Don’t miss myeloma – Sarah’s story

For Myeloma Awareness Week 2022, we want to ensure everyone can spot the signs and symptoms of myeloma, and visit their GP if something doesn't feel right. Myeloma patient Sarah shares her story.

Patient stories // 24th June 2022

This Myeloma Awareness Week, we want to ensure no one misses myeloma. We spoke to Sarah Myers, 40 from Bedford, about the first symptoms she experienced, how this felt different and how she knew something wasn’t right.

Sarah began experiencing back pain in December 2017 after helping with an office move but put it down to lifting and moving heavy objects. A few days later, she had a bad chest infection which she just couldn’t shake and visited her GP. Over time, she grew more and more fatigued and her back pain worsened. When she came down with another chest infection in April 2018, she went back to her GP.

“The GP wasn’t very interested. Possibly because my symptoms presented as other things and I didn’t fit the typical demographic for myeloma. I could barely stand and walk. My breathing was ragged. I was so worn out. It was staggering that she sent me away in that state. But the idea that it was something more serious was never entertained.”

Three days later, her mum took her to A&E where she was diagnosed with asthma and prescribed an inhaler. But it did little to help her shallow breathing. Sarah told her doctor she didn’t think she had asthma as nothing was working. The back spasms kept flaring up along with the chest pain.

Concerned about Sarah’s health, her brother asked a neighbour, who happened to be a haematologist, to take a look at her blood tests. Thanks to his help, she got a referral to Addenbrooke’s Hospital in Cambridge.

“In desperation my brother showed him a copy of my blood test results and I got my diagnosis through the back door in a way. I had quite widespread bone damage unfortunately.”

She started treatment a year after first experiencing symptoms. Sarah is now on her third round of treatment and has had a rod put in her leg. By the time she was diagnosed with myeloma, she had lost 8cm in height and had holes in the bones of her legs, sternum and pelvis.

“My life was changed forever. It was shocking. You can never be the carefree person you were before. On the one hand, you get a sense of relief to know what was actually going on but, equally, I was 37 – so, pretty young to have myeloma. Never in my dreams did I think this back pain was cancer.

When I was diagnosed and they measured me, I remember thinking, ‘It’s not my height’. I was 5ft 8in and I’m noticeably shorter now. I try to be stoic about it but some days it’s really tough. I went undiagnosed for a long time. If it had been diagnosed sooner, perhaps the damage to my bones wouldn’t have been so significant.

I’ve a bit more mobility now and there’s a glimmer of normality coming back but it will never be the same. Bending down to put shoes and socks on is very difficult – all these things I used to do and take for granted.”

Sarah is keen not to dwell on the past and the time it took trying to get a diagnosis.

Instead, she is focused on raising awareness of the symptoms of myeloma and making sure others are diagnosed sooner and have an improved quality of life.

“You know your own body and when things aren’t right with it. Don’t be fobbed off by anyone who says it’s not anything serious. If you feel something isn’t right – an infection isn’t getting better, or the pain has been hanging around for too long – you really need to push for a second opinion or to see a specialist. Keep pressing if you’re not happy with the answers you’ve been given. Be really dogged about getting that diagnosis.”

Learn more about spotting the signs and symptoms of myeloma this Myeloma Awareness Week.