Our story
“I’m Claire Brown, from County Down, and I work in the Department of Education. On 31 March 2025, my husband Alex, 53, became one of the many people affected by a brain tumour.
Alex’s symptoms developed gradually: fatigue, severe headaches, vision issues, and cognitive changes. Eventually, his tumour grew so large that it increased the pressure in his skull, causing him to collapse in our family home.
We sought advice from our GP and we were told to attend A&E. After a 12-hour wait and a CT scan, we received the devastating news — Alex had a brain tumour, later diagnosed as astrocytoma grade 4.
Before his diagnosis, Alex worked five to six days a week as a painter and decorator. We have three daughters, aged 27, 15, and 12.
The journey
The emotional impact on our family is impossible to fully capture: the overwhelming shock, the grief for the life you thought you had, the constant uncertainty, and the quiet, relentless fear of what the future might hold…..
Claire
I have never felt so helpless or afraid.”
Sixty percent of brain tumours are diagnosed in A&E — often when patients present in acute crisis.
Alex’s symptoms had worsened rapidly. Over two years, despite multiple GP visits, his symptoms were repeatedly attributed to stress and anxiety. We were incredibly fortunate that the A&E doctor chose to order a CT scan. That single decision changed everything.
Doctors pushed for an urgent MRI, but the specialist neuro‑oncology team who needed to review it met only once a week. Every day without answers felt unbearable.
Instead of being given a bed, Alex spent two days lying on a hospital corridor. When he was finally admitted, we waited another 10 days for the MRI he urgently needed — not because his case wasn’t serious, but because the system was overwhelmed. And without that scan, no one could tell us what was happening inside his brain.
Was it cancer? Was it treatable? Were we losing precious, irreversible time? The waiting was unimaginable torture.
To keep him stable, Alex was placed on high‑dose steroids and anti‑seizure medication to reduce the pressure in his skull and prevent further complications. After the MRI, Ulster Hospital sent us home to wait for an appointment with a neurosurgeon in the Royal. All we knew was that he had a brain tumour that was suspected to be malignant.
Once home, everything became even harder. The medication began to affect his mind, and he experienced episodes of psychosis. We watched his physical and mental health deteriorate, yet we had nowhere to turn — we had been discharged, and neither the GP nor the hospital could offer support.
The medication made Alex feel so unwell that he started refusing doses, and I was terrified. We had already been warned that the pressure in his skull could cause a brain bleed and that missing or reducing his medication was dangerous. I have never felt so helpless or afraid.
Shock diagnosis
It was another two weeks before we finally met the neurosurgeon at the Royal Victoria Hospital. Nothing could have prepared us for what she told us. The tumour was malignant, incurable, and believed to be a high‑grade mass that had been developing and transforming for some time. Surgery was offered — not as a cure, but to debulk the tumour and give Alex the best possible chance of stability. We were shown his scans for the first time, and the reality was overwhelming. The tumour was the size of a tennis ball — approximately 7.5 × 5 cm — a life‑threatening mass dominating the left side of his brain. We were warned that surgery carried significant risks, including permanent brain damage and even death.
The wait was unbearable. I sat there wondering if he would survive, if he would ever walk or talk again, if he would still be my Alex when the surgery was over.”
Claire
Leaving the hospital that day without Alex again, I was utterly devastated. I felt shocked, overwhelmed, and if I’m honest, traumatised. I had held it all in, not wanting him to see me fall apart. The moment I reached the car I broke down sobbing and even vomited from the sheer panic of imagining life without my husband.
Our whole family had been waiting for reassurance, hoping — just as we were — that the tumour could be removed and cured. Instead, I had to walk through the door and tell them something very different. I found myself trying to reassure our family that the surgeon would do everything she could, even though inside I was terrified and felt completely alone. I couldn’t believe this was happening to us.
Surgery
On 23 April 2025, Alex underwent an emergency six‑hour craniotomy at the Royal Victoria Hospital. The tumour was in the left frontal lobe — the area that controls speech, mobility, personality, and so many of the things that make someone who they are.
The wait was unbearable. I sat there wondering if he would survive, if he would ever walk or talk again, if he would still be my Alex when the surgery was over. Remarkably, the surgeon was able to remove 90% of the tumour — far more than anyone expected. She didn’t just perform an operation; she saved his life and gave us precious time.
