Shane Crommer, 35, from Nottingham, began experiencing fatigue, headaches, confusion, imbalance, and double vision in autumn 2025. After his symptoms worsened and initial treatment for migraines failed, Shane returned to Queen’s Medical Centre, where scans revealed a mass on his brain. Further scans and a biopsy confirmed a diagnosis of diffuse midline glioma with a rare mutation, with multiple tumours present across his brain. Shane has since completed 30 sessions of radiotherapy and is currently being assessed for a clinical trial involving an experimental drug. Supported by his wife, Laura, and their young son, Elijah, Shane is sharing his story and supporting the launch of the Brain Tumour Research Centre of Excellence at the University of Nottingham to help raise awareness and improve outcomes for people affected by brain tumours.
Shane tells his story, with support from his wife Laura…
Before all of this, life was busy in a good way.
Laura and I live in Nottingham and we got married on 21st November 2025. We’ve got a little boy, Elijah, who’s 20 months old now, and we’ve always been an active family – Elijah loves being outside. Keeping active has always been a huge part of who I am.
In my early twenties, the gym stopped being something I did occasionally and became a lifestyle. It changed the trajectory of my life. I started making better decisions, focusing on my health, and staying consistent. Eventually, I built a career around it. I worked as an online coach, helping people lose weight, build muscle, and create healthier habits, and I also worked as a content creator, making branded content and ads for social media and websites. So, when I started feeling ‘off’, my instinct wasn’t to panic. I explained it away.
It’s hard to pinpoint exactly when it began, but the earliest symptom was fatigue. I was just tired all the time. Then my vision started to change.
I was getting blurred vision and double vision, but because I’ve worn glasses and contact lenses most of my life, I didn’t think it was serious. I assumed my prescription needed updating.
Headaches started creeping in, and I became more forgetful and confused. I’d lose my keys and felt less sharp. Each symptom on its own felt insignificant, but looking back, they were all connected.
Laura noticed the change before I really did. She says it was weeks, possibly even a couple of months, of me being more tired and less ’on it’ than usual. I’m not someone who complains, so I carried on, took paracetamol, tried to rest, and told myself I’d be fine. By October 2025, my vision problems were getting worse, and I started feeling off balance too.
Laura urged me to see an optician, so we went to one in Hucknall. They couldn’t find a clear cause but advised that if things didn’t improve within 24 to 48 hours, I needed to be seen urgently. They didn’t improve. Within days, I was sleeping on and off throughout the day, my workload was suffering, and the headaches had changed. It felt like constant pressure behind my right eye and ear, and paracetamol didn’t help. Laura told me I needed to go to A&E.
I went to Queen’s Medical Centre, but Laura couldn’t come in at first because she was at home with our toddler. Looking back, that mattered. I wasn’t in the best state to advocate for myself, and I was sent home from the Urgent Treatment Centre with migraine medication.
The medication helped slightly, but not enough. I was still exhausted, struggling with my vision, and unsteady.
I started losing my balance more often, and on one occasion I went to pick up Elijah and gently fell onto the bed with him. When it happened again, Laura knew it couldn’t be ignored.
We rang 111 and I was advised to take high-dose aspirin. It eased the pain, but the symptoms didn’t resolve. Laura pushed for an urgent GP appointment, where we were seen by a nurse. She was brilliant. By then, my symptoms were obvious. I was unsteady, weak when standing, and stumbling before finding my footing.
Laura asked the nurse to print out her concerns, and we went straight back to Queen’s Medical Centre. This time, things moved quickly. A CT scan was completed, bloods were taken, I was moved into a quieter area of A&E, and we were taken into a private room. Not long after, we were told they had found a mass on my brain. At that stage, they didn’t know what it was, only that it was there.
I didn’t feel instantly panicked, but Laura will tell you I wasn’t fully registering what was happening. I was confused and forgetful, with gaps in my memory. At one point, I woke up on the neuro ward and started walking around looking for my son, and a nurse had to explain there were no children on the ward. Laura ended up managing my phone because I wasn’t myself.
