In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
In April 2020, after losing mobility in his arm, Neil from Innsworth in Gloucestershire was treated for carpal tunnel syndrome. Weeks later he was rushed to Gloucestershire Royal Hospital suffering a suspected stroke. A scan revealed the shocking discovery of a life-limiting glioblastoma (GBM) brain tumour. He had an operation to remove the tumour followed by gruelling radiotherapy and chemotherapy treatment, which proved ineffective. In November 2020 he was given weeks to live. Feeling forced to take treatment into their own hands Neil and his wife, Hayley, tried an illegal cannabis oil which offered Neil a better quality of life. To the surprise of doctors, it appeared to have a positive effect on his tumour. He lived for a total of 31 months after his diagnosis 25 of which were after ceasing all NHS treatment. Neil died on 29 November 2022, aged 46.
Here is Neil’s story, as told by his wife, Hayley…
Neil and I met in 2003 and he was always a fit and healthy person. He was family orientated and together with our two girls, Abbie and Emily, we loved our camping trips. Neil and I enjoyed tournaments of rounders, where even being on the same team we would compete with each other, but we were back to normal as soon as we stepped off the field. He played rugby, football and badminton as a hobby, enjoying the social element as well as fitness side.
Neil was working in a paint shop as a supervisor at the time. There was a three-week period from the end of April 2020 when Neil experienced problems with mobility in his arm. He went to the shop to buy some bread but couldn’t grab the loaf, instead his hand would be to the side of it.
He then started to get pins and needles and generally said he didn’t feel right. The doctor said it was carpal tunnel syndrome and advised Neil to wear a splint. This didn’t help.
One time Neil called me upstairs whilst he was shaving and told me he thought he’d had a stroke. We went through a symptom checker and although some of what he was describing mimicked a stroke, we didn’t feel as though it was happening to Neil.
His symptoms continued and his vision started to change. He’d take a while to read things which was completely abnormal for him.
When I got a call from his colleague to say that Neil was on his way to hospital, I half expected it. He’d not felt right for a few weeks.
Lockdown made everything harder. I couldn’t be with him during his scan. Instead I had a call from Gloucestershire Royal Hospital and was on loudspeaker where, at the same time as Neil, I was told they’d found a mass on Neil’s brain, likely to be cancerous. It was awful, he was shocked and upset and I couldn’t even be there with him to give him a hug.
I knew nothing about brain tumours, let alone glioblastoma (GBM) which is what they thought Neil’s was. I looked online and saw the terribly short prognosis of GBM patients, just 12-18 months. However, 25% of glioblastoma patients survive more than one year and 5% of patients survive more than five years. Neil never wanted to know his prognosis but he knew he didn’t have long. If he could take the five years then he would.
“Neil’s best option was surgery at Southmead in Bristol. Despite an operation which saw 94% of the tumour removed, Neil was left with paralysis and speech difficulties.”
He could say words but couldn’t form sentences and it was really hard to have a conversation. Neil was determined to take control of his recovery and through exercise he regained mobility in his leg and arm but wasn’t able to grip which meant he couldn’t hold a pen. Looking back, if we knew the life-changing injuries that can come from brain surgery we would have weighed up the pros and cons and may have chosen a different path.
We felt obligated to organise our affairs, including finances, and even this felt like an uphill battle. Neil couldn’t communicate properly through speech or write, and his memory was also impacted. I had to physically wheel him into the bank so they could see him. Not only were we living with the physical and emotional trauma of a brain tumour diagnosis, but also logistics we never thought we’d have to deal with.
“Six weeks after brain surgery the tumour had grown back to the same size it was at the initial scan.”
He received radiotherapy and chemotherapy treatment followed by another scan. This NHS standard of care treatment had no effect on the tumour, which was still growing and had formed smaller tumours scattered on his brain. We felt deflated, as if we may have not bothered with surgery, that way Neil may have still had his speech and mobility.
Further surgery was too dangerous and on Neil’s 44th birthday on 18 November 2020 he was given just six weeks to live. The scans kept showing tumour growth, I felt compelled to do something so Neil could live longer and have some kind of quality to however much life he had left.
My own research led us to try cannabis oil, illegal because of its THC levels. It was a treatment option I felt we were forced to take, because nothing else was working. Neil started taking this in September 2020.
Neil wasn't nervous, he wanted to throw everything he could at fighting the tumour, to be here for as long as possible for Abbie and Emily.
This was all new to us. Neil has never smoked or taken drugs and after his operation he never consumed alcohol again.
I was nervous. I didn't know if it would make him feel a little spaced out - it didn’t. We built up the drops gradually and he tolerated it really well. He was on 24 drops a day 12 times in the morning and the same in the evening.
He didn't like the taste so he swallowed quite quickly. For better results you are supposed to hold under your tongue for a longer period of time if you can bear the taste.
He was using two bottles a month and stopped only as he was in the final stages of his life.
The use of the oil made Neil comfortable, and with regular exercise he went from relying on a wheelchair to being able to walk on his own. He seemed to go from strength to strength and was enjoying life once again.
Had we not had critical illness cover which paid off our mortgage, I’m not sure how we would have afforded the £708 monthly bill for the oil. He used the oil for 24 months and it cost us around £16,000 in total. Neil survived more than two years after he stopped all radiotherapy and chemotherapy treatment.
Due to symptoms of mobility decline, I pushed for him to have another scan in July 2022. He couldn't walk and with the help of his brother, Mark, together we had to lift him in and out of a wheelchair so he could leave the house.
He agreed to have the scan because he'd been stable for so long. Doctors didn't know if it was decline or muscle wastage due to long term steroid use. The scan showed growth in the large single mass. Remarkably the satellite tumours had gone. Neil had no other treatment and the only explanation I can think of is that the combination of cannabis oil and regular exercise played a big and positive part in Neil’s journey.
His healthcare team said Neil was a “miracle case” which they couldn’t explain.
From September to November, he became very poorly and his immune system was weakened resulting in Neil being bed bound with pneumonia.
We’d seen family birthdays together we never thought we’d see. Always being honest with our two girls was important to me and Neil. I remember telling Emily that Dad may not be here for her birthday in January 2021. It was horrible. But I believe that thanks to the cannabis oil, he got to see his girls turn 15 and 13.
Neil died on 29 November 2022, at home surrounded by his loving family.
Since his death, we’ve had an outpouring of support from the community, including his old rugby team Chosen Hill Rugby which organised a charity match in his memory.
Neil was so young, just 46, and losing him had a big impact on the girls’ lives, on all our lives. Abbie is studying triple science for her GCSEs, in preparation for a career in medicine. Emily is showing an interest in following a similar career path.
Seeing their dad go through this horrible journey has inspired them and informed what their future may look like.
Abbie joined the TikTok craze during lockdown in February 2021 which involved walking more than a marathon distance in a day. She was 13 at the time and raised more than £5,000 for Brain Tumour Research.
I want to be part of the solution. I want there to be more research into this disease so we can save the lives of loved ones. This can only happen through raising awareness and funds to keep up the momentum of finding a cure for brain tumours.
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 Neil’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/legacyTogether we will find a cure.