Craig Alexander, 38, is an architect from Wales whose life changed in an instant when he was diagnosed with an astrocytoma, in May 2023.
What began as subtle symptoms such as headaches and dizziness, Craig attributed to stress until he suffered a tonic-clonic seizure while travelling with a work colleague, leading to the discovery of a large tumour deep in his brain. Since his diagnosis, Craig has undergone major surgery, radiotherapy and chemotherapy, and is now living with the long-term physical, cognitive and emotional effects of both the disease and its aggressive treatment.
Craig tells his story....
I was 35 at the time and, looking back, there were warning signs. I had slight weakness down my left side, a tremor and headaches. I’d also started experiencing visual disturbances flickering and black spots, but I put it all down to tiredness, dehydration and long working hours. My glasses were up to date, so I didn’t think an eye test was necessary.
Then in early May 2023, everything changed. I had a full-blown tonic-clonic seizure. Luckily, I was a passenger in a car with a colleague at the time.
I was blue-lighted to Hereford Hospital where they carried out an MRI scan and found a mass on my brain.
I was still recovering from the seizure when my parents arrived at the hospital and were understandably terrified. Strangely, I was calmer than they were. I’ve always been logical and pragmatic, and I went straight into problem-solving mode.
I was referred to the Queen Elizabeth Hospital in Birmingham where I had a more detailed contrast MRI. That’s when they told me I had a large tumour, 75mm by 35mm, deep and central in my brain.
Hearing that was frightening. The consultant explained it had probably been growing slowly for years.
I was prescribed steroids to control seizures and told I could no longer drive. Losing my licence was devastating, it took away my independence overnight.
A biopsy was needed to confirm the diagnosis, and surgery was advised. I was told that if the tumour continued to grow, I could lose my sight, my mobility or worse. I underwent a seven-hour craniotomy. The risks were stark, everything up to and including death, but surgery was the only realistic option.
Because of the tumour’s size and its location deep in my brain, they were only able to remove a very small amount, just enough tissue for a biopsy. The diagnosis was an astrocytoma.
The impact of the surgery on my brain was catastrophic. The only way I can describe it is like having a stroke. Because the tumour was centre-right, afterwards I couldn’t walk and I couldn’t speak. It was an incredibly traumatic experience.
My parents became my fiercest advocates. They fought tirelessly to get me speech and physiotherapy, and in the end we paid privately because the NHS waiting times were so long. Before surgery, I never struggled to find words. Now, I’m aware that I’m not as articulate or quick as I once was. I’m incredibly fortunate to have almost fully recovered, but I still drag my left foot occasionally and my left side remains noticeably weaker.
Because so little of the tumour could be removed, radiotherapy and chemotherapy were recommended. Like many people, I was more afraid of chemotherapy due to it's 'pop culture' reputation, so I went into radiotherapy with fewer concerns. I was warned about fatigue, but nothing prepared me for the reality. It hit like a freight train.
I was sleeping 15 to 18 hours a day and still waking up exhausted. It felt like my life force had been drained out of me. Even now, fatigue remains one of the most difficult and limiting effects.
I tried to return to work as an architect. My employer was incredibly supportive and phased my return, starting with two mornings a week and gradually increasing hours. But it became clear that full-time work wasn’t sustainable. I didn’t even have the energy to cook a meal. Eventually, I had to make the heart-breaking decision to give up my career for which I had studied and practised for a decade to reach chartership status.
I had chemotherapy in tablet form, which was preferable to intravenous treatment, but it was still long, relentless and miserable.
I now live scan to scan. Initially, I had MRIs every three months, and now it’s every six. Scan anxiety is very real. Any new symptom, a headache, an eye twitch, triggers fear and uncertainty.
My advice to anyone newly diagnosed is to trust the process. The frontline oncology and surgical teams really do know what they’re doing. You’ll be overwhelmed with facts, statistics and frightening information. My advice is to avoid Dr Google and try to stay positive.
It’s not just about finding a cure, though that would be incredible. We also desperately need more humane, precise and targeted treatments. Radiotherapy felt like carpet bombing. Even though there was a large target in my case, it felt as though my entire body had been nuked.
I’m 38 and no longer working, which is a huge personal tragedy. Advances in targeted genetic treatments could make a real difference for people like me. I even asked about clinical trials, but none were available to me at the time.
Because of the catastrophic risk of further impairment, there are no surgical options left for me. I live with a tumour. We monitor it, knowing that as a grade 2 tumour it may mutate to a higher grade in the future, which would mean more chemo and radiotherapy.
Right now, my focus is on my health and rebuilding my energy. I’ve explored consultancy work with my former employer, but brain fog and memory issues made it difficult. Architecture is a highly technical profession; recalling regulations and planning policies accurately is essential, and that became a real challenge.
I briefly regained my driving licence as it was more than 12 months between seizures, but unfortunately I had a nocturnal seizure so the clock has been reset once again. Living in Monmouth, with a Welsh GP, whilst receiving the majority of treatment in England, where my first seizure happened has caused significant cross-border challenges and a great deal of both personal and parental angst.
Something as simple as getting a blood test before a contrast MRI became a major ordeal. At one point, I had to travel back to Hereford Hospital in England just to have bloods taken. I even contacted my MP, who helped resolve the issue.
There is a clear lack of joined-up follow-up care for brain tumour patients in Wales. My GP received letters about my diagnosis and treatment, but I didn’t actually see them during treatment. Welsh brain tumour patients need far more support. Navigating these systems while seriously unwell adds unnecessary stress for patients and families.
In Wales alone, 674 people are diagnosed with a brain tumour each year, and tragically only 17% of patients survive their diagnosis. This is why raising awareness, funding research and pushing for better treatments and care is so vital.
Craig Alexander
March 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 Craig’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
