Here comes that weird chill.
Processing an unexpected diagnosis, going to meet the tumour, oligarch/asteroid.
Monday morning. Late March.
Mine and my partner’s anniversary.
We often forget the date we met. Nineteen years ago, Good Friday fell on the 25th March. One fixed date in the calendar, the other is religion’s moving arrow, zipping back and forth across weeks and sometimes months. That blur means that some years we might finally remember to raise a glass in late April. Others we don’t remember the date at all, a quiet curse that many unmarried couples with young families and largely chaotic, stress-filled lives suffer.
Monday morning. Late March.
Sat at the kitchen table. Phone pulses.
Withheld number.
Words spill out, each landing flat and metal heavy. Numbing, dumbfounding, they are an ice wave that floods straight through my blood. The trembling voice of the caller is clearly not used to passing on messages built from material made of such catastrophic weight.
“Are you sat down, is there anyone else in the house?”
“…results have come back…”
“… a sinister mass detected on your brain…”
“…passed on to neurology who will be in touch very soon…”
“…I’m sorry. The best of luck to you.”
Phone drops from hand to table top. That freeze has swept straight through the system.
Tick tock tick tock tick tock
Pulse pulse pulse
Head and heart beating faster, pulsing together. It’s so very hard to comprehend what’s just been said.
It’ll take a few days to work out that I’ve just been introduced to a whole new part of me.
The voice on the phone is a nurse I’ve met previously in the ENT department of my local hospital. I’d been in a few weeks before for an MRI scan after experiencing moderate hearing loss (six months later, the loss is more like a tuning fork being hit against my ear drum, an obliteration noise I’d do anything to just shut off). The MRI came with a caveat. “If they see anything else when they scan, they’re obliged to tell you about it.”
Fine.
Of course I’m not going to spend the next two weeks petrified about all of the blackness that crackles and sparks around the edges of that sentence.
Monday morning, late March and my breath has become a little longer and a little less tense. All those potentials sit gauzy in the background thanks to my misguided idea of a medical timescale and a naive assumption that ‘anything else’ seen might mean a call within days of the original scan.
From a distance - frankly this whole fucking experience feels like levitating above the everyday, observing someone else’s catastrophe - the dialogue with the ENT nurse plays out like a pivotal scene in a distinctly average television programme - some dusty episode of Eastenders where a makeweight character has just been given the plot line that will ultimately see them written out of the show in a few episodes time. Cut to the Queen Vic, something’s happened, another pint poured, another fist flies. Classic doof doof drum roll, cut to credits.
Reality ended up being more horribly mundane. A scene from the middle of an Eastenders omnibus playing in the background on the iPlayer. Some niggling internal problem for us and no one else.
My partner is working in our spare room upstairs.
Both of our kids are off school, ill at home.
I float upstairs weightless and plotless to tell her.
I then have to watch as she buckles in much the same way I just have. Her face goes from Monday morning resignation to uncomprehending distress in a single moment.
That’s something I will have to live with. I did that and I am so sorry. A problem shared has just become a problem doubled.
i wish with every single atom of my existence past present and future that i hadn’t had to do that to her
Breath. Breath again harder. We can’t tell the kids, let’s keep this to us, how, how, how, how Jesus Christ how.
We are due to go on holiday to Portugal at the end of the week. A welcome escape from a sodden British springtime. With the passing of just one sentence, the holiday is simply forgotten, due to become some weird hollow blip in our history and on our bank balances. Gone, forgotten. Azar amigo.
A few weeks later, we are invited to meet the tumour.
I am now panicked all the time in a way that I don’t think I’ve been since childhood. As a five year old, irrational fears bubbled up at inconvenient times as my parents divorced and my cosy world stopped moving on its predictable, linear path. Sleep has become shallow and comes and goes in quick spells. Dreams are confusing, spiky. Stories go deep, deep, deeper into precisely nowhere. Tunnels upon tunnels upon tunnels. No light.
My partner and I walk to a room in Gate 36 of Southmead Hospital where a specialist calmly talks us through our new reality.
I have an invading force in my head. It is an unwelcome guest that has no plan to leave anytime soon. Quite the opposite in fact. It will become more aggressively boorish as time goes on (an action that will later referenced in a different meeting with a different doctor in a different department as ‘misbehaviour’, which makes the tumour sound like a playful cat rather than a cancerous growth that’s uncaringly trying to obliterate me). The specialist rolls a mouse around a computer screen left to right, up then down, moving through the angles of the complete ugly globe of the inside of my head. There, on the left side.
A cloud. A blossom
floating over countryside idly
- or -
chaos a white disarray the contents of a cocaine wrapper spilt over a busy table top easily cleared up just need the right crew to do the job shouldn’t us take long
Really, the whole thing is a thick black curse lying right across the mind, one that it wants to envelope. A mass on the brain, amassed on the border, lurking in the old grey matter. All these visions running together, telling the story of something I knew nothing about three weeks before.
The tumour is introduced with care, calm and a lot technical terminology. When my partner and I walk away, we can only remember the tumour’s potential names in our own abbreviated slang. The terms the specialist used are oligodendroglioma (a rare type of slow growing tumor that develops from glial cells called oligodendrocytes, most commonly found in adults between 20 and 40 years old) and astrocytoma (a tumor that originates from astrocytes, the star-shaped glial cells in the brain). Those two possible variations are what’s in the my head, each with a technical name that sounds like a science fiction reference point plucked from a ’60s Star Trek episode. To us though they are in our heads as oligarch and asteroid. One a squatting dictator, the other a frozen object poised to decimate its surroundings when it finally enters orbit. Neither one sounds like a particularly pleasant tenant.
If one wants to definitively categorise the tumour, we are told that one has to get a piece of it. And that will involve an operation, whether that’s a skim-in-and-assess biopsy or a full on/no messing surgery session. The first is an incision followed by a rapid smash and grab for a usable cell sample. The second is a deep old drop right into the chasms of the brain, a submarine search for my undesirable interloper. Fantastic Voyage carried out in a West Country hospital.
And there’s a footnote to all of this. Due to the position of my tumour - left side of the brain, if you place a finger somewhere between eyebrow level and the top of your ear - I will need to be awake during the operation. The reasons will be spelt out over the coming months, but the initial takeaway is we need to talk to you as we’re cutting in.
As I leave, I begin to realise that all this new information, these new names and their theoretical shapes and the procedures to get rid of them are starting to define my story.
These things are beginning to dismantle and decontextualise the old me. If life so far has been a flowing, shifting river, it just visibly changed course. Navigation just became harder and the horizon has become less clear. Water rolls and shifts and lashes and the banks that seemed to hold everything in place are becoming eroded, fading into nothing with each new conversation.
On the mind: One Hundred Days by Mark Lanegan.
UK No1 single on diagnosis day: Beautiful Things by Benson Boone. Most popular film: Wonka.