A man has shared how the pins and needles he felt during a music festival turned out to be a sign of an incurable illness.
Despite the minor warning sign, Matt Collins went on to suffer a stroke and suddenly lost the use of his left arm.
Scans found a tumour the size of a golf ball on the 38-year-old’s brain, and doctors warned the severity of his stroke was “very large”.
Further tests confirmed his diagnosis of glioblastoma – a highly aggressive and rapidly growing brain tumour that is especially challenging to treat.
“A few days before the stroke, I’d had pins and needles, but I didn’t think too much of it,” Matt, from Aberdare, Wales, told Need To Know.
“Then my arm suddenly stopped working, and I knew something was seriously wrong.
“When they told me I had a glioblastoma the size of a golf ball, my whole world changed.”
It is the most common type of primary brain tumour in adults, with around 3,200 people diagnosed each year in the UK.
For patients with glioblastoma, their tumour almost always recurs and when it does, options are extremely limited.
Matt, who was diagnosed in October 2023, underwent a six-hour operation at the University Hospital of Wales in Cardiff, where surgeons were able to remove the tumour.
The 38-year-old now undergoes routine three-monthly MRI scans and, sadly, in July 2025 he learned that the tumour had begun to grow again.
He said: “I went through three more rounds of chemotherapy.
“My left arm stopped working again.
“At first, I thought it was because of the chemo.
“It’s terrifying when symptoms return because you immediately fear the worst.
“My recent MRI in November confirmed that the chemotherapy has had no impact and my tumour is still growing.
“With no cure and limited treatment options, I don’t know what the future holds.”
Despite advances in medical research, treatment options for brain tumours in the UK remain very limited.
Standard therapies for many patients still revolve around surgery, radiotherapy, and chemotherapy.
Few UK patients can access personalised immunotherapies, targeted drug trials and clinical trials – with many forced to pay for treatments themselves.
Matt sought alternative treatments not available on the NHS, including DcVax-L, a personalised vaccine made using cells from the patient’s own tumour, at a cost of £100,000, which he was able to fundraise.
He added: “I was only able to have the DcVax-L because of the random kindness of strangers.
“Without them I’d never have raised the £100,000 needed.
“But I was only able to have four doses because my tumour tissue had been stored incorrectly.
“Proper tissue storage can change lives – people need to understand how important it is.”
Matt has also investigated another potential treatment in Germany, costing £16,000 per cycle, which must be repeated every two months.
He said: “Whilst these treatments aren’t a guaranteed cure, they bring hope.
“It’s completely out of reach for most families.
“These treatments shouldn’t only be options for the wealthy or those able to fundraise.
“Personalised vaccines and other emerging treatments offer hope, but only if people can access them.”
Dr Karen Noble, Director of Research, Policy and Innovation at Brain Tumour Research, said: “Matt’s story reflects the devastating reality faced by so many families across the UK.
“Just 5% of patients with brain cancer are on a clinical trial in this country – compared to much higher proportions in other cancers.
“We urgently need to invest in research and expand access to innovative trials here in the UK, so patients have the opportunity to enrol on trials for new treatments.
“We are also calling on the NHS to ensure that patient samples are fresh frozen after surgery so they can access newer therapies as they become available in the future.”
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