Father of two left with ‘2mm paralysis’ after his neck ‘broke’ when he ignored warning signs of rare disease for months, thinking he was ‘just getting old’

A father of two was left ‘2mm paralysed’ after breaking his neck and ignoring warning signs of a rare blood cancer, seeing them as signs of ageing.

Simon Cummings, 53, first noticed a “loss of strength” in his right arm but suspected he had pinched a nerve in his shoulder. The father began to notice yellowing in his eyes and skin in early 2020.

“I already thought something was wrong,” said the IT professional, “but I thought it was because I just wanted to get on with my life.”

But as Mr Cummings was sawing wood, ‘a piece came off’ and hit him square in the face. He threw his head back in reaction and heard a loud crack in his neck.

“I didn’t think about it that much,” he said. “Until a couple hours later I was lying on the floor crying in pain.”

Simon Cummings, 53, first noticed a ‘loss of strength’ in his right arm but suspected he had a pinched nerve in his shoulder. In early 2020, he started to notice yellowing in his eyes and skin

While sawing wood, a piece of wood flew into Simon’s face, causing him to throw his head back in reaction. Then he heard a loud bang

Mr Cummings recalled the sheer agony, saying: ‘If I hadn’t gone to hospital when I did, I would have been completely paralysed at the very least. Or worse, I might not have been here at all.’

Mr Cummings was rushed to hospital for emergency surgery, where doctors attempted to stabilise his broken neck.

Doctors told Cummings and his 47-year-old wife Lisa that he was just “2mm” away from being paralyzed.

He said, “I couldn’t really grasp the seriousness of it at the time.”

Doctors were unsure what caused his various symptoms or his broken neck. Mr. Cummings claims his symptoms lasted for up to nine months before he received an official diagnosis.

He said: ‘All I knew was that I had broken my neck, which was really scary. But because I didn’t feel like I had broken my neck, I didn’t really think about ‘what if’.

‘You only start thinking about these things when you talk about them with your loved ones.

“I started to worry that I wouldn’t be able to provide for my family, spend time with Lisa, play with our son, and that we were planning on getting a little brother or sister for him.”

Simon was rushed to hospital for emergency surgery to stabilise his broken neck

Doctors told Simon he was just ‘2mm away’ from being paralysed

Doctors didn’t know what caused Simon’s various symptoms or broken neck

While waiting for an official diagnosis, Simon worried about whether he would be able to care 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 brother or sister

In September 2020, Mr Cummings was finally told he had myeloma, an incurable form of blood cancer that develops in the bone marrow.

To survive, Cummings would need to undergo intensive chemotherapy and a stem cell transplant.

In a hectic health journey, Mr Cummings was declared cancer-free in April 2021. He began looking to the future with his family, including five-year-old son Charlie and one-year-old son Leo.

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 isn’t ruined by cancer. I want to enjoy our children together.”

But in May 2024, the cancer returned and the father of two is undergoing chemotherapy again, although he was recently told he is in remission.

Because myeloma is incurable, he will inevitably experience relapses for the rest of his life.

Mr Cummings hopes his story will raise awareness, as the symptoms of myeloma often go unnoticed.

He said: ‘Anything that can ensure no one else goes through this like I did would be a huge improvement.

‘Always have your symptoms investigated if you are concerned and trust your intuition.

“If we detect it early, we can reduce the impact of myeloma before it is too late.”

‘There are people who are committed to keeping me alive and who receive support from me Myeloma UK is invaluable. It reassures me.’

Simon was diagnosed with myeloma, an incurable form of blood cancer, in September 2020

With his wife Lisa and their two sons at his side, Simon underwent chemotherapy and a stem cell transplant to survive

After being declared cancer-free in April 2021, Simon was told in May 2024 that the cancer had returned. The father of two is likely to 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 have your symptoms investigated if you are concerned and trust your gut feeling’

The brave father wants people to know that a myeloma diagnosis is “not the be-all and end-all.”

He said, ‘There’s a good chance it will kill you, but you’ve got to get over the initial shock of the Big C.’

“Every cancer is different and you never hear about the good things that are there, or the things that can get better.”

Mr Cummings added: ‘It was tough, but you can get through it. Don’t let it disrupt your plans, influence your decisions or affect your future.’