Sam Webster was the most loving, kind, compassionate and hilarious father, husband, son, son in law and friend to many. He was passionate about many things - acting, computers, gardening, landscaping, music, singing, football, kite surfing, wake boarding … you name it ! He loved life and made the absolute most of it for as long as he could.

Not long after we got engaged in 2010, Sam collapsed and had 3 tonic clonic seizures. Our lives then changed forever as we discovered he had a brain tumour. There were no signs previously. He had brain surgery 1 week later - no time to get your head around brain surgery and the risks. They needed to act straight away. They then told us he had 5 years left. 7 if we were lucky. Our whole future crashed around us.

However, we picked ourselves up and I researched everything - read all medical books, journals, published research. Found the survival distribution curve and searched the web until I found someone who had survived 15 years. I found all the factors that influenced survival of the long tail on that distribution curve - age, health, diet, fitness etc. Then we focussed on making it to that long tail.

He gave me the option to leave him so I wouldn’t have to go through this but that was never even an option in my mind. I loved him deeply and he needed me. We decided to have a family as soon as possible and aimed for 3 kids so they could all support each other when the inevitable happened. But we remained utterly positive on surviving as long as possible.

But Sam’s brain tumour kept growing & kept coming back every 3 years like clockwork - he had another brain surgery to remove it in 2014, had radiotherapy & chemo in 2017 and then in 2020 they said they thought it had changed to grade 4 & told us he had a year left to live. Another brain surgery later they discovered it hadn’t progressed as he had another very rare condition called histiocytosis - in fact no one in the world had this in the same place as a brain tumour and it took months to figure it out before we were told it wasn’t actually a grade 4 and to carry on with our lives but with another year of chemo just in case. In 2023 it showed up again and then started to show up in different parts of the brain. Surgery showed a chromosome changing which showed it was on the cusp of progressing to grade 4. He also suffered a post operative stroke to top it all off. Something that didn’t show up in A&E when we rushed him there - only in a MRI a month later. And then Chemo started again but it just didn’t work. And then in July we were told there were no options left and we had up to 6 months left to live but prepare for less. A bloody tough treatment journey!

All during this time, the impact on Sam was huge … we never really discussed it with anyone as it was hard to put it into words and sometimes he was unaware of the changes as he wouldn’t have known himself - he went from very energetic and passionate about life and all the things he loved to sleeping a lot, lacked motivation, couldn’t manage day to day tasks well and lacked judgement/understanding of consequences. Looking back, this started happening from 2022. He so tried but day to day tasks became impossible & he was so proud that he didn’t ask for help. Therefore it was hard for the bystanders to understand. Sometimes we’d get annoyed, trying to snap him out of this pattern. Looking back, it is also one of my biggest regrets but no medical person prepares you for the changes like this. No one tells you when the brain is injured in the right frontal lobe, these are the changes you should expect to see and this is what you can do to help/these are the things to put in place/this is how you can minimise the impact. But this is where the Brain Tumour charity helps and supports the whole person and the whole family as well as researching to find a cure.

When we finally realised the impact to Sam and what he was dealing with and how hard it was for him, we all put our arms round him and vowed to take away the tasks that were impossible for him to do, family stayed with us full time so he always had help/support/company and we all let him just focus on the things he loved most - coaching Xander’s football team at Shortlands AFC, seeing friends and going to India to see the Dali Lama & a family holiday in Greece.

Despite all his struggles, he never ever once complained. Always tried to stay positive, even when the disease stole his energy & motivation. And he was always kind to everyone - even though this brain tumour was in the personality part of the brain & was renown for making people aggressive, nasty and mean. He was ALWAYS kind to everyone - not just a little bit but a huge amount as deep in his brain compassion was engrained. In my mind, he won even though he lost his life in the end.

Sam was scared of the pain & dying part of his journey but we did everything to make sure he was pain free and comfortable - I was with him holding his hand through all the confusion over the last 2 months and I fought his corner on the medical front as I researched everything in detail. He died peacefully and surrounded by love from his whole family. It was very peaceful & a beautiful way to go.

But we must find a cure…. The impact of Sam’s loss following his death has been devastating to us all. The grief is immense - something I thought I was prepared for but was nowhere near prepared for. We do not want other people to feel the pain of loss and to go through this horrific journey to survive. Our family now needs to focus on the positives and we are now in the process of setting up a fund in his name and anyone will be able to fund raise in his name once it is set up. We are planning a Hadrians Wall walk in May to fundraise & honour Sam.

But for now, I have set up a Just Giving page for him to collect for his celebration of life. This will go into the fund once it is set up.

A bit about the charity ….

The Brain Tumour Charity is the world's leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. Committed to saving and improving lives, we're moving further, faster to help every single person affected by a brain tumour.

We're set on finding new treatments, offering the highest level of support and driving urgent change. And we're doing it right now. Because we understand that when you, or someone you love, is diagnosed with a brain tumour a cure really can't wait.