Watching your child reach important milestones feels magical for any parent, but for Clare Smerdon it’s particularly poignant as she’s painfully aware she’s unlikely to be there to see many more of her three-year-old Teddy’s big moments.
Two years ago the single mother received the shattering news that she had a glioblastoma (also known as a grade 4 astrocytoma), a fast-growing, aggressive primary brain tumour without a cure. Only five per cent of those diagnosed survive for five or more years.
“Teddy hasn’t started school yet, and I want to be there for the big events,” says Clare, 36. “But I know I won’t be. It’s a terminal disease and I was told a year ago I only have two or three years left. I feel so guilty – I’ve only just brought him into the world and now I’m going to leave him.”
In June 2022, Clare began suffering excruciating headaches along with seeing flashing lights and colours. She went to her optician who spotted something amiss and referred her to her GP. He prescribed a different migraine medication for the disorder she occasionally suffered with, but still the headaches continued. “My son was just over a year then, so I put my tiredness down to being a busy mum,” says Clare, a podiatrist from Paignton, Devon. “I needed to rest more, but once the constant headaches began, I struggled to look after myself, never mind Teddy.”
The headaches lasted for days on end. After six weeks of this pain, in the early hours one morning in July, she fell and was taken to A&E where she had a CT scan. “A doctor examined my eyes, saying he thought something neurological might be going on,” recalls Clare, who is separated from Teddy’s father, Dave. “Later he came back and said, ‘I’m afraid I’ve got some bad news for you’.”
The doctor explained a 6.4cm tumour was growing in her brain. “I was totally stunned,” she says. “Everything in my life changed from that moment.” Due to the tumour, Clare’s behaviour started becoming erratic. On one occasion while staying at her parents’ house, she jumped out of a window to avoid speaking to a neighbour who had called by.
In August 2022, she began treatment designed to extend her life. First she had a craniotomy, surgery where almost all of the tumour was removed through a hole in the skull. “I was scared of having brain surgery, so asked my surgeon ‘what happens if I don’t have it?’ He replied honestly, ‘You won’t see Christmas’.”
A biopsy confirmed it was a glioblastoma (GBM), the most common high-grade brain tumour. About 3,200 adults are diagnosed with it in the UK annually.
“I had a big scar across my forehead and 42 staples on the top of my head where my hair had been shaved for surgery,” says Clare. “While people gasped when they visited, Teddy just shouted ‘Mummy!’ and gave me a big hug. It was lovely.”
Following her surgery, Clare had side effects including loss of peripheral vision, memory issues and fatigue. For a time she had impaired speech and needed to learn to walk again. Her parents and Dave cared for Teddy as Clare began six weeks of radiotherapy, followed by six months of chemotherapy.
“During that time, I felt very disconnected from Teddy as I couldn’t be his mum, which made me feel very guilty,” admits Clare. “It really crushed me and I felt completely useless.”
As Clare slowly recuperated, she began bonding with Teddy again. “We got to know one another again as we hugged and cuddled,” she says.
But in September 2023 an MRI scan detected a 2mm lesion – an area of damaged tissue which has not yet been biopsied – on her brain which had doubled in size by her next appointment in November. Her oncology team decided on a period of ‘watch and wait’. “I knew the cancer had come back so I started researching ways to help myself,” says Clare. “I made lifestyle changes such as following the keto diet [eating low amounts of carbohydrates] and having regular intravenous infusions of vitamin C.”
Although at first the lesion continued growing, at Clare’s last appointment in May this year, it had shrunk. “That was really promising,” she says. “We don’t know if it was the radiotherapy and chemo, or some of the things I’ve been trying.
“I have very dark days, but having my Teddy gets me out of bed each morning to do nice things together.”
Knowing her time is limited, Clare has written very personal letters to Teddy to open at key stages during his life. She’s also bought gifts for future birthdays. “I’ve been writing the letters in the hope it will help him remember me and know he had a mummy who really loved him,” she says.
Clare is fundraising for brain tumour research and took part in last September’s Walk of Hope. “There are so few options for brain tumour patients, so I know I’m lucky to still be here,” she says. “While I still have a voice, I want to use it to try to make a difference. I want kinder treatments without such horrible side effects to give patients like me more hope.”
■Brain Tumour Research’s Walk of Hope takes place across the UK on Saturday, September 28. For more information visit braintumourresearch.org