Never mind your fingers, I got blisters on my brain
Procrastinations, beady eyes, what's it like, fractions, "cops can't catch criminals",
If it’s ok with you, I’m going to temporarily step sideways. I’ll get back to the past soon.
Last summer, I’d moved into a very un-normal world. Every day was spent processing the whys and whens of brain surgery, flipping a Rubik’s cube of options and possibilities and what ifs about it all that came delivered with a heap of questions after each hospital meeting. At 54 years old, I know how frustrating I can be when it comes to making decisions. The surgeon in Southmead Hospital discovered this in real time - his time - which I was wasting with all my grand, procrastinating thoughts.
Prior to my diagnosis, I don’t think I’d ever really imagined what my brain was really like. Why would you if it’s working? If asked, maybe I’d describe it as like something glimpsed on a 1970s BBC documentary, the kind of thing seen on sub-Tomorrow’s World show half-watched in school while waiting for the bell to go. That version would be clearly drawn, a medical diagram in black and white. Harmonious sections and pulsing white lines and glowing neural pathways, all showing how ones glorious thoughts flow from one place to the next.
Post diagnosis, I started to believe that the inside my head was much closer to Jeremy Deller’s Turner Prize winning artwork The History of the World. A huge, mad, brilliant chaos of a flowchart that’s melting into a fizz of ideas and energy and utter madness, exploding all over a vast black space. Between acid house and brass bands, ideas run wild and connect in ways that don’t always make sense. This is pop culture presented at full volume, a reflection of a mind brought up on NME and Kerrang and Mixmag and Marvel comics. All those pieces are in their own place, rightly or wrongly. The question that kept coming up was is surgery going to screw all this up?
Post operation, my brain has been a listless and unconventional mess. The Tomorrow’s World Jr brain - seen in textbooks, fed on textbooks - feels like an anomaly. And all that psychedelic magic that The History Of The World fizzes up has now boiled right down, sparked out. Tomorrow’s World Jr might now be filled with adult ambition like a need to reread Kierkegaard texts while wordy Thom Yorke b-sides waft through on the stereo; the History version wants to excitedly guide you from Detroit techno to the Miner’s Strike. The reality of it all is that my brain now is like a zonked out Beady Eye-era Liam Gallagher, face half-stuck to a window, watching a fly slowly meandering its way towards my eyeball.
This year I’ve been experiencing something that’s been described as a radiotherapy fog, or chemo brain. If you google either of those phrases, you quickly find webpages on the National Library of Medicine with titles like “Glitches in the brain: the dangerous relationship between radiotherapy and brain fog”. Elsewhere, the University of Maryland School of Medicine happily points out that “nearly 40% of cancer patients who experienced memory loss, brain fog and other cognitive difficulties after radiation treatment for brain metastases regained full neurocognitive function within six months.” I can’t help wondering how are the other 60% are doing.
Hospital meetings often talk about brain fog as the long lag after the operation, a kind of mental opaqueness that smears over everything. I can easily work or watch multiple Simpsons episodes but the slowly growing library of books next to the bed aren’t getting read anytime soon. I’ve tried to ignore it, or pretend it’s just another boss level on life’s game of ‘just about getting by’ that I must have signed up to years ago, but no, this is a definite after effect of operation/radiotherapy/chemotherapy.
My brain fog is almost identical to a hangover that’s stuck in the head after a night of having got mildly pissed. Woozy, blurry, frustratingly out of focus. This morning’s 30 degree sunshine is adding an extra shimmering layer of weirdness (N.B. - I did not get mildly pissed last night). The fog isn’t too brutal, it’s not, ‘I might have had a bad pint’ and it’s definitely not, ‘fuck me, I’ve been fucking poisoned and I’m never drinking alcohol again’. It’s more a drifting blur of uncertainty that sits over a series of holes in the memory.
So far, all of it - initial operation, radiotherapy and now chemotherapy - has been aimed specifically at one point of my brain. Maybe that brain point is actually the hangover pocket, a extremely well built section that’s ready whatever time of day it is that I come round, hand rubbing the head, a crackling thought ringing round. “What the fuck happened there?”
My brain fog rooted down into cerebral town a few weeks into the radiotherapy process and has carried on through chemotherapy. On and off, things end up smudgy. Clear, open, positive ideas move to the back burner. The overarching message being beamed from the command centre is life like this isn’t hard, it’s more a total pain in the bloody arse that you have to deal with. It could be worse though. Because, let’s face it, we can all deal with a low grade hangover that doesn’t want to shift.
I’ve suffered enough of weapons grade, nuclear winter ones over the years to realise that I really don’t want an uninvited version of that moving in.
Radiotherapy began in March as the second stage of the NHS’ treatment process for cancers. The first blast happened almost a year after the first call from the nurse in the ENT department.
In a basement room in Bristol’s oncology department, I’m asked to lie flat on a table. Although so much has been explained in preparation, what actually happens during radiotherapy remains a bit of a mystery.
“Can I ask what it’s like?”
“It’s different for everyone.”
