Non fiction

My Brain Tumour and Me

Chapter One

When you get told you have a brain tumour, how do you react? Should you take on the chin, steely-gazed, determine that ‘this thing’ will not ‘beat’ you, and then ring work to tell them you may be off for a week or so? Crumble like a house of cards caught in an earthquake, collapse, tear-stained into a loved-one or conveniently placed nurse? Or perhaps you do nothing? Numb to the avalanche of medical jargon, you sit and nod, the words ‘brain tumour’ ringing in your ears. You can’t speak because your brain won’t let you. If you could open your mouth, all that would fall out would be “brain tumour”. Maybe with an inflection at the end. “Brain tumour?”

 I can’t imagine it being a scenario played out too often, aside from the most ardent of headachy hypochondriacs. They all think they’re going to die anyway, so they’re probably the most prepared. Fail to prepare, prepare to fail and all that. Lucky bastards. Doubtless, they’ll have some questions typed up for the neurologist, a ‘don’t worry, I’ll be fine, honestly’ speech for the family (emotional backing song optional) and, should the need arise, (it won’t, they’ll be fine, honestly) a last will and testament.

Despite an ever-present runny nose and funny smelling wee, I was not a hypochondriac. This major character flaw left me hopelessly underprepared for the news I was about to receive.

If you will allow me the indulgence, let me backtrack a few months. I, Tom K. Stoker, (the ‘K’ stands for Kightly – my dad’s apparently unpronounceable surname) was a part-time barman, full-time (yes) English Literature student and all-star striker/defensive midfielder/consummate utility man for the now liquidated Bar27 FC. I lived with five other lads, all ostensibly students, in the hilly-but-wonderful city of Sheffield. I worked to pay the rent and sometimes get wankered. I was incredibly single. Sometimes I worked at weddings with a housemate, smashing flutes of champagne and trying not to knee small children in the face. Life was good. Exceptional.

As an English Literature student, I filled my time by playing football. Without sounding big-headed, fuck me I was brilliant. I’d compare myself to a younger, slimmer, less Brazilian Ronaldo; wondergoal after wondergoal rained in from my traction-engine of a right boot (I was top scorer two seasons running for my Five-aside team (no official records were kept so you can’t prove me wrong)), and I created goals like some sort of freak Xavi – Iniesta monster. Iniavi. To top it all, I could Cruyff turn better than, well, Cruyff. Honestly, it was a wonder I was never scouted. The one that got away, I guess.

I was so good that I was transferred in to play for my boss’ team. I’d made it. Living the dream. The sort of break I’d been wishing for. The sort of break that usually necessitates work-based fellacio. Play well here and who knows; bar supervisor? More bar shifts? Maybe, just maybe, I wouldn’t have to remove shits shitted into plastic cups and then placed in a toilet.

First game came and went. I can’t remember it too well but we probably won and I probably scored a wondergoal or ten. The second game was when the turd really began to hit the fan, in a sort of thousand-frames-per-second way. Sprinting down the wing with my usual lustre and joy de vivre, I decided to Cruyff the poor full-back and make him look a bit silly. Wonderful. Except this time, my right ankle decided to give way and I went down quicker than a lead-coated Felix Baumgartner. This was not good. It really hurt, and I had to watch the rest of the match from behind a metal fence, thinking ‘stupid shitty foot’. We probably lost.

Over the next few weeks, the situation deteriorated. Ankle turns became an inevitability and, towards the end, I could barely kick a ball. It felt as if my right foot had been replaced by a particularly flaccid piece of cardboard. The time had come for me to announce my retirement from Plug FC and take an extended sabbatical from all sports altogether. Naturally, this put paid to any chance of job progression at Plug, so I quit.

For ‘quit’ read ‘found another, slightly better paid bar job where there was actually some semblance of skill involved and we had to make proper cocktails and everything’.

But before I could properly leave Plug for the green, green grass of hot new property The Viper Rooms, the notorious ‘last shift at Plug’ had to be suffered. This involved getting very drunk during shift, dentist-chairing as much Sambuca as possible and sometimes trying to do my job. Thankfully, my last shift fell on the Thursday of Freshers’ week. Traditionally the busiest night of the year. Never mind the thousands of sex-hungry, drug-and-booze fuelled freshers clamouring for Jaegerbombs (pronunciation variable and often hilarious) and ‘doublecokeandvodkaaaaaa’, I was getting wankered. Some events-managing genius had also decided it’d be a great idea to setup a hotdog stall so I got a free hotdog. Life was still great. Of course I threw up in the toilets and on my boss’ car. I had a new job. Bridges had to be burned.

