In 2018 mum-of-three Lisa, from Hungerford in Berkshire, suffered a seizure and flu-like symptoms and was initially diagnosed with encephalitis. A follow-up scan six months later, revealed they were actually the symptoms of a brain tumour. The former fashion designer turned teaching assistant began chemotherapy but stopped after suffering badly with the side-effects. She died five years later, in March 2021, aged 50. Throughout her diagnosis Lisa fundraised and campaigned with Brain Tumour Research. Since her death her husband, Simon, and their three children are continuing to support the charity which was close to her heart.
Here is Lisa’s story, as told by her husband, Simon…
Lisa and I met at university, we both studied in York. It was my sister who introduced us. From 1991 we built a life together, moving to London where Lisa worked in the design teams for top fashion houses. We later moved our life to Hungerford. Lisa had a change of career after raising our three boys, working as a teaching assistant in a local school.
Whilst at work in 2018 she suffered a seizure. She called me to say she felt unwell and had flu-like symptoms and we met back at the house. I could see Lisa wasn’t herself, although fairly lucid.
We went to the GP and was referred to the Great Western Hospital in Swindon where she was treated for encephalitis. Lisa was placed on a drip and given antiviral medication which seemed to do the trick. She felt better and came home with a view to having a follow-up scan in six months to check her recovery from encephalitis.
Results of that scan shocked us both as we were told it showed a tumour which had spread across the left side of Lisa’s brain. What was thought to be a viral infection was actually symptoms of a brain tumour.
“We were in disbelief as to what we had been told. Lisa was presenting completely normal.”
There were feelings of deep frustration and upset as we were led to believe Lisa had already fought one illness, only to be told she had a brain tumour.
The consultant at the time couldn’t believe the person in front of them was the same person who the scan image belonged to.
She underwent one full cycle of chemotherapy and was having monthly scans which were showing slight improvement. She was then given a year off, but all the while her condition was deteriorating. She was still having fatigue issues, difficulty with balance, lots of trips and falls, and a loss of word skills. I could see this, but they couldn’t see it on the scans.
Then COVID-19 happened, which made life extremely difficult, because we couldn’t see anybody face to face and any conversations we had with the consultants had to be done online.
I was adamant that things were getting worse but they said they’d done the scans and had noticed no change; at this point it started to feel like something of a battle with the medical professionals as we couldn’t get the support.
Lisa was taking Keppra, an anti-epilepsy medication. It was the epilepsy nurse, towards the end of 2020, who recommended making contact with the palliative care team who were absolutely brilliant.
At this point, I had been caring for her myself at home, which was hard work bringing up three boys and working a full-time job as well.
“In 2021 she went drastically downhill. She had lost the ability to move around, which meant we had to have a hoist installed at home. She also lost the ability to speak, eat, and drink.”
It wasn’t until she was admitted to the palliative care centre in Newbury that they redid the scan and realised that there had been a massive swelling.
The previous scan had led us to believe it was a grade 2. It was suddenly revealed that it had got so much worse, and she didn’t have long.
We had hoped that things might improve, and we had been discussing alternative treatments.
I understand that there was a global pandemic, I just wished we had been given the full story. To be told she had a couple of days to live and have the rug pulled out from underneath me was devastating.
“Within four days of the final scan, she passed away. The light in the tunnel was extinguished so quickly.”
The only glimmer of good was that we got to be there with her at the end.
Lisa had been an avid supporter of Brain Tumour Research; she had arranged bakes, and got involved with the charity’s Wear a Hat Day.
My youngest son Aidan, who was 13 at the time, wanted to do something to raise funds. We kayaked 200km from Hungerford to Bristol and back, wild camping on the way. It was hard work, and the weather was challenging. We raised £6,000 for Brain Tumour Research and placed our tiles on the Wall of Hope at Imperial College London in Lisa’s memory.
My wife was one of the most positive people you could ever wish to meet, and kept her spirits up throughout. Her outlook was looking out for others and making sure the people around her were thought about and looked after. It’s not just the individual you lose. It’s the ramifications of that loss and the ripples that are felt by everyone who loves them, so the more we can do to bring more attention to this disease the better.
“Having lived this first hand, it’s just appalling that just 1% of the national spend on cancer research has been allocated to brain tumours since records began in 2002. It’s ridiculous.”
It’s absolutely vital that the government follows through on its promise to spend £40 million on research into brain tumours. It’s absurd that such a devastating disease isn’t getting the attention that it needs.
Simon Flanagan
October 2024
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Lisa’s story, you may like to make a donation via or leave a gift in your will via www.braintumourresearch.org/legacy .Together we will find a cure.