Brain tumour dad's Â£70,000 determination to find a cure
Lancashire dad Glendon Snape is fighting a deadly brain cancer which has no cure. But a determined Glendon is doing everything in his power to outlive his prognosis and help find a cure for the aggressive disease.He tells AASMA DAY his story.
Dreaming of a new life together with the love of his life, Glendon Snape felt like he was brimming over with happiness.
Glendon and wife Kate were looking forward to their honeymoon in Sri Lanka booked for a few months after their wedding and decided to go on a hotel break in Wales for their first overnight break as a married couple.
However, the couple who live in Fulwood, Preston, and have four children between them, never actually set foot inside the hotel as Glendon was suddenly struck with a terrible headache during the car journey.
Thinking it was just a severe migraine at first, the newlyweds never imagined they would receive such a sinister and life changing diagnosis. Glendon, 52 and Kate, 43, were devastated to discover Glendon had a lethal brain tumour with possibly only months to live.
Glendon, 52, recalls: “Fourteen months ago, I was the luckiest man alive getting married to the love of my life with our four fantastic children. Now I’m sitting in a wheelchair having been through months of gruelling and experimental treatments and repeatedly hearing I may only have months to live. Sometimes it feels like death by a thousand cuts.”
The couple’s ordeal unfolded weeks after their wedding which took place at Mitton Hall, near Whalley. It was while they were on their way to a break in North Wales when Glendon, a sales and marketing director, was suddenly taken ill.
Kate remembers: “It came completely out of the blue and Glendon hadn’t been unwell beforehand. Even looking back now, there weren’t any particular signs. Glen did say he had a headache the day before but he had been driving a long way for work the day before, so we just put it down to that.
“As we were going down the motorway, Glen said: ‘That’s weird’ and told me that, just momentarily, it had looked like I was in the car next to us rather than in the car with him. I thought that was a bit odd, but thought he had just caught me through the side of his eyes. Glen then told me he was getting a strong sense of deja vu and had a really severe migraine type headache and he suddenly drove the wrong way up a one way street. I took over the driving and thought Glendon would feel better once we got to the hotel and he had a lie down.
“But we never made it there as I became worried as Glen seemed so out of it so I pulled into a supermarket car park and they called an ambulance. Just before Glen got into the ambulance, he started having seizures and was in a lot of pain. I was not used to seeing someone fitting like that and it was very frightening.”
Glendon was taken to hospital in Wales and a scan showed he had a mass in the brain that looked like a tumour. He was later transferred to the Walton Centre in Liverpool.
Glendon was diagnosed with a grade four glioblastoma multiforme – a highly aggressive brain tumour.
Glendon explains: “I knew nothing about brain tumours before my diagnosis but once we had been told the news, I began frantically researching everything I could find.
“I remember thinking: ‘as long as it’s not a glioblastoma multiforme, it might turn out fine. But then they identified that was indeed what it was. It is the most aggressive tumour known to man and they nickname it ‘The Terminator.’ It is an absolute monster and it kills faster than any cancer and there is no known cure.”
Glendon has had brain surgery, chemotherapy and radiotherapy but the tumour is so aggressive, it keeps returning.
When doctors told Glendon he only had 14 months to live, he was driven to investigate experimental therapies.
Glendon explains: “When the doctors told me I had 14 months to live, my heart just sank and knowing more became an obsession.
“I just had to try to find a way out of the nightmare. I would wake up at 5am and spend all day, sometimes 24 hours at a time, at the computer desperately searching for information.
“With a glioblastoma multiforme, you need hope or you’ll be crushed.
“It’s like an addiction but it’s kept me alive. If you want to get better, then you have to do your research, it’s down to you. No-one will hand you a cure.”
After Glendon’s first surgery in March 2016, he had chemotherapy and radiotherapy and began a regime of three-monthly MRI scans to monitor the progress of the tumour. He had another operation in January 2017 to remove more of the tumour and that’s when he decided to take control of his own treatment.
Glendon says: “I was told I couldn’t risk another surgery after the second one as the risk of being left with ‘deficiencies’ was too great.
“I could no longer move my left side and they were out of options, I felt like the doctors were giving up on me. It was like having a gun to my head: pay up and go private or die in three months.
“I had heard about experimental new treatments during my months of research, so decided that this had to be the time to just try anything I could.
“I sold my mother’s house, cashed in my life insurance and pension – my company had already arranged a minimum leaving package for me six months after my diagnosis after 23 years with them – and threw everything I had at my disease.”
Glendon has just gone past his initial prognosis of 14 months and is desperate for anything that will buy him some time.
The innovative but early stage treatments Glendon has been trying include immunotherapy and wearing an Optune – a device which delivers electric fields to the brain through adhesive patches on the skull.
