Stewkley woman whose husband was given just 12 months to live after devastating brain tumour diagnosis raises £11,000 in bid to find a cure

A woman from Stewkley has raised more than £11,000 for vital research after her husband was diagnosed with a terminal brain tumour and given just 12 months to live.

Emily Penwright’s husband, Simon, was diagnosed with a multifocal glioblastoma (GBM) after waking in January with a severe headache and a foul but inexplicable taste and smell, later identified as seizure auras.

Simon, 52, an operations director, underwent surgery followed by three weeks of high dose radiotherapy and chemotherapy and is now undergoing further chemo. Sadly, he has been given a shockingly poor prognosis of just 12 months.

Emily, 46, said: “Si was so healthy that he never even took paracetamol, then, all of a sudden, on January 24 he woke up with a really bad headache and this awful sense of smell and taste. It was really strong and really foul but he couldn’t identify it. I was so worried about him.

“I rang 111 and was put down for an urgent call back but, having still not heard anything 45 minutes later, I turned to our GP next-door neighbour for help. He came straight round to check Si over. Everything was fine until he did a vision check and found he had lost his left peripheral vision at which point he told me to take him straight to A&E.

“Si was seen by countless medical staff but it was after he had a CT scan that we were told they’d found a mass at the back of his head. He was admitted for four nights, which is when we learned he had a glioblastoma (GBM).”

In February, Simon underwent a debulking surgery. He recovered well but a week after being discharged, his seizures returned and he was readmitted for five days. It was then he was given the results of his biopsy, which revealed his tumour is a multifocal glioblastoma (GBM).

“We were told of the two types of multifocal GBM he could have, his is the most unfavourable as it’s most resistant to chemo,” said Emily.

Simon is now undergoing temozolomide chemo, which he will take for as long as it continues working. In March, he served as best man at his brother’s wedding and earlier this month he attended a Brain Tumour Research fundraiser organised by his wife and her friends.

The race night, held at the Southcott Village Residents’ Association (SVRA) in Linslade, was a roaring success. It held an at-capacity 80-strong crowd and included a raffle, with prizes generously gifted by the community and an auction with a week’s stay in Cornwall and a Redbull Racing cap signed by Max Verstappen among lots sold.

Emily, a school admin assistant, said: “My daughters set up a GoFundMe page to raise funds for Brain Tumour Research after learning about the severity of Si’s tumour. They said they knew people would want to help, and they were right because the pennies started rolling in straight away. The idea was to help other families so they don’t have to experience what we are in the future.

“On the back of that, I, with the help of three close friends – Louise Isaac and Claire Charlotte, from Linslade, and Sam Boulting, from Cornwall – decided to arrange a race night fundraiser for which we set up a JustGiving page.

“The SVRA gave us the hall for free and people from there compered for us. It was an absolutely phenomenal night. Everyone was just gushing after about how well it went and what a good time they had.

“Simon hadn’t been very well the week before but, thankfully, his steroid dose was increased and that brought things under control. He took his chemo tablet at the event and managed to last the night. I had planned to take him home if needed but we were both buzzing and that wasn’t necessary.”

She added: “Ours is a true love story, we really are soul mates and the situation we find ourselves in isn’t the happy ever after we wanted, but we’re making the most of it and trying to stay as optimistic as possible.

“Things are up and down but we just live day-by-day now whilst trying to remain as positive as we can. There are exceptions to every 12-month prognosis and if anyone can live 10 years with this, it’ll be Si.”

With both fundraising pages, and a few other events, including Wear A Hat Day at Maisie’s school and a bingo night at The Carpenters Arms pub, Emily and her friends and family have raised more than £11,000. This is enough to sponsor four days of research at one of the charity’s four Centres of Excellence, each one costing £2,740.

Charlie Allsebrook, community development manager for Brain Tumour Research, said: “Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002. This has to change. We wish Simon all the best with his ongoing treatment and are so grateful to Emily and her friends and family for their tremendous fundraising efforts. Together we will find a cure.”

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

You can support Emily’s fundraising page here.