Scott, aged 31, is a health-conscious weightlifter, cycler, footballer and rock climber who led a fit and active lifestyle. But on 19th August 2019, while on his way to work, his life changed forever when he suffered a seizure and was rushed to Neville Hall hospital in Abergavenny. Four days later Scott woke up in hospital surrounded by doctors and family members after being induced into a coma, where he was given the devastating news that he had been diagnosed with a brain tumour.
Five years on, Scott is now undergoing his third round of treatment for brain cancer. His journey has been long and gruelling, but his determination to raise awareness and inspire others has become his motivation to beat brain cancer.
Scott tells his story…
Looking back, I now realise there were signs: headaches, nosebleeds, things I chalked up to long work hours, heavy training at the gym, and maybe not drinking enough water. I even went to the opticians, but nothing was picked up. My grandfather had a benign brain tumour, but doctors told us it wasn’t hereditary, so it was never really on my radar.
Then out of the blue, on the morning of my sister’s 16th birthday on 19th August 2019, I had a seizure on my commute to work. I don’t remember a thing. I was rushed to Nevill Hall Hospital in Abergavenny and had to be resuscitated in the ambulance.
They weren't sure if they if they could stabilise me, so my parents were called because they didn't expect me to survive.
When my parents arrived at the hospital they were taken to the family room and told by the consultant that due to 45 minutes of continuous seizures, I had to be put in an induced coma. The seizures also caused complications with my heart, so I was placed in intensive care.
My mum said that it was horrendous. They thought I was going to die – that was the message they were getting. I was hooked up to so many machines and there was a red light above my door with doctors and nurses going back and forth like something you see on television.
Doctors had run multiple tests while I was in the coma and found a shadow on my brain. It was a grade 2 astrocytoma. Early indicators suggested a grade three or four, so medical staff were surprised that results came back as a grade two.
When the doctors told my parents that I had a mass on my brain my mum said that it was a nightmare, and she remembers my stepdad sliding down the wall.
Four days passed. On 24th August, just one day before my 25th birthday, I woke up. I had no memory of anything since leaving the house for work.
I had four days completely missing. I remember setting off for work and then waking up in the hospital with doctors and nurses over my bed. It was frightening, I was shocked and scared and didn't know what was going. Trying to make sense of what the doctors and my parents were saying was confusing. Now that I was stable and out of immediate danger, I was moved to the cardiac unit.
The consultant and my parents explained to me the full extent of what happened. It was very difficult waking up and facing the realisation that I had almost died.
By the Friday I was taken to University Hospital of Wales, The Heath, where my parents and I met with the neurosurgeon and the oncology team. The consultant explained that due to the tumour's diffused nature, only part of it could be safely removed. My mum asked if it would be life-limiting. The surgeon hesitated. I told him I wanted the truth.
That’s when he said that I had an expectancy of three to five years to live but that with treatment and the right mindset, I could live longer than expected. My stepdad broke down. I walked out of the room, stunned. The surgeon followed me and said: “People who give in to it go quicker. You need to stay positive.” That stuck with me.
Doctors told me there were risks to the surgery, possible brain and nerve damage. My options were to be overcome by the disease or put my faith in the hands of the surgeons. I chose surgery.
After that meeting, I looked around the hospital and saw young children living through worse. I had been lucky enough to have 24 years of life with great experiences; these children had only known hospital wards all their life and may never get to have the experiences I have had. It gave me perspective. I knew I had to fight, so I posted on Facebook, asking people not to buy me birthday cards but to donate to charity instead. I raised nearly £2,000. It made me realise I had two options: accept the diagnosis or fight back and make a difference. I chose to fight back.
On 4th September, I underwent debulking surgery at University Hospital of Wales, The Heath. I was terrified, but I woke up a couple of hours later, cracked a joke, and asked for a cup of tea. It was a relief to know my brain function was intact.
