Sean tells his story…
At the start of 2022, I began to notice that something didn’t feel right. I was getting frequent headaches alongside muscular pain and a tingling sensation running down the right side of my body. I assumed I’d picked up some kind of injury like a torn ligament in my neck from weight training so I booked physiotherapy, fully expecting that would fix it.
I went through several physio sessions, but nothing improved. Eventually, the physio told me they couldn’t identify the cause of the pain and discharged me. That was worrying. I remember feeling frustrated and unsettled, thinking, I don’t feel right, but not being able to explain why. I was struggling to concentrate, and the symptoms just kept lingering.
Then, in July 2022, everything escalated suddenly.
I was woken in the early hours by my partner, Lucy (now my wife), after a sudden seizure.
Lucy immediately called 999, and within 20 minutes I was blue-lighted to Doncaster Royal Infirmary. We’d been together for 12 years, and we got married a few weeks after my diagnosis and just before my surgery. The night of my seizure had a huge impact on her, leaving her anxious and unable to return home for several days. Throughout everything, Lucy has been my absolute rock, and I couldn’t have got through this without her.
While I was in A&E, doctors carried out a CT scan. Later that morning, during a ward round, a junior doctor told me they had found a lesion on my brain. I felt completely numb. I didn’t cry or panic – my mind went straight to Lucy and my family.
I was quickly referred to the neuro specialist team at Sheffield Royal Hallamshire Hospital, where further scans were carried out. At first, the surgeons believed the tumour might be low-grade, which gave us a small sense of relief. But that soon changed.
That November, I underwent a nine-and-a-half-hour awake craniotomy at Sheffield Royal Hallamshire Hospital to debulk the tumour. Beforehand, I had several sessions with a clinical psychologist who talked me through every stage of the day, from arriving at hospital to discharge. When the team explained the procedure, they said I seemed calm and unfazed, which reassured them I was ready.
During the operation, surgeons realised the tumour was much larger and more aggressive than they had initially thought, and they had to widen the opening in my skull to remove it.
Because I was awake, I actually remember the moment things changed. I could hear the psychologist telling the surgeon that my speech was becoming slurred. I had suffered an acute stroke during surgery.
The following day, physiotherapists noticed problems with my walking, and one side of my face had dropped. It was frightening, but thankfully, with rehabilitation, I recovered. Today, you wouldn’t know I'd had a stroke at all.
Following surgery, I was diagnosed with a grade 3 astrocytoma, a type of high-grade glioma that requires long-term treatment and monitoring. In January 2023, I began five weeks of radiotherapy and in March, I started chemotherapy – 12 rounds in total – which continued until February 2024 at Weston Park Hospital.
Telling my mum, Kathleen, was incredibly difficult. She was shocked and initially believed my surgery meant I was cured, and it took time and many hard conversations for her to understand that there is no cure for my tumour.
Recovery was slow but steady. One doctor said to me, “You’ve poisoned your body with chemotherapy for a whole year. It will take time before you feel normal again.”
About six months after finishing treatment, I started to feel more like myself, although I know I’ll always experience some long-term side effects.
Returning to work as a Senior Account Director for a marketing company was a big milestone for me. I went back in October on a phased return, and my employer couldn’t have been more supportive. That understanding has allowed me to work consistently for over a year now, with only a small number of absences due to lingering side effects.
Throughout my treatment, my father-in-law, Carl, played a huge role. He drove me to many of my radiotherapy sessions, and during those journeys our bond really strengthened. Even in the darkest moments, we found ways to laugh. He’s become the father figure I never had.
Carl and I both share a passion for cycling, so when Sir Chris Hoy announced the Tour de 4 cycling challenge, we decided to take part together and raise money. Completing the 60km route, which included an elevation of 2,400 feet, was a massive milestone for me. It’s the first endurance event I’d ever finished, and I couldn’t quite believe I could do it after everything my body had been through.
We chose to fundraise for Brain Tumour Research so that future generations might have better options than those available today.
Not long after my diagnosis, Lucy and my brother, Paul, threw themselves into fundraising too. They both ran the London Landmarks Half Marathon and raised many thousands of pounds for the cause. Their support meant the world to me.
I try to stay realistic but hopeful. Recently, I received my latest scan results and was told everything is stable, which felt like the best possible gift. Knowing that the Brain Tumour Research Centre of Excellence at the University of Plymouth is focusing on research into high-grade astrocytomas gives me real hope. I’m realistic about my own situation, but if the research being done there can lead to better treatments or even a cure for future generations, then everything we’re doing to support it is worth it.
I’m really pleased we managed to raise more than £2,500 (including gift aid) through the cycling challenge – enough to fund a day's research at the Plymouth Centre. We’re already planning to take on the 100km route next year.
If there’s one message I’d share with anyone facing a similar diagnosis, it’s this: stay positive and try not to dwell on what’s out of your control. It’s not easy, but I truly believe a positive mindset can help you keep moving forward.
Sean Sweeney
January 2026
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 Sean’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.
