Jamie Acaster, a devoted dad-of-two from Eckington in Derbyshire, began experiencing confusion and memory problems in early 2023. Despite visiting his GP several times, he was initially misdiagnosed with depression. An MRI later revealed a glioblastoma, an aggressive and incurable brain tumour, with a prognosis of just 12 to 18 months. Jamie underwent two surgeries and began treatment, but faced multiple complications and a rapid decline in health. He died in September 2024, aged 48, after suffering a fatal blood clot in his lungs. His family is now fundraising in his memory to help raise awareness and support research into brain tumours.
Here is Jamie’s story, as told by his sister, Donna Sayle…
Jamie was the kind of person who lit up every room. He was outgoing, warm, and the glue in so many friendship groups. He had an amazing ability to bring people together and loved having a house full of family and friends. Whether it was organising barbecues or simply making people laugh, Jamie thrived on being surrounded by others.
He was incredibly proud of his family. He and his wife, also called Donna, had two wonderful children – Ava, 15, and Harry, 12. Jamie also ran Harry’s junior football team from the time he was five, right through to his teenage years. Coaching the team and watching the kids grow gave him a huge sense of purpose and joy.
In March 2023, Jamie started experiencing strange symptoms – He would call me and say he was forgetting people’s names, including his childhood team Sheffield Wednesday, or couldn’t find the right words.
I’m a nurse, and I knew something wasn’t right. But when he visited his GP several times, he was told it was likely depression. Jamie disagreed – he knew his own mind and body.
The symptoms got worse. On one call, he said, “Things just don’t make sense anymore.” I insisted he go to A&E, and he was referred for an urgent MRI at Chesterfield Royal Hospital. That was when the tumour was found.
He called me from hospital while I was at work and told me, “They’ve found something on the scan. They think it’s a brain tumour.” I’ll never forget that moment. I left work straight away and drove home in shock. The next day, I was supposed to fly abroad for my 50th birthday. They told us nothing urgent would happen while I was away, so I went – but I carried a knot in my stomach the entire time.
In May 2023, Jamie had his first surgery to remove as much of the tumour as possible. A few weeks later, he had a second surgery to achieve a clearer margin.
A biopsy confirmed it was glioblastoma, an aggressive tumour which carries a prognosis of 12 to 18 months.
Jamie began a gruelling course of radiotherapy and chemotherapy, but his body reacted badly. His liver and kidney function declined, and the chemotherapy had to be adjusted multiple times. He was on around 50 different medications a day, and the high-dose steroids caused severe swelling. Jamie also developed pulmonary embolisms (blood clots in the lungs), which made further treatment even more complicated.
Despite everything, Jamie’s sense of humour never left him. He stayed upbeat, laughed with us, and remained himself right to the end.
On 1 September 2024, just 17 months after his diagnosis, Jamie died at Chesterfield Royal Infirmary after suffering a massive pulmonary embolism. He was 48 years old. Watching my mum and dad lose their youngest son was heart-breaking and it was awful to see my niece and nephew lose their dad. We all miss him so much.
It felt like Jamie had been failed at every turn – from the GP visits that didn’t lead to a scan, to the treatments that didn’t work. It was like hitting a brick wall at every turn.
When Jamie’s birthday approached in March 2025, I knew I didn’t want to spend the day sitting at home. He used to love going out for breakfast with the family during his illness – we’d meet every couple of weeks for a fry-up. But doing that without him didn’t feel right.
Instead, I organised a 14-mile fundraising walk from Jamie’s childhood home in Sheffield to his adult home in Eckington. We called it “A Jaunt for Jamie.” Ten of us took part, including his cousins, some close friends, and a few of my colleagues from the hospital. My mum, dad, and sister joined us for the final kilometre. When we arrived at Jamie’s home, his funeral song – If I Can Dream by Elvis – was playing in the garden by chance. It was incredibly emotional. I truly believe he was with us that day.
Together, we raised almost £2,000 for Brain Tumour Research.
Only 1% of the national spend on cancer research goes towards brain tumours. That has to change. I’m still processing all we went through, but I know this: I will keep speaking about Jamie, and I will keep supporting this wonderful charity in his name.
We miss him every single day. But we will keep walking, fundraising, and pushing for progress – for Jamie, and for every family like ours.
Donna Sayle
June 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 touched by Jamie’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.
