IT worker’s strange mouth movements were actually TWO brain tumours

A cyclist has revealed how he only discovered he had two brain tumours after suddenly collapsing on a bike ride when he could not control his mouth.

Steve Ryder, from Stainland in Calderdale, was rushed to hospital after suffering a seizure in July last year.

The 51-year-old recalled how just a quarter of a mile up a big climb, he could not his mouth from “opening and shutting on its own”, with his involuntary actions eventually revealing a hidden and sinister diagnosis.

“I put my hand over my mouth to try and stop it but the movement was involuntary and it wouldn’t stop,” Mr Ryder said. “I pulled over and rested my bike up against a wall at the side of the road. I sat down and a few seconds later, I began having a seizure.”

Mr Ryder, who has a wife Eileen and is a stepdad to her three children, managed to attract the attention of a passer-by who stopped and called an ambulance.

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He was taken to Calderdale Royal Hospital in Halifax where he underwent a CT scan.

Mr Ryder said: “Because of the coronavirus restrictions, Eileen wasn’t able to stay with me in hospital and so I was on my own when, at two o’clock the following morning, the curtains were pulled back around my bay and I woke up to the sight of about eight medics, masked up at the foot of the bed.

“One of them unceremoniously told me that I had two brain tumours and two brain bleeds.”

Steve’s case was referred to Leeds Centre for Neurosciences at Leeds General Infirmary (LGI) and after an anxious wait he was invited to meet a consultant neurosurgeon, who said that, fortunately, the tumours were operable.

Just over a week later, he had a seven-hour operation to remove the tumours but surgery came at a difficult time for the family with Eileen discovering her mum had died just before he was taken into theatre.

He said: “As if the situation couldn’t have been more stressful for Eileen, as we waited for me to be taken into theatre, she received a phone call to say her mum had died.

Steve collapsed on a bike ride
Steve collapsed on a bike ride

“My mother-in-law was 83 and had been suffering from dementia. It was just horrific. I felt awful that I couldn’t be there to support her.”

Mr Ryder’s post-op scan images confirmed that both tumours had been successfully removed and he was discharged from hospital on Monday, July 27

However, the results from the histology revealed a shock diagnosis, Steve was not expecting.

He said: “The biopsy results showed I had stage 4 melanoma. It later transpired that I had received incorrect results from a histology report on a mole that was removed from my chest in May 2018.

“Having been told that the mole was non-cancerous, it was re-analysed and cancerous melanoma cells were, in fact, discovered. It was very difficult news to digest.”

In September 2020, Mr Ryder began a course of immunotherapy, involving the drugs Opdivo (Nivolumab) and Yervoy (Ipilimumab), which were administered intravenously four times, with a three-week gap in between each treatment.

The gruelling treatment caused noticeable side effects with My Ruder expering itchy skin and he soon became diagnosed with hepatitis.

He said: “I started to suffer from quite a lot of side effects after I’d finished the treatment. My skin was itchy and I generally felt unwell. I had some blood tests, which revealed that the alanine aminotransferase levels in my liver were raised and I was diagnosed with a form of hepatitis.

My pituitary gland had also been impacted and my body had stopped producing cortisol, so I was given hydrocortisone tablets. My thyroid started malfunctioning, so I was prescribed thyroxine as well.

“All of this, combined with the steroids I was on, amounted to a real cocktail of drugs to try to keep me well.”

Mr Ryder has continued to have MRI scans, with the latest earlier this month revealing that the tumour has not returned.

However, he has suffered two more seizures and is living constant fear that he could collapse at any moment.

After a devastating few months, Mr Ryder, who works in IT for Lloyds Banking Group, admits his outlook on life has changed massively.

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He set up a birthday fundraiser on Facebook for Brain Tumour Research which amassed hundreds of pounds and he had an important message to people, urging them to make the most of every day of their lives.

He said: “Going through something like this really helps to put everything into perspective and my outlook on life has definitely changed.

“I’ve learned to live a lot more, as best you can during lockdown, and not to put things off. I advise others to do the same, as you never know what is around the corner. You only ever have today; tomorrow is not guaranteed.”

More research needed

Steve, pictured with his family
Steve, pictured with his family

Brain tumours kill more children and adults under the age of 40 than any other cancer, yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.

Matthew Price, community development manager at Brain Tumour Research, said : “Steve’s strength and positivity after all he’s endured over the past few months is really inspiring.

“We’re pleased he’s recovered well from surgery and wish him all the best for his ongoing treatment. We are really grateful to him for fundraising and for helping to raise awareness of this devastating disease.

“This March, we are leading the way with a programme of activities to demand increased national investment to ensure a cure is found for brain tumours.

From hosting a Wear A Hat Day event to signing our petition, engaging with your MP or taking a quiet moment to reflect, there are lots of ways that you can support the campaign. Please get involved to help us get closer to a cure.”

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.

The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.

To find out about Wear A Hat Day visit the website here.

YorkshireLive – Halifax