Matthew, from Aberdare in South Wales, was just 35 when he started experiencing the “thunderclap” headaches that were the first sign that something wasn’t right.
Aside from the headaches, he was otherwise fit and healthy – he played football a couple of times a week, enjoyed going to the gym and went to watch Swansea City and Wales play regularly.
But just two months after he first saw his GP about his headaches, Matthew was given the devastating news that he was living with an incurable brain tumour known as a glioblastoma.
Matthew is sharing his story as part of our Bright Minds vs Brain Tumours appeal because he was shocked at how the symptoms of his brain tumour weren’t recognised by his doctors and at the lack of research into new cures for brain tumours.
If you’d like to help bring hope to people like Matthew, you can have double the impact when you donate via The Big Give between 22 July and 29 July because your donation could be doubled – without it costing you a penny more.
Matthew’s road to diagnosis
Matthew’s first signs that anything was wrong were “thunderclap” headaches that were unlike any he’d experienced before.
“They were intermittent, occurring every 10-15 minutes and lasting for 20-30 seconds at a time. The best way I can describe them is that it felt like someone was hitting my head with a sharp object, but internally, deep within my head.”
After seeing a GP, Matthew was prescribed painkillers and advised to get his eyes checked. He visited an optician the very next day and got a clean bill of health. Two days later, he had a frightening tonic clonic seizure. His mother called an ambulance and he was taken to hospital that evening, and discharged at 2am.
After experiencing several more terrifying seizures and staying in hospital for four nights, Matthew was shocked to find out that, rather than the urgent MRI scan he was hoping for, he would be facing a 12-month wait. That seemed unthinkable in the circumstances, so looked into getting one privately.
But before this happened, while at a musical festival, and precisely a month after that first visit to his GP, he suffered a stroke.
“I woke up on the morning of the 21 August with left-sided weakness, after feeling very disoriented and clumsy all weekend. As I was given no aftercare plan by a doctor, I was unsure if what I was experiencing was normal or not. When I got to the hospital with one-sided weakness, they initially didn’t want to give me a CT scan as all my vital observations were normal. Eventually, they decided to and discovered that I’d had what they first described as a medium-sized haemorrhagic stroke.
“In the hospital, my symptoms were deteriorating, and after days of being dismissed and told ‘it was all in my head and my anxiety’ and that I needed to take a ‘chill pill’, I was sent for an MRI scan, which upgraded the ‘medium’ stroke to ‘very large’, but showed ‘no underlying lesions’.
“A week later, I was sent to undergo stroke rehabilitation. I made a decent physical recovery and was given Early Supported Discharge; community stroke rehabilitation, which involved physiotherapy alongside a ‘dedicated’ stroke nurse, whom I never saw once; just a phone call, where they repeatedly reassured me that the headaches I was experiencing were perfectly normal and nothing to worry about.
I’m glad I ignored her advice as when I went back to A&E, they gave me a CT scan to ‘reassure me’ and then discovered I had a large 4x4x4cm brain tumour, a 10mm midline shift and a dangerous amount of swelling in my head. The tumour turned out to be a deadly, incurable glioblastoma.”
We’re committed to helping people like Matthew get a faster diagnosis after they begin experiencing worrying symptoms – whether that’s through working with policymakers in Government and the NHS or raising awareness of the symptoms through our Better Safe Than Tumour campaign.
Donate via The Big Give between 22 July and 29 July for your gift to have twice as much of an impact – without it costing you a penny more!
Running out of options
Matthew, who has been treated with chemo and radiotherapy at The Velindre Cancer Centre, Cardiff, hoped to be accepted on a clinical trial, but had to turn down one opportunity because the amount of travel involved would disrupt the vital treatment he has started already. Another – the Sativex clinical trial, which aims to find out if adding cannabis derivatives to the chemotherapy drug temozolomide can extend the lives of people with brain tumours – looks at recurrent tumours, so would only be applicable to him if his tumour reoccurs.
Sharing symptoms to help others
Matthew said going public with the story of his brain tumour diagnosis was the hardest thing he’s ever had to do, but when he found out that NHS treatment options for his tumour were limited after being diagnosed with a glioblastoma at just 35, he felt he had no choice.
After being treated with chemo and radiotherapy, Matthew hoped to be accepted on a clinical trial, but had to turn down one opportunity because the amount of travel involved would disrupt the vital treatment he has started already.
Another – the Sativex clinical trial, which aims to find out if adding cannabis derivatives to the chemotherapy drug temozolomide can extend the lives of people with brain tumours – looks at recurrent tumours, so would only be applicable to him if his tumour reoccurs.
“Being told there was no treatment that could beat the cancer – that I could only hope to slow it down – was utterly devastating.”
“By supporting this appeal and helping The Charity raise as much money as possible, I hope to make sure that more of the brightest minds are working towards finding new treatments for brain tumours. Funding more research will mean more clinical trials so that people diagnosed with a brain tumour can have hope for a brighter future.”
If you’re passionate about helping us move further, faster towards a world where people like Matthew have more hope for a brighter future, don’t miss your chance to donate to our Bright Minds vs Brain Tumours appeal. For one week only, your donation will be double at no extra cost to you – meaning you’ll have twice the impact.
Finding support
“It’s really scary being diagnosed with a brain tumour and it can be difficult to know where to turn. Thankfully, I discovered the bright minds working in The Brain Tumour Charity’s Support and Information team.
“They play a vital role in helping people diagnosed with a brain tumour and their families understand what to expect following a diagnosis. The team also helps connect you with the support you need, when you need it – whether that’s helping you access free counselling, make sense of the benefits system or find clinical trials.”
On learning of his diagnosis, Matt wrote a heartfelt letter to his loved ones, which can be read in full here. And with the help of people close to him, he’s doing his best to face the future with humour.
“Most people don’t know when they’re going to die, you just think it’s going to be sometime in the future, hopefully when you’re old. I’ve got more of an idea about when I’m going to die and it’s allowed me to really open up and tell the people I love how much I love and appreciate them, and to think about the things I’d like to do with the rest of my time.
“In a way, those things are a gift and I feel blessed in the most cursed of ways. Despite being quite a down person a lot of the time, I’ve always tried to find humour in situations.
“The love and support of my family and friends has gotten me through the darkest period of my life. I’ve also been blown away by just how many kind and generous strangers there are in the world.”
Double your donation to double the impact of research and support
In the UK, just 13% of people survive brain cancer for more than five years. Together, we can fund the bright minds who’ll move us further, faster towards a world where families affected by a brain tumour can hope for a brighter future. Matthew wanted to share his story so that people like him – people facing such devastating news – might have a little more hope in the future.
Compared to other cancers, brain tumour survival rates have barely improved in 40 years. Slowly, we’re changing that, but we need your help to fund the bright minds who can make the breakthroughs that mean people like Matthew who are affected by a brain tumour can enjoy a brighter future.
From 22 – 29 July 2024, any donations you make to The Brain Tumour Charity will be doubled at no extra cost to you as part of our Bright Minds vs Brain Tumours campaign.
