In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Ben Hurd is 33 and is living with a grade 4 glioblastoma multiforme brain tumour. He has been told that the coronavirus pandemic means his ongoing chemotherapy and next MRI scan will be delayed and is worried that time is against him.
Ben tells his story…
I must have been to my GP and the out of hours doctor around nine times last May when I started experiencing severe headaches and flashing lights in my left eye. I was told I was suffering from migraines and then, when I started to have pains down my leg, it was diagnosed as sciatica.
Because I was in so much pain and discomfort and felt I really needed to get to the bottom of what was going on I went to a local optician who did a visual field test and from there I was given an urgent referral to an eye clinic. In many ways it was a relief as I felt at last something was being done and I wanted to get to the bottom of whatever the problem was.
Things moved quickly from there and I was booked in for an MRI but I didn’t actually make that appointment as I was taken ill at a friend’s house and taken to A&E in Barnsley with a suspected bleed on the brain. The scan I had a result of that revealed I had two lesions on my brain and I needed surgery.
It was all a bit of a whirlwind and a lot to take in. The operation took place in Sheffield on 21 May and took seven hours. It was successful in removing most of the tumour and I was lucky in that my recovery was good and I was back at home in Goldthorpe, Barnsley, within days.
“The operation was a major deal and, sadly for me, it was really only the beginning of my journey. A biopsy revealed that the tumour is a glioblastoma multiforme and the prognosis, even with treatment, is just 12 to 18 months.”
“Within a month of the operation I started treatment which involved radiotherapy and the chemotherapy drug Temozolomide. After three months an MRI scan showed the treatment hadn’t had an impact on remaining cancer cells but chemo continues, this time, with the PCV combination drug.”
I should be on my fourth cycle of this drug now and then having a follow-up MRI to check progress but everything has been put on holiday because of the coronavirus. As a patient on chemo I have suppressed immunity and would be at high risk should I contract the virus but time for me is extremely precious and I may not have that much left. My oncologist hopes that I might be able to get back on treatment by the end of May and I am keeping my fingers crossed. For now, that is all I can do.
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.
Brain Tumour Research is determined to change this.
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