A mother who lost her son to a rare disease aged just 20 says years of misdiagnosis meant it was found too late. Liam Exley was “as fit as anything” before he fell ill and died of asbestos-related cancer.
He started developing “gunky” fluid on his lungs at age 17 back in 2021. He had various procedures to drain it and doctors at King's Lynn’s Queen Elizabeth Hospital (QEH) said he had pericarditis, the swelling of the tissue around his heart. They prescribed an anti-inflammatory called Colchicine, and Liam continued to be in and out of hospital having fluid drained, including an eight-day stay in October 2023.
Diagnosis came too late
A few months later a lymph node on the side of his neck had swollen “like a golf ball” and a biopsy confirmed he had stage four mesothelioma - a rare and aggressive type of cancer caused by asbestos fibres. “When they turned around and told all of us that he had terminal cancer, I rushed out and was sick,” his mother Nicola Anderson said. “I just couldn’t believe it.”
After six months of battling, Liam died at home, aged 20. Nicola said: “He got up, and I said, ‘What are you doing?’ He said he wanted to go to the toilet, and as he sat down his eyes were going.
“I just picked him up - it was mother’s instinct. I thought it was his oxygen lead trapped - but his eyes were flickering, and I said, ‘I’ve got you sweetheart’ and he just closed his eyes in my arms.”
Rare in young people
Mesothelioma UK says that symptoms of the disease include the accumulation of a sticky recurring fluid in the lungs called pleural effusion. Ms Anderson, from Swaffham, in Norfolk, believes that this is what Liam had been experiencing for the years before his diagnosis, and had doctors realised it sooner, it may not have gotten to stage four so quickly.
While the disease cannot be cured, it can be managed to slow its growth and help patients live longer. Most people who develop the cancer are over 65, as they are individuals who had worked in high-risk trades during their younger years where there was less protection against asbestos exposure. However, how Liam developed it is not known.
It is considered to be extremely rare for young people - and Liam is the second youngest in the UK to have died from it. Ms Anderson believes that this may have contributed to his late diagnosis. The QEH has said it does not comment on individual cases.
Raising awareness
While the disease cannot be cured, it can be managed to slow its growth and help patients live longer. Now Liam’s mother is raising funds and awareness of mesothelioma to not only help people recognise the symptoms - but also support treatments for others.
“Liam was the light in the life of everyone lucky enough to know him - happy, kind, loving, intelligent and funny,” she said. “Having finished his schooling, he was completing his carpentry apprenticeship with Flagship Housing - well on his way to qualifying as a kitchen fitter.
“He was an incredibly talented sportsman, football and cricket being two of his main passions. He was still playing cricket the summer before he passed away, scoring 87 runs not out in his last match.
“Constantly looking forward, he was planning his future with friends and family, places he was going to go, and things he was going to do. Full of boundless love and energy, there was never a dull moment when Liam was around.
“Losing a child is something no parent should ever have to experience, and what an incredibly overwhelming time it has been,” Ms Anderson said. "Just like Liam, I won’t give up. I can do brave things, and I am determined to share Liam’s story, to raise awareness, and to help advocate for others.
“I want to continue to make Liam proud. His fight was never in vain, and his story will continue to improve things for everyone who has to fight the same fight after him.”
Charity climb and match
Over the weekend, Ms Anderson successfully climbed Snowdon, the highest mountain in England and Wales, in memory of her son.
“It took me under four hours. It was quite hard at the end - but I got through it,” she said. “It was hard work, and it was freezing cold; I couldn’t even feel my fingers - but you just go with your heart anyway. I just had to do it.”
Liam’s brother Harry and his uncle Wayne will also be holding a charity match at Swaffham Town Football Club on Sunday, August 23. It was a tradition started by Liam himself while he was battling cancer in 2024.
Gates open at 12pm for a 1pm kick-off. Donations can be made to Mesothelioma UK and the Addenbrooke’s Teenage Cancer Trust’s C9 Unit upon entry. There will also be a bouncy castle, an auction, ice cream and food.
People can also donate to the GoFundMe page.
