I wanna go to Brainville.
Not used to these sorts of questions, 500 steps, Dylan Thomas and a Bristol Registry Office, 'how are you doing?'
Questions raised during initial conversations with the hospital neuropsychiatrist:
Have you given it a name? Lots of people I’ve worked with end up calling it Nigel. That word clearly feels like something to rage at.
Maybe mine should be called Liz Truss as I can’t seem to eject her from my brain this week. It’s early April and although she’s no longer prime minster, she is still somehow a useless and destructive oxygen drain on Britain’s news cycle, roaming around America bellowing back that everything’s our fault. If only we’d been deranged enough to follow her guidance, everything would be ok now. For a split second, I find myself wondering whether I would be ok now, if only I’d spent more time nodding toothily in approval while she gassed on and on and on and on.
I just wanted to ask whether you have considered ending your life?
Hmmmm. That’s a strange one.
I work the question round in my head. It warps as it loops.
Does this potential death sentence make you want to kill yourself, or does has it made you want to grab life and life it to the full?
While the diagnosis has - I think, I hope - brought an overwhelming desire to stay alive and grab as much future as I can, there’s other unshakable thoughts at play. Like… why go on? And what on Earth would you do with whatever time you have left?
Afterwards, the psychologist’s question weighs heavy. I keep coming back to it.
53 years on this planet… it would be a lie to say that during that time there had never been a split second spent thinking about abrupt get out clauses. Life can be incredibly tough, and aspects of the music industry I work in can be a relentless shitshow of grind for decreasing rewards. So much time is spent accepting that toughness, which is never the easiest job. But being forced to look directly at time - at your own time - is a startling thing.
Because when it comes down to it, time is the one thing we all end up desperate for.
Time to watch every spectacular sunset or to lie awake basking in the dawn chorus. Time to work out the day’s weather from looking at the sky and reading the signs. Time spent in the pub playing cards with your family, or sat alone with the Sunday papers and no plan beyond the next pint.
Time to read all those emails that I’ve stupidly subscribed to, all those pointless sales pitches and ads for clothes that won’t fit. To flick through all the receipts I’ll never file or all the recipes I’ll never make. To ignore the shelves full of books bought on a whim. To listen to all of the records that make up the holy canon of music that I’ve always lied an intimate knowledge of. Time to recognise which numbers to ignore when they flick up on the phone screen. Time to finally learn how to play Fortnite with my youngest.
Time to live and breathe and flow in and out of all those hours that surround you.
Weeks pass and meetings continue. The tumour becomes less an idea and more like something solid in my mind. Being a patient rapidly becomes a full-time job that I never applied for, an occupation that I’d forgotten interviewing for. It is now a business that myself and my partner have entered into. Thankfully - reflecting situations across the rest of our lives - she is brilliantly, relentlessly effective in meetings while I sit there shellshocked and useless.
And those meetings continue and more time passes. New MRI scans, new discussions with the neurology team. And a cascade of words, all the time.
Memory, memory and speech.
Week after week trudging through the hospital, corridors become overly familiar. The pathway I take to Gate 36 is automatic, a clean robotic 500 steps from revolving entrance door to “please take a seat over there”. Remembering every single tile on the floor, how it joins to the next. Attention is paid to little else.
The specialist talks through reasonings and logic, whys and wherefores. Our meetings are becoming more familiar, even if he’s hiding any frustration as our lack of a plan. He carefully and calmly points out that there’s nothing I could have done in my adult life that might have caused the tumour seeding, growing, blossoming, blooming. It seems we’re all minefields, I just happen to have my foot on one right now.
But that feels at odds with how my brain works. I now think of the tumour as a hardened physical object that represents all of my nagging thoughts and all of the stresses of a freelance career that feels like it’s been on the slides for years. All those black skies and lost afternoons staring at a blank computer screen have slowly expanded into something alive in my head. Every unreturned email or botched pitch has tightened into this lump of sabotaging, self-loathing rot. In contrast to what the specialist says, this thing might well be a manifestation of all of my bleakest thoughts. I think hard about raising it with the specialist in some desperate moment of half sanity, but quickly put that idea away. Lock the door on it, it’s not going to help any of us.
As dismal forces rose across the continent and all those ugly seeds of war were sown deep, one of Wales’ true geniuses Dylan Thomas was writing love letters to Caitlin Macnamara. When the letters were sent, Caitlin was still in a relationship with Welsh artist Augustus John. John had recently knocked the poet out in a car park after being stung with an extortionate bill at the Eiffel Tower Hotel. The bill was hiked up by Thomas’ foisting his recent two-week bed, breakfast and ‘whatever was on the bar’ stay onto John’s tab.
Rambling, eccentric and deeply beautiful, the love letters were the kind of poetry that’s uttered by someone who’s got just one drink too many in them. Incredibly, they worked on Macnamara. The couple married ‘quietly and demonstrably’ at Penzance Registry Office in July 1937.
In the love letter’s idle thoughts, Thomas writes “There is, I suppose, in the eyes of the They, a sort of sweet madness about you and me.” Three weeks after a brain tumour diagnosis, that seemed to sum up mine and my partner’s relationship. My partner has put up with so much from me over the years, but that’s probably for a different Substack letter or a grovelling apology delivered from my deathbed. Once it was clear that we were under the wing of the NHS and being pushed in the direction of surgery, we decided to get married and convinced our GP to write a letter to Bristol’s marriage office to ask that they bend the rules on the 28 day notice period.
A massive crack of sunlight. They agreed. Wedding planned, booked, lived and loved within three weeks. Because what’s the point of wasting time?
