The day everything changed – Guest post by Cameron Walker.

Why tell my story?

“I’ve debated whether or not to share the story of my life over the last couple of years on numerous occasions, and always decided against saying a word about it. I didn’t want to be treated differently or singled out in any way by my condition. I just wanted to continue as Cameron, like nothing had ever happened.

But with hindsight, I’ve realised that I can’t suppress this information, like a dirty little secret, and pretend that everything can go on as it had before.  It’s taken me this long, but I can now accept that everything changed on Monday the 21st of February 2022. I was 24. 

First day of a new job, first seizure

On the first day of my new job as an Operational Excellence Engineer at HelloFresh, a job which I’d relocated across the country for, I suffered a tonic-clonic seizure for the first time in my life.  

While being given a tour of the factory shop floor at around 11:30am, I suddenly lost consciousness and fell to the floor, hitting my head on a metal platform on the way down.  

I vaguely remember panicked voices and being wheeled away to the first aid room. Paramedics rushed me to the local hospital, where they performed a scan of my head to check that the impact hadn’t caused any internal bleeding. 

That was when they found a ‘lesion’ in a totally different part of my brain to where I’d hit my head. I was put on anticonvulsant medication, told I could no longer drive and stayed in a ward that whole first week. 

No symptoms

Several MRI scans later, it was near enough confirmed that I had a low grade glioma brain tumour, towards the back of my left frontal lobe, embedded in the motor strip. Some doctors reassured me, others told me I would undoubtedly have a reduced life expectancy, and Google told me even worse. Every step I now took was laden with the fear of having another seizure or experiencing some other grisly symptom that had yet to reveal itself. The anticonvulsant pills I take twice daily were my only protection, and they continue to be. It’s likely that I’ll take them for the rest of my life. 

How could this have happened to me? I’m active, I eat well, I have no cognitive impairment. I couldn’t understand how I’d never experienced any symptoms whatsoever, yet this abnormal cluster of cells had been slowly growing for years in my brain, perhaps from birth, or perhaps from adolescence. I’ll never know for certain.  

Cameron

Surgery and diagnosis

The neurologists suggested ‘debulking’ surgery, where they would attempt to remove as much of the tumour as possible. The only issue was that the tumour was in a very sensitive and important part of my brain. The left-side motor strip controls all voluntary movement down the entire right side of the body, and I’m right-side dominant. The safest option was to operate while I was awake. 

Somehow, I was courageous enough to go through with an awake craniotomy, which is where an anaesthetist sedates you to the point where you’re awake enough to follow commands, but still in a stupor. I remember lifting my right arm up and down, after being encouraged by nurses. Then I was asked to lift my right leg, but I couldn’t. It didn’t make sense. Then I had the second seizure of my lifetime – on an operating table with my brain exposed.  

The upshot was learning that essentially my body is using the brain tumour for movement on the right side of my body (which is even more bizarre and raises further questions I’ll probably never answer). Therefore, the surgeons decided to leave it in place, so as not to paralyse me. They took samples which were sent to a laboratory for formal diagnosis. The results confirmed my tumour to be a Grade 2 astrocytoma. 

Treatment

The next few days in hospital consisted of headaches, vomiting, morphine, another seizure, and a big C-shaped scar on the top of my head that was hard not to touch. Due to the tumour being inoperable, I then had to undertake ‘adjuvant’ treatment which does not aim to cure the disease, but instead stabilise things. I was discharged and went to recover at my mum’s house in North Wales before I started radiotherapy.  For this, I had a bespoke mask made from some kind of special plastic that they stretch over your head. This is so that the radioactive beam hits the same target each time.  

My mum drove me three hours each day to the nearest cancer centre and back, in order to have the treatment. Start to finish, the treatment took six working weeks. So that’s 30 near-consecutive days of being lasered in the head, and 30 days of driving for my poor mum. 3600 miles driven in a month.

Cameron

After two or so weeks, my hair started to fall out in clumps until I was left bald. Christmas 2022 came and went, and then it was (PCV) chemotherapy time. Six cycles of six weeks. The oncologist described it to me as ‘the icing on the cake’. It was anything but! I spent the whole of 2023 battling with the chemo, and it’s safe to say I lost. All I wanted was to rewind time and continue my life pre-brain tumour. Begin my new job – properly this time. Move into my own flat.

Desperate to be ‘normal’

I fought tooth and nail to be ‘normal’ that year. I’d wake in the night to vomit. The toxicity of the chemo would burn my veins as they administered it. On several occasions, I had to cut the cycle short by a couple of days because hives were erupting all over my skin in a huge allergic reaction to the chemo.  

So, desperate to crack on as normal, I’d travel on three trains across the England-Wales border just to be in my new flat and cycle to work, where I’d do full days, all by choice. For whatever reason, my immune system refused to bounce back over the six weeks between cycles. This meant it was too dangerous to administer the treatment. And so, with my neutrophils crushed, I’d simply ride three trains back and inform work that I’d be in next week.

I genuinely didn’t think I’d get the full six cycles under my belt, but I did. I rang the bell. It was over. But it wasn’t. The tumour was still there, and ever since that fateful February day, there had always been another battle to fight. 

All of a sudden there wasn’t, and it felt…odd. I felt like what I imagine a soldier feels like when they return to ‘civvy street’ after operating in a warzone.

Cameron

I attended a post-cancer treatment workshop to tackle this strange feeling, but eventually just shrugged my shoulders and returned to full-time work. Treatment finally complete, the plan is now for me to have an MRI scan every six months in a ‘watch and wait’ strategy. When that first scan came around, stress and anxiety engulfed me. ‘Scanxiety’ it’s called.

To me, it felt like the return to normality was under threat. What if the scan revealed that the tumour had grown, or transformed into a more aggressive form? I’d have to go back to the start and have new terrifying things done to me. Every six months I’ll have to go through this excruciating process of having a brain scan, followed by a verdict, probably for as long as I live.  

Ringing the bell

It then dawned on me, quite painfully, that ringing that chemotherapy bell didn’t mean that all I have gone through can be pushed away and left behind in the past. This thing looms too large to be dismissed. I bear deep scars, both physical and emotional, as a result of everything that has taken place since February 2022. I’ve realised that it’s not a simple case of biting down on my gumshield and getting through 12 rounds with a phantom foe, and then being at peace. I wouldn’t expect that of anyone else, and yet that is what I expected of myself.  Things are not as they were before, even though people can’t see the burden I have borne as I walk by them in the street, or in the corridors at work. 

Throughout everything, the Brain Tumour Charity’s Young Adults helpline has been a saving grace. I’ve gone to them on so many occasions to ask questions and try to calm myself down, and they seem to get it like nobody else does because brain tumours are so niche. I invariably feel better after talking to them on the phone.  

Cameron

I was also lucky enough to attend the 2023 Summer Masquerade Ball, which happened to fall between my chemotherapy cycles. It was a great event held at Chatsworth House where I got to meet many people in similar positions to myself, which was so valuable to me because the feeling of isolation can be strong sometimes. 

I’ve learned that I can’t leave the brain tumour behind, and I’ve always known that I can’t let it dominate me. What lies in the middle of those two things is coexistence. Acknowledgment. Acceptance.  

The peculiarity of my situation in the sense that the tumour is involved in my right-side mobility, means that it helps me every day of my life to walk, type, write, run, swim, all of it. It was helping me for many years prior to when it was discovered too. I’ve been unknowingly living with it for a long time. That brings me back to where I started.  

Everything changed for me that day in February, and I must find a way to coexist peacefully with a passenger in my brain that is ultimately a part of who I am, and who I’ve always been.”