‘My wife died of a brain tumour aged just 38. I joined Our Future Health to improve healthcare for our two sons’

Volunteer Voices – 9 July 2024
As part of our Volunteer Voice series, Matthew Wilson describes the need for more boldness and ambition to help advance health research for future generations
Brain Tumour Awareness Week 2024: Photography by Broni Lloyd-Edwards

Brain tumours kill more children and adults under 40 than any other cancer. 33 people are diagnosed with a brain tumour in the UK every day. 

For 40-year-old Our Future Health volunteer Matthew Wilson, these are more than just numbers. 

On 18 March 2021, Matthew’s wife, Zoë, collapsed out of the blue. It was a day that changed their lives forever. 

Zoë’s diagnosis

Until that day, Zoë had been a fit and healthy English teacher.  

“She suddenly collapsed in the bathroom while she was getting ready for work,” says Matthew. “She had a massive epileptic seizure. 

“Zoë was rushed into hospital for an MRI, where two masses on her brain were quickly identified. The diagnosis was Grade 4 Glioblastoma Multiforme (GBM), one of the most complex and aggressive brain tumours.” 

The average glioblastoma survival time is just 12-18 months. Only 25% of patients survive more than one year, and just 5% of patients survive more than five years. 

Surgeons told Zoë that her tumours were growing quickly, so she was scheduled in for two craniotomies a couple of weeks later. 

“Unfortunately, before this time came around Zoë had an intercranial haemorrhage in one of the tumours,” says Matthew. “She went back into hospital and was stabilised for immediate surgery.” 

‘It felt like fighting with our hands tied behind our backs’

The craniotomies were successful, although Zoë suffered with epilepsy and aphasia (difficulty finding the right words) for a time afterwards. 

“She couldn’t read initially, which as an English teacher was a huge deal to her,” says Matthew. “But with great determination and speech and language therapy she was able to regain those skills within a couple of months.” 

After surgery Zoë underwent an intensive regime of combined radiotherapy and chemotherapy. She then had an additional six cycles of oral chemotherapy, each lasting six weeks. 

Zoë outside the Oncology Centre followed by her young son

Keen to do everything they could, she and Matthew also explored other treatment options. They even travelled to Germany to get a personalised vaccine made, based on genetic sequencing. The hope was that this would teach Zoë’s immune system to attack the tumour. 

“For two years after this, life went on, with Zoë living incredibly well in fact and returning to work,” says Matthew. 

But GBM tumours are notoriously difficult to eradicate. They are diffuse, which means they can spread easily into nearby healthy tissue. 

“In that sense we both felt we were fighting with our hands tied behind our backs. After two years the cancer returned, and on the 27 April 2023 we lost Zoë, the most fantastic mother and wife.” 

A chance for ambitious learning

The causes of Zoë’s brain tumour were never established. “The doctors told us it was just bad luck really,” says Matthew. “In a way that’s been helpful, because there’s no-one to blame.”  

Today, Matthew works full-time as a campaign manager for brain cancer charity OurBrainBank, in the hope that others can experience a better outcome than Zoë. He also volunteered for Our Future Health, to improve research into the disease. 

Hope for the future: ‘Our Future Health will help scientists to be ambitious with their research’

“I do believe if Our Future Health can help researchers find out more about the causes of cancer, there’ll be much more opportunity for prevention and better treatments, which could be lifesaving,” he says. 

“Our two sons, John and Mark, are aged eight and four now. With the help of large population databases, like the one Our Future Health is building, I hope we can get better at spotting health trends for their generation.  

“Our Future Health is bold and adventurous. It will help scientists to be ambitious with their research, so they can make groundbreaking new discoveries.  

“This programme is going to benefit us all in the future.” 

Towards the end of her life Zoë campaigned against health inequality, visiting her MP in parliament and fundraising to achieve better outcomes and support for others with a brain tumour diagnosis. 

“She wanted to use her experience for good and to help others in her position,” says Matthew. “In some small way, contributing my bit to Our Future Health feels like continuing that mission.” 

Parkrun: Zoë and family took on several charity challenges together following her diagnosis

To learn more about brain tumours visit Brain Tumour Research – an affiliate charity of Our Future Health. 

If you or someone you know has been affected by a GBM diagnosis, visit OurBrainBank for signposting to support groups. 

Let’s prevent disease together

By volunteering for Our Future Health, you can help health researchers discover new ways to prevent, detect and treat common conditions such as diabetes, cancer, heart disease, stroke and Alzheimer’s.

Find out moreJoin Our Future Health now