A Newport father who was nearly paralysed after his incurable blood cancer was missed for months has joined the race to find the 851 people living with undiagnosed myeloma in the UK.
Jamie Hart was diagnosed with myeloma in 2016, after months of experiencing severe neck and back pain.
The father-of-one was just 49.
By the time his incurable blood cancer was caught, he had a collapsed vertebra in his lower neck and was on the verge of being paralysed.
As Myeloma Awareness Week (June 19-15) gets underway, Jamie is teaming up with charity Myeloma UK to #FIND THE 851 patients currently living with undiagnosed myeloma in the UK.
As part of the campaign, he is urging the public to learn the tell-tale symptoms, rule themselves out and spread the word about myeloma.
“I felt like my head was going to fall off,” recalled Jamie. “I went to the GP and I demanded a scan because I knew something was wrong.
“When I finally had an MRI the radiographer said, ‘You need to remain still’. She didn’t want me to move. She could see that the vertebrae had collapsed and was compressing my spinal cord,” added Jamie, who was forced to retire from his job as a Leisure Operations Officer following his diagnosis.
“I’d been working for two or three months with a broken neck. I was also coaching a football team at the time and at any point I could have collapsed due to the pressure on my spinal cord.
“I was admitted there and then and was placed in a spinal collar to avoid paralysis. I was operated on three weeks later and remained in a collar for six months, 24 hours a day until the bone had healed.”
Around 5,900 people are diagnosed with myeloma in the UK each year.
But during the pandemic, myeloma saw a drop in diagnoses, with confirmed cases down by 851 compared to pre-COVID expectations.
Despite being the third most common type of blood cancer, myeloma is already frequently missed, as its symptoms, including back pain, easily broken bones, fatigue and recurring infection, are vague and often linked to general ageing or minor conditions.
1 in 4 people wait more than 10 months for a diagnosis. These are some of the longest delays out of any cancer in the UK.
Yet, a simple blood test can, in most cases, pick up signs of myeloma.
Jamie added: “At the end of the day you know your body so if something isn’t right you need to get a satisfactory answer to your questions. I don’t think people realise that myeloma is more prevalent in men than in women.”
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.
Myeloma UK Chief Executive Sophie Castell said: “We know that during the pandemic fewer people were diagnosed with myeloma than expected. This means that around 851 people could be unaware that they are living with blood cancer. The common symptoms are back pain, fatigue, recurring infections or easily broken bones.
“The most important thing people can do is rule themselves out by checking their symptoms and, if anything isn’t right, go see their GP. It might take more than one appointment for your doctor to put the pieces of the puzzle together. So please keep pushing or ask for a second opinion. Together we’ll find the missing 851.”
Jamie, now 55, underwent surgery to have his collapsed C6 vertebra removed and a cage inserted in his neck. He also received 25 rounds of radiotherapy.
He had a stem cell transplant in June 2019.
Unfortunately, he realised his cancer had come back after “a freak accident” while on holiday in Sardinia in June 2022.
“I stood up and moved to cross to the other side of a bus and my arm gave way. An X-ray at a local hospital showed that my upper arm had broken in three places, due to a weakness from the myeloma. In a way breaking my arm was a godsend as that’s how I discovered that the myeloma had returned. I’ve been back on chemotherapy treatment ever since.”
Jamie credits staff at Royal Gwent for supporting him through one of the most difficult times of his life.
“They’ve been fantastic,” said Jamie, who has held various fundraising events in aid of Myeloma UK to fund research into new treatments. “I really can’t speak of them highly enough. I look forward to going there. They’re lovely people, you have a laugh, you have a joke. They make your time so welcoming. I feel I’m being cared for as a friend. The staff always have time for you. If you want to see a doctor, they come out and talk to you.”
Although the cancer has taken its toll and he still has pain in his neck, Jamie is determined to live as full a life as possible.
“My family and I are very positive,” he added. “My friends always say to me I’m too positive for my own good. My family are aware that one day I’m not going to be here, but one day we’re all not going to be here – until a cure is found.
“At the end of the day, I can’t change anything that’s wrong with me. You’ve got to live with it. A positive mentality helps.”
Rule yourself out and Help Find the 851 by visiting https://www.myeloma.org.uk/Find-The-851 (from June 19 onwards).
Myeloma UK runs an Infoline on 0800 980 3332.