The hangover was particularly brutal. In fact, monstrous. Inside my head sounded like the piano from LCD Soundsystem’s ‘All My Friends’, except the piano was being played by a nasty child with no talent. A dwarf star had started forming in my stomach and the toilet was a scene of devastation. I could barely lift my eyelids. Communication consisted of grunts and howls and, if desperate, a point and grunt. Seconds seemed like days, hours seemed like lifetimes. I drifted from existential crisis to an anatomised version of myself to a hyper-obsessive nihilist within what could have been a blink or forever, mused on life, love, and man’s inhumanity to man, invented an entirely new pallet of colour, experienced my own rapturous enlightenment, reached the highest plain of existence, proved the actuality of time, remembered my birth and understood everything to the molecular level. But then someone brought me mango Rubicon and a pot noodle.

Mango Rubicon and pot noodle. The global panacea. Because of this I managed to make it to the local Sainsbury’s and get something in for dinner. It was probably another pot noodle. I don’t think I was quite ready for proper food just yet. Also bought five litres of Crumpton Oaks ‘cider’ (for £5!) because it was my one night of freshers’ week free so, naturally, I was going to get wankered. On the way back with my housemate Stu, and my leg started twitching. It did this a lot and it was quite irritating because it meant for about five minutes I couldn’t actually walk at all. My foot dragged like a gorilla’s knuckles and the rest of the leg felt weaker than a One Direction battle royale (cultural reference!). These ‘funny turns’ had been happening for a couple of years so I didn’t think too much of them or the potential link to my condition. Silly Tom. The first time it happened I was in Burger King with best chum Ste and I just found it hilarious. We assumed it was because pre-Burger Kinging, we’d McDonalded and so blood flow to the leg had been stymied by fat and salt and ‘meat’.

Anyway, it subsided and we made it home to get boozin’. Except this time, it happened again. This was unusual and doubly irritating. Normally I’d get a funny turn once a week, at most, but if they were to happen within minutes of each other… Well that just wouldn’t do. Except this time, something else happened. It was the most bizarre sensation, starting in my right foot and travelling up through the leg, down my arm, to my fingertips and to the back right of my next. It was pins and needles without the tingling, a humming numbness. Horrible. The feeling of helplessness, of something invading your body, was nightmareish. My whole right side felt heavy. I tried for a glass of water to calm me down but at first I couldn’t grip the glass in my right hand (then I realised I could turn the tap on with my left and then fill the glass – Silly Tom again). I paced the room hopelessly. It was the most distressing experience of my life. A total lack of control. What could I do except wait, wish for things to return to normal? My own body had betrayed me. I was angry, pathetic because what was there to be angry at? I didn’t even know what was wrong with me. But I was terrified. I had never really been scared for myself before. My Dad nearly died when I was sixteen because of some horrific brain virus thing and that was an awful time. But I had never been scared for myself. It was selfish. I was still alive. I hadn’t even passed out. I had been nervous about exam results and I almost got into a fight once. I’d even cried on a rollercoaster (I was about 9) but I’d never properly been scared for myself. And that was the worst thing.

If you’ve seen The Matrix (joint best film ever with The Emperor’s New Groove) and remember the scene where Neo touches a mirror which then becomes a glassy body invader, unstoppable and, according to poor Neo, “cold,” then you’ve seen the only thing I’ve ever thought relates to what I feel when a seizure (spoiler alert!) strikes. Though I doubt the Wachowski brothers had epilepsy and/or brain tumours in mind when making The Matrix.

It was not a fun twenty minutes but eventually things calmed down, though there was a lingering weakness and a fucking huge headache. For the first time ever there was also depression. Embarrassment. Violation. It was all a bit shit really. Motivation to actually get a doctors’ appointment, as well. I decided not to go out and get wankered, much to the chagrin of everyone else. Sometimes, it’s nice to feel wanted… But the Crumpton Oaks would have to be resisted for that little bit longer.

