Ben's story

Mon 19 July

Ben shares his story of being diagnosed with a GBM4 in 2019.

"It was back in May 2019 when I woke up one morning for work and I had the most painful headache. I took two painkillers for it but that didn’t touch it. I went to see the out-of-hours doctor as with work I couldn’t get in to see my own GP. The doctor I saw put it down as a migraine and gave me medication for that.

"The medication didn’t work, so I went to see the out-of-hours doctors based at Barnsley Hospital. I saw the same doctor about four times and he just put it down to migraines. I thought ‘enough is enough’ and booked myself in to see the optician. He referred me to the eye clinic so on the 13^th of May I went, and I thought I might have had a stroke as he was trying to get through to the stroke team. He couldn’t, so he booked me in for an MRI scan the next day.

"But I didn’t make that appointment because just before, I went to my friend’s house. I went funny and all hot – I could hear them speaking to me but couldn’t really answer. My sister came and took me and my friend straight to Barnsley Hospital where they did a CT scan and found a bleed on my brain. At this point they said I couldn’t eat or drink."

"Before I went to Weston Park in Sheffield, I was on the neuro unit for a couple of days. They did a scan on the 16^th of May when I was told they’d found two large lesions on the right side of my brain which would need to be operated on. I should have had it done the next day but it got put back to the following Tuesday. The surgeon was happy that he removed it all, but the type of tumour (GBM4) is hard to remove as some cells are left behind.

"When the results came back I was with my mum Jennifer. My eyes filled up. I took a deep breath and asked the question: how long, and what treatment was out there. They said it would grow back within one to two years.

"It came back within the year. During the first lockdown my treatment was put on hold. When I had my next scan I was told it had grown back. Then I was put onto PCV – I had three cycles of that with no effect. My tumour had grown a bit more and there was a new spot on the left side of my brain. I went onto Carboplantin and had three cycles of that, which also didn’t work. My treatment was stopped in January this year.

"They have stayed in contact with me at Weston Park Hospital. I’ve been feeling well, and don’t class myself as poorly anymore. They gave me a scan last week. I’m waiting to see what it shows and where to from there. I’ll see if they’ll refer me for a trial up in Cambridge. I’ve been told that there are programmes up in Newcastle and down in London that my type of tumour isn’t compatible for. I’ve just got to keep doing what I’m doing, keep the positivity as it helps a long way.

"I’ve met a lot of amazing people along the way, sadly some of whom lost the battle to this horrible cancer. Thanks for letting me share my story with the good people of Yorkshire and the rest of the UK, it means a lot."

Thank you Ben for sharing your story with us.

To contact our team please call us on 0113 511 8111 or email support@yorksbtc.org.uk

To find out more about the ways we can support you on your journey, go to yorksbtc.org.uk/Loving-Support/

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