Further scans, including an MRI with contrast, showed the cause of my symptoms. I had hydrocephalus, caused by the tumour blocking the normal flow of fluid in my brain and creating a build-up of pressure. The plan was an endoscopic third ventriculostomy to relieve it. However, because I had been prescribed high-dose aspirin, which thins the blood, the surgical team had to wait until it was safe to operate. Those days were some of the hardest, as I was still unwell and drifting in and out. The surgery took place in late October 2025, and it worked. I felt better almost immediately. I could get out of bed, walk to the toilet, and think clearly again.
Another MRI followed, and that’s when we learned there wasn’t just one tumour. There were multiple tumours across my brain.
Because the tumour on the thalamus was difficult to access, they biopsied a different tumour to get a definitive diagnosis. While we were waiting for results, there was discussion of glioblastoma which is the most aggressive and most common type of primary brain tumour in adults. The biopsy later confirmed something rarer, a diffuse midline glioma with a rare mutation which is an aggressive, high-grade brain tumour, most often occurring in children. It became clear that my treatment options were limited.
We were also given a timeframe. Worst case, around three months. Best case, nine to twelve. Hearing numbers like that at 35 and raising a toddler doesn’t feel real, but it lands. The hardest part wasn’t thinking about myself. It was thinking about Laura and Elijah, and what it would mean not to be here for them.
The only treatment offered initially was 30 sessions of radiotherapy, which I completed recently. The biggest challenge has been fatigue. Radiotherapy causes swelling in the brain, so my vision is still affected and I’m still dealing with the after-effects. As the sessions built up, the tiredness did too. I’m now learning how to live with a level of fatigue I’ve never known before. That’s been hard to accept.
I’ve always been an active and hands-on dad. Now, after I have breakfast with Elijah, I’m shattered and need to lie down.
I’ve had to learn to listen to my body and rest, so I can still be present later in the day. It’s frustrating because it’s not the life I’m used to.
I’m now being assessed for a clinical trial involving ONC201 which is an investigational oral cancer drug that targets mutant diffuse gliomas. A lot of this journey has involved self-advocacy and research, supported hugely by family. The reality of a trial is that there are no guarantees, and you may receive a placebo, but when you’re facing a diagnosis like this, you take the options available.
I also agreed for tissue from my biopsy to be used for genetic sequencing and research. It may not help me directly, but if it helps someone else in the future, it matters.
I want to share our story because brain tumours don’t get enough attention or funding. When you learn that brain tumours are the biggest cancer killer of under-40s, yet receive just 1% of national cancer research spending, it’s hard not to feel angry. All you can do is try to raise awareness and push for change.
That’s why the new Brain Tumour Research Centre of Excellence at the University of Nottingham means so much to me. It genuinely gives hope, especially because it’s for a cause that’s so close to home.
I’ve been trying to talk openly about my journey on social media, and knowing there will be a centre focused on high-grade brain tumours that can back that work, and that I could potentially get involved and help spread awareness for, is really meaningful. It makes you feel like something positive can come from something that’s been so difficult.
If there’s one thing Laura and I would want people to take from our experience, it’s this. If something doesn’t feel right, speak up. Trust the people close to you who notice changes in you. Ask questions and request for further investigation when needed. At the same time, try not to live in constant fear and don’t be afraid to reach out for support.
This diagnosis has completely shifted my perspective. I used to focus on work and always pushing forward. Now my focus is the present. Spending time with my wife and my son, enjoying the moments we do have, and not letting my mind live too far into the future.
Brain tumours don’t discriminate. Families deserve better options, better treatments, and better hope than currently exists. If telling our story helps raise awareness, encourages funding, or helps someone else get answers sooner, then it’s worth telling.
Shane and Laura Crommer
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 Shane’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.
