How I Found out I Had a Brain Tumour and Why the Real Troubles in Your Life Are Things That Never Crossed Your Worried Mind
The Sunscreen Song by Baz Lurhman is one of my all-time favourites, but I finally really understood the lyrics on that idle Tuesday in December. I’ve had a lot of messages asking how I found out I had a brain tumour and when I think of this journey I often think it started on December 18th 2018, when I first received the news of needing brain surgery, but in actual fact it started when I was fourteen.
It was the early hours of the morning and I was woken by the spinning walls. Gripping the edges of my bed to avoid falling off, I realised the only thing differentiating this sensation to that of the waltzers I came off a few days earlier was the fact that ‘DJ Luck & Mc Neat – I’m Sorry’ wasn’t blasting in my ears. Although, it might as well have been given that the temporary tinnitus was now deafening and the nausea had me wanting to stick my head down the toilet like the cheap Lambrini I drank hand in hand.
What felt like minutes to me was probably only seconds and when the spinning died down, I lay my head back on my pillows and was sweating from the fear. I was confused at what had just happened and what had caused it. It was midweek and had been a few days since I’d been drinking down the park, and even though at fourteen a few swigs of a £2.50 bottle of Lambrini had the power to make me dizzy and drunk, this feeling was different. I decided if it happened again, I would tell someone but until then, it was an unexplained one-time occurrence.
When I was fifteen, I was getting ready to go to a house party and was excited that we had progressed from the park to a house. One minute I was blackening my eyes with eyeshadow and coating my lips in foundation on my bed (a fad that made for some dire photos!) The next I woke up lay by the door unsure of how I had gotten there. When I peeled myself off my wicker basket, that was holding my hair appliances, I noticed it was completely dented and was scared by the knowledge I must have hit my head pretty hard.
Those two occasions were one-offs and were forgotten about until 2013. I was eighteen and that same dizziness I experienced in the night, four years earlier, started happening on a monthly basis. When I became afraid to go to sleep knowing I would soon be woken by it but unaware of when, I went to the doctors. Whilst telling me it was probably nothing serious, I was scheduled for an MRI. Slightly dramatic, I thought, given that what I was describing hardly seemed worthy of an MRI, but I went anyway and by extreme luck they found a brain tumour.
This is what I knew: the tumour was benign, it had probably been there since birth, it wasn’t a nasty or cancerous tumour and for the longest time they didn’t even call it one, referring to it as a “leision in the fourth ventricle.” Due to its position I was told it most likely had no relation to my dizziness. But regardless of what it was, it was there, and it shouldn’t have been and now they had found it, they couldn’t ignore it so I quickly realised I needed to get used to the MRIs that I hated because they would become yearly events.
I was told I might need surgery one day if it grew, but that it would probably never come to that and so whilst I remember being petrified and shocked when I first found out, I mostly never worried or gave thought to it. My mom asked how I got on that day and I told her what I had been told. I didn’t ask her to come to the appointment because I genuinely never expected anything would come of the MRI but now that it had I was bombarded with millions of questions I couldn’t answer. I did a good job of playing it down and telling her not to worry as they were going to monitor it and, along with my sisters and ex-boyfriend, they became the only people I told.
I had two MRI’s in 2014 and both were stable. Then another in 2015, also stable. I began to relax and believe it was a chance thing to be found. I was grateful to be monitored; half felt like a fraud but carried on anyway. I still experienced the monthly dizziness that the doctors couldn’t explain; they put it down to hormones, or food, so I began to note down what I had eaten to see if there was a pattern.
Until I would receive a letter in the post scheduling me for an MRI, I rarely gave much thought to it. But in November 2015, I went out for a friend’s 21st birthday. A group of us took a party bus to a club in Birmingham and were all dancing inside it when I was smacked at full force across the head by a solid clutch bag that was trying to reach somebody else. It was unexpected and incredibly painful, but we were about go inside the club so I didn’t want to cause a scene. There isn’t much I remember after that. Apparently, I was “so drunk” that after sleeping for a while in our booth whilst people danced, I was carried to my friend’s car and helped to my front door.
