Jane Hull, 56, from Leicestershire, was diagnosed with an acoustic neuroma, a low-grade brain tumour, in September 2024 after experiencing hearing loss, tinnitus and balance problems for more than a year. An underwriting director and keen runner, swimmer and musician, Jane underwent a 13-hour operation to remove the tumour from her vestibulocochlear nerve. Following surgery, she lost all hearing in her left ear and faced months of rehabilitation to regain her balance and independence. Determined not to let her diagnosis define her, Jane returned to work, completed the TCS London Marathon 2026 and has raised more than £12,000 for charity. She is now sharing her story to raise awareness of the long-term impact of brain tumours and plans to run the Robin Hood Half Marathon in September 2026 for Brain Tumour Research.
Jane tells her story…
Before my diagnosis, I was incredibly active. I loved swimming, cycling, running, walking and taking part in triathlons. Exercise had always been a huge part of my life and I also played the clarinet with my local concert band. Keeping busy, setting goals and challenging myself was simply who I was.
Around 18 months before my diagnosis, I started to lose the hearing in my left ear and developed tinnitus. At first, I didn’t think too much of it. As time went on, I began experiencing balance problems, brain fog, facial numbness, loss of taste, neck pain and migraine aura. Looking back, the signs were all there, but at the time I just thought it was part of getting older and going through the menopause. I never imagined a brain tumour could be causing my symptoms.
As the symptoms gradually worsened, I sought medical advice and was eventually referred for investigations. I was initially diagnosed at Spire Nottingham Hospital before being transferred to Queen’s Medical Centre in Nottingham for treatment. Further scans revealed I had an acoustic neuroma measuring 3cm by 3cm, growing on my vestibulocochlear nerve, the nerve responsible for hearing and balance. Although it was low-grade, its size and location meant surgery was unavoidable.
When doctors told me I would need a 13-hour brain operation, I was in complete shock.
I genuinely thought there had been a mistake. I convinced myself they had mixed up my scan with somebody else’s. It wasn’t until I collapsed and ended up in A&E, where another doctor confirmed the tumour on a CT scan, that the reality finally hit me. At that point, I realised I really did have a brain tumour and I really was going to need surgery. Everything felt surreal and, looking back, I think I detached myself from reality a little in order to cope with what was happening.
The surgeons explained the risks and they were frightening. I was told there was a chance I could die or suffer a stroke during the operation. I would lose my hearing completely in my left ear and there was a 20% chance of facial palsy. That news was particularly devastating because I play the clarinet. Music is part of who I am. I’ve played since I was nine years old and, after taking a break to raise my children, Matthew and Becky, I had worked incredibly hard to return to a good standard. I was preparing to perform Brahm’s Clarinet Sonata with my friend Joe, an amazing pianist, and was also playing regularly with the Loughborough Concert Band. The thought that I might never play again was heartbreaking.
The surgery took place in December 2024, and the first few days afterwards are a blur because I was so poorly. I had double vision and couldn’t walk. My brain wasn’t processing visual information properly and, at one point, chairs appeared to be hanging from the ceiling when they were actually on the floor. I knew recovery would be difficult, but the loss of independence was one of the hardest things to accept. Suddenly, I couldn’t go for a walk on my own, pop to the shops or do any of the everyday things I had always taken for granted.
Just a week after being discharged, I suffered a cerebrospinal fluid leak and was rushed back to Queen’s Medical Centre by ambulance.
I ended up spending Christmas in hospital on a lumbar drain for five days and having it inserted and removed was the most painful thing I have ever experienced. I felt exhausted, defeated and completely drained. Being back in hospital over Christmas, after everything I had already been through, was incredibly difficult. For a while I pretty much gave up and spent most of my time sleeping because I simply didn’t have the energy to deal with anything else.
But slowly, things began to improve. My husband Rob and I were in town when he popped into a shop, leaving me outside holding our dog. Standing there, I wondered whether I could manage a few steps on my own. To my amazement, I could. I discovered that the dog helped me balance and, in that moment, I realised I could regain some of my independence. It felt magical. Until then, I had been focused on everything I had lost, but suddenly I could see a way forward and began to believe I could still have a normal life.