The doctor I went to see was a wonderful man with a Polish-sounding name that I’m not even going to attempt to spell. But it began with J, so, Dr J. He actually listened and seemed to take a genuine concern. When I told him that I couldn’t play football any more (I didn’t recite my whole footballing history, unfortunately for Dr J.) he leapt into action and did all manner of reflex and strength and mobility tests on my leg. The consensus was that things were not as they should be, though he didn’t know why. Neither did I. A double appointment was arranged for the following week and, whilst not particularly reassured, I felt as if it was not just me trying to push this big boulder of worry any more.

After more doctorly jiggery-pokery during the second appointment, Dr J was none-the-wiser, and neither was I. My right leg had atrophied pretty severely but why? Blood tests hadn’t shown anything. Dr J decided the best course of action was a spine and head MRI. Neither of these things particularly appealed to me but if I had to choose I’d probably go for spinal. But that’d be like saying Cesar is my favourite type of cat food. I don’t like cat food. And I never will.

In the interim I struggled on with missing lectures and not doing a lot of work for uni. I also had a seizure at The Viper Rooms during a day shift. As luck would have it, my phone had run out of battery, and Dr J suggested I go to hospital if I suffer another one of these ‘funny turns’. As proper luck would have it, I knew housemate and Southerner and Tory but generally nice guy Marcus’ number off by heart (a long and ridiculous story involving the leeches at Three and various unpaid but uncontracted phonebills – I did not memorise his phone number for romantic intentions) so I gave him a tinkle (!) and we taxi’d to The Royal Hallamshire hospital (a place I and many others would become too familiar with). They said we had to go to The Northern General hospital because they don’t have an A&E department. It’s only across the entire city. Wonderful. No really, we enjoy paying extortionate taxi prices. We’re not bitter at all.

Bah. So we intrepid explorers made it to The Northern General hospital, a sprawling beast of a campus. I read somewhere that it is actually bigger than the Vatican though I may have made that up. By this stage I was limping severely and the headaches were a pretty constant lodger in my head. I had been prescribed some naproxen by Dr J but they didn’t really seem to work but at the end of the day a headache is only a headache. A&E was naturally packed and we sardined ourselves into some seats. The triage nurse saw me and didn’t seem overly worried and then the Doctor did some tests which involved me bending and dipping my arms like a humanoid chicken, though no clucking was involved. Apparently I wasn’t having a stroke so I chalked that up as a victory. And, even better, as I had an MRI already in the pipeline (a month away) there was nothing they could do so, on yer bike. Honestly I just enjoyed trips to A&E and didn’t really need a tangible outcome.

The only problem with that was while I was actually doing some English Literature work (!) comparing Private Lives by Noel Coward and The Tragedy of Hamlet, Prince of Denmark by William Shakespeare, I got a phone call saying my MRI had been delayed until the end of November. We were mid-October now. This was less than ideal. And I never found out why it got postponed, suspended or whatever. It just did. Thinking about it more and more, this was really fucking irritating. I love the NHS and it’s done more than reet by me but fucking hell sometimes the cogs turn slowly and sometimes they don’t turn at all.

Chin up though. Between writing some pretty substandard essays (which I can now blame on having a brain tumour) I managed to hitchhike to Glasgow from Sheffield dressed as a lion with aforementioned toff Marcus (dressed as an elephant) and not aforementioned East Anglian Jess (who ‘forgot to bring her fancy dress from Norfolk’, indeed). This was, of course, for charity and I type this as I adjust my halo but in some scary foreshadowing/completely none-scary coincidence we raised money through Sheffied RAG for Neurocare, a wonderful Sheffield-based charity which provided so much of the stuff that was used to treat me and keep me sane. We also got a lovely fluorescent green and purple scarf which totally clashed with my lion onesie but is now draped proudly over my wardrobe.

Hitchhiking is a pretty great thing to do though. Nothing quite inspires such a mix of fear and wonderment as a gruff Glaswegian endorsing the listening to of Adele whilst high and rattling through narrow Scottish country roads at upwards of one hundred mph in a car held together by will alone. I am not sure how we didn’t die but his rapidity meant we were one of the first teams there and I do know that was excuse enough to go out and get wankered and do some roly polys on a very dirty dancefloor. And it wasn’t dirty because they were ‘dropping some dirty dubstep’, the club was just genuinely filthy.

