A woman from Cornwall who’s living with a brain tumour has been invited to take over a slot on a local radio station on 17 August.
Ellen Yates, 67, chatted to the presenters at Rewind Radio when she accompanied her husband Kev to the studio to collect a prize he had won in one of their competitions.
As a result, they invited her to guest host their Saturday Morning Takeover slot to raise awareness of brain tumours. She’ll be choosing 20 tracks to play from the 80s, 90s and noughties that all mean something to her.
Joining the brain tumour community
Top of her list is the song ‘Forever Autumn’ by Justin Hayward in memory of her best friend Dawn Parkyn.
“The lyrics are just right,” said Ellen. “I lost Dawn to a grade four brain tumour in September 2021. I’d known her since we were four, so it hit me really hard. She was my soul sister. – even after she moved to America.”
But Ellen herself had been diagnosed with a brain tumour – an acoustic neuroma – in April 2015.
“That means I’ve been involved in the brain tumour community ever since I was plunged into it. I run an online support group with more than 100 members in it and I organise all sorts of fundraising events. When you consider how little gets spent on brain cancers, I feel I’ve got to do something.”
First symptoms
Ellen first thought something was wrong when she started being more clumsy than usual and was falling over more often. She had hearing loss in her left ear that was affecting her balance.
“I would black out sometimes and felt like I was looking through fog. I used to joke that I’d feel normal if I could cut off the top of my head. And I’d say ‘if I fall over, just walk over me!’”
On 29 December 2014, Ellen felt fine when she went to bed but woke with raging earache.
She staggered to the bathroom and, looking in the mirror, thought that her had drooped. But Kev checked that she could raise both hands above her head so they knew it wasn’t a stroke.
Benign is not fine
Ellen said: “The doctor told me I had an ear infection and it was causing vertigo. I kept going back to the doctors and was treated with the Epley Manoeuvre, a procedure that can help some kinds of vertigo. You have to stay upright for 48 hours afterwards. But it didn’t help and I couldn’t sleep for two weeks.
“I kept going back to the doctors and in March, I was referred for a scan. I was diagnosed with a low-grade acoustic neuroma on 20 April. My doctor said I was the first person he had seen with one of these.
“I heard the word benign, which should have been reassuring, but when there’s something benign in your head, it’s not ok. It took about three days for the news to sink in and I went into shock. I broke down, sobbing. I just wanted it out of my head.”
Ellen Yates
When Ellen tried to find support and information, she could only find a Facebook group that was based in the USA. Then she set up her own – the South West Brain Tumour Friendship Group and has since joined The Brain Tumour Charity’s Facebook groups.
The Twilight Walk
Ellen said: “It’s caused all sorts of problems. I still get dizzy spells so I haven’t driven since because I never know when one is going to strike. The tumour causes balance problems so I walk with a stick and it’s affected my memory. At least it’s remained stable – I’ve been on ‘watch and wait’ for nearly 10 years now.
“But I’ve learned over the years to kind of put my brain tumour on a cushion and walk away. My husband Kev is my rock despite having type 1 diabetes himself.”
Ellen has raised thousands of pounds for brain tumour charities and took part in The Twilight Walk in 2018. That’s how she met another walker, Diane. They are planning an Own Walk next year at a venue in Cornwall.
Ellen is also a keen and capable crocheter so is hoping to sell some of her creations to fundraise for brain tumour charities.
Ellen said: “A few years ago I was interviewed on the radio and a man heard me and said to his partner, ‘that sounds like your symptoms.’ She got checked out and had successful surgery. So if I can help one person not feel as alone as I did, I feel like I was given a brain tumour for a reason.”
Click on the button below to find out how you can tune in live to Ellen’s Saturday Morning Takeover on Rewind Radio from 10 – 11am on 17 August, or listen back to it in your own time.