Glendon also chose to have genetic testing to inform his medical team’s recommendations.
He says: “The last year has been one endless period of worsening scans, horrible treatments and ongoing pain. I am desperate for respite, for six months where my tumour would just stay stable and not grow. That would be a lifetime for me.
“The treatments available on the NHS are so out-dated, there’s been no significant improvements in 30 years. How can they save anyone?
“I started off seeing an amazing oncologist, Wolfgang Wick, in Heidelberg, in Germany. One of his first questions to me was: ‘Where’s your Novocure Optune?’ He told me that without this innovative new treatment, a kind of wearable skull cap using electric fields to treat brain tumours, I had virtually no chance of survival. He immediately wrote to the company, who gave me one for free; they are such a humane organisation. It’s very unusual in private cancer care to come across anyone who offers anything without charging.
“Sometimes I feel that trying to beat cancer is like being asset-stripped by pharmaceutical companies.
“You have to wear it almost all of the time, but the Optune seemed to help with the pain. I slept like a baby for the first time in months.
“Unfortunately, a few months on and the tumour is still growing, but I still wear it just in case it is having a retardant effect. It’s like a safety blanket for me.
“Immunology was the next thing on my list to explore and I came across Matt Williams at Imperial College, who is the best in the UK. I chose to have another re-section despite the earlier doctor’s warnings to get as much of the tumour out as possible.”
Kate remembers: “By October, Glen had started going downhill and was having more seizures. He had his surgery on our wedding anniversary and by this point, he could hardly stand up or walk and was falling asleep all the time.
“A few months ago, we thought it might all be over as Glen was unconscious for four days and they started end-of-life care.
“But then he opened his eyes and came round.”
Glendon says: “The kids were scared they were losing their dad but I came around again. I don’t want to die. I’m fighting to stay with Kate and the children. I want to give others hope; patients and families need to hear there’s hope. However, I am not just doing this out of selfishness to keep myself alive. It is because this treatment is a basis for finding a cure.
“I am trying to buy myself some time but I am not just doing it for me; I am doing it for the long term good and trying to find an overall cure.
“So far, I have spent around £70,000 and travelled all over Europe to see specialists. Nobody has been mad enough to do this because it is such hard work.
“The specialists say they don’t get patients like me as I am so determined. This is all just buying me time with my family and hopefully slowing the tumour growth.
“I know the tumour will probably come back, but maybe everything I’m making happen could actually cure me. You never know, it might just kill it off.
“They are so tantalisingly close to getting the right combination of drugs that will get on top of this.
“I feel really strongly that patients are left suffering without hope. It’s been known for years that the cancer drug Temozolomide doesn’t work for all brain tumour patients, yet there are so few clinical trials in progress to discover new options. Brain tumour patients are left without access to new drugs. Every day I wake up and then remember what I’m facing. It’s exhausting.
“Yet I know I am blessed with my children and my wife. Kate completes me, I can’t give up on her. I have to carry on fighting. We still need a proper honeymoon!”
Kate says: “Glen became obsessed for a while with trying to find something that would keep him alive a bit longer. But it was difficult, as while he was doing that, he wasn’t living. It has been non-stop and a bit of a nightmare trying to organise all these trips and family life. But whatever Glen wants to do, I support him and it will all be worth it if it works.”
l To support Glendon’s treatment, visit: www.justgiving.com/crowdfunding/glendon-snape-1
Less than 20 per cent of those diagnosed with a brain tumour survive beyond five years compared with an average of 50 per cent across all cancers, according to the charity Brain Tumour Research.
Sue Farrington Smith MBE, chief executive of Brain Tumour Research, says: “Brain tumours kill more men under 45 than prostate cancer, yet just one per cent of the national spend on cancer research has been allocated to this devastating disease.
“Decades of underfunding has meant that patient outcomes now lag far behind those of many other types of cancer. For too long, patients like Glendon have been left in a desperate race against time, fighting their odds with therapies that are often expensive and unproven. It cannot continue like this.
“Brain Tumour Research now has a game-changing network of world-class Research Centres of Excellence in the UK, all determined to improve treatment options for patients.”
Glendon underwent treatment at Imperial College where Brain Tumour Research funds a Centre of Excellence, one of a network of four in the UK.
BRAIN TUMOUR FACTS
• Brain tumours kill more children and adults under the age of 40 than any other cancer
• They kill more children than leukaemia
• They kill more men under 45 than prostate cancer
• They kill more women under 35 than breast cancer
• Just one per cent of the national spend on cancer research has been allocated to this devastating disease
• In the UK 16,000 people each year are diagnosed with a brain tumour
• Less than 20 per cent of those diagnosed with a brain tumour survive beyond five years compared with an average of 50 per across all cancers
• Incidences of deaths from brain tumours are increasing