Enough of the hitchhiking digression (do it!) the MRI appointment finally crawled into view and this time didn’t crawl away again. So my wondrous mum and I made our way to the Northern General Hospital all hyped and ready to go for the claustrophobia of lying in an MRI scanner for an hour or so only to find out this was a consultancy to find out whether I actually really truly madly deeply needed the scan for fuck’s sake. A chap, or rather a Professor, called Professor Venables checked a few things – apparently I had ‘frisky’ reflexes (was he coming on to me? To this day I am not sure) – and then made my right foot shake rather severely by jamming it upwards until it couldn’t be jammed no more. For some reason I found this hilarious but I grew to hate it. The Professor confirmed that I should indeed have the scan. Hurrah. Huh. Rah.

Apparently MRI appointments such as mine can take up to six weeks to arrange. It was now late November so I’d be lucky to get scanned by the end of the year. Insert expletive here. Nothing much happened for the next few weeks except work, essays, cocktails, boozing and leg deterioration. My first MRI came and was honestly not as bad as I thought. It was loud but I’m not claustrophobic and I am good at sleeping so lying in a tube for forty minutes wasn’t that bad. The machine juddered and slammed and beeped and made a veritable cacophony of noise which was partially drowned out by some really uncomfortable headphones. Plus, if I concentrated hard enough I could make a rhythm out of the judders and beeps and anyway sometimes it sounded like the blast doors off the Pillar of Autumn on the first level of Halo: Combat Evolved. But to make me sound less of a massive nerd forget the last clause of the previous sentence, please.

Anyway, a few days later I got a call and had to go in for another scan because this time they wanted to inject me with ‘contrast’. Injections… not down with that sort of thing. Not down with that at all. But, it had to be done. I only wet myself a little and had a minor panic attack. The scan this time was much shorter and I was assured I’d get the results within the week. This would edge us just past Christmas. The contrast tasted like what I’d assume radioactive death tastes like and my God it made me feel as if I was going to vomit (or chunder depending on the size of your bank account) all over this machine which was probably worth more than I’d ever earn in a lifetime. Not that I’d want to buy my own personal MRI scanner. I may buy one for others though. Excuse me, my halo needs cleaning…

Christmas Dinner Day was crap for one reason and another. My brother was now teaching in Korea (South, not North, though he does have Communist tendencies so I’m sure would be accepted across the border) so it was a little odd having an empty space at the Christmas Dinner Day table. But we did get very drunk at Fagins on CDD eve which is always a treat. Plus I think grumpy insurance claims person (absolutely no clue what he does despite being told thousands of times) and best chum Tolley didn’t almost break his ankle which was nice for him. HBOS bank man and long term best chum Smithy probably threw up but that’s the way it goes. Yes I am just introducing a few of my friends to make me seem popular. No I don’t care but I hope you still like me.

On the 27th of December I was called to the Royal Hallamshire to get the results of the scan. That night I’d had another seizure so I was feeling pretty shite and grumpy. Grumpy Tom is possibly the most horrific human being in the world. I apologise to anyone who has had to encounter, and worse, communicate with Grumpy Tom. I am pretty much as fun to be around as JFK on November 22nd, 1963. Anyway, Grumpy Tom (for it is I) went to get the scan results from the veritable Professor Venables. I went in alone despite my mum being there because I figured I could probably deal with anything on my own and if it was really bad news I could always lie.

Professor Venables told me I had a rather large cyst on my brain. This sounded gross. A fluid-filled sack on my brain. It doesn’t just sound gross, it is gross. He showed me a top down scan of my brain and that was a surreal, breakthrough moment. He also helpfully pointed out that the huge white thing taking up what seemed to me to be the entire left side of my brain was the offending cyst. It looked huge. It was huge. I mean, I don’t really have a precedent as this was the only brain cyst I’d ever seen so it could have been a really small one but I’d hate to have one bigger. Professor Venables told me that I’d be having a very simple operation in January by a Mr Jellinek (that’s jelly-neck – I know) who was, he assured me, a wonderful surgeon though slightly on the mad side of genius. And, for reasons unbeknown to me, Professor Venables told me he was short. OK thanks so much for that vital piece of information. Hearing that was almost as bizarre as seeing an image of the thing that makes everything else in your body not just a useless mass of cells and muscles and junk but an actual (partially) working man. Strange, very strange.

