Amy Frankcom, from Bristol, was living a busy life with her husband Simon and daughter Olivia when subtle but persistent symptoms began to disrupt her health. After months of being reassured that nothing serious was wrong, an MRI scan revealed a large brain tumour that required urgent surgery. Now adjusting to life with permanent hearing loss, Amy is sharing her story to raise awareness of the urgent need for more research funding.
Amy tells her story…
I was 31 when I was diagnosed with a 4.5cm acoustic neuroma in February 2024.
Four months earlier, after we returned from a holiday, my left ear felt blocked. The doctor said it was probably due to flying. Then, I started getting shooting pains on the right-hand side of my neck and the top of my head - quick, sudden pains. I went back to the doctors numerous times and was told they were headaches caused by the flight.
By February, there was still no resolution but then a student doctor suggested an MRI, just to be on the safe side, as the symptoms had been going on for a while. I got an urgent referral to South Bristol Community Hospital. They told me they weren’t expecting to find anything but wanted to check just to be on the safe side.
I didn’t think much of it and waited for the results. Then I got a phone call one evening. Straight away, I knew it must be serious. The doctor said she didn’t know whether to wait and book an appointment, but felt it was best that I knew immediately. She told me they had found a brain tumour.
I was filled with fear. It was horrible, something I’ll never forget or get over.
An appointment was booked for me to go back to the hospital and the wait was horrific. It felt surreal, like I was in a strange dream. My husband, Simon, and I went together and the doctor explained it was treatable, but I made the mistake of Googling it, which is the worst thing you can do. Because of its size – 6cm - I was told I would need brain surgery.
They explained the risks: loss of sight, speech, mobility, or even death. There were no other options. Seeing the scan made it real. The surgeon told me it was a significant size and explained that I would likely lose my hearing on my right side.
I had surgery on Monday 22th July 2024 at Southmead Hospital. It took 13 hours but was successful. Going down to pre-op was terrifying; that’s when it really hit me what was happening.
After the operation, my main concern was that I couldn’t see out of my right eye. My vision was like I was underwater. During surgery, I had been lying on my left side and cleaning solution had been dripping into my eye for hours. Thankfully, my sight recovered and is still improving.
I have lost my hearing completely on my right side. I’ve been fitted with cross hearing aids, a microphone in my right ear and a receiver in my left.
Life with hearing loss has been difficult, especially in groups and busy places, and I am still adjusting.
I spent one night in intensive care, then a week on the neuro ward. I came home on our daughter Olivia’s seventh birthday, which felt incredibly special. I didn’t need any follow-up treatment, but there is still a small amount of tumour left on the nerve, so I’m monitored with regular MRIs. Because the tumour was so large, it had pushed my brain out of the way, leaving a void that we’re watching as it recovers.
I had been back and forth to the doctors several times, and I’m so grateful to the student doctor who suggested the MRI which found my tumour.
Early diagnosis is so important. I would tell anyone not to ignore their symptoms, no matter how common they seem.
I’m running the London Marathon in 2026 to raise money and awareness for Brain Tumour Research. I still don’t know why I got a brain tumour, and those answers are so important if we’re going to prevent diagnoses like mine in the future.
I’ve never been a runner before, the furthest I have ran is 10K, but I’m giving it my best shot and following the advice given by the Brain Tumour Research running coach.
Training is very tough, due to the nerve damage when I started running it effected my eyes so I couldn’t see but after speaking to the neurosurgeon he said that will settle down in time.
Being diagnosed with a brain tumour is not the end. There is hope, even when everything feels frightening and uncertain. I am living proof that research saves lives and gives people the chance to move forward, and that’s why supporting Brain Tumour Research is so incredibly important.
Amy Frankcom
January 2026
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Amy’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