“So what are the likely side effects?”
“Hard to say, everyone reacts differently.”
As conversations go, this one’s a bit perplexing. And it’s also something of a shut door. Hundreds of people go through radiotherapy in these hospitals every day. Surely there are regular issues, or similar reactions in patients? Apparently not - this is you baby, taking your own unique trip. No point stressing it, your journey is going to entirely different from that of the person who’s just climbed down off the same bed. Relax, enjoy the nuclear powered light machine aimed very precisely at the left side your head. See you in ten minutes. The door slams shut.
There are basics, which are fixed. My radiotherapy treatment takes place over six weeks and is split into ‘fractions’. Each fraction will take around ten minutes and happens daily (weekends off). Each fraction sees the patient laid out on a table. In the case of radiotherapy to the head, the patient will wear a specially shaped mask put over the face to stop any potentially dangerous movement. Once the mask is locked down to the table, X-Rays will be beamed into the head in an attempt to destroy any of the tumour’s remaining cells. Once that’s done, thank you very much, see you tomorrow (reminder - weekends off).
At the final meeting with the doctor prior to treatment, I avoid asking questions about the state I’m going to hobble out of the hospital in and instead narrow in on how the process itself actually works. The doctor pulls up pictures on a computer screen of the inside of my head. The illustrations are different this time - less detailed, more basic, much more primitive than before. These are CT scans that look less like art and more like the crude illustration of the inside of Homer Simpson’s bonce in The Simpsons episode where a crayon is discovered in there during an MRI. The scan picture has a large hole in the head surrounded by concentric circles in different colours. The target area of the radiotherapy (and - assuming - the chemotherapy after it) is the centre of the hole.
Cancer is explained to me in basic terms - the kind the village idiot could take on board and work with. Homer with the crayon, smiling politely; Liam Gallagher, face against glass, fly moving in. However much of the initial problem has been removed, my cancer doesn’t have hard edges - its roots dig into surrounding areas and lurk. Their intention is to one day regrow and carry on their pernicious journey. Radiotherapy (and the chemotherapy process that follows it) will be aimed directly where the tumour has been and blast around the edges, taking in (in my case) an extra 1cm of space in order to scorch those roots. Oh, you can only have radiotherapy once in an area, so let’s really hope this works and gets that badly drawn crayon out first time.
Considering you’re alone in a room being circled and then zapped by rotating, body covering machines, the treatment itself is actually quite uneventful. When the machine is moving, there’s a desperation to keep your eyes closed as the light that floods through the edges is overwhelming. A peel of colour ripples in looking like the one scientists claim to have discovered after having repeatedly fired laser pulses into their eyeballs.
The process feels like it’s trying to pull your eyelids apart to let you see everything, like an am-dram Event Horizon playing out in the basement of the Bristol Royal Infirmary. Three quarters of the way through the process I asked if I could film myself going under the laser just so I knew what was happening. The film exposes very little, other than I can lie really, really still when there’s a massive machine aimed directly at my head.
Over days and weeks of treatment the medical staff become softer, funnier.
“Are you ok today, you look tired?”
“Do you want me to put music on for you?”
“Any changes in how you’re feeling?”
“I’ve cued up The Fall for you, hope it helps.”
Although it’s pretty forgetful as a process, radiotherapy definitely had an after effect during its later stages as it moves in as brain fog. Although the effect is temporary (hopefully I’ll be in that lucky 40%), the fog does make me question my own grasp on reality and the memory holes appear from nowhere and block out obvious, clearly defined norms. For example - I might look at a door, and know what a door was, why it was there and who could use it. And yet during radiotherapy fog, the word ‘door’ becomes a giant blank space. A void.
For weeks afterwards, my mind would snake around wildly, refusing to sit still and allow me to focus.
On any given day, I’d be sat in my usual spot (back to the kitchen window, facing down the entire downstairs right through to the front door). I will have a blank Word document open on the screen and half a plan of where the words will fall. Then my thought process starts to spiral. Look at Bluesky… has anything gone up on the Guardian that might interest me… how bad is my attention span… weather outside is looking ok, maybe I should wear something more seasonal… I can only skim the first two paragraphs of a news story before getting bored and itchy… where’s the cat why hasn’t he come to bother me for food in the past hour… was that the door… I should go check the door… there is no one at the door… what was I doing again oh yes that blank Word document needs filling.
For several weeks following radiotherapy, this spiral occurred regularly. Days at the computer, stuck on the brain’s own shuffling playlist of distractions and irrelevances that collectively leave you directionless and more than a little flat.
Thinking about it, that sounds exactly like a hangover that’s stuck in the head after a night of having got mildly pissed. Have I mentioned that before? Was that the door? I should check.
Just to follow on from last week’s story about genius DJ/producer/music head/Optimo supremo Keith McIvor/J.D. Twitch and recent his brain tumour diagnosis, there’s now a Crowdfunder page set up to raise money for urgent care and support. If you can pay the price of a pint - or maybe even a decent night out - click here to donate.