Have you been diagnosed with a brain tumour? Order your free information pack.

February 4th is World Cancer Day. This is Matthew’s story.

On #WorldCancerDay this year, we’ll be joining the call to #CloseTheCareGap so that people like Matthew from South Wales, can live longer and better following a brain cancer diagnosis.

World Cancer Day 2024

The theme for this year’s World Cancer Day on 4 February is “Closing the Care Gap”. Its organisers are calling on leaders across the world to “create innovative strategies designed to confront cancer inequity.”   

We’re sharing Matthew’s story because inequities in cancer care are something he’s become only too aware of since he was diagnosed with a glioblastoma last October.  

Matthew’s Story

Matthew Collins, 36, is a shy, private person. He said going public with the story of his brain tumour diagnosis was “the hardest thing I’ve ever had to do.” But when he found out that NHS treatment options for his tumour were limited, he felt he had no choice. 

Matthew, from Aberdare in South Wales, set up an online crowdfunding page in the hope of funding alternative treatments to extend his life.  

His goal is to raise enough money for DCVax-L vaccine treatment – a type of immunotherapy not currently available on the NHS that he hopes will buy him more time with loved ones. 

Glioblastoma Diagnosis

Matthew was finally told he had a glioblastoma after two months of worrying symptoms, repeated hospital visits and even scans failed to detect his brain tumour. 

The first signs that anything was wrong were “thunderclap” headaches that were unlike any he’d experienced before.  

He said: “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.” 

His doctor prescribed him painkillers and the advice to get his eyes checked. Matthew 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 Prince Charles Hospital in Merthyr Tydfil that evening, and discharged at 2am.  

Matthew explains: “At home, in bed, I had another seizure and my parents drove me back to the hospital. I had another seizure in the car on the way over and my parents thought I had died. I had several more seizures in the hospital, was taken into ITU, had a CT scan and was kept in hospital for four nights. I was stabilised after being put on an inappropriately high dose of levetiracetam, which stopped the seizures – and then discharged after being seizure-free for 24 hours.”  

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 he was attending the Green Man Music festival with his girlfriend, 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 disorientated 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 Prince Charles Hospital with one-sided weakness, they initially didn’t want to give me a CT scan as all my vital observations were normal (blood pressure, heart rate, pulse oxygen).  

“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’ – i.e. brain tumour.  

“A week later, I was sent to Ysbyty Cwm Rhondda 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. Well, I’m glad I ignored her advice as when I went back to A&E in Prince Charles, 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.” 

Fundraising – to buy time

Matthew (r) with friends

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.  

Instead, he’s thrown himself into raising funds to pay for alternative treatments, such as DC Vax-L treatment.  So far, his fundraising has been successful, with over £130,000 raised towards his £250,000 goal. 

Sharing Symptoms to help others  

Matthew is determined to raise awareness of brain tumour symptoms, after his own failed to be picked up in hospital. He felt he was “fobbed off” by medics, who put his symptoms down to anxiety. 

“I feel let down by the people I entrusted my life with in hospital. I felt dismissed, made to feel like an inconvenience, and at times like I was there on a jolly. They kept telling me I was fine, to relax and chill out.  

 “I think doctors need to be a bit humbler and listen to the patient and their family, not treat everyone as a ‘statistic’, because no, statistically it was unlikely someone my age should have a stroke and a brain tumour. But I should have received an MRI scan in July and I was dismissed and put down for a routine scan. I do appreciate the pressures on the health service, but it’s hard to excuse getting the basics so wrong.” 

One of the first things Matthew did on learning of his diagnosis was to write a heartfelt letter to his loved ones, which can be read in full here: my blog. And with the help of people close to him, he’s doing his best to face the future with humour:  

“The love and support of my family and friends has got me through the darkest period of my life. I’m also trying to find the positives in the situation: for example, I’ve witnessed kindness and generosity from strangers that I otherwise wouldn’t have, which has made me realise just how many lovely people there are around.  

“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.” 

Be a voice for change

Brain Tumour Awareness Month is almost upon us, and we’ve got big plans to make sure the points raised by Matthew and others are heard. Now is the perfect time to get involved and raise your voice. Join the #WorldCancerDay conversation on social media by following #CloseTheCareGap, and sign up to our campaigner network. https://www.thebraintumourcharity.org/get-involved/campaigning-for-change/campaign-with-us/

Read more about the care gap for brain tumours here:  https://www.thebraintumourcharity.org/news/policy-news/what-would-it-take-to-close-the-care-gap-for-brain-tumours/