Emily Nicholson, an aspiring model from York who dreamed of becoming a mum, was just 24 when she died from a brain tumour in April 2019. While living in Australia, she began experiencing seizures that led to the devastating diagnosis of a stage 3 astrocytoma, and she went on to undergo surgery, radiotherapy and chemotherapy with remarkable strength. As her condition progressed, Emily returned to the UK to be surrounded by the friends and family she loved so deeply, and despite everything she endured, including the heartbreak of a cancelled wedding, she never lost her sense of humour or her instinct to care for others. Today, her mum Joanne is sharing Emily’s story and supporting Brain Tumour Research, determined to raise awareness and help drive the change needed to find a cure for this devastating disease.
Here is Emily’s story, as told by her mum, Joanne…
Emily was one of those girls who made people feel instantly at home. She was funny, cheeky and fiercely loyal, someone who loved deeply and gave everything to those around her. Family and friends meant the world to her, and she was happiest surrounded by them. Even as a little girl, she was naturally nurturing and always dreamed of becoming a mum.
She grew up in York with her younger brother Matthew, who was five years younger than her. Like most siblings, they had their moments, but Emily was incredibly protective of him, especially after he was diagnosed with Asperger’s. She had a big heart, a great sense of humour and a strong independent streak. She loved dancing at Club 68 and carried that same spark into adulthood. Her friends would describe her as loyal, funny and always up for a good time.
In 2012, as a teenager, Emily moved with us to Perth in Western Australia. She settled well and built a life of her own, working as a bar manager at a golf club in Mandurah while also doing promotional modelling. She was full of life, living independently and working hard.
In early 2016, everything changed when Emily lost a lot of weight and suffered a major seizure at work.
She was taken to Peel Hospital in Mandurah, where a CT scan showed nothing. At that stage, nobody suspected a brain tumour, and she even continued driving and working for a short time. We simply thought she was overdoing it. But the episodes continued, including strange déjà vu sensations where she knew something was coming. I found her during another seizure and took her back to hospital, where at one point they even investigated a possible heart condition. We knew something wasn’t right, but we had no idea how serious it was.
Because we weren’t permanent residents, Emily saw a private neurologist and had an MRI scan. I had worked in an MRI department, so I believed we would be told quickly if anything serious showed up. But no one contacted us. Weeks passed and the seizures continued. It was only when Emily chased the neurologist herself, around 10 weeks later, that everything changed. That evening we were told to come in the next morning, and I remember her saying, “I’ve got a brain tumour, haven’t I?” I still tried to reassure her, unable to believe something so serious could have been missed.
The next day, the neurologist confirmed it was a brain tumour, admitting the scan had not been reviewed sooner. I was in shock and went straight into autopilot, focused only on getting her the help she needed. That same afternoon she had another scan, and we were sent to Charlie Gardiner Hospital in Perth, where a surgeon confirmed the diagnosis and said she would need surgery within two weeks.
Because the tumour was on the right side of her brain and Emily was left-handed, there were concerns about how much could safely be removed without affecting her speech or sight.
She underwent a long operation in August 2016, and while the surgeons removed as much as they could, they were unable to take it all away.
We had been warned that when Emily came round, she might not recognise us or be able to speak properly, so we were preparing ourselves for the worst. But when we walked into her room afterwards, she looked at her dad, who loves Star Wars, and made a little Star Wars noise at him. We all just burst into laughter and tears at the same time. It was such a relief. She was still our Emily. In that moment, the three of us – me, her dad Martin, and her brother Matthew – truly believed she was going to be okay.
The diagnosis that followed was a stage 3 astrocytoma, and Emily began treatment with extraordinary strength. She underwent 33 sessions of radiotherapy alongside chemotherapy, but before treatment started, she made sure her eggs were harvested. That mattered so much to her because becoming a mum was all she had ever really wanted. Even in the middle of all that fear and uncertainty, she was still thinking about a future and holding onto hope. She was determined not to let the tumour define her.
In the months that followed, Emily also met someone and fell in love. They got engaged, and because time suddenly felt so precious, plans were made to bring the wedding forward. We didn’t know how long she had, but we wanted to make those memories while we could.
In January 2017, after another scan and more seizures, we were given the devastating news that Emily’s tumour was terminal. I remember it so clearly because it was also the day her nana died back in the UK.
It was just unbearable. We barely left the house for days because we were numb. Emily was heartbroken, and I think from that moment I went into fight mode. I researched everything I could get my hands on, desperate to find something, anything, that might help.
Despite the news, the wedding plans continued and people around us rallied beautifully. A neighbour who worked in events helped organise everything in just a few weeks. But before the wedding could take place, Emily’s condition worsened again and she needed another operation to debulk the tumour. Still, she was determined to enjoy what she could. We took her on her hen do in a limousine with her friends around her, and although she was in a wheelchair and having mini seizures throughout the day without telling anyone, she smiled her way through it. By then the dexamethasone – a steroid medication – had caused her to gain a huge amount of weight in a short space of time, and she was very swollen, but she still wanted that day and still wanted those memories.
