Fifty-nine-year-old Darren, from Brighton, was diagnosed with a meningioma in 2007 after episodes of blacking out. His three children were of school age when he had an operation to remove the tumour. Five years later, a recurrence in 2012 saw Darren receive CyberKnife radiotherapy at St Bart’s Hospital in London. The local council worker had a routine scan in March 2024 confirming a change in the remaining tumour on his brain. As he awaits a treatment plan, his daughter, Tayla, 33, is campaigning and fundraising with Brain Tumour Research.
Tayla tells her dad’s story…
Dad was diagnosed with a brain tumour when I was 16. I remember being in the last year of secondary school when he started blacking out.
He went to the GP who asked him a list of questions relating to his lifestyle such as diet, smoking and alcohol intake. I wouldn’t say my dad was unhealthy. He enjoyed good food, didn’t smoke and enjoyed a drink every now and then.
He answered the GP honestly and they latched on to his answers, suggesting he could make positive changes in these areas to try and stop his fainting. It felt as though they weren’t taking his case seriously.
“Dad always seemed to pass out when we were at an event and there was lots going on around him.”
I only witnessed, what we later found out, were tonic-clonic seizures (also known as grand mal seizures) at Christmas 2006. Dad had three episodes in quick succession and he fell to the floor; I didn’t know what to do.
When he came round, he could hardly walk. He went back to the GP; this time we saw a different doctor who specialised in head injuries. She sent Dad for an emergency MRI scan. That evening we had a phone call asking us to attend the Princess Royal and we were told Dad had a meningioma tumour the size of a fist.
This sent a huge wave of shock across our family. Seventeen years ago, when he was diagnosed, we didn’t know anything about the disease, and we suddenly had been thrust into a world we didn’t want to be part of.
On 27 March 2007, Dad had an 11-hour operation at Hurstwood Park Centre within Princess Royal Hospital whilst I was at school. Mum explained that doctors removed as much as they could but had to leave part of the tumour due to where it was growing on a main artery in his brain.
“Dad developed epilepsy because of the tumour.”
He suffers with Jacksonian seizures, a type of focal partial seizure, also known as a simple partial seizure. He knows when he is about to have one as he feels a sensation in his leg. He has learnt to move to an area where he won’t fall to mitigate any injuries.
Five years after his operation, a routine scan showed Dad’s tumour had grown. In 2012, he had CyberKnife radiotherapy to try and kill any remaining tumour cells. I remember seeing the mask that was made for him which covered his face. His head was bolted to a table by the mask as a laser targeted the remaining tumour on his brain.
Dad was open with us and said it was the scariest thing he had experienced. He had three intense sessions in as many days. After radiotherapy, he continued to have regular scans as doctors explained to us that meningioma is a slow-growing type of tumour, so we were prepared ourselves for what could happen in the future.
Diagnosis and treatment mean Dad’s immune system is weakened.
Up until March 2024, Dad was stable. He developed sepsis and contracted pneumonia at the same time, leading to another stay in hospital. We got the results of a routine scan just a week after he was discharged which showed a change in the shape of the remaining tumour.
His case is now with Haywood’s Heath Hospital and is being looked at by a new consultant as the person who looked after him all these years has now retired.
We are waiting to find out the treatment plan and understand that his options are limited. Having previously had radiotherapy, I understand this type of treatment can be harsh for patients and isn’t often repeated. Another operation could cause more trauma to Dad’s brain. Options are few and far between.
“There should be more options and kinder treatments for brain tumour patients.”
It’s a change that hasn’t happened as quickly as we would have liked which I believe is down to a lack of awareness of brain tumours and research funding.
Over the years I have taken part in runs to do what I can to help find vital research which led me to support Brain Tumour Research. My next challenge is the Brighton Half Marathon in 2025 which I really hope Dad will be at to give me a big hug at the end.
He’s got a great sense of humour and tells people he was bitten by a shark – explaining the scar on his head.
He’s proud of all his children and he speaks proudly to others about the work we are doing towards raising awareness of the disease. When I did my first run from Brighton Pier to Worthing Pier in 2022, Dad was in hospital recovering from a brutal and random attack. He managed to come and see me finish the race and I ran into his arms.
I hope that in 2025 we can do the same.
Tayla Hoad
August 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 Darren’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