When I first experienced symptoms I felt like I was having mild heart attacks. The tingling sensations in my arm were initially thought to be due to a trapped nerve . After consultations and an MRI scan at Nuffield Hospital in York at the end of April we discovered it was a brain tumour.
It was totally unexpected – but it was something I knew a lot about. My wife Gill has had the same disease for 18 years and the chances of us both having it were one in a million.
At first Gill's tumour was classed as low grade but developed into stage four GBM. In 2009 doctors said she had 12 months to four years to live but she's beaten the odds and thankfully is still doing well after three operations and all the follow-up treatment – including 90 MRI scans.
When Gill was first diagnosed we were like a rabbit in the headlights, as we couldn't take it in. It was a very lonely, very frightening place to be. We didn't know anyone who'd had a brain tumour and I don't want anyone else to go through what we went through. That's why I want to share my story to help others going through a similar experience.
One thing we knew was that the more of the brain tumour they can remove the better the outcome. My surgeon at Hull University Hospital said in his experience they could remove 80% to 85% of the tumour under general anaesthetic. With an "awake craniotomy" they can remove more because it's easier to see which parts are the good part of the brain while the patient is awake.
Gill and I have two teenage children and I owed it to my family to try and get the best possible outcome. The doctor told me there are no nerve endings in the brain so it cannot feel pain, which helped me make up my mind. It's very rare to have an awake craniotomy because most people dismiss it out of hand but I hope by telling my story more people in my position will consider one. It can add months or years to your life.
As a procurement specialist for Asda I've learned you have to face your fears and ask the questions you'd rather not know the answer to. If there's bad news I'd rather know now than in a week when it's still a problem but you're a week further on. It gives you longer to prepare and find a solution.
I had three weeks to prepare for the operation and so I found out as much about it as I could. I watched operations on YouTube, I went in with a list of 25 questions for the oncologist, talked to the physio, the surgeon and the doctors. The more information you have, the better decisions you can make.
I was told the machinery in the operating theatre would be noisy and that I'd have to keep my head completely still for five to six hours. I arranged to take my phone in with me to play music to help drown out the sounds. I also asked if I could take selfies in the operating theatre to help share my story and to help me stay awake by messaging friends and family.
Because of the risk of coronavirus both me and the doctors were in full PPE. By coincidence I'd spent the previous few weeks of working from home in lockdown sourcing PPE equipment to safeguard Asda colleagues and customers, including sneeze guards to be installed at our checkouts.
The worst part of the operation was hearing them drilling into the skull. I had a local anaesthetic, so I could feel it but it didn't hurt. It was more the sound, like being at the dentist! I was listening to a real mix of music - I'd picked some of the noisier ones that I like and that my children have recommended, like The Hunna and The Courteeners as well as The Jam and Two Door Cinema Club.
Halfway through the operation I started sending selfies to my wife and friends. At first people couldn't believe it but were chuffed to think they were involved in some way, messaging me back to say ‘OMG are you being operated on now?!’ Hopefully my experience and the images can demystify what’s involved as well as acknowledging the people who do this fantastic work.
In a bizarre way I really enjoyed the surgery; it was like a great team meeting at work where I was one of the key decision makers helping to guide the team – the surgical team in this case – on how far they could go. One thing I wasn’t expecting, and it’s something I’ll never forget, is that when it was over the whole surgical team gave me a massive round of applause. It was a wonderful moment.
After the operation I was elated when they told me they'd got 100% of the tumour out. But having a brain tumour is a long journey. They also told me it was a stage four tumour which is the worst prognosis. The average life expectancy for someone with this kind of glioblastoma multiforme (GBM) tumour is 18 to 24 months – but that's only an average. I've seen from Gill what's possible and I intend to be here in ten years' time, hopefully with Gill by my side, still educating people and helping them learn from our experiences.
Following Gill’s diagnosis we set up a fundraising group called Circle of Hope to help people with similar diagnoses in Yorkshire. Over the years we've raised £90,000 for the national charity Brain Tumour Research. We've received messages from lots of people in Yorkshire who want to help and donate because they or their relatives are in the same position.
I'd love to set up a support network for people in Yorkshire. That's the next stage, but first I'm going to concentrate on chemo and radiotherapy and getting better. It's important to keep a positive mentality.