We’d previously planned on doing something in London surrounded by everyone we knew. Going back through old photos for this letter, I found a handwritten plan down the spine of a copy of the Guardian from September 2022 (and those names are written out beside details the some new pointless activities of our cursed ex-PM: “Liz Truss’s government leaks like… well, like Liz Truss, which is the gold standard by which even sieves are measured.”) Every previous wedding plan we’d tried to work through was derailed by issues that rose up like wild brambles. Low level arguments would bubble up and everything just remained scribbles and smudges in newsprint sidebars.
This time, we went for it with the few friends who we’d shared the bleak news with in the first weeks since diagnosis. The wedding schedule was basically:
11am Wedding
Midday Nearest decent pub to registry office
1pm Amazing curry house up the road for dosas, cocktails
4pm En masse move to our local pub
11pm Back at our house until last man drops
5am My now-wife finally calls it a night (shamefully, I sunk off sometime around 2am)
Highlights of day. A beautiful and soulful marriage… each and everyone of the friends who came and raised many, many glasses and didn’t mention the tumour all day so the kids didn’t find out at the wrong point… Dylan Thomas’ love-letter delivered as a speech (an extract: “You’re the only person with whom I’m free entirely; and I think it’s because you’re as innocent as me. I love you so much I’ll never be able to tell you; I’m frightened to tell you”)… our youngest daughter’s speech at our local pub which our eldest daughter had helped her write (this featured a section about youngest being packed into a suitcase that made perfect sense by 7pm)… staggering home from pub on my own holding a series of huge balloons and what was left of a cake…
Actually, scrap that list. Every last magical second was perfection. And it’s all there seared into the brain… a forever glow, a horizon calling.
Sunrise over a perfect sea, all blissful and serene and rolling onwards forever.
Each pulse or glitch in my head now feels like a sonorous broadcast coming from a pirate radio station buried somewhere deep in my body. Small pulsars are sent out to remind me that the growth is an actual presence, a nagging thing that wants me to know who’s ultimately the boss.
Sat at my computer, I find myself regularly picking out a space on the left side of my head with my hand. I absentmindedly trace a line with my finger around every point where I imagine the tumour lives, tracing windows or hatches. At first it’s a small rectangle, a brick shaped block. Then it becomes more a door, a portal there on my head, ready be opened right up so my internal workings can be revealed.
i want to turn my fucking skull inside out pick at this fucking scab on my brain get rid of this fucking invader haunting every single waking thought take a pincer tear the whole fucking thing apart
I look in the mirror and try to work out where the incision will take place. How big would my incision be? How deep in would the knife go? Could I not do it myself, drill down, fit my own hand inside my head and unstuff all of this junk? Not just the growth, but all the other crap I’ve built up? Could I not just perform an Eternal Sunshine redux and get rid of all the bad memories, the past lives I’d rather raze, the relationships that soured, the guilty memories that hover like bad clouds over all the mornings after, long after the nights before have faded to nothing. Does that option exist?
all of the fucking dismal thoughts i’ve ever had the bitterness the cynicism the sneering and lying have solidified hardened to form this lump my internal enemy
The last couple of months have made it clearer that traumatic events quickly overwrite any and everything that’s come before. I realise that’s stating the obvious but it’s hard to properly process until your own story is immediately, relentlessly met with a concerned look and a “how are you doing?” That amount of love from friends, family and the odd stranger is a beautiful thing. And it's also overwhelming. That curiosity becomes a straitjacket around you that can’t be escaped. There’s no ‘let’s just go for a pint’ anymore.
I’ve always tried to be as curious in conversations with friends and strangers as possible throughout my life, following leads into people’s differing mental spaces, trying to learn and listen as much as possible. It’s why after releasing two singles on Saint Etienne’s Icerink label I realised maybe I was better off helping artists get interviews in magazines and papers than trying to sort them for myself. My story was limited, others around me seemed to have seen magic and could talk wistfully about the way music floats around us all the time. Dressing room access without the actual stress of treading the boards.
I’ve been an introvert since school, maybe even since my parents split up in the mid 1970s. I’ve always hidden behind a metaphorical fringe, now an ’80s Smiths fan hiding in the body of an overweight 50 something man. Behavioural blips like those Icerink singles or recent book publications offer an occasional brightly lit change but - for me - comfort has always been in the shadow spaces at the edge of the room.
Through no one’s choice, I’ve become the centre of attention.
Under the microscope, always on the microphone, floodlit bright to show up the flaws. The same stories from me, repeat repeat repeat to fade. It’s not easy to process so much love, sympathy, respect and patience while being asked the same questions in hospital over and over again. What do you think? When do you want to do this? So much to think about that my head physically shudders.
I just hope I’ve answered all those loving, caring questions I’ve been asked.
UK No1 single on day of wedding: Espresso by Sabrina Carpenter.
First dance at the wedding: Happy Together by the Turtles.
Went to Glastonbury for 24 hours this weekend. Best things seen: Weezer opening with Hash Pipe; the Red Arrows timing their planned Pulp flyover perfectly; Charli xcx hammering out Von Dutch (also, 30 mins after she’s left the stage, seeing her leading a parade of mates, musicians and fruitcakes through hospitality like some mad battalion of charged up clubbers marching off to war); Turnstile’s set peaking with Birds (alright, I watched that on the telly when I got back); John Fogerty’s mad, magical speeches about song ownership, his family, his wife, how we in the crowd were all like rainbows and cackling at the death of his former “motherfucker” publishers. Also, he banged out a pretty ace version of Fortunate Son too.