Mum's cancer was missed by doctors in two countries

Despite multiple visits to doctors in both Swindon and Ireland, Ryan Harper’s mother, Mary Shannon, was told her severe joint pain was merely a by-product of ageing.

After two years in increasing agony, in November 2021, Mary was finally diagnosed with myeloma, an incurable blood cancer which kills 3,000 people in the UK each year. She was just 54.

By the time her cancer was caught, her kidneys had almost completely shut down.

Ryan, who grew up in Old Town and Haydon End, is now preparing to run the London Marathon on Sunday in a bid to turn a much-needed spotlight on myeloma and support Myeloma UK, a charity dedicated to funding research into treatment and, eventually, a cure.

By taking on the marathon and sharing his story, the 31-year-old hopes to help save lives and make sure others don’t have to endure what his mother did.

“It shouldn’t take somebody having five per cent kidney function to get a diagnosis,” said Ryan who attended St Joseph’s College.

“My ultimate goal is to raise awareness. Looking back over the last two years, she had been struggling with low energy levels, joint pain and other symptoms and despite visiting her GP at Taw Hill Medical Practice, she was not getting any answers.

"She felt like a bit of a fraud. They kept saying, ‘It’s IBS, it’s down to your age, you’ve got to change your diet’. She’d had a motorbike accident when she was 47 years old and when she started getting a problem with her knee they put it down to that.

“She had tried paying for private blood tests, hair strand analysis and Chinese medicine, anything to find out what the root cause was.”

Mary, a freelance Home Search consultant, was preparing to fulfil her lifelong dream of moving to Ireland when her symptoms dramatically worsened.

Ryan said: “In the build-up to the move to Ireland, she had been struggling with pain in her ribs and sternum. An out-of-hours GP at Medvivo advised she had costochondritis, an inflammation where your ribs join the bone in the middle of your chest, which causes sharp chest pain, when moving or breathing.

No scans or blood tests were performed for this diagnosis and she was reassured that anti-inflammatories was all she needed for treatment and sent her on her way.”

But things went from bad to worse. A week after moving to Ireland in September 2021, she collapsed in the shower. She spent three weeks in hospital but was sent home still in agony and none the wiser as to the cause of her symptoms.

Her health deteriorated fast. A few weeks later she was rushed back to A&E. By the time she was diagnosed with myeloma, her kidneys had almost packed up.

Ryan, who works as an asset manager in London, said: “Unfortunately, as she arrived in Ireland, she became lost in the system and was sent home on morphine and increasing kidney failure, with no diagnosis and no follow-up and was in agony.

"What happened to her is shocking and nobody recognised the signs, in England or Ireland.

“At the time, she was in acute kidney failure exacerbated by the strong anti-inflammatories that she was prescribed for costochondritis.”

Thankfully once her cancer was finally diagnosed, Mary, now 55, quickly received chemotherapy and a stem cell transplant.

Myeloma occurs in the bone marrow and currently affects over 24,000 people in the UK.

Mary’s case if far from unusual and getting a diagnosis can be an uphill battle for patients.

Despite being the third most common type of blood cancer, myeloma is especially difficult to detect as symptoms, including back pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions.

More than half of patients face a wait of over five months to receive the right diagnosis and around a third are diagnosed through A&E. By that point, many of them are experiencing severe or life-threatening symptoms.

While it is incurable, myeloma is treatable in the majority of cases. Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving patients’ quality of life.

So far Ryan has raised £1,315 for Myeloma UK towards research into a cure. He’s hoping to smash his £2,000 target by Sunday and help spread the word about myeloma.

“My mum has been there for me all my life, so I need to return the favour,” he said.

“Last year Myeloma UK released their delayed diagnosis report which highlighted that 50 per cent of myeloma patients get a delayed diagnosis, which is completely unacceptable. So a push for early diagnosis and help to improve myeloma patients’ quality of life is urgently needed.

“I hope that by running the London Marathon I will be able to provide vital funds to help more people who urgently need life-saving treatment and support.”

Myeloma is an incurable blood cancer that occurs in the bone marrow and currently affects more than 24,000 people in the UK. On average 16 people are diagnosed with myeloma every day in the UK.

Treatment aims to control the disease, relieve the complications and symptoms it causes, increase patients’ life expectancy and improve their quality of life.

It generally leads to periods of remission, but patients inevitably relapse requiring further treatment. The disease is the 19th most common type of cancer and mostly affects people aged 65 and over, but it has been diagnosed in people as young as 20

To support Ryan and make a donation go to justgiving.com/fundraising/Ryan-Harper92

For more information about myeloma or to get in touch with Myeloma UK go to www.myeloma.org.uk. Myeloma UK runs an Infoline on 0800 980 3332.