Alex woke with 42 staples and a scar stretching from ear to ear. His face was swollen and badly bruised. When I first saw him in ICU, it took a few seconds to even recognise him. I was relieved beyond words — but terrified to touch him, afraid I might hurt him if I tried to hug him. Instead, I squeezed his hand, smiled, and told him I loved him.
Just five days later, he was allowed home — bruised, battered, and looking like he’d gone a few rounds with Mike Tyson and lost badly. After nearly a month in hospitals, I had missed him terribly, especially the simple moments you never think to treasure: walking our dog Gus together, hearing him come through the door after a day’s work, or sitting with a cup of tea in the evening talking about nothing and everything.
The best way I can describe his changes after surgery is this: Alex was a 10 before; he’s now a seven — for now. But we will forever be grateful to his surgeon. She gave us more time. She gave us hope.
Treatment and reality
Five weeks later, Alex began radiotherapy and chemotherapy. Overnight, our lives became a relentless cycle of appointments, scans, fatigue, nausea, and difficult side effects. We didn’t even know his exact tumour type until 24 hours before treatment started, because his biopsy had been sent to London for specialist testing — a process that took four agonising weeks. Knowing that some tumour types have better prognoses than others made the wait almost unbearable.
We begged for the results over the phone because we couldn’t face another torturous wait outside a consultation room to hear our fate. I had still been holding on to a little hope that it might be a low‑grade tumour — a grade 1 or 2, something not as bad as they feared. Hearing the real result — a grade 4, and not the tumour type we had hoped for — felt like receiving devastating news all over again.
The chemotherapy Alex receives is the only drug the NHS offers for his tumour type — and it hasn’t changed in more than 35 years. It even carries a risk of secondary cancer, yet it remains his only NHS option. We explored other treatments, but the costs are far beyond our reach, and no clinical trials are available to him because of the postcode lottery. It often feels as though every door is closed before we can even try to open it.
And then there’s the scanxiety — the fear that grips you before every MRI, knowing the future could change in an instant. For now, Alex’s cancer is stable, and we are grateful for every single day. The statistics are terrifying — only 13% of adults with a high‑grade brain tumour reach five years — but Alex has already shown a determination far stronger than any number. In my heart, I believe he will go further than anyone expects. Northern Ireland may have some of the toughest outcomes, with limited access to trials and new treatments, but we hold on to hope every single day.
Life after diagnosis
Physically and mentally, this journey has been brutal for Alex. He has had to give up work, surrender his driving licence, and cope with psychiatric, emotional, and cognitive changes that most people will never see. He is not “fine,” even when he tries so hard to appear that way — and I am so incredibly proud of him for the strength and courage he shows every single day.
Our finances changed overnight, but support from charities like Macmillan and my Civil Service sick pay policy were absolute lifelines when we needed them most.
Through all of this, our children have shown remarkable resilience. I tried to balance caring for Alex, spending long days and nights in the hospital, supporting the younger girls at home and at school, and somehow finding the strength to return to work. I could never have managed without the unwavering support of our family, friends, and colleagues, who carried us through with their kindness, practical help, and constant compassion.
This diagnosis changed everything, yet every day of Alex’s “bonus life” is cherished beyond measure. He is my absolute rock — I cannot imagine life without him, and I love him more than words can ever express.
Why we’re sharing our story
For too long, brain tumour symptoms have been dismissed, misunderstood, or overlooked. Families like ours are left to navigate fear, confusion and life‑changing news that might have been very different if action had come sooner.
We find ourselves asking why, after paying into the NHS and working all our lives, we cannot access the treatment we know could help. It may not be a cure, but it could give us precious time — time that means everything to us. And because we cannot get it here, we are now paying for private treatment abroad — something no family should ever be forced into just to have a chance at more time together, especially when some of these alternative options are showing promising results elsewhere.
Claire
Brain tumours are the least survivable cancer, yet they receive some of the lowest levels of research funding. This imbalance is not only heartbreaking — it’s unacceptable.
We speak up because families should not have to rely on luck or perfect timing. We want earlier detection, better treatments, and a healthcare system that gives people a genuine chance. By sharing our story, we hope to raise awareness and push for the change that is urgently needed. Our lives depend on it.”
Claire’s Big Bake at her workplace is set to take place on March 24th and she has already raised more than £1000. You can donate to Claire’s Big Bake here.
Would you like to share your story with us? Brain Tumour Awareness Month is the perfect time to get involved and raise your voice.