A blood cancer patient who had a hole in her spine was initially misdiagnosed due to “being a busy mum”.
Mother-of-three Donna Hicks, 49, went to her GP complaining of constant fatigue and back pain when her youngest child was one.
She was finally diagnosed with myeloma – an incurable form of blood cancer – at the age of 41 in September 2014.
Donna, from Helensburgh, Argyll and Bute, had two sons aged nine and seven as well as her toddler daughter, and had just lost her mother when she was diagnosed.
She had to give up her job as a social worker, a decision she found devastating.
Donna said: “I had this chronic fatigue that I couldn’t shake.
“It wouldn’t lift and I had really bad back pain which had been put down to having children all the time.
“I went to the GP in the end because it was getting me down and the fatigue was affecting my life.
– The GP was very dismissive. He looked at his watch a couple of times and finally said, ‘You’re over 40, you work full time, you have three kids including a baby, and you wonder why you’re tired?’, and basically sent me packing.
“I sat in the car in the parking lot and cried for ages because I knew something wasn’t right.
“I didn’t feel like myself and it got worse. It was awful.”
Myeloma is the third most common form of blood cancer – affecting around 2,000 Scots – but more than half of patients wait more than five months for a diagnosis, and around a third of cases are only discovered at a late stage in A&E.
Common symptoms including back pain, easily broken bones, fatigue and recurring infections are often mistaken for aging or other minor conditions.
Although incurable, most myeloma patients can respond to life-prolonging treatment if the disease is caught early.
Donna saw another GP who suspected something was seriously wrong and ordered a blood test.
The myeloma diagnosis came a fortnight after Donna’s mother discovered she had lung cancer, and died 10 weeks later.
Donna said: “I was stuck in this situation of having a very young family and having lost my mother.
“I just felt desperate. It was very hard to see past that darkness at first because I was so scared.
“I felt like life as I knew it had stopped. My job was very important to me. It was much more than just a job for me. It is a loss of identity.”
Donna was referred by her consultant at the Vale of Leven hospital for what was initially expected to be a “one-off appointment” with Dr Richard Soutar, a myeloma expert based at Beatson in Glasgow.
She has been under his care ever since.
She said: “I remember the first night after seeing Dr Soutar, saying to my husband, ‘I’m definitely going to be here in 10 years’.”
Donna underwent radiation therapy to heal the fractures in her spine, followed by chemotherapy and two life-saving stem cell transplants in 2020 and 2021.
She is now in what is known as a “good partial remission” from the disease and has nothing but praise for her treatment at Beatson.
She said: “I have a lot of respect for Dr Soutar. He is very clear and he is also extremely caring.
“It’s so nice to feel that you have such a relationship with your doctor.
“I feel very lucky that at Beatson there is a team that knows everything there is to know about myeloma.
“I know there are many patients with myeloma who never see anyone who specializes in that area.
“The reality is that some people are not lucky with myeloma and it’s very unpredictable and despite your best efforts and the best mentality you have around it, it still can never be enough, but I’m still here eight years later.
“Life will never be the same again, there’s no doubt about that. The way I see it, there is a volcano inside me.
“At the moment it is dormant, but at some point in the future it is likely to erupt again.
“But while it’s dormant, I’m going to get on with things and do as much as I can.”
Donna shares her own experience as the charity Myeloma UK prepares the Beatson team with its Clinical Service Excellence Program (CSEP) Award for the second time tomorrow.
The award recognizes hospitals that go above and beyond to provide compassionate care.
Monica Morris, from Myeloma UK, said: “We were extremely impressed by Beatson’s willingness to adapt to patients’ needs.
“The team really go the extra mile to understand patients and support them when they are most vulnerable.
“For example, when necessary, patients can see a specialist pharmacist for pain management as part of their regular appointment, saving them from exhausting and, in the wake of the cost of living crisis, potentially expensive round trips to a separate pain clinic.”