Jo Fuller, 51, from East Leake, on the border of Leicestershire and Nottinghamshire, was diagnosed with a glioblastoma after suffering a seizure without warning while on holiday in Australia in December 2024. Following emergency brain surgery more than 10,000 miles from home, she returned to the UK for radiotherapy and chemotherapy, only to discover the treatment had failed and her tumour had grown aggressively. Forced to sell her home to fund private treatment, Jo remains determined to defy the odds and is sharing her story to raise awareness of glioblastoma and the urgent need for more research.
Jo tells her story…
Before my diagnosis, life was incredibly busy. I'd just started a new job as a dyslexia specialist at Nottingham Trent University while continuing to run my own business as an access arrangements assessor and finish my qualification as a diagnostic dyslexia assessor. It felt as though everything I'd worked so hard for was finally falling into place. My partner, Wayne, and I had also begun planning our future together. We'd travelled to Australia to spend Christmas 2024 with his family in Coffs Harbour, New South Wales, and intended to return home, tie up a few loose ends and then move back there for two years. Dyslexia specialists are in high demand in Australia, and it felt like the perfect opportunity. My daughter, Lauren, 30, was excited about potentially joining us too, and we couldn't wait to start that new chapter.
On Boxing Day, I'd been to the supermarket to buy food for a family barbecue before we spent the afternoon relaxing in the garden overlooking the sea. It was such an ordinary day, and there was nothing to suggest our lives were about to change forever. Then, out of nowhere, I felt my eyes flick sharply to the left, followed by my head turning in the same direction.
The next thing I remember was waking up on the dining room floor with paramedics and Wayne looking down at me. I had absolutely no idea what had happened.
Wayne later told me I'd had a tonic-clonic seizure, stopped breathing and that his cousin was moments away from starting CPR before the paramedics arrived. Hearing that was terrifying because I'd never experienced anything like it before. I'd suffered with migraines over the years and often felt tired, but I'd always put that down to chronic fatigue syndrome. Looking back, there were no obvious warning signs that made me think I had a brain tumour.
I was taken to hospital where a CT scan revealed a lesion on the right frontal lobe of my brain. Doctors arranged an MRI scan and explained they suspected it could be a glioblastoma – an aggressive and cancerous brain tumour – although they wouldn't know for certain until after surgery. I remember searching the condition online myself because no one had really explained what it meant. Reading about the prognosis was frightening, but at that stage I was still hoping they were wrong.
Because I'd suffered a seizure, I wasn't allowed to fly home. Four weeks later another MRI showed the tumour had already grown by four millimetres, and suddenly everything started moving incredibly quickly. I was admitted to hospital before being transferred nearly 400km by air ambulance through a storm to John Hunter Hospital in Newcastle for surgery. I still remember arriving late at night on a neurological ward, completely alone while Wayne drove the three hours to meet me. Being so far from home made everything feel so much more overwhelming.
Looking back, the night before my craniotomy was probably the most frightened I'd ever been. Until then, cancer hadn't really crossed my mind. Instead, I worried whether I would survive the operation, wake up unable to speak or if something would go wrong and I'd no longer be the same person.
Brain surgery isn't something you ever expect to face, especially thousands of miles away from everyone you love.
Thankfully, the operation went well. I woke up with some weakness down my left-hand side, but it improved quickly, and I felt incredibly grateful simply to be alive. The doctors and nurses were wonderful throughout and couldn't have looked after me any better, but all I wanted was my family around me. When Lauren flew out from the UK to be with us, it meant everything. As a paediatric nurse, she understood far more than I did and became such a comfort to both Wayne and me. She even helped wash my hair after surgery because I couldn't bring myself to do it.
While we were trying to come to terms with everything that had happened, there were still so many practical challenges to overcome. Thankfully, our travel insurance company was incredible. They arranged accommodation, covered our expenses and eventually organised for an A&E consultant and an intensive care nurse to escort me on the 24-hour journey home because other airlines wouldn't allow me to fly without medical support. After spending almost three and a half months in Australia, I finally made it home, but my treatment journey was only just beginning.
