Me and myeloma: Donna’s story
My name is Donna. I am 49 years old and from Helensburgh. I have three children. I was diagnosed with myeloma in 2014. When I was diagnosed, my two sons were nine and seven, and my daughter was a toddler. I was a social worker and was devastated when I had to give it up.
Can you tell us about your myeloma diagnosis?
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 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. Eventually, he 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 carpark crying for ages because I knew something was not right. I didn’t feel like myself, and it was getting worse.
I booked an appointment with another GP, who immediately knew something was wrong and ordered a blood test.
I was eventually diagnosed with myeloma in 2014, two weeks after my mum was diagnosed with lung cancer. My mum died ten weeks later. I was stuck in this situation of having a really young family and losing my mum. It was really difficult to see beyond that place of darkness to begin with because I was so frightened. Life as I knew it had stopped.
My consultant at the Vale of Leven Hospital referred me for what was initially expected to be a “one-off appointment” with myeloma expert Dr Richard Soutar at the Beatson in Glasgow.
I remember that first night after seeing Dr Soutar, saying to my husband, ‘I’m absolutely going to be here in 10 years’.
What helped you when you were first diagnosed?
My healthcare team at the Beatson. They everything there is to know about myeloma.
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.
I feel in very safe hands with the team at the Beatson. I know they’re there if I need them, and I really trust them.
What message or advice would you give to someone who has just been newly diagnosed?
Life is never going to be the same again, there’s no doubt about that.
There are so many more treatments now than there were just eight years ago. I will fight this every day for as many years as I have. I want to show my kids and everyone around that you can live with this and have as full and fulfilling a life as you possibly can.
Can you tell us about your experience with remission?
After being diagnosed, I received radiotherapy to heal the fractures in my spine. I also underwent chemotherapy and two stem cell transplants in 2020 and 2021 respectively. I’m currently in “good partial remission”.
The way I see it, 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. I don’t allow myeloma to control my life.
What message or advice would you give to someone who is in remission?
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.
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