I cannot begin to describe the raw power the word “incurable” had when I first heard it as the doctors talked about my brain tumour. All I can say was its power was total and made me feel more vulnerable than I thought I ever could.”
Matthew
Shock diagnosis
Matthew, 39, from East Sussex, had very little warning before a brain tumour diagnosis in November last year “turned my life upside down.”
The dad of two was playing football with friends when he had what he now knows was a focal seizure. Looking back, he’d been a bit tired, but nothing particularly out of the ordinary. He’d put that down to a busy few months, both at home and in his busy job as Deputy Director of an NHS Trust.
The incident at football was enough to take him to his GP the next morning, and then to A&E that afternoon. Nothing concerning was found, and he was reassured, told to take things easy, and sent home. But things did not improve.
“Over the weekend, I had 15 more seizures like that – although I didn’t know then that they were seizures. I was having all these sensory changes that were extremely odd – that’s the best way I can describe it.”
By Monday, Matthew was back in A&E, convinced now that something was seriously wrong. This time, he was given a CT scan. A brain tumour was the last thing he imagined.
“I was thinking perhaps epilepsy, or a small stroke. The sort of things that, as member of the public, you might hear about on TV. But a brain tumour… not for a second, no pun intended, did the possibility enter my head.”
“Last Thursday I was playing football. Now I’m being told I’m having brain surgery.”
That first scan revealed a lesion that concerned medics, but a few days of uncertainty followed before further tests confirmed a brain tumour. Just days after his first seizure, Matthew was preparing for brain surgery.
Coming to terms with such a shock diagnosis was extremely hard, but Matthew was reassured that his surgeons had a clear plan.
“They were honest with me from the start. They said: “Look, we won’t cure you. We won’t be able to”. There was never false hope. But the attitude was about making things better and prolonging my life: “What can we do?”
And positive news followed the surgery: doctors were able to remove more than 80% of the tumour, which was found to be an astrocytoma. Matthew said:
“When I woke up after the operation, my surgeon was there with me. I don’t really remember the conversation. But the first thing I asked him, of course, was “how much did you get? He smiled back at me.”
“Other surgical teams have looked at my scans since, and I feel lucky that the consensus is that this is a very good result given the location and extent of the tumour.”
Adjusting to treatment and sharing his story
Matthew has since undergone radiotherapy and is currently having chemotherapy treatment. Adjusting to living with a brain tumour has been difficult. Recently he’s been battling fatigue, and he’s also had an unscheduled stay in hospital while his body adapts to chemo. He admits he sometimes “feels like a different person” to the one who used to wear a suit to put in long days at work and being so physically active.
Keen to help others facing a similar diagnosis, he began sharing his story on Instagram and also travelled to Westminster on February 29th to lend his voice to our campaign for a National Brain Tumour Strategy. His story will also feature in Channel 4’s Stand up to Cancer programmes this autumn.
As he nears to the first anniversary of his astrocytoma diagnosis, what has he learned? Matthew said:
“I have never felt my responsibility as a parent more than I do now. There’s a pressure and a weight that comes with that when I’m unwell – but it’s a good thing, it’s motivation to keep going.
“And the final thing is that I don’t take anything for granted now. Nothing at all. Not even opening my eyes in the morning.
“My cancer is its own worst enemy. Because I’m going to do everything I possibly can to raise awareness and get investment in research.
“And I’m going to continue to share my story. Because this is happening to people every single day. It has to be talked about, we owe it to them to light the path ahead.”
Stand up to Cancer
Matthew’s story will be featured as part of Channel 4’s Stand up to Cancer coverage. You can see it at the end of Channel 4 News, at 7.50pm on October 23rd.