In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Essex mum-of-two Jenny Cooper-Radley was diagnosed with a grade 2 meningioma following a trip to Boots Opticians in Chelmsford in October 2011. Her doctor, whom she had visited around five times in two months, had attributed her ‘feeling a bit hungover’ to possible vertigo, Meniere’s disease or benign paroxysmal positional vertigo (BPPV) and prescribed medication. It was only when the former nursery nurse began experiencing pain in her eyes that she made the opticians appointment which led to the discovery of her tumour. She went on to have a craniotomy but continues to suffer with debilitating facial pains and in July 2020 was told she had developed a new tumour, which is being monitored with regular scans. Now, having recently completed a Couch to 5k, the 49-year-old is training to run the London Marathon.
Jenny tells her story …
My face aches 24/7 and no one really knows why; it could be related to my original tumour but tests haven’t shown as much. It’s hard work for me to function normally because I’m tired all the time or in pain. Day-to-day I struggle to get out of bed and three years ago I was forced to give up my job as a nursery nurse, something I had done for around 30 years and loved, knowing I wouldn’t be able to do it again unless there’s some sort of medical breakthrough. I support Brain Tumour Research because I’ve survived one brain tumour but have got a new one and I don’t know what it’s going to do to me, so I want to raise money and awareness to help me and other brain tumour patients.
My symptoms started in 2011. I am not a drinker but I went through a stage of feeling like you do when you’re a bit hungover. I’d still be able to function but things were a bit ‘whooshy’, like when you drive with the back windows open. I have two children and worked full time, so didn’t make too much of a fuss of it but I did go to see my doctor about five times in two months. I had lots of tests and was told I could have vertigo, Meniere’s disease or benign paroxysmal positional vertigo (BPPV) and was prescribed medication. I took lots of tablets but nothing worked.
“I was also getting a pain in my eyes, as if someone was pushing my eyeballs with their thumbs, something I now know was caused by my tumour touching my optical nerve.”
I could still see and it didn’t stop me doing anything, but eventually I made an appointment at Boots Opticians. I downloaded a voucher to make my visit cheaper and went on my lunchbreak. When I arrived, they asked if I wanted to have retinal photography. It was an extra £10 so I decided against it but my optician ended up waiving the fee and taking the photos anyway. She told me she wasn’t happy with how things looked and said she’d like to refer me to the hospital ophthalmologist.
Two days later they rang saying they’d made me an appointment for the following day, Saturday 15 October 2011, at Broomfield Hospital, in Chelmsford. My mum took me because I wasn’t allowed to drive after having the dye put in my eyes. I went in at 12.30pm and had a number of eye tests as well as a CT scan. At about 7pm they told me they thought I had a brain tumour and they sent me in blues and twos to the neurology department at Queen’s Hospital in Romford. I didn’t know what to think. When I got there, I had a full body MRI which showed I had a 4cm right-sided meningioma. I was admitted to the hospital, put on steroids to reduce the swelling around my tumour and scheduled for surgery.
I had a stealth-guided craniotomy on 20 October 2011. My scar runs in a horseshoe shape from behind my right ear, around the top of my head and down my temple. My surgeon told me my tumour literally fell out in his hands. It was grade 2 so if it had been attached, I’d have had to have radiotherapy but he said as he took the side of my skull off it practically fell out. I woke up after coming back from recovery with 40 staples in my head, pleasantly surprised that they hadn’t shaved my head. It was amazing. If you imagine the line where they cut, that’s how much they took, the absolute minimal amount of hair. Once I was allowed to wash it, you couldn’t even see what was missing. I was discharged three days later and I went to stay with my mum and dad because I didn’t want to be by myself at first.
“My face swelled up a bit, I think it’s because I tried to do too much too soon, probably because I felt so good after surgery.”
I developed quite a few infections where my hair was growing through my scar too. The bottom of it looked like a slug where it was so infected and I had to have that debrided. It was a one-day procedure and the scar from it made me look like Frankenstein. I sometimes wonder if my facial pain is caused by that scar tissue. I also have an issue with the right-hand side of my head where, if I get an itch, it may as well be your head I’m scratching because it doesn’t feel like mine, but at least I’m here to tell the tale.
“I was close to being fully discharged after not showing any regrowth for 10 years when, in July 2020, a scan showed I had a new but tiny brain tumour.”
I’ve never met my new surgeon because my old one retired and, due to COVID-19 restrictions, I’ve only spoken to my new one by phone. When he rang, he said my last MRI didn’t show any regrowth but it did show a new tumour. It’s only 5mm so they’re just keeping an eye on it for now. I was supposed to have a scan in November 2021 but it’s not happened yet because they’re still experiencing delays from the pandemic. I don’t know if my tumour’s going to get bigger or if it’s going to stay as it is and not affect me but I can’t wake up every morning thinking about it because I can’t live like that. I didn’t tell anybody except my parents about my new tumour because I didn’t want it to define me. If I rubbed my head because I was knackered or you came to mine for a coffee and I had a headache, you wouldn’t automatically think it was because of a brain tumour. When people know you have one, they fuss around you and I didn’t want that.
I completed the last run of my first Couch to 5k on New Year’s Eve and am now getting ready to run the London Marathon in October. In part I decided to do it to mark my 50th birthday and I’ll be running it for Brain Tumour Research, a charity I’ve supported since my original diagnosis by taking part in Wear a Hat Day and last year I also did the 100 Star Jumps a Day in November and 10,000 Steps a Day In February challenges. The thing that’s always stood out for me is that brain tumours are the biggest cancer killer of children and young people under 40, yet it gets the least amount of funding. It angers me that people can see how many are losing their lives because of this but they can’t give more to help fund it.
“I was really lucky to have my tumour taken out. I know I have another one now but some people aren’t so lucky.”
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.
Together we will find a cure