Mum on a mission to walk 200k in May to save lives after son's brain cancer diagnosis
A Welsh mum whose son was diagnosed with brain cancer is walking 200 kilometres in May to raise funds for vital research into the disease that has taken over his life.
Fiona Lott, 51 and her sister Lyndsey Agnew, 46 from Abergavenny, is participating in the 200k in May Your Way challenge for Brain Tumour Research, a cause that’s become deeply personal.
Fiona’s son, Scott Hinch, 29, a health-conscious weightlifter and mountain climber, led a fit and active lifestyle. But on 19 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, on 24 August, Scott woke up surrounded by doctors and family members after being induced into a coma. Fiona was told the devastating news that Scott had been diagnosed with a grade 2 astrocytoma.
Fiona said: “It was horrendous. I thought he was going to die. That was the message we were getting. He was hooked up to so many machines, there was a red light above his door. Doctors and nurses were going in and out like a scene from a medical drama.”
Scott was shocked to wake up the day before his 25th birthday and find himself in hospital.
He said: “I had no memory of anything since leaving the house. 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.”
The consultant at the University Hospital of Wales in Cardiff explained to Scott and his family that due to the tumour's diffused nature, only part of it could be safely removed.
Fiona said: “I asked if it would be life-limiting. The surgeon hesitated. Then Scott told him he wanted the truth. That’s when he said it, Scott's life expectancy was three to five years, but that with treatment and the right mindset, Scott could live longer than expected. My husband broke down and Scott walked out of the room. I was stunned.”
On 4 September, Scott underwent debulking surgery at University Hospital of Wales in Cardiff. He said: “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.”
Scott went through his first round of therapy, seven weeks of radiotherapy and 12 cycles of chemotherapy, adding up to 16 months of gruelling treatment. Scott then had two years before things changed again.
Towards the end of 2023, he noticed mood swings, brain fog, and confusion. But a routine scan revealed the worst. The tumour was active again. In 2023 Scott started his second round of treatment; 20 months’ worth of intensive chemotherapy condensed into 10. A much more intense dosage than the first.
Scott said: “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.”
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 said: “Now, I take it one month at a time. The fatigue is relentless. Most days I can’t leave the house. But I’m still here, and that’s something I’m grateful for.”
Brain tumours are indiscriminate; they can affect anyone at any age and kill more men under 75 than prostate cancer. Yet just 1% of the national spend on cancer research has been allocated to brain tumours since records began in 2002.
Fiona said: “As Scott’s main carer, there were times I struggled to cope. It was constant, medication, appointments and side effects. He was dependent on me for everything. It’s exhausting, but I refuse to be solemn when Scott is so positive and optimistic. Watching my son go through the trauma of surgery and three rounds of treatment for brain cancer has been heartbreaking. No family should have to experience the fear, uncertainty and pain that we have.
“My sister Lyndsey and I are taking on the 200k in May challenge to raise money for Brain Tumour Research because we need better outcomes, kinder treatments, and ultimately a cure. If our efforts can help spare just one family from this suffering, then every step will be worth it.”
Katrina Jones, Head of Community and Digital Fundraising at Brain Tumour Research, said: “Fiona and Lyndsey’s determination to take on the 200k in May challenge is truly inspiring. Fiona’s strength in supporting Scott through such a harrowing journey, while also raising vital funds and awareness, embodies the spirit of our incredible community. Scott’s story highlights the brutal reality of brain tumours and the urgent need for more research. We are so grateful to Fiona and Lyndsey for turning their pain into purpose to help drive change.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
To support Fiona and Lyndsey's 200k In May Your Way challenge, visit:
Lyndsey Agnew is fundraising for Brain Tumour Research
You can also follow Scott's story on TikTok: https://www.tiktok.com/@scottsstory
