Craig Alexander is no longer able to work and had to elarn how to talk again
An architect put his headaches down to “work stress” – until a seizure revealed the devastating truth. Craig Alexander, then 35, had suffered with headaches and dizziness for years, which he put down to tiredness and dehydration from long hours working as an architect.
Craig, now 38, from Monmouth, Wales, also had tremors and visual disturbances which he put down to stress. But in early May 2023, he had a tonic-clonic (grand mal) seizure while in the car with a colleague, which saw him lose consciousness and begin jerking for several minutes.
He was rushed to hospital and a scan found a large tumour, 75mm by 35mm, deep and central in his brain – an astrocytoma. He had surgery as well as radio and chemotherapy which left him unable to walk or speak afterwards, due to the location of the tumour.
Craig is no longer able to work and is now an advocate for further research into brain tumours – and has regular scans to monitor the mass. He said: “Looking back, there were warning signs – but I put it all down to tiredness, dehydration and long working hours.
“Nothing prepares you for being told you have a brain tumour. One moment I was working, travelling and living my life as normal, and the next I was facing major brain surgery and the very real possibility of losing my independence.
“Because of the catastrophic risk of further impairment, there are no surgical options left for me. I live with a tumour. Right now, my focus is on my health and rebuilding my energy.”
After Craig’s shocking seizure he was blue-lighted to Hereford Hospital where an MRI was carried out and the mass was found in his brain. He said: “I was referred to the Queen Elizabeth Hospital in Birmingham where I had a more detailed contrast MRI.”
He was told he had a tumour which had most likely been growing slowly for years. He was prescribed steroids to control his seizures and told he was no longer able to drive.
Craig was warned if the tumour continued to grow, he could lose his sight, mobility or worse – and underwent a seven-hour craniotomy to get a biopsy. He said: “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.”
He got private speech and physiotherapy due to NHS waiting times, and has now almost fully recovered. Craig said: “I still drag my left foot occasionally and my left side remains noticeably weaker.”
He had chemo and radiotherapy, which left him sleeping for 15 to 18 hours a day, and he still suffers with fatigue. He eventually stopped working as a result and needs regular scans to monitor the condition of the tumour.
He said: “Radiotherapy and chemotherapy treatment saved my life, but it has also changed it forever. I’ve had to give up my career, live with ongoing fatigue and uncertainty, and learn to accept a new version of myself. Brain tumours don’t just affect your health, they take away your future plans, your confidence and your sense of normality.”
Craig is supporting the launch of a manifesto for Wales by leading charity Brain Tumour Research at the Senedd today (March 11) that calls for urgent action to transform outcomes for brain tumour patients.
Craig said: “Something as basic as getting a blood test before a contrast MRI became a major ordeal at one point I had to travel to Hereford (from Wales) just to have my bloods taken.
“There is a real lack of joined-up care and follow-up, and it often felt like I was falling through the cracks. When you’re dealing with a brain tumour, you shouldn’t also have to fight the system to get the most basic parts of your care.”
Dr Karen Noble, Director of Research Policy and Innovation at Brain Tumour Research, said: “Brain tumours are the leading cause of cancer death in children and young people, yet patients (in Wales) are being locked out of innovation.
“Our manifesto for Wales is a clear, evidence-based roadmap to change by expanding access to clinical trials, embedding whole genome sequencing into standard care, and committing to targeted research funding. The time to do things differently is now.”
