South-African born Robert was diagnosed with an oligodendroglioma after collapsing at home in January 2023. The father of three, who moved to Marlow in Buckinghamshire more than two decades ago, had surgery followed radiotherapy and is due to finish chemotherapy in June 2024. Robert, who has been given a prognosis of 10-15 years, has just completed an almost 1000-mile cycle whilst undergoing brain tumour treatment to help raise awareness of the disease.
Robert tells his story…
Living with a brain tumour has given me a new gratitude for life. It has encouraged me to make changes to my diet by eliminating sugar, and to maintain my active lifestyle which is something I enjoyed even before I was told I had the disease.
On 31 January 2023, on my return home from work after fetching the kids from school, I began to feel dizzy. The same sensation you might feel from standing up too fast. I tried breathing through, but it got worse, and I took a tumble to the floor, narrowly missing the kitchen side, thanks to my wife Shelley who I called into the room just in time.
I woke up in an ambulance on the way to the John Radcliffe Hospital (JR) in Oxford. Shelley told me I had stopped breathing after my fall and my face was turning blue.
A scan discovered a tumour growing on my brain. I was in complete shock and Shelley was deeply upset.
I expected to be told that I had low blood pressure or diabetes, I never imagined I would be told I had a disease with a terminal diagnosis.
“I was adamant that I didn’t want to watch and wait, living in fear that every pain in my head could be caused by the tumour.”
Fortunately, I had private health insurance which enabled me access to Mr Vasileios Apostolopoulos, a brain surgeon who works at the JR. He was very clear about the treatment plan and told me the best course of action was to debulk the mass. After, I would have radiotherapy and chemotherapy to treat whatever was left. The focus was very much on giving me a quality as well as quantity of life.
The best way Mr Apostolopoulos described my brain tumour was like gum entangled in long hair. It wasn’t one solid mass, but instead diffused, with tentacle like growths.
In the lead up to surgery on 13 March at Wellington Hospital in Regent’s Park, London, I upped my already healthy lifestyle. I stopped eating sugar, ran 16 miles every week and continued playing football.
Despite my efforts, I suffered a provoked seizure during the operation and the team looking after me in theatre hung around hours after the procedure. This kind gesture of the health team giving me more of their time to check on me when I woke up was a human element of brain tumour treatment that deeply moved me.
A biopsy confirmed my tumour was an oligodendroglioma, and it’s terminal.
“Suddenly I had a new appreciation for life.”
Six weeks later I returned to exercise with the support of my wife who, as someone with no interest in cycling, got on a bike to accompany me due to the high risk of me having a seizure. I knew I couldn’t outrun treatment, but I wanted to outrun the side effects which I had only seen negative things about. I found the routine helpful to my mental wellbeing as well as physical health. As I come to the end of chemo, I wanted to use my experience to push the boundaries of what you can do when living with a brain tumour. Doctors told me that mine could have been growing since 2017. Brains tumours are indiscriminate, they can affect anyone at any age.
Having previously cycled from Buckinghamshire to Paris in 2023 to watch the rugby World Cup, I decided to challenge myself with something different in May and June 2024.
“I have now completed and set the unofficial Guinness World Record for the longest bike ride setting off from Marlow, around England, whilst undergoing chemo, covering 987 miles in 18 days during my last round of treatment.”
I’m waiting to find out if it’s an official record. No-one has attempted a challenge like this before. The purpose of my ride was to show everyone the possibilities of what you can do alongside cancer treatment.
I’d love for my story to inspire other brain cancer patients that it isn’t too late to start something, and it can be as simple as starting by getting out for a walk and build from there. For me exercise has been key in my brain tumour journey, before and during treatment.
We must push boundaries of treatment and research if we are to find kinder options to fight and eventually cure this disease. Investment into brain tumour research must be prioritised to ensure future generations, including my children and their families, don’t have to deal with this devastating disease.
Robert Seaward
June 2024
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet 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 Robert’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