A few days later she became seriously unwell and was admitted to hospital with a collapsed lung and neutropenia. It was there, just a week before the wedding, that everything changed. While she lay in hospital, vulnerable and unwell, her fiancé called to say he no longer wanted to marry her.
In that moment, the future she had been holding onto disappeared.
Emily handled it with a strength I still struggle to comprehend. She simply said that if that was how he felt, then the wedding should be cancelled. But the impact of that moment was devastating. She was already facing a terminal diagnosis, coping with the physical effects of treatment and the loss of the future she had imagined, and suddenly this final piece of hope was taken away as well. It completely shattered her.
After that, Emily said something that changed everything: “Mum, I don’t want to die in Australia. I want to go home.” We arranged for her to return to York to see her friends, and when she did, it was like something lit up inside her. Surrounded by the people she loved, she became herself again, stronger, brighter and more determined. When we returned to Australia, she was certain, she wanted to come home for good.
So, we sold what we could, put the house on the market, gave up jobs, packed everything in and returned to the UK in the summer of 2017. It was a huge upheaval. We had very little money, nowhere permanent to live, and so much else happening around us, but none of that mattered more than Emily. We got her home. She came under the care of Castle Hill Hospital in Hull and continued treatment there, including temozolomide. For a while, once she was back in York surrounded by her friends and family, she seemed to improve. She looked amazing, she went out with her friends, and we allowed ourselves to hope again. We thought perhaps she might somehow beat it.
But brain tumours are cruel and unpredictable, and the improvement didn’t last.
Towards the end of 2018, Emily began suffering severe headaches, problems with her vision and a loss of appetite. Scans showed that the tumour was progressing quickly.
We looked into every option we could, including trials and treatment in Germany, and once again people rallied around us trying to raise money and help. But things moved too fast. By early 2019, Emily had deteriorated badly. She was in terrible pain, lost the ability to walk and became hypersensitive to touch. Even the gentlest contact could hurt her. Watching her go through that was devastating because there was so little I could do to ease it.
Eventually a palliative care nurse suggested that the best thing was to move Emily into a hospice so they could get her pain under control. I think deep down we both knew she would not come home again, even though nobody really said it out loud. She went into the hospice in March 2019 and declined quickly from there.
Even then, she was still Emily. She still made people laugh. She still had that same sense of humour. She never once said, “Why me?” Not once. She accepted what was happening with more courage than I can ever put into words. Because she was so fiercely independent, she didn’t want strangers doing her personal care, so I stayed with her and did everything I could for her myself. It was the hardest thing I have ever done, but I would have done anything for her.
During this time, I would sit for hours tracing every part of her face, knowing the day would come when I wouldn’t be able to see her anymore.
Even while you are still caring for someone and willing them to survive, part of you is already grieving. That is the cruelty of this disease too. It steals from you long before the person is gone.
Emily died on 24th April 2019 at 10.10pm, with all of us around her. We had Dirty Dancing playing because she absolutely loved Patrick Swayze. She had adored him for years and we used to laugh about how upset she had been when he died. So that night we played the film and the music over and over again, and that is how we said goodbye to her. She went with her family beside her and with love surrounding her.
What stays with me most, when I think about Emily now, is not just how much she endured, but who she remained through all of it. She was funny, loyal and full of love right until the end. Even while she was going through chemotherapy and could no longer work, she still wanted to help people. That was just who she was. She cared deeply, made people laugh and never stopped thinking of others. She had every reason to ask why this was happening to her, but she never did. She just kept going.
Emily’s story is one of heartbreak, but it is also one of courage, love and resilience. It is the story of a young woman who should have had so much more time, and of a family who did everything they could to hold onto hope and make every moment count. It is also the reason I now speak out. I want people to understand that brain tumours don’t discriminate. They can take babies, teenagers, young adults and parents. They can turn lives upside down in an instant. What happened to Emily should not happen to anyone.
That is why I am determined to keep telling her story.
I now run a business - EmAble - inspired by what Emily went through, designing clothing for people living with cancer so they can feel more comfortable and dignified throughout treatment.
It is one small way of trying to make a difference, because I could not save Emily, but I can still do something in her name and support the vital work of Brain Tumour Research.
If there is one thing I would say to anyone facing a similar journey, it is this: cherish every moment. Reach out for help. Talk to people. Let others support you. However hard it is, make every day count. And above all, keep pushing for change, because until more is done to fund research into brain tumours, too many families will continue to lose the people they love most.
Joanne Nicholson
September 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 touched by Emily’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.
