Edward Lewis, a loving father from Bishop’s Stortford, Hertfordshire, endured a harrowing ordeal when his inability to speak and read bedtime stories to his children was dismissed as anxiety.
The 36-year-old had sought medical help, visiting his GP and consulting various psychologists on multiple occasions.
However, his episodes of speechlessness were attributed to panic attacks.
Edward was diagnosed with anxiety and prescribed anti-depressants, but it wasn’t a psychological condition that was to blame.
It wasn’t until June 2022 that Edward received the devastating news.
He was diagnosed with an incurable oligodendroglioma, a type of brain tumour.
Reflecting on his experiences, Edward said: “During 2019, I started experiencing strange sensations where I was occasionally unable to speak for about five to 15 seconds.
“I could be in a high-pressure situation, like delivering a presentation at work, or reading a bedtime story to my young daughters and suddenly I couldn’t get a word out.”
He added: “The medication didn’t stop these episodes.
“In retrospect, I should have done more to get to the bottom of what was happening, because post-surgery they stopped, and were likely focal seizures I had been experiencing.”
The severity of Edward’s condition became clear in the early hours of June 14th last year when he suffered a full tonic-clonic seizure while in bed with his wife Gayle. Rushed to Princess Alexandra Hospital in Harlow, Essex, a CT scan revealed a sizeable 6cm mass nestled in the middle of his brain.
Edward said: “I don’t remember any of it, but afterwards Gayle told me how traumatising it was for her. Apparently, I was grunting and making violent physical movements.
“Larna, who was only two at the time, was in bed with us as well. She woke up and asked ‘Mummy, why is Daddy dancing?’ I really hope she doesn’t remember seeing me like that.”
Edward was referred to Queen’s Hospital in Romford, Essex for surgery in July 2022. The operation aimed to remove as much of the tumour as possible, but due to its precarious location near vital blood vessels, complete removal was not feasible. Edward’s surgeon cautioned him about the potential risks, including the possibility of a stroke or waking up as a different person.
Thankfully, the surgery was deemed a success, with approximately 70 percent of the tumour removed. Edward then underwent radiotherapy and chemotherapy as part of his treatment plan. He completed his last chemotherapy session in June 2023 and continues to undergo regular MRI scans every three months, which have shown stable results thus far.
Edward’s prognosis remains uncertain, prompting him to explore holistic therapies and adopt a healthy lifestyle – watching what he eats and exercising regularly. Despite the challenges he has faced, Edward returned to work in January this year and relishes spending precious moments with his daughters, Larna and Darcy.
Driven by his personal experience, Edward has joined forces with the charity Brain Tumour Research to raise awareness and garner support for their petition. The petition aims to secure 100,000 signatures, urging increased funding for brain tumour research.
Edward said: “It’s so important that more in invested in brain tumours, to improve the outcomes for patients. When I was in the neuro intensive care ward after surgery, I did have a moment when I thought ‘this is so unfair, I’m so young’. But actually I soon realised I was the luckiest person in there.
“Some people couldn’t communicate or move at all. I also know some people with this diagnosis are much younger than me.”
Charlie Allsebrook, the community development manager for Brain Tumour Research, said: “We are grateful to Edward for supporting our petition and helping to raise awareness.
“For to long governments have put brain tumours on the ‘too difficult to think about’ pile.
“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”
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