Doctors put my aching joints down to age but silent killer was eating away at my bones
STRUGGLING with low energy and pain in her joints, Mary Shannon knew something wasn’t right.
The then 53-year-old’s local GP said there was nothing to worry about, claiming her symptoms were down to irritable bowel syndrome and her age.
Over a two-year period, Mary saw her GP in Swindon six times, and was misdiagnosed with costochondritis, an inflammation of the cartilage that joins the ribs.
But despite taking medication, her symptoms only worsened over time, before eventually Mary was diagnosed with myeloma cancer and acute kidney failure in December 2021.
There are around 24,000 people living with myeloma in the UK and it accounts for 15 per cent of all blood cancer cases and two per cent of all cancers, according to leading charity Myeloma UK.
Speaking to The Sun, her son Ryan, 31, said his mum’s cancer was repeatedly missed and said she was "lost in the system".
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He said that it was a shock when his mum became unwell, as she is such an active person.
“She’d be doing yoga every week, taking the dog out for long walks and she’d eat really healthily," Ryan said.
“Then all of a sudden she started to put on what I’d describe as water weight due to a build up of fluid, and we both knew something wasn’t quite right."
"My whole body just ballooned up," Mary added.
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"I had this pain which went along with a cough. What they thought was costochondritis was actually my bones deconstructing."
Initially, Ryan said his mum’s symptoms were sporadic but gradually they got worse until it reached the point where Mary felt as though she was being ignored by GPs.
"She said she wouldn’t go back to them as she wasn’t getting any answers," Ryan said.
"Mum had been to Chinese herbalists and nutritionists, but there wasn’t much they could do, however, they did suggest there might be an issue with her kidneys."
In 2020, Mary also complained of a pain in her knee, but had put this down to a previous motorbike accident in Thailand and medics decided to not run any tests.
"They gave her an injection and told her to come back every three months," Ryan said.
What is myeloma and what are the signs you need to know?
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.
Despite being the third most common type of blood cancer, myeloma is especially difficult to detect as symptoms, chief among them pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions.
While it is incurable, myeloma is treatable in the majority of cases.
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.
Myeloma mostly affects people aged 65 and over but it has been diagnosed in people as young as 20.
What are the signs?
- bone pain
- bone fractures
- spinal cord compression
- pins and needles
- numbness
- anaemia
- repeated infections
- raised calcium levels in the blood
- unusual bleeding
- thickened blood
- kidney problems
At this point Ryan said the fluid from his mum’s kidneys was already poisoning her body.
As her symptoms continued, the now 55-year-old decided to move to Ireland.
Ryan said it had been a lifelong dream of hers to be near the sea, but just two weeks later, in November 2021, she collapsed.
Initially, Mary said she was placed on the cystic fibrosis ward rather than oncology.
Mary remained in hospital for three weeks where medics said her kidney function was struggling.
She had a biopsy, which experts initially said would take a week, but Mary was left waiting close to a month for the results.
"Her condition just got worse and worse, to the point where she could hardly walk," Ryan said.
After being released from hospital, Mary was then rushed in second time, it was then in December 2021 that she was given the diagnosis of myeloma, Ryan said.
Despite this, Ryan said doctors hadn’t been forthcoming when it came to helping her.
"One of the doctors told her that there were far more ill patients to be dealing with than her," Ryan said.
"They just made her feel like a fraud.
"Her kidneys were functioning at just five per cent and it was then that she was told she was lucky to have gone in when she had."
While she struggled with the initial treatment, Mary praised the two consultants who finally treated her in Ireland.
"They basically brought me back to life. Without them I’d be dead," Mary said.
Due to being treated in Ireland, Mary has had to pay for all of her treatment.
Luckily, she was able to receive a stem cell transplant last year and is currently doing well.
Now, Mary has to take bone strengthening medication every day and her whole life has changed.
"She just wanted to live by the sea and start a furniture upcycling business", Ryan said.
In order to help others suffering with myeloma, Ryan is running the this year.
"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," he added.
In a statement the practice in Swindon said: “Safety is of the utmost importance to our teams, and we robustly investigate all concerns and actively advise patients to continue contacting us for help when symptoms do not improve.
"We have reviewed the care of Mrs Shannon on numerous occasions, and have provided reassurance to the family that the care given was correct and appropriate for the symptoms presented during each consultation.
"Our patients have a right to raise concerns and, in addition to investigating Mrs Shannon’s care thoroughly, we have openly advised the family of what to do should they remain dissatisfied."
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In a statement, the hospital in Ireland said it is aware of the case.
"We have been in direct contact with the family concerned. It would be inappropriate to comment further at this time."
