By Kim Reader
A fitness instructor plagued by the smell and taste of GINGER claims doctors told her this was due to the menopause – but she actually had a deadly brain tumour and now has 12 months to live.
In June 2016 Cheryl Byron, 53, began suffering waves of an unusual gingery smell and taste up to 17 times a day which would leave her feeling dizzy and disorientated.
The mum-of-one claims she visited her GP five times in six months but was told she had burning mouth syndrome, a condition brought on by the menopause.
But when Cheryl collapsed at home in Prestatyn, North Wales, on January 5 this year an MRI scan revealed a cancerous brain tumour – and she has now been given 12 to 18 months to live.
Betsi Cadwaladr University Health Board (BCUBH) – the body responsible for Healthy Prestatyn Iach which runs Cheryl’s GP surgery – said they could not comment on an individual case due to patient confidentiality.
Cheryl said: “I had been going through menopause for two and a half years and I had breezed through it but then I started to get this strange taste and smell.
“It was very weird, not really like anything I have tasted before, but it would make my lips and tongue burn. I would be gulping for air – it felt like I was suffocating.
“Not long before it started I had been drinking a drink with a lot of ginger in it and it gave me a tummy bug so I thought maybe I’d given myself some kind of phobia of ginger.
“These episodes – I started to call them my fabulous moments – would leave me feeling really out of it, I would be dizzy and disorientated and they could happen up to 17 times a day.
“The doctor told me it was burning mouth syndrome which was linked to me going through menopause.
“I had never heard of it before and when I did some research nothing came up about women having a taste or a smell but I believed my doctor, of course you do – you respect the profession.
“I went back to the doctor so many times over the next six months but they just kept telling me the same and that I was disorientated because the smell and taste were making me panic.
“Then last month, I woke up one morning and as I tried to make my way to the light switch, I collapsed and hit my head on the mirror. When I tried to get up, I fell again into a chest of drawers.
“I was taken to A&E where they found this shadow on my brain. Just a few days later a specialist confirmed it was a huge tumour that had been there for about eight months.
“And last week I found out I haven’t got very long left to live. It was a hell of a shock. Looking back now, it beggars belief that my doctor didn’t even think to check for a tumour. It’s appalling.”
Scans after Cheryl was rushed to A&E at Glan Clwyd Hospital revealed the stage four glioblastoma brain tumour – the most aggressive form of the disease.
The tumour had been growing in Cheryl’s brain for around eight months – causing absence seizures and the odd taste and smell the mum-of-one experienced.
Surgeons attempted to remove the tumour in a gruelling eight hour operation on January 13, but a follow up scan last week showed the cancer is still spreading.
The only options left for Cheryl, who lives with her husband Jack Byron, 69, and daughter Jamie-Lee Byron, 27, are chemotherapy and radiotherapy in a bid to extend how long she has left with her family.
Cheryl said: “I went from thinking I was just having some difficulty with menopause to finding out I had a huge tumour. I could barely believe this thing was in my head – I hadn’t had a single headache.
“I found out that when I was having my fabulous moments, I was actually having an epileptic seizure caused by the tumour and that’s what was causing the weird smell and taste.
“The specialist told me unusual smells, dizziness and disorientation are the first signs of either epilepsy or a tumour and I had both. I can’t believe my doctor didn’t even think to check.
“It might not have changed my prognosis but I would have had longer to process what is happening and longer to say goodbye.
“When we found out last Thursday that the cancer was still spreading after the surgery it was devastating. The worst for me was seeing my dad, husband and daughter completely break down.
“I’ve tried to be strong and hold it together but I had my first real wobble a few days ago when I was watching TV and a mum was giving away her daughter at her wedding.
“It’s the first time I realised I won’t get to do that and I couldn’t stop crying.”
Despite the devastating news, Cheryl, who starts radiotherapy and chemotherapy this week, is trying to stay positive and spend the time she has left making memories.
The mum has written a bucket list which includes seeing Manchester United play from a private box, going to an Ed Sheeran gig, seeing a West End musical and going to Wimbledon.
Cheryl is also travelling to a clinic in Malaga with her brother Winston Donaldson, 48, to learn about dietary changes she can make to extend her life.
Cheryl said: “I’m going to give it my best shot to make the most of the time I have left and to try to give myself as much time as possible.
“I think it is so important to try to stay positive and I really couldn’t do it without the amazing support of my family. Everyone has been incredible.
“Thinking about how little time I have left still feels really surreal but the time I do have is all about spending time with the people I love, doing things I love and making memories.”
A BCUBH spokesman said: “We are unable to comment on individual cases due to patient confidentiality.
“We would urge anybody with concerns around the care they have received to contact the health board directly so that we can further investigate their treatment.”
To donate to Cheryl’s fundraising click here