Recovery was tough. I developed meningitis and had to be readmitted. Then came seven weeks of radiotherapy, a short break, and 12 cycles of chemotherapy. Treatment was indescribable. I was overflowing with sickness, my sleep was disturbed, I was fatigued, had headaches, fever and was feeling confused. There were times when it was easier to pull out a pillow and sleep on the bathroom floor. It was just awful.
Altogether, I spent 16 months in treatment. I developed left-side weakness, at one point I was so weak, I couldn’t even lift my own arm if I was wearing a watch. Doctors warned me I might have permanent nerve damage.
The physical toll was enormous. But what really hit me was the change in appearance.
As someone who had spent 15 years in multiple sports, losing my hair and gaining weight from the steroids was devastating. Watching my hair fall out in the shower was especially traumatic. I felt like I’d lost all control.
Then the COVID-19 pandemic hit. Ironically, it became a blessing in disguise. My mum had more time to support me, and socially distanced garden visits with friends and family helped keep me going.
This disease didn’t just change me; it changed everything for my family. My mum, Fiona, gave up her job as a head teacher to become my full-time carer and I had to move back home. My younger sister struggled emotionally, seeing the toll the treatment was taking on me.
I know it has been a huge strain particularly on mum. It was constant, medication, appointments, side effects, hospital visits. I was dependant on mum for everything.
Losing my driving licence and having to sell my car felt like losing my independence. I couldn’t visit friends, and the risk of infection meant limited visitors. I felt incredibly isolated.
In 2021 when my treatment finished, I rang the bell. While I was going through my treatment, my mum searched for and found suitable house for me. It gave me my independence and life back. I regained my licence, and we celebrated. I felt alive again.
I lost the treatment weight, started light weightlifting again, and got a dog, Kobe, who has been an amazing companion. I now appreciate the little things so much more.
I had nearly two great years before things changed again. Towards the end of 2023, I noticed mood swings, brain fog, and confusion. I thought it was depression. But at my routine scan, we discovered tumour activity. I was shocked and devastated; I thought I would have more time. I was given the option to wait or go ahead with another round of chemotherapy. I didn’t want to wait. I started a second round of treatment 20 months’ worth of chemotherapy condensed into 10. I was mentally prepared this time, but it was still brutal.
When I finished treatment, I rang the bell for a second time. Having got my driving licence back, I rewarded myself with a new car and celebrated the tumour being stable with my mum and sisters.
But just four months later, I started getting strange pressure in my neck and jaw. Seizures returned – I had five or six a day. My medication had to be adjusted. I lost my licence again. It was heartbreaking. I went back to University Hospital of Wales, The Heath for another brain scan.
I was told the tumour was back. The news hit me hard. The seizures ranged from violent tonic-clonic episodes to now smaller facial twitches that leave me frozen in fear, not knowing when the next will hit.
I developed a needle phobia from so many injections and told my mum I couldn’t do it anymore. But then I reminded myself: I’ve done this before, and I can do it again.
Now, in my third round of treatment, I take it one month at a time. Fatigue is relentless. Most days I can’t leave the house. But I’m still here, and that’s something I’m grateful for.
I’ve chosen to share my journey to give others strength. If I can face this a third time, then maybe someone else out there can too. I believe I was given this challenge to help others understand what it’s really like, not just for the patient, but for the whole family.
The brain cancer community has been a lifeline, so full of support and love. I’m now working with Brain Tumour Research to raise awareness; I still find it hard to fathom that brain tumours kill more children and adults under 40 than any other cancer in the UK and yet receive just 1% of the national cancer research funding.
My mum and aunt Lyndsey is taking part in the 200k a Day in May challenge to raise money for Brain Tumour Research. I hope people realise how urgently we need more funding, so others don’t have to go through what we’ve been through.
Meanwhile I have been sharing my story on social media to raise awareness. You can follow my story on TikTok: https://www.tiktok.com/@scottsstory
This disease picked me, but it picked the wrong person this time round.
Scott Hinch
May 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Scott’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
