Father-of-three, Alan, from Buckinghamshire, died in May 2024, almost three years after he was diagnosed with a grade 3 anaplastic astrocytoma. The 36-year-old supermarket manager was considered fit and healthy until a seizure out of the blue led to the discovery of a tumour on his brain. Despite undergoing an operation followed by radiotherapy and chemotherapy treatment, Alan developed a second tumour which was inoperable. Three weeks after an operation to fit a shunt Alan died, leaving his wife, Julia, and three daughters Jessica, Daniella and Louisa.
Here is Alan’s story, as told by his wife, Julia…
Alan and I met at Sainsburys in Ruislip, London, where we both worked in 2009. Four years later, we moved to a village near High Wycombe. Alan was a funny, caring, hard-working man and was a very loyal and loving father and husband.
In early September 2021, Alan had a seizure out of the blue. He’d never had one before. He and I were at home, along with our three daughters who were aged six, three and one.
One of our girls had a sickness bug, and we thought he’d perhaps collapsed because he’d caught it. It was horrible to witness but it could have been so much worse, he could have been driving or alone when it happened.
He was taken to Stoke Mandeville Hospital in Aylesbury where he had an MRI scan. Doctors told us they found a tumour growing on his brain and we were sent to the John Radcliffe in Oxford (JR).
I had very little knowledge about brain tumours and their symptoms before Alan was diagnosed.
I didn’t understand how this could happen to him as he was a young, fit and healthy person. He had no known health conditions, but I thought the doctors would tell us the seizure was a sign of epilepsy, a brain tumour never entered my thoughts.
Alan had surgery in November which confirmed his tumour was a grade 3 anaplastic astrocytoma.
The consultant gave us information about what this type of tumour meant for Alan and the stats weren’t great. They told us he would always have the tumour and due to its location, they would never be able to remove it all because the risks of life-changing injuries were high.
Radiotherapy started a few days after Christmas which caused him to lose his hair. He then had a year of chemotherapy which was in tablet form. Doctors gave a list of the possible side effects from treatment, but Alan was fine and seemed to cope with the treatment really well. He went back to work, and we managed days out with the kids.
He had routine scans which were all were stable until February 2024.
Alan spoke about a change in his vision. When we were watching TV, he said everything looked blurry and it appeared as if things were coming towards him. A scan the next month confirmed there had been changes on the image and Alan had a second tumour.
This time the mass was growing in the cerebellum which meant it was inoperable. For almost a year after he finished chemo in 2023, Alan’s tumour had been stable, so we never expected to be told he had a new growth forming in a different part of his brain.
He went back on chemo but after two months he started to get really sick and had very bad headaches that he had never experienced before. He needed to wear glasses to help with his eyesight.
As best we could, we continued to make memories, and our last family day out was a trip to Legoland.
Steadily, Alan started to struggle more and more. He lost the ability to grip things and found it difficult to get around the house, his appetite went, and he was tired all the time. In early May further investigation found the tumour had grown in a way, that had caused a build-up of fluid on his brain. He had another operation at the JR, this time to fit a shunt to help drain the fluid.
Even after the shunt was fitted the tumour continued to grow and Alan’s health never improved. We were told that the tumour was now very aggressive, and Alan was too weak to be put through any further treatment.
Alan opted to spend whatever time he had left in the Florence Nightingale Hospice in Stoke Mandeville.
He died peacefully in his sleep in the early hours of 28th May 2024 as I sat by his bedside, five days after entering the hospice.
The girls knew Alan was poorly. They were all at home when he had the seizure. We explained that Daddy had a poorly brain and they seemed to grasp the extent of his condition as he spent more and more time at home in bed.
When we found out that Alan’s condition was never going to improve and that time was running out, I sat them down and told them that Daddy wasn’t going to be coming home, and that the doctors and medicine wouldn’t make him better and Daddy was going to die.
On the morning that he died, my eldest daughter came with me to the hospice to say goodbye.
When Alan was diagnosed, I began to follow Brain Tumour Research and other such organisations across social media and also followed Kelsey Parker. I read her and her late husband, Tom Parker’s books. It made me feel less alone reading other family's stories about watching a loved one being diagnosed with a brain tumour and the journey each person goes on. I shared these stories with Alan to give him hope and to try and keep him positive.
The girls often ask me questions about brain tumours and what their Daddy went through. They ask are they going to catch one and why did Daddy get one. I answer as honestly as I can and explain that Alan did nothing wrong, he was a healthy person and sadly these things just happen and the people who get diagnosed are just very unlucky.
Before Alan was diagnosed, we were living a normal, simple, happy family life and now our world has been turned upside down. I’m now a single mum and a widow which is something I never dreamed I would be. It breaks my heart when I think about all the things Alan is going to miss out on and how much me and our girls miss him, but I am so very grateful for my children as a piece of Alan lives on. We are determined to make the most of everyday together and to make Alan proud.
Brain tumours can happen to anyone at any time and although nothing could save Alan, my hope is that by sharing his story and creating awareness around the disease, there will one day be a cure for all types of brain tumours.
Julia Smith
March 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Alan’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.