I relayed this information to mum who asked me how I felt. I was fine though I wondered whether they’d have to shave off my beautiful bouffant (I don’t have a bouffant in the technical sense of the word but it is a great sounding thing). As far as Professor Venables was concerned, the operation was on the dull/easy side of brain surgery. They’d stick a tube into my head and subsequently into the cyst and aspirate away. I’m sure any old moron could do it. Beginner’s brain surgery. Brain surgery 101. My First Brain Surgery. Tom K. Stoker and The Big Brain Cyst and The Very Simple Surgery. A whole untapped resource of children’s literature, complete with pop-up MRI scans and fabric that feels like real brain (note all ideas are potentially patent pending and copyright and intellectual property of me etc etc).

In a strange but understandable if I explain it properly sort of way, I felt relieved. Being told I had to go through brain surgery was a daunting thing to hear, but really it didn’t sound like anything to be too worried over. Plus, it was nice to think that I may eventually be able to kick a football again. This was, obviously, my main concern, and that of my team mates. Probably not my mum’s most pressing issue or, indeed, that of any of my family members but truth be told they didn’t really ‘get’ how good I was and how important I was to the team. All they’d heard was what I’d told them which they probably and foolishly interpreted as hyperbole/lies. The (now lost) statistics spoke for themselves!

I really must stop trying to defend my achievements otherwise I fear I’ll end up sowing seeds of doubt. Sigh. New Years’ Eve came and went and was very dull. Did not get remotely drunk enough and spent it with Tolley and some old friends from secondary school who I always get internally annoyed at because they call me posh (I am definitely not); apparently my accent has changed since going to University in South Yorkshire. Compare this to having to repeat things to my more Southerly-inclined friends and you can see the frustrating accent limbo I found myself in. Digressive and utterly pointless rant over.

So 2012 was the year the world was supposed to end one way or another and it started with a hangover not nearly severe enough. I certainly did not feel as if the apocalypse was coming though my breath smelt reassuringly of curry. There was nothing much to do back in Halifax so I bounced back over to Sheffield. Getting people drunk at The Viper Rooms was just too tempting to turn down and on the 2nd I had a date/apology/apolo-date (not moon-related) with the wonderful and now girlfriend of mine Laura. Spoiler alert but she is the definition of suffering girlfriend; I withhold the ‘long’ part because at time of writing we are only two days away from our one year anniversary and while I can only anticipate and look forward to more glorious time with this beautiful person I have no fucking clue how she has put up with me for so long and through so many incredibly shite things. My family are wonderful, wonderful (if slightly mad in their own way) people and for them to go through all these terrible things too, well, it’s a wonder I wasn’t put up for belated adoption. Maybe I am as great as I think I am though I don’t think so.

The dapology went swimmingly, of course, and a few days later I was back at the Royal Hallamshire Hospital with mum in tow to meet the man who’d be, in effect, entering my brain. Except we didn’t; we waited around in the eponymous room for millennia to be told that the man with the brilliant name Mr Jellinek was actually on holiday so wouldn’t be in today but we’d still get to meet a surgeon who would talk us through the operation though wouldn’t be doing it himself. A nice compromise, I suppose… We were called through and taken to a cold room with the chubby-faced but very nice consultant whose name escapes me and who I have not seen since and a nurse called Karen who is absolutely lovely.

It probably isn’t a very easy job to tell someone that they have a brain tumour but the surgeon did it in a very calm and systematic manner which was good but I am afraid I can’t remember a lot of what he said. He talked me through the cyst part and how this was probably the cause of the bad leg and the funny turns. Then he said there was also a ‘small nodule’ or a ‘tumour’ on the scan. I kind of took this in with a nod of the head and didn’t really know what to feel. I remember him telling me that my symptoms suggested the tumour was growing slowly so I should be reassured by this. Then my thoughts started screaming ‘you’re going to die’, ‘you have a brain tumour’, ‘your life is over’, ‘there is no escape’. I couldn’t hear anything of what anyone was saying. Then I just absolutely broke and started sobbing. Covered my face with my hands and started sobbing. I just felt really stupid. All coherent thought was being set on fire. All I could do was cry like a baby. I don’t know what happened or what was said for about ten minutes, all there is left in my memories is a big blurry teary hole. Eight thousand five hundred people are diagnosed with a brain tumour every year in Britain. That’s just over twenty three a day. I hope they took the news better than me otherwise twenty three people are going to be left with a black hole of memory every day.

Tom would like to encourage readers to donate to Neurocare, a charity which raises money to buy life saving equipment for use in the Neuro theatres of Sheffield's Royal Hallamshire Hospital. neurocare.org.uk

Tom Stoker