When they removed the tumour from my brain, they said it was like a large orange. It had been there – undiscovered, silently spreading, growing – for 10 years or more.
A tumour can’t grow past the bone of the skull so it moves inwards instead. It had woven itself in and around the tissues of the brain. If you want to picture its strands, spaghetti’s not a bad reference. It was wrapping around and squeezing everything in its way.
Both my auditory system and optic nerves were being crushed and the sheer pressure was destroying them. The canals that transport essential cerebrospinal fluid around the brain had been squashed. The fluid was building up and in danger of seeping into other parts of the organ.
At one point, after the discovery, a doctor had spun me around and then told me to walk in a straight line. I couldn’t. I angled off to the right. ‘That’s the tumour,’ he said. ‘It’s wrecking your balance too.’
He made it clear how serious it was. ‘You’re lucky to be alive. We need to operate straightaway.’
If they didn’t, he’d added, I could literally drop dead any second. Given how large the growth had gotten – the neurosurgeon classified it as a giant tumour – it was only good fortune that I hadn’t done so already.
Yet, here I was, an apparently fit and healthy 25-year-old. I had not been ill for maybe five years, nor had there been any definitive symptoms to indicate what was taking place within the confines of my skull. But for the eagle eyes of a chemist shop optician during a routine eye test, I may never have known that a silent killer was growing in my own head…
It was a beautiful Saturday afternoon when my world was thrown upside down. I was living in Sheffield in the UK, working as a journalist on the local newspaper – a job I’d dreamed of doing since I was young – and had a group of friends I loved.
That day I was meeting some of them for drinks in the sun. Before that I had a nail appointment. It was an afternoon I’d been looking forward to all week.
I’d worn glasses for short-sightedness since I was 21 and I would have a routine eye test every couple of years to ensure I was still on the right prescription. Because my optician at Boots sat near the nail lounge, I’d decided I’d get checked the same afternoon.
During the check-up, the duty optician, Samantha Ahmed, told me she was getting a colleague to have a second look at my eye, my first feeling was impatience. It sounds so trivial now but I didn’t want to be late for my next appointment.
I had already gone through the usual procedures. I’d read out the letters on a Snellen chart; been checked for high pressure build-up; and looked into the light of an ophthalmoscope.
But just at the point I was expecting to be told if I needed different glasses or not, Samantha said she wanted to get another opinion on something.
I never had an inkling it might be serious. I probably just asked how long it would take.
About five minutes was all it took to change my life forever, and save it.
The second optician came in and examined me using the ophthalmoscope. He nodded at Samantha.
‘Ellen, there’s something pressing on the inside of your eye,’ she said gently.
‘We’re not entirely sure what it is. But it’s possible there might be an issue. We’re going to phone the hospital. You need to go there immediately.’
It was so out of the blue, so beyond anything I was expecting, I don’t think I even asked why or even really registered what I was being told. My immediate reaction was to say I couldn’t because I was meeting friends.
That’s when she said: ‘You need to rearrange your appointment. We think you may have a brain tumour.’
It’s not unheard of for opticians to discover brain tumours. There have been other cases. Because the growth can press on the optic nerve, it can produce a slight swelling that shows up during eye tests. but what’s remarkable is that with me, there had been no other definitive symptoms.
Some months earlier I had experienced a rushing sound in my right ear, but when I had spoken to a doctor about it, he’d run some tests and concluded it was a virus, possibly caused by the stress of daily deadlines at work. I had also suffered an especially acute headache, but it had lasted a few hours and then disappeared.
Other than these isolated incidents, each separated by several months, there had been nothing. Which is what I clung to in those few hours after the possibility of a tumour had been raised. If it really was one, I reasoned, I’d have shown other symptoms.
As it turns out, I couldn’t go to the hospital that afternoon. The ophthalmology department there was closed for the day and wouldn’t open until Monday. I was booked in for that morning.
Leaving the optician, the gravity of what I’d been told was sinking in. I ducked into a nearby alley and phoned my mum and started crying. Even through my own reasoning, I was reeling. I was in profound shock. I never made it to the nail salon.
