When Donna Hicks, went to her GP with constant fatigue and back pain, her symptoms were put down to the fact that she had three children, including a toddler.
But the 49-year-old actually had myeloma – an incurable form of blood cancer.
While there is no cure for the disease, Donna, from Argyll and Bute, is determined to live life to the full.
She says: ‘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.’
When Donna began experiencing extreme tiredness, she knew something wasn’t right.
She 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.’
But the GP was dismissive. Donna, who is mum to two boys, Ollie, then nine, and Conor, seven, and a one-year-old daughter, Emily, said: ‘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.’
Donna decide to get a second opinion from another GP who suspected something was seriously wrong, and ordered a blood test.
The myeloma diagnosis came in September 2014, 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.’
She also had to give up her job as a social work manager, a decision she found devastating.
“My job was really important to me,’ says Donna. ‘It was much more than a just a job to me. It’s the loss of identity.’
Myeloma is the third most common form of blood cancer, 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 was referred by her consultant for what was initially expected to be a ‘one-off appointment’ with Dr Richard Soutar, an expert in myeloma. She has remained under his care ever since.
She said: ‘I remember that first night after seeing Dr Soutar, saying to my husband, Ollie, “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.
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 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.’
Donna is sharing her own experience as charity Myeloma UK prepares to the present The Beaston – the hospital where Donna was treated – with its Clinical Service Excellence Programme (CSEP) Award for a second time.
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.’
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