I don’t remember making it up to my bed and woke up confused, head pounding and dizzy, in a pool of sick. I had one prosecco on the bus and one known cranberry and vodka in the club. But it was by far the drunkest I had ever been, not to remember a single thing. I must have been spiked, I thought. After dragging myself in the shower, I felt a bruise on my head so tender I couldn’t carry on washing my hair. The pain was excruciating.
I realised I’d had concussion from the clutch bag. My then boyfriend came around that night to find me sobbing on my bed. I couldn’t believe how stupid I had been to basically sustain a head injury and attempt to mix it with alcohol. You hear all kinds of stories about people having falls that trigger cancer and all it takes is something to awaken dormant cells. This thought tormented me all day and we spent hours that night in Worcester A&E – maybe dramatic, but I worried that I had caused the tumour to grow and needed an emergency scan to check nothing had happened. The scan was clear.
In 2016, when there was still no change, I was told there would be one more MRI in 2018 and to discharge at that point if the scans continued to show no growth. I remember a niggling feeling of not ever wanting to be out the system, but the doctors didn’t seem worried and so apart from that one night in 2015, I wasn’t either. I did some pretty dramatic things in those two years like leaving a relationship of six years, travelling to Bali alone, quitting a job after a day, having a career change and moving to a brand-new city without knowing a soul. Looking back now, either I became incredibly reckless in that time or I subconsciously lived knowing I had a brain tumour. Whatever it was causing me to constantly seek out change, I had some unthinkable experiences as a result and I’m grateful I made them.
But, as genuine luck would have it, that “final” scan in 2018 showed the tumour had almost doubled in volume and was now dangerously close to blocking the CSF fluid that controls everything we do. It didn’t have much more room to grow before making me really poorly and the best solution would be to biopsy the tumour to assess the true grade and remove as much as possible.
The scan had been in October, in Birmingham, but taking two days off work and travelling back from London for a 10-minute appointment on a Tuesday, just to be discharged, seemed like a faff. I kept putting it off for weeks until Friday 14th December when the secretary called me after our usual back and forth and told me that, despite my requests of emailing or putting the results in the post, there had been a change and the surgeon wanted to see me in person.
That weekend was the longest of my life and I didn’t know how I would make it to Tuesday with the anticipation eating away at me. I knew it was bad news but I also couldn’t handle the worrying so I kept it quiet. After calling my mom to ask if she would drive me there on the Tuesday, I did the only thing I could in that moment which was to looked forward to a rare Monday night at home. On the Tuesday morning, whilst getting ready for the hospital, my mom gave me a sapphire diamond ring that she “wouldn’t wear anyway” and I remember thinking how much sentimental value that ring was about to have. The rest of that day was long, with lots of information and tears, promises to keep it quiet and a trip on the slow train back to London, crying every time I thought about it, which was every second.
At the time it felt like everything stopped whilst I had the surgery to contend with. My previous worries completely faded and were no longer worries at all. I couldn’t see past it and had no idea of the journey I was about to embark on. And amazingly, it was almost a year since I found out. Although recovering is far harder that preparing for surgery, I’m almost four months in. I couldn’t see as far as having the surgery, let alone the recovery phase. It seemed so far away and even weeks into the future seemed unimaginable.
The doctors never diagnosed my dizziness; I was told it was vertigo and leading up to my surgery had various assessments and manoeuvres, but none of them worked. On the Monday before my surgery I had my usual attack in the night and I believe that’s the reason I constantly experience motion sickness, moving walls and flickering eyes now. Although the doctors said my tumour probably wasn’t related to the dizziness, I do genuinely think it was the result of those attacks and although it won’t be until I’m fully recovered that I’ll be able to distinguish the difference, I – touchwood – haven’t had one since.