Jackie Macdonald was first diagnosed with myeloma, an incurable form of blood cancer, in 2014 after she went to the doctor with what seemed to be a fairly normal basket of symptoms.
“It started with me having really swollen legs but I was walking 80 miles a week so I thought it was the walking. I had also been to the doctor with what I thought was UTI – it just felt uncomfortable,” Macdonald said.
She was training for the Caledonian challenge at the time and the strenuous exercise meant that her symptoms were showing up “in a more dramatic way”, making it difficult to diagnose. However, the 58-year-old persisted and eventually got a diagnosis of myeloma and AL amyloidosis when visiting another GP at the practice a couple of months later.
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“It’s a difficult cancer to diagnose – to be on the pathway is quite tricky. It’s a series of circumstantial presentation you go to the doctor with. You don’t have a lump or something concrete. The bundle of symptoms is nebulous,” the mother of three has said.
She added: “It was all a total surprise. It’s incurable and it will always keep coming back. They liken it to a dripping tap and you just hope the tap will stay nice and tight for 10 years, 15 years.”
The Edinburgh woman was in remission for several years but relapsed in 2021 and still manages her condition to this day. Macdonald said: “I feel rubbish sometimes. It just saps your energy.”
The 58-year-old added: “I had never heard of AL amyloidosis. A friend of mine was the poster girl for myeloma in Edinburgh and our kids were at school together so I knew of it but not about it.”
Jackie Macdonald said we need GPs to keep asking questions and pushing for solutions around this condition given its so notoriously difficult to diagnose. Tomorrow marks the 25th anniversary of Myeloma UK, and coincides with Blood Cancer Awareness Month, with an average of 16 people every day in the UK diagnosed with the condition.
When the Edinburgh-based charity was founded in 1997 there were no treatments for the condition and those diagnosed had a life expectancy of 12-24 months. There are currently 12 treatments available for the disease and the life expectancy of myeloma patients in the UK has quadrupled over the past 25 years.
However, Myeloma UK relies heavily on charitable donations to continue fighting to find a cure for the disease and help those who are diagnosed live as long as possible. To find out more please visit their website .
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