Matt from Aberdare suffered a stroke which led to the discovery of a glioblastoma (GBM) in October 2023. For more than a decade, the 36-year-old had experienced low mood and anxiety, which doctors said could have been caused by the golf-ball sized mass on his brain. He’s since undergone surgery and is currently receiving radiotherapy and chemotherapy treatment. Matt is looking at private treatment in a hope to help prolong his life. He’s sharing his story to help raise awareness of a disease that is the biggest cancer killer of children and adults under the age of 40.
Matt tells his story…
For most of my adult life I’ve struggled with my emotions, including low mood and anxiety, which I take medication for. I noticed my depression worsen in the last two years, but I was going through a divorce and had moved back home with my parents so had lots going on in the background. I used going to the gym and playing football as a way to manage my mental health.
In July 2023, my symptoms manifested physically. It started with headaches; I felt as if there was an explosion going off in the middle of my head. The sensation was like a pickaxe stabbing my skull from the inside. It came in waves, lasting for 10 seconds every 10-15 minutes. I later found out these are called thunderclap headaches.
I left it for a few days and went to the GP who suggested I get my eyes checked, which I did the next day, and all came back fine. The optician referred me back to the GP, but I had to wait for after the weekend before I could go back.
On Sunday the same weekend, I had my first seizure whilst at home with my parents. I’d never had a seizure before and it was a tonic-clonic episode, which caused my body to fit. After the episode, I came around with no recollection of what had happened.
“My mam phoned for an ambulance thinking I was having a heart attack. I was taken to Prince Charles Hospital and sent home at 2am.”
I’d been home for an hour when I had multiple seizures, this time foaming at the mouth. When I came around, I was later told I was shouting ‘ouch’ as my mam was performing CPR, pressing hard on my chest.
I went back to A&E, this time I was kept in hospital for four days and given a CT scan. I was put on a very high dose of keppra - an anti-seizure medication - which stabilised my seizures. I was discharged after being seizure-free for 24 hours, assured I would have an urgent MRI and aftercare plan in place. However, on returning home and having heard nothing for a week, I contacted the hospital who said my MRI scan would take 10-12 months.
I couldn’t afford to wait this long, so I arranged to have an MRI done privately. Before this could take place, at the end of August, I went to Green Man Festival with my girlfriend. Over the weekend, I didn’t feel right. I became progressively more clumsy and disorientated and felt I was getting weak and confused. On Monday morning after the last day of the festival, I woke up in my tent with a weakness in my left arm and leg. I was freaking out. I purposely hadn’t drunk much alcohol because of my seizures, so I knew it had to be something else.
Wondering if it could be a side effect of the keppra, after managing to swing my legs, looking like a character from The Walking Dead I reached the car. I phoned my GP who said to go straight to A&E. I’d been at a festival the whole weekend and all I wanted to do was go home and shower.
Doctors at Prince Charles Hospital checked me over. My vital signs all came back normal with no cause for concern, but they did another CT scan. This time they noticed something on the image and told me I had a medium-sized haemorrhage on my brain.
I was admitted to the stroke ward and probably the youngest patient by around 30-40 years. My vital signs showed no change and doctors were stumped as to what had caused the stroke – they kept telling me ‘we just may never know’.
In hospital, my condition deteriorated: my left arm had become completely paralysed, my speech was starting to slur and my face had drooped slightly on one side . A follow-up MRI scan showed a 47mm shadow around my brain and the severity of my stroke was upgraded to ‘very large’.
I was stressing about when I would next be able to play football or go to the gym, worried my mental health would be impacted as well as my body.
“Doctors still couldn’t find any cause for what had happened, insisting I may never know. The one thing my medical notes did say was that there was no evidence of a brain tumour.”
After around 10 days on the stroke ward, I was transferred to a specialist stroke rehabilitation hospital in Rhondda, where I spent two weeks. I made decent progress and was given early supported discharge with a dedicated stroke nurse and physios at home. After a week or so, I noticed the pain in my head was getting worse, but I was reassured by the stroke nurse that was ‘perfectly normal’ after a stroke. However, the pain was similar to the thunderclap headache I had before, so I decided to go back to A&E.
They checked all my vital observations again, which were normal and I had a scan just to ‘reassure me’ there was nothing else responsible and that it was my ‘anxiety’. They said they knew I was an anxious person and this could be exacerbating symptoms.
A while later, a junior doctor entered the room and checked my heart and breathing. They weren’t telling me that I could leave and I was worried they were going to tell me that I had another stroke. Instead, they told me they had found a golf-ball-sized tumour on my brain, which caused a lot of swelling and a 10mm midline shift.
It was a good job I was sitting down when they said I had a brain tumour as I felt my legs turn to jelly. My dad was with me and he was shaking. Neither of us knew what having a brain tumour meant.
The tumour was in a part of my brain responsible for regulating emotions and mood. The doctors asked about my mental health and the medication I was taking, telling me the mass could have been there for a while and could have caused my depression and anxiety to worsen.
The shape denoted the mass was probably high-grade and a week later at University Hospital of Wales in Cardiff, the tumour was removed. Histology results confirmed I had a glioblastoma (GBM). A brain cancer with a life expectancy of 12-18 months.
They said that with ‘hindsight’, looking at the original scan when I had my seizures in July, they could now see an abnormality.
Since the operation, I have felt better mentally. It’s hard to know how much of this is from the tumour removal or because I now feel like it’s put other things into perspective.
I’m in the middle of radiotherapy and chemotherapy at Velindre Cancer Centre in Cardiff. The fatigue is challenging. It’s a bit upsetting to lose your hair and look unwell, but that’s secondary to anything else.
NHS treatment finishes on 15 December, in time for Christmas with my family. Knowing this could possibly be my last, I’m going to make the most of spending time with my family, with a few extra members we don’t usually do Christmas with travelling to spend the day with us.
It feels bittersweet knowing I have an end date for treatment because I understand the cancer will recur and I’ll potentially have to go through this process again, providing the tumour is operable and I can be offered more radiotherapy.
As you do when you’re told you have a disease that you don’t know much about, I found myself searching for more information online and came across immunotherapy; a personalised vaccine that could potentially prolong the life of high-grade brain tumour patients.
The information seemed promising; a huge advance in the last 30 years that could add months to your life. However, it comes with a high cost, and funnily enough, I don’t have a quarter of a million quid spare so I’ve set up a crowdfunder.
I’ve been overwhelmed by the support my GoFundMe page has received and I am currently in the process of arranging the DcVax-L treatment in London. A huge portion of these donations came after a fellow Cymru and Swansea City fan who happens to be a comedy and podcasting hero of mine, Elis James, shared my story on his social media.
I’d listened to his show with John Robins for years, and podcasts (The Socially Distant Sports Bar) a lot during lockdown as we both share a love of sport and of course, Wales. It was surreal to have a celebrity figure who hadn’t met me lend me so much of their energy and support.
There are moments I feel frustrated and angry that this disease has been neglected by the Government. As someone who has worked in charity comms, I understand the importance of using your voice to speak up when things aren’t fair.
Everyone asks about your five-year plan, but for me, I’m going to make a series of six-month plans. It would be my dream to see Wales play in Germany at Euro 2024. I didn't go to France in 2016 because I had a job interview (big mistake - didn't get it!) and then Covid got in the way of Euro 2020 and my trip had to be cancelled twice. I didn't go to the World Cup in Qatar because of human rights issues, so Germany is the one.
Matt Collins
December 2023
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 Matt’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