Ellen Yates, 67, from Illogan, Cornwall, was diagnosed with an acoustic neuroma in 2015 after suffering from repeated dizzy spells and hearing problems. The tumour has instigated a host of difficulties, including a loss of memory and balance, and must be constantly monitored should Ellen’s condition worsen. Ellen has raised thousands of pounds for brain tumour charities and runs her own support group for those living with tumours and their families.
Ellen tells her story…
I remember going to bed fine on 29 December 2014 but then waking up the next day feeling strange, almost like I was drunk. I was staggering across the landing, half of my mouth had drooped, and I could barely stand. I thought I was having a stroke.
The doctors told me I had an ear infection; I was given the Epley manoeuvre, where you turn your head in a variety of movements to clear the vertigo. This didn’t do anything and only ended giving me sciatica, the whole thing was a complete mess. I had to take sleeping tablets to get through the pain.
In January and February 2015, all I did was sleep whilst my hearing in my left side got worse and worse. I even used to joke that I wanted to cut the top of my head off as I felt I was looking through a brain fog.
In March, I was finally sent for a scan, and it took another month to find out my results.
I was told I had a low-grade acoustic neuroma. For three days I was in a false sense of security, as the doctor said it was ‘benign’. Then I realized what it really meant.
“I remember collapsing in the shower sobbing. I had something in my head that should not be there, and I just wanted it out.”
They didn’t want to risk radiotherapy as there was no guarantee it would make anything better and might make it worse. I was just left to my own devices after that. Now, I have to wait anxiously for my next scan to check if my tumour has grown significantly.
It’s easy to imagine that low grade tumours aren’t that serious, but its impacted my life so much in so many different ways. At the beginning, I thought benign meant pink and fluffy, but I was very wrong. A benign tumour in your head is not the same as having a benign tumour elsewhere.
My tumour is on the nerve that controls my balance, so I now fall over easily and have to walk with a stick. My whole right side can seize up. Sometimes, my dear husband, Kev, has to help me on and off the toilet and roll me out of bed.
I haven’t driven since 2014 as I never know when I’m going to get dizzy spells. I also struggle with my memory and my hearing. I know people with the same tumour as me who suffer from terrible epileptic fits.
“I know multiple people who have lost their lives to the disease, and many more who are in the midst of their battle against it.”
My best friend, my soul sister, Dawn Rogers Parkyn, died of the disease in 2021. She wasn’t as lucky as me, if luck is the right word. Just seven months after being diagnosed with a glioblastoma (GBM), she passed away.
We met when we were four years old in a convent in Penzance. She was such a funny person who loved horses and swimming, and some of my earliest and favourite memories are of her. After all that time, we never fell out and always respected each other.
She relocated to America around 30 years ago, but we always kept in touch. I’m quite spiritual, and had this nagging feeling that I had to see her on my 60th birthday. I paid for her flight to come over, and it was so important that I did, because that proved to be the last time I would ever see her in person.
She was such a big support to me when I was diagnosed, but she never told me or her family when she herself had been diagnosed with the GBM. We’ll never know why she kept it from us.
We knew she had suffered from a stroke and that she was paralysed down one side.
“I remember her saying things like, ‘half of my brain is dead.’”
I was urging her to get a scan to check for a tumour, but she must have already known and not said. As the year wore on, she became very unresponsive and immobile, which was heartbreaking to watch. Every time she heard my voice I felt something stir inside her though. She would smile, and would know my friend was still there, despite barely being able to move. I remember her managing to kiss the phone when we were on a video call, which meant so much.
I can still feel her with me now, always, and in a way, I’m thankful that she didn’t last too long, as she was in so much pain.
“So many people have symptoms of brain tumours and don’t know they have one. Just 1% of the national spend on cancer research has been allocated to brain tumours since records began in 2002, I just don’t get why.”
I have taken awareness leaflets about the disease to my local surgery, yet they refused to allow them in the waiting room. I understand that you can’t give a scan to everyone who has a brain tumour symptom as they’re expensive, but I’ve heard stories of children who have to keep going back as the doctors aren’t taking them seriously. It’s so wrong.
“Brain tumours and brain cancer seem to be dirty words that get swept under the carpet. I’ll stand up and shout about it from the rooftops; more funding is needed if we are to find a cure!”
I run the South West Brain Tumour Friendship Group on Facebook for people living with tumours and their loved ones. If I can help just one person feel not as alone as I did, then I will feel like I’ve been given my brain tumour for a reason.
Having a brain tumour has changed my life, but it’s given me a chance to smell the roses in a way. I was always running around at 100mph, now I know to appreciate every moment.
Ellen Yates
August 2024
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they 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.
Brain Tumour Research is determined to change this.
If you have been touched by Ellen’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.