Father-of-two left ‘2mm from paralysis’ after his neck ‘snapped’ when he ignored months of warning signs of rare disease thinking he was just ‘getting old’
A father-of-two was left ‘2mm from paralysis’ after his neck snapped and he ignored warning signs of a rare blood cancer, writing them off as signs of ageing.
Simon Cummings, 53, first noticed a ‘loss of strength’ in his right arm but suspected he had trapped a nerve in his shoulder. The father then developed yellowing in his eyes and skin in early 2020.
‘I thought something definitely wasn’t right,’ the IT specialist said: ‘But I had put it down to simply getting on in life.’
But when Mr Cummings was cutting wood, ‘a piece flicked off’ and hit him square in the face. He whipped his head back as a reaction and heard a loud crack in his neck.
‘I didn’t think too much of it,’ he said. ‘Until I was crying on the floor in agony a few hours later.
Simon Cummings, 53, first noticed a ‘loss of strength’ in his right arm but suspected he had trapped a nerve in his shoulder. He then developed yellowing in his eyes and skin in early 2020
When cutting wood, a piece flew at Simon’s face, causing him to whip his head backwards as a reaction. That was when he heard a loud crack
Recalling the sheer pain, Mr Cummings said: ‘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.’
Mr Cummings was rushed to hospital to undergo emergency surgery where doctors worked to stabilise his broken neck.
Medics then broke the news to Mr Cummings and his wife Lisa, 47, that he was a mere ‘2mm away’ from being paralysed.
He said: ‘I couldn’t really comprehend the severity of it at the time.’
Doctors did not know the cause of his various symptoms or his broken neck. Mr Cummings claims his symptoms persisted for up to nine months before he got an official diagnosis.
He said: ‘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.’
Simon was rushed to hospital to undergo emergency surgery to stabilise his broken neck
Doctors told Simon he was a mere ‘2mm away’ from being paralysed
Doctors did not know the cause of Simon’s various symptoms or broken neck
While waiting for an official diagnosis, Simon worried about whether he would be able to provide for his son (pictured together) and their family
Simon and his wife had plans to have another child and give his son (pictured) a younger sibling
In September 2020, Mr Cummings was finally told he had myeloma – an incurable form of blood cancer that develops in bone marrow.
Mr Cummings would need to undergo intensive chemotherapy and a stem cell transplant in order to survive.
In a whirlwind of a health journey, Mr Cummings was declared cancer-free in April 2021. He started looking toward the future with his family, including sons Charlie, five and Leo, one.
He said: ‘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.’
But the cancer came back in May 2024 and the father-of-two is going through chemotherapy again – although he has just been informed that he is in remission.
As myelomais incurable, he will inevitably face relapses for the rest of his life.
Mr Cummings hopes to share his story to raise awareness, as the symptoms of myeloma often go unnoticed.
He said: ‘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 your gut instinct.
‘Identifying it early could help reduce the impact of myeloma before it’s too late.’
‘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.’
Simon was diagnosed with myeloma in September 2020 – an incurable form of blood cancer
With his wife Lisa and their two sons by his side, Simon underwent chemotherapy and a stem cell transplant in order to survive
After being declared cancer-free in April 2021, Simon was told the cancer had come back in May 2024. The father-of-two will likely face relapses for the rest of his life
Simon poses with his family. He hopes to share his story and raise awareness about blood cancer
Simon advises: ‘Always get your symptoms checked out if you’re worried and trust your gut instinct’
The brave father wants people to know that a myeloma diagnosis is ‘not the be all and end all’.
He said: ‘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.’
Mr Cummings added: ‘It was difficult, but you can get through it – don’t let it spoil your plans, control your decisions, or impact your future.’