously, didn't follow. We had a great time catching up and re-connecting. On Sunday afternoon it was also good to watch Reuben get the man-of-the-match trophy even if his team lost 3-1 in a closely fought game.
So, by the time I was ushered into the chemo ward at Burton on Monday I was ready to get my headphones on and have a little snooze. However, my chemo friend P (we're getting a bit of reputation on the ward) turned up and we spent the next few hours chatting away instead, which, as always, helped the time pass. I also managed to miss my mouth with my small pot of steroids and anti-sickness pills which then got lost in the crack of my seat, meaning the pill pot had to be replenished. It also dawned on me afterwards that the two gracious young nurses who administered our treatment are called Holly and Ivy which obviously needs to be repeatedly brought up in a Christmas context in the coming weeks.
I left hospital at 3.45pm with my chemo pump attached, feeling a bit wired and woolly-headed, as I usually do after being dripped full of chemicals and steroids for five or six hours. Thankfully, Lisa's patient parents Vic and Jan - who had dropped me off at 9.15am - were still on hand to negotiate the A38 home.
The small chemo pump is a plastic bottle which contains a shrinking balloon that dispenses two grammes of Flourouracil an hour over a 46 hour period. It's basically like the most sluggish water balloom you'll every throw (if water balloons were filled with a toxic substance) and it amazes me how exactly it sheds its load, seeming to only use gravity as an aid. Because of a couple of mishaps in the past, due to kinks in the pump's wire, I (as instructed by the nurses) weigh it every couple of hours to check it's still working. It basically drops from around 165g when full to 55g (the weight of the empty bottle) two days later. The district nurse is due here shortly to unhook it and flush my PICC line. It's currently not quite empty (pictured above, pretty deflated, a short while ago) so the slowest race in the world is on for it to finish draining before she rings the doorbell.
I even continue to weigh the pump when I wake bleary-eyed in the early hours for the toilet. This happened at 3am on Tuesday morning having only dropped off (me not the pump) just after 1am. Following an hour or so of failing to get back off to sleep, I gave up and listened to the latest The Rest Is Politics podcast which was an hour-long intervew with the Palestinian Ambassador to the UK, Husam Zomlot. This followed a similar podcast with Israeli historian Yuval Noah Harari and, together, the interviews gave a fairly nuanced picture of the background to the horrific unfoldings in the Middle East. Co-hosted by ex-Labour spin doctor Alistair Campbell and ex-Tory minister Rory Stewart, the podcast is a mostly non-partisan dive into the increasingly unbelieveable world of UK and global politics.
I always forget how tired (but still wired) I'm going to feel on the Tuesday after chemo and wonder why I feel flat by tea time. Once I remembered this, we had a fun night with Dan, Rosie and Georgia in the lounge watching England eventually trounce Italy in the Euro '24 qualifiers and generally chatting rubbish for a few hours. It doesn't happen all the time, but having the kids hanging around in the lounge for an evening - even if they may be interrupting whatever we were watching on TV - can be lovely.
Last night, I dropped off to sleep half-way through a fascinating interview by the Archbishop of Canterbury withThe Usual Suspects star Gabriel Byrne on BBC Sounds at around 11.15pm, and slept until 3.30am. After peeing and weighing the pump (still shrinking!), I lay in bed for an hour or so thinking I might drop off, again to no avail. I reapplied my headphones and turned to my 'Sleep' playlist mostly full of wordless, ambient tunes, but that didn't work. It only helped me to think about what songs I might want to have played at my funeral (to send everyone to sleep?!) before my thoughts turned to what I might do for my/our 50th birthdays next year and what music I might want to celebate that. Strange order, eh? Death planning, followed by life planning...
Anyway, by 5am-ish, with no hope of sleep in sight and inspired by birthday thoughts, I'd moved on to making a dance party playlist, flitting around Spotify on my phone. Available below, it started with some random upbeat recent numbers by the likes of Fout Tet, Bicep, Maps, Fontaines DC (Soulwax remix) and Warrington-Runcorn New Town Development Plan (whose mouthful of a name alone would surely disqualify them from Eurovision in the unlikely event they entered) before ascending/descending into more familiar artists like Pet Shop Boys and Paul McCartney.
The dance party in the dark in my head finally called last orders at 7.30am when I switched to Radio Four's Today. This usually gets me dozing and, sure enough, I nodded off until 9.15am, and then finished the Gabriel Byrne interview which he ended with the simple yet profound statement: "Contentment can only come with acceptance."
I managed to drag myself out of bed for a pre-arranged visit from our church pastor (minister) Steve at 10.30am. We went for a wander and chat around the local lanes before he headed back to church an hour later. Steve is one of the few people I feel comfortable enough to see, outside of family, during my chemo week when things can be unpredictable in terms of how I feel physically and mentally. Others include friends Paul and Jay who I've met with most Fridays at 7am for around 15 years to pray for half an hour before work. I use the word 'pray' loosely because we usually chat about family, fishing, running, Reeves & Mortimer and music festivals before realising we've run out of time and shoot off some quick-fire pleas for each other and our families. I guess the longevity of my relationships with Steve, Paul and Jay - and the fact these times are relatively short and boundaried - means they are safe spaces for me during chemo weeks, and also times where I feel enriched and not totally in my own head.
Despite spending a fair bit of time alone (often necessarily), life does feel increasingly 'full' in a good sense for much of the week. Which brings me back to my party playlist and the life-affirming lyrics from the Fontaines DC Song, 'A Hero's Death', which I'll leave you with:
Don't get stuck in the past Say your favorite things at mass Tell your mother that you love her And go out of your way for others
Sit beneath a light that suits ya And look forward to a brighter future
Life ain't always empty Life ain't always empty Life ain't always empty Life ain't always empty Life ain't always empty Life ain't always empty Sink as far down as you can be pulled up Happiness really ain't all about luck Let your demeanor be your deep down self And don't sacrifice your life for your health When you speak, speak sincere And believe me friend, everyone will hear
Life ain't always empty (repeat)
Bring your own two cents Never borrow them from someone else Buy yourself a flower every hundredth hour Throw your hair down from your lonely tower And if, and if You find yourself in the family way Give the kid more than what you got in your day
Life ain't always empty (repeat) Never let a clock tell you what you got time for It only goes around, goes around, goes around Take your family name for your own great sins 'Cause each day is where it all begins And Don't give up too quick You only get one line, you better make it stick If we give ourselves to every breath Then we're all in the running for a hero's death
Life ain't always empty (repeat) That was the year of the sneer now the real thing's here
Songwriters: Carlos Ramos O'Connell / Conor Patrick Curley / Conor Patrick Deegan / Grian Alexander Chatten / Thomas Patrick Coll A Hero’s Death lyrics © Domino Publishing Company