Jane Lightfoot, from Tongham, Surrey, was diagnosed with a vestibular schwannoma in April 2015 after months of suffering with a suspected ear infection. The 47-year-old had a one-off intensive session of radiotherapy in April 2022. She continues to suffer with headaches, dizziness, fatigue, mood swings and shooting pains through her head and behind her right ear. The mum-of-one is being monitored with regular scans.
Jane tells her story …
Around eight years ago, I suffered for many months with what was thought to be a severe ear infection. It wasn’t clearing up, despite me having many courses of antibiotics, and had knocked my depression to rock bottom, so I went back to the doctor. Having seen a different GP at each appointment, I got fed up with repeatedly answering the same questions and asked to see one who specialises in ear problems. The doctor I saw was lovely and asked if I had ever had a balance check and an MRI scan, which I hadn’t.
Within a couple of weeks both tests had been booked, carried out and a referral was made to see an ear, nose and throat (ENT) specialist at Frimley Park Hospital, in Surrey. That appointment took place a couple of months later, following blood and hearing tests, and I went with my mum for moral support. When I was called into the room, I was greeted by the specialist and another doctor.
“I don’t remember all the conversation and think it took a while to sink in, but I was told my hearing wasn’t the best due to the fact I had a brain tumour, a vestibular schwannoma.
From that moment on my life changed to include regular hearing tests and MRI Scans. Everything ticked along nicely for a few years, until around 2019 when I received a call to a booked appointment with a specialist. There I was informed that my tumour had grown a vast amount and despite it being low-grade, I was being referred to Guy’s Cancer Centre, in London. My MRIs and visits continued until 2021 when I got a call to tell me numerous specialists and surgeons had looked at my scans and hearing test results and wanted to put me forward for a one-off intensive session of radiotherapy.
“I received a vast amount of information about the treatment and agreed to have it even though I was extremely nervous, anxious and not 100% sure what to expect.”
I spent March 2022 travelling to Guy’s every Tuesday for hearing and blood tests and MRI and CT scans. I also had a mould made of my head. On 19 April, my dad and I made the two-hour car journey into London for my radiotherapy session. I can’t thank him enough for coming with me to all these appointments. I really needed the support and it was lovely to spend some quality time together. We even stopped for a spot of lunch at Borough Market each week, which was naughty but nice.
“As I sat alone in the waiting area waiting to be called in, I suddenly had a meltdown as it dawned on me what was about to happen.”
Once in the treatment room, two lovely members of staff calmed me down and talked me through the whole process. I laid on the bed whilst they carried out all their checks and my head mould was bolted to the table. I lay there uncomfortable, not being able to move or talk, with only a thumbs up or down as to how I was feeling. The machines kicked into action and the tears rolled down my checks with thousands of images and thoughts flashing before my eyes.
“Eighteen months have passed since then and, whilst it’s not all been plain sailing, I know I’ve been extremely lucky as I haven’t experienced half the side effects I could have.”
I have had two episodes of extreme dizziness which had such an effect on my balance that I had to walk with the aid of a stick, but a course of antibiotics and steroids got me back to normal. I’m now waiting for my next appointment, which was meant to take place in June but has been postponed until October.
“I know there are hundreds of people in a worse situation than me, but I do struggle because I suffer with things you can’t see – mine’s an invisible illness.”
I have to deal with continuous headaches and fatigue, shooting pains through my head and behind my right ear, mood swings and dizziness that makes it a challenge to walk without looking drunk. Because of the need to raise awareness of brain tumours, and funds for Brain Tumour Research, an amazing charity that has offered me a great deal of support, I will be taking part in Chichester Walk of Hope on 30 September. I’m looking forward to it and wish everyone taking part lots of luck.
Jane Lightfoot
September 2023
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Jane’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