Ben Robinson, 31, from Tewkesbury in Gloucestershire, spent years living with unexplained seizures before learning he had an anaplastic glioma, a slow-growing brain tumour. The former British Army engineer’s first seizure struck in 2015, leading to a diagnosis of epilepsy and cortical dysplasia. It wasn’t until November 2020, when his seizures surged to five a day, that MRI scans revealed a brain tumour. Ben now campaigns to raise awareness and support for Brain Tumour Research.
Ben tells his story…
My first seizure was in 2015 while I was still serving in the British Army as an engineer. After CT scans and an MRI test at Bristol Southmead Hospital, I was diagnosed with epilepsy and cortical dysplasia. I was medically discharged from the army in July 2016 because of the seizures.
I was prescribed anti-seizure medication and although the seizures still occurred, I adjusted to my new norm and carried on with life.
In November 2020 I was working as a residential support worker when my seizures suddenly increased to five a day. I was advised to go to Southmead Hospital where I had another MRI and waited for the results. Not long after, I got the phone call telling me there was a mass on my brain and that I needed emergency surgery.
It was surreal hearing that after being told for years that it was cortical dysplasia. The hardest thing was sharing it with my family. It was very upsetting, but they were incredibly supportive.
Doctors told me the surgery came with serious risks, including death, but there was no choice. My dad picked me up on the day of the operation in December 2020. I don’t really show my emotions through crying, and on that journey I mentally psyched myself up. I told my Dad that I was going to do this and I was going to get through it. I believe the battle is won or lost in your mind before anything else. I used to box recreationally in the army, and before you get in the ring you have to decide whether you’ve already won or lost.
Because it was during COVID-19, I wasn’t allowed visitors. I actually welcomed that, it was my journey and I didn’t want my family worrying. Walking into theatre in my hospital gown was surreal.
In December 2020 I had an awake craniotomy at Southmead, which meant I was awake for part of the surgery. Doctors said the chances of success were higher that way. There were two surgeons and someone holding my hand. They asked me to move my hands while they were operating to make sure my mobility was still ok. There are no pain receptors in the brain, the only thing I could feel was pressure.
I remember when they cut the tumour away; I could feel a sensation. The best way I can describe it is like one of those sticky octopus toys kids throw at the wall. It sticks with its little tentacles. When they cut the tumour away, it felt like peeling that toy off the wall, each tentacle letting go. The surgery took 10 hours in total and they put me back to sleep for the remainder of the surgery.
The surgeons rang my dad after and said it had gone well. It was a huge relief for my family.
When I woke up in ICU, the man next to me had undergone the same procedure but he couldn’t walk or talk. That really hit me, how lucky I was, and how brain tumours don’t care who you are or how old you are.
I had six weeks of radiotherapy and a year of chemotherapy. I lost my hair and went up to 18 stone due to steroids and other medications. It really took a toll on my body, but luckily I was fit and managed through it. Brain tumours are invisible. People see the same person on the outside but they do not realise the profound internal impact. Brain tumours change how you think, how you move, and how you experience life. They change everything.
Doctors told me my tumour type is slow growing and that I have approximately 10 years to live, but that’s just on paper. No one knows how long it had been there. I can no longer drive or work, and I lost my HGV licence that I gained through the Army.
I still suffer with fatigue, slower speech, mobility issues, memory problems, and coordination difficulties. Day-to-day things are harder. But I am alive. I survived.
I’ve moved back in with my mum, which was hard as an independent man at the age of 31, but I feel grateful. I go for an MRI every six months. My latest scan showed no recurrence, which is amazing, so I just keep living every day to the fullest.
I’m now registered as disabled because of my epilepsy, not my tumour, but the effects of the tumour are still there. I can no longer work due to the lifelong impacts of the tumour. There needs to be more awareness and more support, not just for families, but for the general public as well.
Mindset is everything. To get through a brain tumour diagnosis, you have to stay positive. Don’t hide from it, the sooner you face and accept your diagnosis the quicker you can move forward. Don't stand still because you will go backwards. Regardless if your problem is big or small remain positive. I have been through it and I want to share my story to help others.
I now DJ part time and recently organised a fundraising day party with seven other DJs. Together we raised £325 for Brain Tumour Research. It felt incredible to know we were helping others.
This is my fourth Christmas since diagnosis. Every Christmas I get to spend with my family is a blessing. So many families affected by brain tumours are fighting for time, for treatment, for hope. That’s why I’m asking the public to support the Brain Tumour Research Christmas Appeal this year. It will make such a difference and help fund the research we desperately need.
Ben Robinson
December 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 Ben’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.
