Mother-of-three Clare from Wanstead in East London, was diagnosed with an acoustic neuroma in 2014 after her family noticed she was frequently missing parts of conversations. Over the last decade, the 61-year-old has endured Gamma Knife radiotherapy and surgery. Despite living with facial palsy and an involuntary facial muscle movement condition called synkinesis. As a result of her brain tumour, Clare set up her own estate agency and is campaigning with Brain Tumour Research.
Clare tells her story…
When I hit 50, I decided to get a full body MOT. I’ve always been into health and wellbeing. Having completed three marathons before hitting this milestone. I ran weekly as well as taking part in high intensity workouts and fitness classes. There’d been a few things niggling away including the children commenting because I couldn’t hear everything they were saying.
“I saw an audiologist who confirmed there was hearing loss in my left ear, and they referred me for an MRI scan.”
When I look back, I realise there were other signs and symptoms including loss of balance and spatial awareness. Both of which I had no problems with when I was out running, I think perhaps because the momentum kept me going in a straight line.
Doctors told me there was an acoustic neuroma tumour measuring about 1.5cm on my scan image, which they’d caught it early.
The head consultant at University College Hospital London (UCLH) recommended Gamma Knife radiotherapy which I had at St Bart’s Hospital.
I arrived by tube, on my own for treatment. I’d read about what to expect from Gamma Knife after joining a forum hosted by British Acoustic Neuroma Association (BANA UK) which has been a great source of support from a community of other patients living with the type of brain tumour I have.
After the doctors administered a local anaesthetic, a heavy titanium frame was screwed around my head, holding it in place for 50 minutes.
An intense headache followed. Something I didn’t anticipate, and it came over so quickly.
“I spoke to the nurse who described the treatment as basically as heating up my brain.”
I recovered at home and was monitored with scans for some time after. Due to acoustic neuroma being slow growing, it took time for doctors to be able to tell if the treatment had shrunk or stunted the growth of the tumour.
It was six years until further medical intervention. My symptoms escalated; blacking out a few times, with several trips to A&E and spells of severe dizziness. I had some hearing in my left ear, but the sound was distorted.
In 2020 I had surgery at The Royal London Hospital in Whitechapel. Approximately 95% of my tumour was removed and with it, the whole of my inner ear which means I now have no hearing in my left ear and my balance is further comprised.
“I’ve been left with facial palsy and have synkinesis which affects the way the muscles in my face move.”
Every six months I go to a facial rehabilitation at Queens Square to help manage these. I also need to use eye drops throughout the day to keep my eye hydrated and comfortable but there are worse things in life.
One thing that I did do because of my diagnosis was start my own estate agency and I have helped to grow a network called Women in Estate Agency, hosting workshops and conferences alongside my business. That’s something I am very proud of.
In June 2024, I was awarded the International Woman of Influence award at the eXpcon Realty conference in Lisbon.
I speak to hundreds of people who have faced their own challenges but still, when they hear my story and see the visual effects of a brain tumour. Some have even described my facial palsy as a superpower as it makes me stand out and memorable in a competitive industry. They are often surprised that I am standing to tell the tale. But I greet them with the questions, what is the alternative?
I think that’s a misconception about the disease. However, brain tumours are complex, there are many types and subtypes which is why there needs to be investment into research so we can fully understand them all.
Within the last two years, my young cousin has been diagnosed with an aggressive brain tumour, taking on the London Marathon in a time of four hours. I felt the least I could do was sign up to run a half.
My daughter Morgan has always wanted to do a big race and watched me run when she was growing up and we will be running in The Big Half in London on 1 September 2024 in aid of Brain Tumour Research.
One thing I will never do is let my brain tumour diagnosis dictate my life. Running, family and my career has helped me stay focused and I want to be part of the solution and raise awareness of this disease.
Clare Hughes
Published 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 just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Clare’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure