For Blood Cancer Awareness month, a man is sharing his harrowing ordeal after dealing with the disease twice and says he put his symptoms down to “getting old”.
When Simon Cummings felt a “loss of strength” in his right arm, he suspected he’d trapped a nerve in his shoulder.
He saw a physiotherapist and tried various exercises – but then things went from bad to worse.
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The dad-of-two, 53, developed yellowing in his eyes and skin, along with a sudden crack; where his neck randomly snapped.
Unbeknownst to him, his creaky joints and worrying symptoms weren’t a result of getting older – it was in fact a form of blood cancer – which left him almost paralysed.
“I thought something definitely wasn’t right, but I had put it down to simply getting on in life,” the IT specialist, from Bristol, told Need To Know.
“I was cutting some wood and a piece flicked off, hitting me in the head.
“I jerked my neck back in reaction, heard a crack and didn’t think too much of it – until I was crying on the floor in agony a few hours later.
“Had I not gone to the hospital when I did, I would’ve at the very least been completely paralysed.
“Or worse, I may have still not been here at all.”
Simon claims his symptoms persisted for up to nine months before he got an official diagnosis.
He says his wife, Lisa, 47, had also noticed changes in him, such as looking around aimlessly.
But after his aforementioned accident, he was then sent for an emergency MRI scan in August 2020.
The following day, he was rushed to hospital and was told not to waste another second as he needed immediate surgery to stabilise his neck right away.
Afterwards, doctors broke the news that he was “2mm away” from being paralysed – but were unsure what the cause was.
He said: “I couldn’t really comprehend the severity of it at the time.
“All I knew was I had a broken neck, which was very scary – but as I didn’t feel like I had a broken neck, I suppose I didn’t give the ‘what ifs’ much of a thought.
“It’s when you start discussing it with loved ones that you start to think about those things.
“I started to worry about not being able to provide for my family, spending time with Lisa, playing with our son and our plans to have a sibling for him.”
In September 2020, he was told it was myeloma, an incurable form of blood cancer that develops in bone marrow, and that he’d need chemotherapy and a stem cell transplant in order to survive.
In April 2021, he was officially declared cancer-free and started looking toward the future with his family, including sons Charlie, five and Leo, one.
Sadly, though, in May 2024, the cancer came back.
Currently, he is going through chemotherapy again, but has just been informed that he is now in remission – but since it’s incurable, he will inevitably keep facing relapses for the rest of his life.
He hopes to share his story to raise awareness, as the symptoms often go unnoticed.
He added: “I just want to see my kids grow up and make sure that everything we’ve worked for over the last 30 years doesn’t get spoiled by cancer.
“I want to enjoy our children together.
“There are people out there working to keep me alive and having that advocacy from Myeloma UK is invaluable.
“It puts my mind at rest.
“I would like to think that I can use my experience to help other people look at myeloma differently and realise it’s not the be all and end all.
“There’s every chance it could kill you, but you’ve got to get over the initial shock of the Big C.
“Every cancer is different and you never heard about the good stuff, or the things that can get better.
“It was difficult, but you can get through it – don’t let it spoil your plans, control your decisions, or impact your future.
“Anything that can avoid anyone else going through this, like I did, would be such an improvement.
“Always get your symptoms checked out if you’re worried and trust yout gut instinct.
“Identifying it early could help reduce the impact of myeloma before it’s too late.”
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