A blood cancer patient who had holes in her spine was initially misdiagnosed due to ‘being a busy mum’.
Mum-of-three Donna Hicks, 49, went to her GP complaining of constant fatigue and back pain when her youngest child was one.
She was eventually diagnosed with myeloma – an incurable form of blood cancer – aged 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 mum when she was diagnosed.
She had to give up her job as a social work manager, 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 that had constantly been put down to having babies.
“I eventually went to the GP because it was getting me down and the fatigue was really impacting my life.
“The GP was very dismissive. He looked at his watch a couple of times and eventually said, ‘You’re over 40, you work full-time, you’ve got three children including a baby and you’re wondering why you’re tired?’, and basically sent me packing.
“I sat in the car in the car park crying for ages because I knew something was not right.
“I didn’t feel like myself and it was getting 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 over five months for a diagnosis and around a third of cases are only picked up at a late stage in A&E.
Common symptoms including back pain, easily broken bones, fatigue and recurring infections are often mistaken for ageing or other minor conditions.
While incurable, most myeloma patients can respond to treatment to extend their life if the disease is picked up in time.
Donna saw another GP who suspected something was seriously wrong and ordered a blood test.
The myeloma diagnosis came a fortnight after Donna’s mum discovered she had lung cancer, and died 10 weeks later.
Donna said: “I was stuck in this situation of having a really young family and having lost my mum.
“I just felt really desperate. It was really difficult to see beyond that place of darkness to begin with because I was so frightened.
“I just felt that life as I knew it had stopped. My job was really important to me. It was much more than a just a job to me. It’s the loss of identity.”
I just felt that life as I knew it had stopped
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, an expert in myeloma based at the Beatson in Glasgow.
She has remained under his care ever since.
She said: “I remember that first night after seeing Dr Soutar, saying to my husband, ‘I’m absolutely going to be here in 10 years’.”
Donna underwent radiotherapy 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 the Beatson.
She said: “I have a lot of respect for Dr Soutar. He’s very upfront and he’s also extremely caring.
“It’s so lovely to feel like you’ve got a relationship like that with your doctor.
“I feel very fortunate that at the Beatson there is a team that knows everything there is to know about myeloma.
“I know that there are lots of patients with myeloma who don’t ever really see anybody who is a specialist in that area.
“The reality is that some people aren’t lucky with myeloma and it’s very unpredictable and despite best efforts and the best mentality you have around it, it may still never be enough, but I’m still here eight years later.
“Life is never going to be the same again, there’s no doubt about that. The way I see it is there’s a volcano inside me.
“At the moment it’s dormant but at some point in the future it’s probably going to erupt again.
“But while it’s dormant I’m going to get on with things and do as much as I possibly can.”
Donna is sharing her own experience as charity Myeloma UK prepares to the present the Beatson team with its Clinical Service Excellence Programme (CSEP) Award for a second time tomorrow.
The accolade recognises hospitals that go above and beyond to provide compassionate care.
Monica Morris, of Myeloma UK, said: “We were extremely impressed by the Beatson’s willingness to adapt to patients’ needs.
“The team truly goes the extra mile to understand patients and support them when they’re at their most vulnerable.
“For example, when needed, 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 back and forth trips to a separate pain clinic.”