In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
We are grateful to Gavin and his wife, Alisha, who worked with us in January 2023 to share his story here. Sadly, he passed away in March 2023. We remember Gavin 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.
Six weeks after marrying Alisha, in 2019, Gavin from St Austell in Cornwall was diagnosed with cancer of the spine which had metastasised to his brain. The couple had welcomed their first daughter two months earlier. Debulking surgery confirmed he had an incurable and rare ependymoma. The fit and healthy 44-year-old endured radiotherapy, and he and Alisha welcome a second daughter in 2021. But in 2022 Gavin began to struggle with weakness in his leg and a scan showed the cancer had returned. He was given a devastating prognosis of 12 months. Alisha is sharing his story and their experience of a family navigating a life-limiting brain tumour diagnosis.
Here is Gavin’s story as told by his wife, Alisha…
When I met Gavin six years ago, he was really healthy and active, enjoying body-boarding and water sports generally. We met through our mutual love of karate – I was already teaching classes and he was on a training programme to be able to teach. He trained until his recent relapse which, up to that point, seemed to have helped in his rehabilitation and strengthening in his legs.
Gavin had problems with back pain for around 10 years, but never thought it was anything serious that needed investigating. Around the beginning of 2019, he started experiencing excruciating pains in his back which got worse and worse. On our wedding day, 9 February 2019, as well as the awful back pain, he also had pins and needles in his left leg.
Then, on the morning of 29 March 2019, Gavin woke and struggled to get out of bed. He ended up on the floor in the foetal position, unable to move. I gave him ibuprofen and paracetamol and hoped that would do the trick.
Because I had to shoot off to judge a karate competition, I asked my mum and dad to come over to be with Gavin. When he found he was unable to urinate, they called me to come home and also called 111 because it was a Sunday. A doctor advised us to take him to A&E at Treliske Hospital in Truro where Gavin had an MRI scan.
“I knew that we weren’t going to be given good news when a doctor, accompanied by a nurse, took us to a private room with a handy box of tissues. I remember experiencing a real feeling of fear in the pit of my stomach.”
The doctor explained that he had been liaising with a specialist in another hospital. He said Gavin had a tumour in his spine and what looked like further spread along the whole of the spinal column and in the brain.
“I couldn’t believe what I was hearing. Gavin and I had a two-month-old daughter, Evelyn, and we had only been married for six weeks.”
Over the next few days, Gavin had further blood tests and scans. He was then transferred to Derriford Hospital in Plymouth where a biopsy was taken and the primary tumour in his spine was debulked. Two weeks later we met with a neuro-oncologist who told us the diagnosis was a metastatic ependymoma and that the cancer was incurable.
She couldn’t give us any indication as to whether it was going to grow again, but told us that Gavin would have be to regularly scanned and monitored.
Gavin noticed a big improvement after the surgery in his back pain as well as with the pins and needles in his legs.
On 21 April, Gavin went to the Bristol Royal Infirmary where he started radiotherapy treatment the following day.
Evelyn and I found accommodation in Bristol so we could be with Gavin and support him through his six weeks of radiotherapy. It was a hugely difficult time for all of us. I was a new mum with a clingy baby who cried a lot. It was very hard to get her settled because there is always some commotion or other going on in the hospital and I remember a couple of times crying myself. Normally with a new baby, the couple share the load of changing nappies, feeding and settling the baby, but I was having to do all this on my own while living in a big city, far away from our semi-rural life in Cornwall.
I was also trying to look after my husband, so felt I was being split in two directions. It was very difficult.
Around week three, we found ourselves without accommodation for a few days, so Evelyn and I went home for a week.
“Meanwhile Gavin’s hair started falling out and his scalp felt like it was on fire. He went to a hairdresser and asked them to shave his hair off as he was finding it quite distressing waking up to so much hair on his pillow.”
It was a great day when Gavin finally completed his treatment and our little family could return home to Cornwall together. In September 2021 we welcomed another daughter to our family, which happened naturally after concerns that treatment could impact our chances of conceiving.
The cancer remained stable until September last year.
Throughout summer 2022, Gavin was struggling with weakness in his leg and a routine scan in September showed a new growth in his spine.
The deterioration happened quickly and within a few weeks Gavin went from walking fine, to needing an aid. He was placed on chemotherapy and despite taking this orally, meaning he could have this whilst at home, the side effects meant we were in and out of hospital. Gavin’s liver stopped functioning and he suffered with swelling in his belly, legs and back.
Since November, Gavin has been receiving palliative care in at Mount Edgcumbe Hospice, unable to return to our family home due to accessibility as he now uses a wheelchair.
This month we received the keys to a new house which is huge for us and means we can be together as a family of four, making memories.
Gavin’s diagnosis has showed me the importance of cherishing the time you spend together, especially the little things like grabbing a takeaway and eating around the table. The minute moments become monumental experiences. I know that our eldest daughter, Evelyn, is looking forward to being able to give her daddy a hug.
A couple of days after we were given the news that Gavin’s cancer was terminal, our kind friend set up a crowdfunding page to help us with the cost that comes with making memories. We now have to think about things such as vehicle hire to fit his wheelchair, and a hoist to get him to and from bed as well as the increased cost of living.
I was working as a healthcare assistant in an operating theatre for 18 months before maternity leave to have our second daughter, Elizah, who is one. Because of Gavin’s declining health I gave up work to look after him.
If there has been one good thing which has come out of Gavin’s cancer, it’s that it made me determined to go to university to study medicine in a hope that one day I can become an oncologist.
I feel a lot of work is put on families to find out what treatment options are available to them outside the NHS standard of care. In Gavin’s case, we have been told that the type of cancer he has is very rare which is why treatment has been so difficult and it has left healthcare professionals unsure how to treat it. This has resulted in me advocating for his health and looking at other treatment options to prolong his life.
Gavin and I are keen to raise awareness. We know how shockingly underfunded research into brain tumours is, yet brain tumours kill more children and adults under the age of 40 than any other cancer.
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.
Together we will find a cure