In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Wendy Griffin, 53, from Peterborough, went to hospital in 2018 after suffering a fall. She had an MRI scan which revealed a glioblastoma (GBM). To protect her daughters, Michaela, 28, Laura, 23, and Kirstie, 20, she had kept the devastating news to herself. Months later, Michaela, who was away at university, noticed her mum’s face was swollen while on a video call. A week later, Wendy, revealed her diagnosis to her. In December 2020, Wendy died with her loving family by her side. Michaela now studies brain tumours in her role as a postdoctoral research fellow at the Wellcome Trust Sanger Institute in Cambridge.
Michaela tells her mum’s story…
Mum was an incredible woman, and she was fiercely protective of me and my sisters, Laura and Kirstie. She absolutely loved her dog, Heidi; she was the light of Mum’s life, and she loved getting a coffee and going out for walks with her.
“Because she was so protective of us, Mum was very private about her brain tumour diagnosis, and she kept it a big secret. She went through her diagnosis alone.”
In July 2018, I was doing an MRes in cancer research at the University of Nottingham. I FaceTime called Mum and noticed her face was swollen. After the call, I contacted my sister, Laura, to check Mum was OK. She said Mum had been put on steroids, but it wasn’t clear why.
A week later, Mum came to visit me. During her stay, she told me there was something in her head and she needed to have an operation. She hadn’t said anything because she didn’t want to worry us.
“I had a good understanding of what was going on, but I think I was in denial.”
It emerged Mum had suffered a fall, which we think was caused by her persistent headaches and confusion. It led to her having an MRI scan at Peterborough City Hospital. After the scan, she was told: “There’s nothing we can do. Go home and hug your children.” But Addenbrookes Hospital in Cambridge, which has a specialist neurosurgery department, said Mum was too young to not do anything and said they could operate on her.
I only had one week between Mum telling me she had a brain tumour and her undergoing surgery, everything happened so fast.
The operation went quite well; the surgeon said he had removed as much of the tumour as they could. A week later, Mum had horrendous pains in her legs. She went to A&E at Peterborough City Hospital; they were concerned it was possibly because of an infection but we didn’t receive an end result.
During this time, we received the histology report from Mum’s operation. It said Mum had a glioblastoma (GBM).
“I knew it was a death sentence and she would likely have just 14 months to live. I felt like I couldn’t breathe, and I felt like that for the one-and-a-half years that Mum suffered. The anticipatory grief was horrendous; there was this terrible thing and there was nothing I could do to stop it.”
Mum began chemotherapy and radiotherapy in October 2018. She had some fatigue, but she wasn’t too poorly. To look at her, you wouldn’t have known what she was going through, she was incredible. Because the tumour was on the frontal lobe, Mum had a big scar across the front of her head which led to her hair thinning in the area. That affected her self-esteem.
Mum had check-up MRI scans every three months. A scan in March 2020 showed the tumour had come back with a vengeance. It coincided with the start of the pandemic, and we were told they wouldn’t be able to operate.
Mum began PCV therapy which a combination of chemotherapy drugs fed intravenously. They had to stop after two treatments because it made Mum quite poorly. It was like she was drunk, which was odd because she didn’t drink.
“It was just a last-ditch treatment, but it didn’t work. It just seemed futile.”
After that, she was on palliative care. Between April and September 2020, my sisters and I were Mum’s sole carers. From September, we got a live-in carer to help.
Mum regressed between April and July 2020 and became less independent very quickly. She was so shaky on her legs, and we had to help her. After my birthday on 2 July, Mum never went downstairs again. A month later, we put a hospital bed in her room; she was confined to it, and we had to help her with eating and drinking.
Mum died at home on 12 December 2020. She was surrounded by all her family, except me. I had left her side the night before because I needed to go back to Nottingham for a training course.
We thought there would be more signs that Mum was going to die, so it was unexpected when she passed away.
“I was shocked at how much of Mum we lost so quickly. We lost a lot of her a long time before she died. Her death was long and painful to watch; it wasn’t this one big moment we expected. Brain tumours are so unlike other cancers, you just can’t predict what will happen.”
When I was at school, I was always interested in science, and I went on to study it at Uni. I’d always been interested in cancer; it’s so devastating and we know so much about it but also so little. At that stage, I hadn’t been touched by cancer.
“Brain tumours can steal so much from people before they die, their sight, memories, movement, and personality. It ended up being a horrible coincidence they would become a part of my life in this way.”
I’m now campaigning alongside Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, in the hope of prompting a parliamentary debate. It calls on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
The statistics around brain tumours are abysmal. They kill more children and adults under the age of 40 than any other cancer, but the Government gives so little to research the disease. They are indiscriminate, and there’s a real disparity with how they are funded and treated compared to other cancers.
“It is so difficult for researchers to get funding to study brain tumours. There are so many brilliant minds with brilliant ideas on how to tackle the disease. There’s the will but they need the funding, it’s devastating.”
The Government has promised this money and they need to be held accountable.
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 historically 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.