We are grateful to Simon, and his wife Emily, who worked with us in May 2023 to share his story here. Sadly, he passed away in November 2023. We remember Simon as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.
Operations director Simon Penwright was diagnosed with a multifocal glioblastoma (GBM) after waking with a severe headache and a foul but inexplicable taste and smell in January. The 52-year-old, who worked for a manufacturing machinery company and lived in Stewkley, Buckinghamshire, had been given a prognosis of just 12 months. He underwent surgery in February followed by three weeks of high dose radiotherapy and chemotherapy. He underwent further chemo, having just completed his second round of temozolomide.
Here is Simon’s story, as told by his wife Emily …
Simon and I met at a local pub six years ago. Within two years we had blended our families and moved in together; we each have two daughters. We bought our house in Stewkley and got engaged in March 2019. We married a year later, just before COVID-19 forced everything to stop. We finally got our honeymoon in Cape Verde last year, which was amazing.
“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.”
Si, as I call him, had no symptoms prior to being admitted to hospital, although in hindsight he had perhaps been a little more irritable than usual. He was so healthy that he never even took paracetamol, then, all of a sudden, on 24 January he woke up in the early hours 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 it.
“The consultant told us later that being unable to describe what the smell or taste was indicated to him that Si had been having seizures.”
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 Si had lost his left peripheral vision at which point he told me to take him straight to A&E. Si’s symptoms worsened whilst we were at Milton Keynes University Hospital. His headache would suddenly disperse and the intense taste and smell would come back, then he would vomit and his headache would return.
“He 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.”
At first they were just talking about cysts but then a consultant came in and said ‘we need to do an MRI to find out where this cancer is coming from’. We were shocked and couldn’t believe what had been said but no one would tell us anything more until after his scan, which, thankfully, showed he didn’t have any tumours anywhere else in his body.
“He was admitted for four nights during which time we learned he had a glioblastoma (GBM).”
We were warned not to google his diagnosis and told there would be a multidisciplinary team (MDT) meeting the following week to discuss his case. Like most would, I googled it almost straight away and had just found out about it being a terminal form of cancer when a poor medical student arrived to have a chat. Fortunately for him our family arrived minutes later.
Telling our families about his diagnosis was heartbreaking. We told them Si had gone into hospital and, after learning about the mass that had been found, they all came, his daughters, sister, brother, sister-in-law and parents. My mum was at home looking after our animals and my daughters who are a bit younger. We returned home numb, still trying to process everything that had happened.
“After the MDT meeting, we were shown an image of Si’s brain, which showed his tumour spread over the whole right side of it, literally half his brain consisted of tumour.”
The plan then was to operate on it in two stages, the first from the back of his head to remove the high-grade areas there and the second potentially two weeks later by entering from the front to do the same there. However, the surgery he had at John Radcliffe Hospital, Oxford, on 18 February went so well, with such a vast amount removed, and certainly more than they had expected, that the decision was made not to do the second surgery. Instead, we would treat the remainder of his tumour with radiotherapy and chemotherapy.
"Sadly, Si lost his left peripheral vision as a result of the surgery."
His tumour was pushing on his peripheral nerve and we were told they’d have to cut it. They reassured us though that he could live without it and his tumour would have taken it anyway if allowed to continue growing. This has been quite an adjustment for Si who loves cars but is no longer able to drive so has sold his Audi R8 and Tesla.
“Whilst recovering in hospital, I was told to take Si to the on-site Pret A Manger to get him a double expresso because the caffeine in it helps stimulate the brain.”
He was only on paracetamol and codeine so was in quite a lot of pain but a friend helped me take him down in a wheelchair, and it did help. One of his more unpleasant memories is having his first MRI scan after brain surgery, which he describes as ‘horrific’ because of the loud noise and the coldness he felt on his head.
A week after being home, Si started getting seizure auras again, the same foul smell and taste. It was happening every 12 minutes and his neurologist, who had given me his WhatsApp number, advised me of what to do and when to increase Si’s medication.
“He’s an amazing man and went above and beyond what’s expected of a medical professional by figuratively hand-holding me through everything over the weekend, even late into the night.”
On the Monday morning I was asked to bring Si into John Radcliffe where he was admitted for five days. His temperature spiked a few days later and no one knew why but we suspect it was related to him having COVID which showed itself the following week. We were given the results of Si’s biopsy, which revealed his tumour is a multifocal GBM.
“We were told of the two types of multifocal GBM he could have, his is the most unfavourable type as it’s most resistant to chemo.”
He was due to have six weeks of combined radiotherapy and chemotherapy but because his tumour involved such a vast area of his brain, the decision was made to do just three weeks, but at a much higher dose. He caught COVID after starting radiotherapy at GenesisCare, Milton Keynes, so it was arranged for him to be the last patient at each appointment and for him to enter via the back door. His chemo was delayed by a week and a half so lasted just two weeks after his bloods showed he had steroid-induced diabetes and needed medication to bring his blood sugars down.
“It was his brother’s wedding on 31 March and Si, as best man, managed to stand up and give a speech, and do it well.”
He’s now completed his second round of temozolomide chemo, which he will continue taking for as long as it works. 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.
My daughters, Maisie and Megan, 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, three close friends and I decided to arrange a race night fundraiser for which we set up a Justgiving page. Everyone had a great time and with both fundraising pages, and a few other local events, including Wear A Hat Day at Maisie’s school and a bingo night held at our local pub, The Carpenters Arms, we have raised more than £11,000, which we’re thrilled with.
“We’re now looking forward to being invited for a lab tour at one of the charity’s four Centres of Excellence.”
Emily Penwright
May 2023
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they 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.
Brain Tumour Research is determined to change this.
If you have been touched by Simon’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