Back in Nottingham, I came under the care of my oncology team and began six weeks of radiotherapy alongside daily chemotherapy. Like everyone else, I desperately hoped it would be enough. You cling to that hope because you have no other choice.
When my first scan after treatment came back, I was devastated to learn my tumour hadn't shrunk – it had grown aggressively instead.
I don't think devastation even comes close to describing how I felt.
My oncologist told me not to leave important things until later because she couldn't guarantee how much time I had left. Wayne and I had planned a handfasting ceremony to show our love and commitment to each other in case I died. Friends and family organised the whole day in just six weeks. Looking back now, I realise how much love surrounded us. Despite everything, it became one of the happiest days of my life and reminded me just how fortunate I was to have such incredible people around me.
A few months later, we were over the moon to marry on my 50th birthday. It was another reminder that, despite everything glioblastoma has taken from us, there are still precious moments worth celebrating.
After learning that standard treatment hadn't worked, I refused to accept there was nothing else I could do. I spent hours researching glioblastoma and discovered treatments that weren't available through the NHS. It became painfully obvious that many countries were offering therapies the UK wasn't. I began exploring hyperthermia treatment alongside repurposed medications, nutritional support and specialist advice, but everything came at a cost.
My daughter started a fundraising page, while friends organised an auction night to help pay for my first rounds of treatment. Their generosity was overwhelming, and I'll never forget what everyone did for me. But I also knew I couldn't rely on the kindness of others forever.
I realised the only way I could continue fighting for my life was to sell my house.
It was my biggest asset and represented years of hard work, but suddenly it became my only opportunity to access treatments that might give me more time. Making that decision was heartbreaking. We'd originally planned to rent out our homes to help fund our move to Australia. Instead, I was selling mine because I felt I had no other option. After paying taxes throughout my working life, I never imagined I'd have to sell my home to access treatments not routinely available on the NHS.
Living with glioblastoma changes the way you look at life. There are days when the future feels frightening because nobody can tell you how long you have left. I think about all the things I still want to experience. I'd love to see Lauren get married one day and meet my future grandchildren. Sometimes I find myself writing lists of everything I want to do while I'm still healthy enough to do it, because the uncertainty is always there in the background.
At the same time, my diagnosis has also taught me to appreciate every single day. I've introduced faith into my life, I stay as active as I can by going to the gym and walking regularly, and I try to focus on living in the present rather than worrying about tomorrow. Wayne, Lauren, my family, my friends and our local community have carried me through the darkest moments, and I honestly don't know how I would have coped without them.
One thing this journey has shown me is just how desperately brain tumour patients need better treatment options.
I was shocked to discover how little funding glioblastoma research receives and that there have been no new treatments in the past 20 years. For a disease with such a devastating prognosis, that's incredibly difficult to accept.
That's why I recently met with my local MP, James Naish, to raise awareness of the Rare Cancers Bill and the urgent need for greater investment into finding a cure for brain tumours. I also shared my concerns about the care I received before my diagnosis because I never had one GP overseeing my care so I don't feel the dots were joined up. Looking back, I'd experienced severe fatigue, memory difficulties and debilitating migraines that would knock me off my feet for days at a time. At the time, none of us realised they could be symptoms of a brain tumour.
I want people to understand that brain tumours can happen to anyone. I didn't have obvious symptoms that made me think I had cancer. I was simply enjoying a family holiday when my life changed forever. I also want people to know that behind every diagnosis is a family trying desperately to hold on to hope while searching for treatments that might offer more time.
I've always told myself I'll be part of the one per cent of long-term survivors, and I refuse to let glioblastoma decide my future.
If I could say one thing to anyone facing a diagnosis like mine, it would be to keep researching, stay as positive as you can and never stop fighting. A positive mental attitude really does make a difference, even on the hardest days.
I may not be able to change my own diagnosis, but I hope that by sharing my story I can help raise awareness of glioblastoma and the urgent need for more research. No one should have to sell their home to access treatments that might prolong their life, and no family should feel as though there are no more options simply because research hasn't progressed quickly enough. I hope that one day, people diagnosed with this disease will have far more hope than I was given, and that's why I'll keep telling my story.
Jo Fuller
July 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 Jo'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.
