Shona Gilmour has warm memories of the day her son Matthew’s friends gathered at the front door, armed with sweets and smiles. It was May last year and Matthew, then 11, had recently undergone major surgery on his liver to remove a sarcoma.
“The operation had gone well and, as far as we were concerned, Matthew was in the clear,” says Shona, 43, from Kilbirnie, North Ayrshire. “The boys were all on their bikes. I got them some juice and they all sat out in the front garden, laughing and joking. It was just so lovely to see Matthew with his pals, being a normal kid again.”
It therefore came as an appalling shock when, weeks later, a scan revealed that Matthew’s cancer had in fact spread.
Indeed, for the past decade, Shona’s life has been shaped by the trauma of repeated cancer diagnoses.
In 2012, Shona herself was diagnosed with breast cancer. “It was quite advanced and I was told to ‘get my affairs in order’ – which is horrifying when you have a baby,” she says. She went through two gruelling years of treatment, including radiotherapy, chemotherapy and a mastectomy.
“When it was all over, I made a fresh start. I thought it was terrible luck – a one-off,” she says. A single parent, Shona kickstarted her life again, and began working for Parent Network Scotland, a charity that provides peer-to-peer support to parents and families. But then a follow-up mammogram two years later revealed cancer had returned in her other breast. She went ahead with another mastectomy, and was tested to see if she had mutations in her BRCA1 and BRCA2 genes, which can significantly raise the risk of breast and ovarian cancer, and are typically inherited – but her results showed that she didn’t have changes in these genes.
“Having cancer twice – and two different types – left me with huge anxiety that it would come back again,” she says. “For a while, I was paranoid about what the future held but then I thought: ‘I’ve got to get back to normal, for Matthew’s sake.’ I started work again and we carried on with our lives but in the back of my mind, I was still scared about cancer coming back. I thought we had to make the most of life and make memories, in case something else happened to me. I never for a moment thought it would be the other way around.”
Shona clearly remembers the day Matthew first complained of stomach pains in 2021.
“It was a hot day and he was playing in a friend’s paddling pool,” she recalls. Matthew was a fit and active boy: he loved running and laser quest, while at home he was into watching Stranger Things and playing Minecraft. “It was completely out of character for him to complain about anything,” says Shona.
She took him to the GP and after much to-ing and fro-ing between the doctor and A&E, and misdiagnoses of constipation and trapped wind, Shona felt she was getting nowhere. “Then one day, he was playing on the climbing frame at school when a child accidentally kicked him in his side. He came out in this huge lump and I instantly thought: ‘That’s not normal.’”
Matthew was referred to Glasgow’s children’s hospital and a scan revealed the worst: he had a sarcoma on his liver.
“It was like I’d been slapped in the face,” says Shona. “I kept thinking, I’ve already been through this twice – isn’t that enough? Why him? I was looking around at all the kids on the ward and it just seemed so unjust that children should have to go through this. I wanted to take it all away.”
Shona is now coming to terms with the fact that she will never see Matthew go through the same milestones as his friends
Chemotherapy started quickly and in January 2022, Matthew had specialist surgery to remove the tumour. But months later, Shona was told the devastating news that the cancer had spread and Matthew’s condition was terminal. There was no operation that could help, all the doctors could do was give him time.
“Around this time, I discovered I had an error in the TP53 gene, which Matthew had inherited from me. This means there is [more than] a 90% chance of getting cancer during your lifetime – most people with it are diagnosed with some form of cancer before their 30th birthday. Learning about this genetic change, which also makes cancer more likely to recur in those who survive it, was just crushing.”
After a miserable three-week stay in hospital and a final attempt at life-prolonging chemotherapy that was making Matthew terribly ill, Shona brought her son home for the last time in August last year. “Finally, he felt relaxed and safe – the fear he had while he was in hospital went away,” she says. The pair made some final memories: a call with Gaten Matarazzo, who plays the character Dustin in Stranger Things; a limousine ride to school with his friends and an overnight stay in a hotel. “But as he got weaker, he just wanted it to be over,” says Shona. Matthew died in her arms on 13 September.
Since then, she has struggled with grief and the immense trauma that comes from watching a child go through so much pain. “Sometimes it feels like yesterday and sometimes it feels like forever since I last saw him. With parents or a partner, you know it will happen one day but with a child it’s unthinkable.”
For now, Shona is taking her life one day at a time, still trying to come to terms with the fact that she will never see Matthew go through the same milestones as his friends while also dealing with the likelihood that she will be diagnosed with cancer again one day.
But one thing she has decided to do in Matthew’s honour is leave a gift to Cancer Research UK in her will. That money will help fund ongoing analysis and understanding of how genetic changes such as her own can lead to cancer. “Understanding these underlying processes has already led to more effective treatments for patients,” says Cancer Research UK’s Dr Emma Smith.
While it’s too late for her own family, Shona’s hope is that Cancer Research UK’s groundbreaking work will save future generations from going through similar pain.
“I don’t want any parent or child to have to go through this and it will only be through science that, one day, we will eliminate cancer for good. We also need medication and treatments that don’t make people suffer, and that will also only come through research. It’s our only hope.”
Help prevent cancer in the future
Pledging a gift in your will is one of the most powerful ways you can support the work of Cancer Research UK; gifts in wills fund one third of CRUK’s work and make sure that research into cancer continues in the future. Legacy gifts ensure that scientists can advance our understanding of why and how cancer develops, plus develop new methods of diagnosis and better treatments, that directly leads to better outcomes for many people who are diagnosed with cancer. For more information, go to: cruk.org/giftsinwills