What happened over the next few hours, then the next few days and weeks, is imprinted on my mind forever and also, at times, blurry.
At the Royal Hallamshire Hospital on Monday, I had several eye tests done. None could reasonably explain the swelling, so I was sent to the neurology department.
There, more tests were run. I was given CT and MRI scans, and my reflexes, coordination and memory were examined as well. It all seemed so unnecessarily dramatic. The whole time, I was still waiting for someone to say there’d been a mistake and the swelling could be explained by something innocuous. I wasn’t in denial, but I couldn’t believe something so serious may be wrong with me.
It was the afternoon by the time I was done and set up in a little room with my mum. Not long after a specialist came in. I was still thinking he’d tell me everything was OK.
He didn’t. Instead, he said it was a brain tumour, life-threatening and potentially life-ending. They needed to operate as soon as possible. It was a complex procedure. The risks included facial paralysis, deafness, partial blindness and becoming prone to strokes. There was a 3 per cent chance I might not survive at all. But there was no other option.
‘The tumour will kill you eventually if left,’ he told me. I just collapsed on the floor in tears.
It was a week before they could operate. In that time, there was some good news. After more detailed scans, the doctors told me they were 90 per cent sure it wasn’t cancerous. So as long as they could remove it and as long as it didn’t grow back, I wouldn’t have to undergo further treatment.
Nevertheless, that week I found myself oscillating between positivity – they’ve discovered it and they’re going to remove it, and that’s that – and utter desperation.
On several occasions, I looked around and wondered, ‘Is this the last time I’m in this situation? Is this the last time I’m seeing this friend? Is this the last time I’m eating this food? Is this the last time I’m walking through this park?’
A 3 per cent chance of not pulling through might seem like good odds, but not so much when your life depends on it. Ditto, the 90 per cent chance of not having cancer.
I wondered why the tumour was there but no one knows what causes these things.
The worst bit was being on the surgical trolley on the morning of the operation, waiting to go in. I told my mum how much I loved her. In that hospital, on that trolley, I’d never wanted to be more alive.
Thankfully, the operation was a success. But there were complications. The tumour – an acoustic neuroma – was even more developed than expected, and unwrapping and extracting its tentacles from some of my nerves was more difficult than the doctors had estimated. It was so entwined with some nerves that they couldn’t remove it without damaging them.
A tiny part of the tumour was left in to prevent facial paralysis. They used radiation to blast it away six months later.
The operation took 12 hours in all. The neurosurgeon, Dr Thomas Carroll, shaved my hair, cut open a section of my skull, extracted the tumour bit by painstaking bit and then screwed the skull back in using titanium screws. When you think of him, standing there working on you like that for half an entire day, it’s incredible really. It’s nothing short of a form of genius to be able to do that.
When I first woke up in intensive care, I was still pumped up on so many drugs I wasn’t quite sure what was going on. I knew I’d survived and that was all that mattered. Even better, the tumour was non-cancerous. But, even so, that first night my heartbeat rocketed and my lips went numb, and a nurse stayed with me, holding my hand.
I stayed in hospital for five days, and then had another five weeks off work. There was one major side effect that was revealed when I put in my headphones some days later. I couldn’t hear in my right ear. I was completely deaf in it. The doctors had told me, but I’d been too woozy to remember.
I shrug about it, though as I’m still deaf in that ear. It seems a small price to pay for my life. By contrast, my eyesight is now better. I’m still short-sighted but not as much as before the surgery.
Three years on, I have to go to the doctor once a year for a regular check-up, no more.
There’s a saying that everyone should have a brush with death to truly appreciate life, and that’s certainly how it worked for me. Little things stopped bothering me because I was so glad to be here. It was like taking off the sunglasses and suddenly seeing the world in brighter colours.
I took a three-month sabbatical from work and went travelling around Asia. Not long after that, I met my fiancé. The brain tumour was a pretty good first date story! To have been diagnosed during a routine eye test seemed like a miracle to me.
In fact, I went back to the optician not long after I’d been discharged. I took Samantha a huge bunch of flowers. I’ll never be able to express how grateful I am to her.
Ellen Beardmore, 28, lives in Sheffield, UK.