Cycle enthusiast and former architectural technician, Philip, from Stevenage, was 67 when he died less than three months after being diagnosed with a glioblastoma (GBM) in 2022. His shock diagnosis followed episodes of “talking nonsense”. A CT scan at hospital for a suspected stroke showed a lesion on his brain. A month after his diagnosis, Philip had a series of seizures which caused life-changing injuries. He died on 21 March 2022.
Here is Philip’s story, as told by his daughter, Nikky…
Dad was a perfectionist and was very organised in his work and personal life. This changed when he was diagnosed with a brain tumour. He loved cycling and often went on biking trips with Mum who he encouraged onto two wheels, supporting her with her own medical condition.
In August 2021, Dad broke his collarbone after his foot slipped and he fell from his bike into a ford off a bridge which led him to have a titanium plate fitted. Dad started to have a few bumps whilst out on his bike.
By October, Dad began saying things that didn’t make sense during conversations with Mum. When December came round, she rang me in floods of tears telling me Dad wasn’t listening, he was just staring and not saying anything. She was fed up and thought he was ignoring her. Although it sounded out of character for Dad, I tried to reassure Mum.
During a meal with their family from Leeds, who they didn’t see regularly, Dad’s sister-in-law who was at the dinner noticed how quiet he was and noticed his mouth had dropped on one side. His episodes of confusion continued after the catch up when he randomly told Mum that he needed to pay for some fruit.
“Concerned Dad was having a stroke; Mum took him to Lister Hospital in Stevenage. He had a CT scan which found a lesion on his brain.”
We knew it was a tumour but were left waiting to understand what exactly that meant as the team at Lister needed to liaise with University College Hospital in London for a clearer diagnosis. We were frustrated, we wanted to know what was happening.
Dad was sent home but struggled with things he used to be able to do for himself. He got lost in the house he’d lived in for more than 30 years and couldn’t function fully on his own. He said bizarre things that were out of context or completely random. On a visit to my parents’, I asked Dad how he was and was greeted by a vacant stare and a comment about a pain in his head and that he needed paracetamol.
Dad had a lung disease called chronic obstructive pulmonary disease (COPD) and his consultant said surgery was going to be too much of a risk compared to the reward. This combined with Dad’s age ruled out treatment such as radiotherapy and chemo.
“I asked if there were any other options to try and save my dad which were met with a lack of enthusiasm, and we were told he had six months to live.”
My brother, Craig, wanted a second opinion but it was clear after Dad’s case was referred to a team in London, there was nothing more available to help him. We briefly looked at clinical trials but due to his age and the fact even taking a biopsy posed a risk to Dad we were bound by the science that was available at the time.
Dad’s tumour was referred to as being a lesion up until 17 January 2022 when he had his first seizure. It was the early hours of the morning and Dad was turning his side light on and off as a way of alerting Mum that something wasn’t right.
He was admitted to hospital and doctors didn’t think he’d make it through the night. He did, but he was never the same again. I’d describe the side effects of his seizure like dementia. Dad lost his memory function and his ability to do normal day to day things. His cognition was impacted, and he couldn’t process simple information.
He spent a couple of weeks in hospital and eventually we were told the mass was a glioblastoma (GBM) the size of a tennis ball.
From hospital he went into respite care in early February at Benslow Nursing Home in Hitchin. When he came home, he suffered multiple seizures which caused him to black out and drop to the floor.
Mum was driving to visit Dad in the nursing home but didn’t realise the ambulance she was behind was called for Dad who had suffered a major seizure. He died 24 hours later in Lister Hospital.
Our family has been devastated by brain tumours. Dad never got to meet his newest grandson Noah who was born four months later. He never got to enjoy retirement and sadly won’t get to watch Mum cycle London to Paris in September – which he was eager to support Mum with, hence why I am joining her so we can do this together for Dad.
To understand the disease, we need to increase the investment into research brain tumours so we can understand if there are kinder treatments available.
Nikky Vass
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 touched by Philip’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