The recovery process was long and challenging. I had to learn how to balance again and adapt to life with hearing in only one ear. For six months, before I received specialist CROS hearing aids, work meetings were incredibly frustrating because I struggled to follow conversations and often relied on lip reading to fill in the gaps. Even now, one of my biggest challenges is not being able to tell where sounds are coming from. Crossing roads can be difficult because I can’t always tell which direction traffic is approaching from, while supermarkets, theatres, pubs and busy public spaces can be overwhelming because my brain has to process so much visual information at once.
One of the most frustrating things is that my disabilities are invisible. People assume I can hear them or move out of their way, when in reality I often can’t do either.
I look completely normal, so it can be difficult for others to understand the challenges I face every day. The concentration required to hear conversations, manage constant tinnitus and maintain my balance can be exhausting, and I tire much more easily than I did before surgery.
Despite the challenges, I was fortunate to have incredible support around me throughout my recovery. My family, friends, colleagues, personal trainer, counsellor, speech therapist, and physiotherapist all played a huge role in helping me rebuild my confidence and independence. My swimming friends, in particular, kept me going during some very dark days. My employer was also incredibly supportive and helped me gradually return to work after eight months away. Being absent for so long was really hard because it felt as though the career I had spent more than 30 years building had been ripped away from me. Returning wasn’t easy, but I was determined to get back to the life I loved.
Exercise became one of the most important parts of my recovery. Being in the swimming pool was magical because I didn’t need to balance and it was one of the few places where I felt normal again. As I became stronger, I focused on a recovery plan I had created before surgery. It started with small goals, such as walking to the end of the road, and gradually built towards something much bigger: the TCS London Marathon 2026. I thrive on challenges and I knew that setting myself ambitious goals would help keep me moving forwards, both physically and mentally.
Fifteen months after brain surgery, I stood on the start line of the London Marathon. Training had not been easy. As my mileage increased, fitting runs into daylight hours became difficult because I can’t safely run in the dark due to poor balance. Crossing roads was also challenging because I can’t easily judge where traffic is coming from. But I trusted my personal trainer completely and never doubted that I would make it to the finish line because he believed I could do it.
Crossing the finish line was surreal. Through a mixture of smiles, tears, happiness and relief, I felt as though I had finally beaten the tumour.
It was one of the proudest moments of my life. Since my diagnosis, I have raised more than £12,000 for a number of charities through fundraising challenges, including the TCS London Marathon this year. Knowing that those efforts may help others facing similar journeys has made every mile worthwhile.
Rather than slowing down, I’ve continued setting myself new goals. I’m now preparing to take on the Robin Hood Half Marathon in Nottingham this September to support Brain Tumour Research and raise awareness of the urgent need for more research into brain tumours. There was a time after surgery when I couldn’t walk independently, so being able to stand on another start line is something I never take for granted. Every challenge reminds me how far I’ve come and how important it is to keep moving forwards.
Another huge milestone was being able to play the clarinet again. Losing music had left a huge gap in my life and there were times when I feared I might never return to it. When I finally picked up my clarinet after surgery, I felt excited, relieved and, perhaps most importantly, like myself again. It was a reminder that although my life had changed, I hadn’t lost the things that made me who I am.
Although acoustic neuromas are considered low-grade tumours, I don’t think there is enough awareness of the life-changing impact they can have. People hear the words “low-grade” and assume everything will be fine, but the reality is very different. Surgery may remove the tumour, but the effects can last a lifetime. There is the rehabilitation, the hearing loss, the balance problems, the anxiety and the constant monitoring to check the tumour hasn’t returned. Most of it is invisible and, while I may look fine on the outside, there is still a lot going on behind the scenes.
Looking back, I am incredibly proud that I kept going. It would have been easy to give up and feel sorry for myself, but instead I returned to work, regained my independence, completed the London Marathon and am now preparing for the Robin Hood Half Marathon. I have become fitter and stronger than I have ever been. I hope my story gives other people hope. Brain surgery is frightening and recovery can be incredibly tough, but there is life afterwards. You can find a way to do most things and people are amazing if you need support. Don’t give up.
Jane Hull
June 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 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.
