Time, time, time, see what's become of me
56.56% of a year, coffee shops, ASDA MRIs, an ecstatic summer and a slight of hand
Two hundred and seven days between initial phone call and needle into skull.
25th March. The heating is on. A late seasonal last blast of winter gets cracked wide open by a call from the ENT department. The introduction to the big idea. This is your hypocentre. Months later, at 7am on Friday 18th October, the heating is on as if the outside world has announced we’re all in for the season. In the seven in the morning half light, Southmead Hospital looks like its blinking itself back into the real world for another day. The reality is it has run hammer and tongs every second of every day since this place first opened its doors in 2014. This is a building that sleeps with one eye open.
Those two hundred and seven days saw countless hospital visits. First meetings, detailed discussions with the specialist surgeon about what the brain tumour is and what it might be. Talk of its placing in my head and decisions about when to go in and take it out. Mental tests that take hours and feel like they’re turning your head inside out in order to test what’s still left and what might have been edged out by the tumour. Multiple MRI scans with gadolinium contrast added after 30 minutes, all to enhance tissue visibility within the brain. Dozens of coffees in different cafes, each decision a small stamp of approval for one place or another. Costa bonus points are down and Willow Coffee Shop - the one with outdoor green space and pretty decent toasted sandwiches - heads for the win.
Always the same question at the end of every meeting. When do you want to do this?
It’s an impossible ask, until it isn’t. The specialist - and outside of his neurology department, psychologists both before and after surgery - acknowledges that I have been given an extremely difficult question to answer as I am not experiencing any debilitating issues. Those will almost certainly come later, as these things will always eventually misbehave (their words pin it all down like a rusty old anchor). My tumour has been discovered by accident. As the MRIs continue - different hospitals, in makeshift units in an ASDA carpark, every time pumped full of contrast - the tumour grows slowly, microscopically taking up space where it shouldn’t be.
Hang on, hang on… I feel like I’ve written all of this before? It’s like I’m skirting around the edges here, talking endlessly about delays and decisions, dilemmas, deadlines before eventually consuming a big enough mass of drugs to properly submerge you for the surgery. Misbehaviour and MRIs… add in speech and memory issues and awake surgery and you’ve got the full greatest hits package.
The truth is these posts are an attempt to document a journey and to creatively find a way to capture all the squalling noise that blares around inside a panicked head when things very quickly go south. That plummet started on 25th March and continues to this day even though I had the operation on 18th October. It’s hard to know what to do with all the chaotic swirl of new information. It comes at you like an attack - your brain fizzing, wild and unsure which new direction to look in. Previous to diagnosis, I thought that that fizz was just me dealing with an addiction to the internet, now I’m convinced it’s a scramble brought on by the tumour, the operation and the (temporary, hopefully) opaqueness that’s left by radiotherapy and chemotherapy. As ever, fingers crossed.
The decision about the operation was actually made early on when I told the specialist I would have the thing removed. Despite the stack of warning information about strokes and bleeds and perpetual issues, I said yes in one of our first meetings in April. I just didn’t say when. After that, weeks of indecision and procrastination turned to months. More MRIs, more meetings. Seasons changing outside the window, heating off then on again. Conversations with psychologists who would repeatedly state, “I’ve never heard of anyone faced that choice.” Basically, it seemed like the choice was something along the lines of ‘you have discovered a bomb which you are now holding. Tell us when you’d like us to attempt to defuse it for you while you hold it’. My own Saw movie plot, playing on a loop.
My children were ten and fourteen when I got the diagnosis. They are forever beautiful, impressionable, curious and wide-eyed. If I’d needed to have the operation that first week, I could have sat them down and explained the situation. But I didn’t need to, there was no rush other than a series of medical check points that might just point towards things changing in the head. So the ‘when do we tell the kids’ became another growing part of this complex scenario running beyond the NHS question.
The summer that came between diagnosis and operation was fully surreal - a vast psychedelic dream surrounded ominously by the grating darkness of a nightmare that I could just about push back with optimism. There was a quick trip abroad (heavy medical insurance bunged on top) that began with a flight where I genuinely feared something popping in my skull as the plane ascended over Bristol. When life carried on exactly as it had done on the runway, a kind of super-ecstatic relief appeared - a realtime reminder of the wonder and glory of life delivered at 30,000 feet in an Easy Jet plane. Elsewhere, glorious escalation, music festivals, carnivals and countless scenarios with friends who wouldn’t find out about the illness until after the operation when the deed was done. Because why rain on anyone’s parade when it’s still so sunny outside, the music sounds great and we’re all here, happy in this minute?
During meetings, the specialist talked about tumour options and what might be in there gathering speed in my head. The details rarely changed, until they did. On a check up phone call, his opinion on what was in there went from a near certainty to something that sounded a bit more blurred. It just might be something that would be harder to work with after the operation. If this was a slight of hand, it was perfect. That deep blackness I’d held around the edges trickled back in, biting and scratching new space for itself, moving towards the centre of everything. And all of the repetition and indecision and stolen positivity had to end.
So when do you want to do this?
18th October was his date, two hundred and seven days after that initial phone call. Seven in the morning half light. Southmead Hospital, blinking itself back into the real world. I am nil by mouth and checking in for major surgery, a large chunk of which has to be done while I’m awake. Huge to me but really nothing more than a pin drop inside this building that forever sleeps with one eye open.
Really hope the place is still up for going hammer and tongs for the next few hours.
Quick update from the modern world.
Woke up this morning and my legs didn’t work. A temporary thing, gone within half an hour or so. Felt like I’d been properly drunk last night or spiked with some mad edible, had no control over coordination at all (please note: Scatterbrained author was entirely sober last night - highlight was watching the second episode of Destination X on iPlayer). Might be blood sugar levels, or it might be peripheral neuropathy, which Google points out 1 in 10 people over 55 are affected with (I am fucking 54, goddammit). So, sorry for all the time jumps that seem to happen with these posts - I just wanted to say that it doesn’t take much to remind you that all those whooshes and rushes you get with illness and recovery still have the power to properly knock you four feet sideways when they want to.
Also, Duolingo has started pushing ads at me for pensioner apps. I am still fucking 54, goddammit, no matter how bad the legs get.