Sixty-three-year-old Wayne Lewis, a former RAF serviceman from South Wales, was diagnosed with a meningioma in July 2022 following a series of unexplained symptoms that culminated in a terrifying stroke. Wayne’s experience has led him to take on a 200km walking challenge in May to raise awareness and vital funds for Brain Tumour Research.
Wayne tells his story....
Looking back, I believe the earliest signs began in May 2022, while on holiday in Turkey. After a day in the sun, I collapsed in the bathroom without warning. Although I was unable to move or speak, I put the episode down to overindulgence and exhaustion. I just needed a doctor, but I didn’t want to ruin the holiday, so I carried on.
After returning home, things continued to feel off. I experienced unexplained fatigue, mood changes, veering while walking, dropping items from my left hand, and even blurry vision. I dismissed these as signs of ageing or the effects of a pending cataract operation.
All the signs were there but I brushed them off. Now I know better. This could happen to anyone. We need more awareness, more research, more support.
On 7th July 2022, my world changed in an instant. Preparing to drive my grandson to the airport for a holiday in Ibiza, I suddenly collapsed and began convulsing.
I couldn’t move or speak, but I could hear everything. I knew I was having a stroke. I was terrified, but looking back it saved my life, I would never have known I had a brain tumour.
Despite desperate 999 calls from my grandson and wife Caroline, no ambulance was available. I slowly regained limited speech and was eventually taken to hospital by family members. After tests and a CT scan at Princess of Wales Hospital in Bridgend, they sent me home with seizure medication and a promise of further referrals.
Just two days later, I woke in the middle of the night completely paralysed on my left side. Again, no ambulance was available, and I had to be taken to hospital by my family. Once again, the journey was scary, I remember being slumped in the back seat. A further CT scan revealed a suspected bleed on the brain. This time, they consulted with the Neurosurgical Department at University Hospital Wales (UHW) in Cardiff who advised an MRI scan.
I was admitted into the Princess of Wales Hospital in Bridgend where I had the MRI and further tests. I was advised to stay for two weeks until I could walk safely with aids.
When I returned home, I had a video consultation with a consultant neurosurgeon at UHW, who explained that the emergency MRI scan revealed the true cause of my symptoms was a meningioma brain tumour surrounded by fluid. She began to explain the risks such as permanent brain damage, my mental state of mind, and even death. She emphasised the urgency of removing the tumour which needed to be done within the next two weeks.
I felt like the world had just stopped. I asked myself, am I going to die? Telling our children and grandchildren was the hardest part.
I agreed to go ahead with the operation. During this time, I began preparing for the worst, even organising my funeral. It was how I coped. I needed to feel in control of something because it was total mayhem. The hardest part was letting go of my Volvo Car, my pride and joy retirement present to myself, because I had to surrender my licence not knowing if I would ever get it back. I would wake up all times of the night thinking of what was going to happen and how to deal with it, I would sit for hours just reading.
I found information on the Brain Tumour Research website, which was very helpful during this time, I think I read everything about meningioma tumours, the good outcomes and bad, but this helped me to deal with what was coming my way.
On the day of my surgery, I travelled with my wife and daughter, but the journey to UHW was scary and quiet.
Once I had my bed, I told them to go home, and I would speak to them after surgery which they reluctantly did. I think I cried for five minutes solid when they left not knowing if I would see them again.
I had my brain surgery on 5th August 2022 to remove the tumour. Although most of it was successfully removed, a small 3mm piece was left behind due to its attachment to a vital blood vessel.
When I woke up and heard the words ‘it went well’, I cried with relief.
Through determination and support from my physiotherapists and family, I was discharged within days. I have gradually built-up strength with daily walks, starting at just 40 steps and growing from there. My journey hasn't ended; three years since my initial diagnosis, I still go for regular MRI scans to monitor the remaining tumour tissue. So far, there has been no regrowth.
The statistics are shocking, just 1% of the national spend on cancer research has been allocated to this devastating disease, this has to change.
Inspired by my experience and driven by a desire to give others hope, I have signed up for Brain Tumour Research’s 200k in May challenge, walking 200 kilometres over the month to raise money and awareness. I am not just walking for myself, but also for my 29-year-old neighbour, who was diagnosed with a glioblastoma and recently underwent an awake craniotomy by the same surgical team that saved my life.
Her diagnosis hit me hard, she’s only 29. This disease doesn’t discriminate, it’s relentless. That’s why I’m taking part in 200k in May. For her. For me. For everyone facing this nightmare.
I am now driving again and trying to keep active best I can but very conscious that it could all change in a moment.
Wayne Lewis
April 2025