In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Mother-of-two, Samantha from Cowbridge in South Wales had a seizure out-of-the-blue in October 2021. She was given anti-seizure medication and doctors thought she may have encephalitis. An MRI scan confirmed a large lesion deep in her brain and she was diagnosed with a grade 4 glioblastoma. The family-of-four sought a second opinion only to be told the chance of Samantha surviving more than two years were slim. She died in December 2022.
Here is Samantha’s story, as told by her husband, Julian…
We were married for 28 years and had two beautiful girls together. Since losing Sam, I’ve asked myself if there were any signs before we were given the horrific news of her brain tumour and the answer is always the same. No. Nothing.
I had been working away in London for the day in October 2021 and in the evening joined the family at home. The only way I can describe what happened was that Sam went from being ‘normal’ to acting like she was possessed. The episode made her look up into the lights and she fell, cushioned by the open wardrobe in our bedroom.
As a spectator, you can’t move quickly enough. It was one of the most frightening experiences I have witnessed. There was a delay for an ambulance to get to us so together with my daughters we got Sam in the car and drove her to the Princess of Wales in Bridgend. She was prescribed anti-seizure medication and treated for encephalitis until a CT and MRI scan found a large lesion in her brain.
At this point we were at the tail end of COVID so being with Sam in the high dependency unit (HDU) was almost impossible.
Eventually all four of us were in the room when we were given the mind-boggling news that the lesion, which due to its position and size made it inoperable, was likely to be high-grade. We did our own research into what that could mean for our family but had to ask about the prognosis after Sam had a biopsy.
In early December results confirmed it was indeed a grade 4 glioblastoma (GBM) and there would be a care plan in place often used across other cancer types, including radio and chemotherapy. However, we were essentially told “here is the problem but we can’t fix it”.
Sam had her treatment at the Velindre Cancer Centre in Cardiff where we asked about the prognosis, keeping everything open and honest with our grown-up girls, Nancie and Robyn. We were all learning about, and facing, the diagnosis as a unit.
We were told the average survival time is devastatingly short – just 12-18 months. However, 25% of glioblastoma patients survive more than one year and 5% of patients survive more than five years.
It was helpful to have a range and I think you tend to latch on to the longest number.
Although you trust your consultant and medical team around you, there were still times we found ourselves searching online for more information. We were encouraged not to take Sam out of the country for clinical trials and instead enjoy the time we had left together. The trial system is too slow and there is a very specific and limiting set of criteria the patient needs to match to even get on to any trial.
“I would have given my right arm for Sam to have been diagnosed with a more manageable cancer with a better survival rate.”
In fact, just 12% of those diagnosed with a brain tumour survive beyond five years, compared with an average of 54% across all cancers.
We had a second opinion from a team at the Royal Marsden in London but were told nothing we didn’t already know. All Sam wanted to do was freeze where she was in time at that moment. She had lost some mobility but still maintained a level of independence. From then on we decided it was the little moments that mattered. Having dinner at the table together, going out for a picnic, sitting in the living room watching telly even. The bucket lists you hear about people making who are close to the end of their life, none of that mattered to Sam. She loved watching her two daughters compete at the Swansea Bay half marathon, raising funds for various brain tumour charities.
The large and aggressive tumour was clearly in her brain before the seizure, and chemotherapy and radiotherapy were the only medical interventions available to us to help prolong her life.
Sam’s tumour was zapped and poisoned, but it grew for a second time and became harder to control. A second cycle of chemotherapy in October had little impact on the cancer. Sam was getting more and more poorly, and she had another seizure almost a year to the date of her first one.
Six weeks later, on 15 December 2022, Sam died.
My grief often turns to anger and frustration. Treatment appears to be the same as it was in the 90s – when is the next big breakthrough going to happen? I hope that in our children’s lifetime, something positive comes for treating brain tumour patients.
Sam’s wish was for funds raised at her funeral to go to a research charity, which is why I am supporting Brain Tumour Research. We have to move things along for brain tumour patients and their families so that progress is in line with advances that have been made in other cancers.
As in many households, the mum is the glue keeping everything together. A much loved mum, wife and daughter, who herself was the most loving of creatures. We have collectively managed our heartache by thinking “what would Mum have us do, what would Mum say?” – she would have us ‘crack on’ with it and that’s what we will do in her enduring honour.
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 Sam’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