Help stop myeloma in its tracks: Simon’s story

Simon Cummings, who lives with myeloma, shared his story as part of our Spring Appeal this year. Simon had to wait 9 months to get a myeloma diagnosis. He doesn’t want anyone else to have to go through that. 

Simon’s long wait for a diagnosis 

When Simon first felt pain in his shoulder, he saw a physio who suspected a trapped nerve. He was sent away with some exercises, but things didn’t improve. While doing home renovations Simon noticed he was struggling to lift things: 

“Looking back, I’d probably had symptoms for six to nine months. But, I put it down to getting older and going through a stressful situation, because we were doing a house rebuild. Lisa arranged several GP appointments, but the GP didn’t seem concerned. The changes were so subtle on the outside.” 

“What broke the camel’s back is that I was cutting some wood in the garden and a piece of wood flicked off and hit me in the head. I moved my neck back in reaction and I heard a crack. I didn’t think too much of it, but within a couple of hours, I was crying on the floor.”  

Little did he know at the time (August 2020) that he’d broken his neck. Simon, who works in IT, went to A&E and was told he’d likely trapped a nerve. He was given painkillers, but the pain didn’t ease up. 

“It finally got to a point where I thought, something is definitely not right here, I need to get it sorted out. My other half had been noticing changes in me for about nine months. I would look around aimlessly. She noticed changes in my mood. She said I had a yellowing in my eye and skin sometimes but the GP dismissed it.” 

Following an unexpected improvement after a trampoline play session with his son, he contacted his physio. Both surprised and concerned, his physio sent him for an MRI scan in August 2020: 

“After the MRI the radiographer said, ‘Are you OK? Would you like to see a doctor?’ Looking back it was strange.”

The following day, Simon received a call at work asking him to go to Southmead Hospital right away. As he was working in Cheltenham, they told him not to waste another second and make his way to Cheltenham General instead.

“When I got there, they put a neck brace on me and told me to wait for an ambulance to Southmead.” 

Simon’s initial treatment  

Simon received C5 decompression surgery to stabilise his neck (in late August) – which turned out to be broken.  

“When the neurosurgeon came in after the surgery, he said ‘You were 2mm away from being paralysed’. At that point, they didn’t know what it was. They started doing scans to find out what had caused this.” 

He was eventually diagnosed with myeloma in September 2020. He was 49. As well as a broken neck, he had lesions in his shoulder, spine and lower back. “I had never heard of it,” says Simon who has two children. His eldest was two when he was diagnosed.  

“I’m quite a positive person. I thought, OK it broke my neck but I’m not paralysed. Now I have treatment options. It’s better than having cancer and not knowing for two years. I focused on the positives.” 

He received VTD, which made him “blow up like a football”, followed by a stem cell transplant in February 2021 at Bristol Haematology and Oncology Centre, the side effects of which were gruelling. 

He was then put on lenalidomide maintenance, which had only been approved on the NHS two weeks before his transplant. 

Prioritising his family  

Being diagnosed while starting a family was especially difficult for Simon and his partner due to the risk of infertility when undertaking chemotherapy.  

He ended up delaying his chemo so that he could freeze his sperm, in the hope of having another child: 

“They didn’t ask us, ‘What do you want to do about your fertility?’. They said, ‘We want to get you in on Monday to start chemo’. I said, ‘No I want to get my sperm sample sorted out’. I didn’t want to risk that for the sake of a week. We wanted to empower ourselves to be able to make provisions to continue where we left off after the treatment.” 

He and his partner ended up going through IVF and after “four rounds” are now the proud parents of Leo (11 months). Their eldest, Charlie, is now 5.  

“We went through all that in the full knowledge that we weren’t going to let a cancer diagnosis determine the future of our family. We feel we’ve been able to complete our family, and I want to see them grow up. We just want to make sure that everything we’ve worked for over the last 30 years doesn’t get spoiled by myeloma so we can enjoy our children.” 

Simon’s continued treatment  

Simon was in remission for two years but his paraprotein levels started creeping back up. Unfortunately, but not unexpectedly Simon relapsed in 2024. He recently began DVD treatment – almost a year to the day after the treatment was approved on the NHS in April 2023. Knowing new, kinder treatments are becoming available all the time, has been a comfort: 

“In the back of my mind I’m thinking, there’s another new treatment. There are people out there working to keep me alive. Having that advocacy from Myeloma UK, working tirelessly to get these treatments approved on the NHS is invaluable. You know that by the time you get to need it, there’s going to be a new one that’s going to work better or be more tolerable. It puts my mind at rest. 

Finding out about any new treatment, even if it’s been approved for a line of treatment that’s not suitable for you yet, is reassuring.” 

Help others get a quicker diagnosis  

The longer someone has to wait for a diagnosis the more likely they will experience complications. No one should have to wait nine months for a diagnosis like Simon did. That’s why we’re asking if you’ll support our appeal to help more people get an early diagnosis. Every donation will go towards our work to help prevent myeloma.  

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