Lizzie, from Hampshire, was diagnosed with a grade 2 atypical meningioma in April 2021 after suffering with double vision. A 14-hour operation removed the tumour but left Lizzie having to re-learn how to walk and talk. Since her daughter’s diagnosis, mum, Debbie has been supporting Brain Tumour Research to help raise awareness of the disease.
Here is Lizzie’s story, as told by her mum, Debbie…
Lizzie has a great sense of humour and that’s something she has maintained throughout her diagnosis. So much so that she had a joke with the health team during her walking rehab. Instead of walking round to the other side of the bed she managed to roll over it. She had the biggest smile on her face and giggled at outsmarting the nurses.
I first noticed something wrong with Lizzie after she mentioned having double vision. Her eyes soon started to turn outwards so we booked to see the GP who sent us to the optician. They found that Lizzie’s pupils didn’t dilate and were fixed to one size. We were back and forth with different medical teams trying to get a diagnosis.
“Within a few weeks Lizzie kept bumping into things and falling over because her vision was so bad.”
She reacted well considering the news and was very reassuring, whereas I was hysterical. There was so much uncertainty, we didn’t know what we were up against.
A biopsy at the end of May helped to relieve the build-up of pressure caused by fluid, as the brain tumour was blocking the pathway for it to drain.
The month wait for the biopsy results was horrendous.
Finally we knew what was in Lizzie’s head, she was diagnosed with a grade 2 atypical meningioma and all I wanted to know is if it was cancer or not. The consultant said yes and no. It’s not cancer, but it does act in a similar way to a cancerous brain tumour.
On 1 July Lizzie had a 14-hour operation to remove the tumour which was growing in the middle and on top of her brain stem. After spending most of the day in the hospital waiting for Lizzie to come out, we went home and received a call late at night confirming surgery was a success and she would have an MRI the next day to confirm if there were any traces of the tumour left.
“Despite everything being swollen, the MRI scan was positive however she was left unable to walk and talk.”
Apart from one arm - which she would use to squeeze my hand, she couldn’t move, speak, eat or do anything.
She worked with a speech and language therapist and physiotherapy team and slowly regained movement, first of all sitting up in the bed and then learning to walk again.
Within two months her voice came back, through the shock of a nosebleed. As she shouted to alert the nurses in hospital to her surprise and theirs, noise came out.
In November Lizzie had a second surgery to fix her eyes and they are now back to how they were before her diagnosis.
Lizzie has six-monthly scans and if the results remain stable, they will likely be less frequent.
The whole time Lizzie has been dealing with her diagnosis, I have been by her side to support her and she is the inspiration behind my fundraising for Brain Tumour Research. Her resilient personality shone through as she joined the family in her wheelchair during our Walk of Hope last year. This year I am taking part in 10,000 Steps a Day in February and now she is able to walk, Lizzie is hoping to complete some of the steps with me.
Lizzie is so generous in sharing her experience, talking openly and honestly. As a family, we hope that by talking about brain tumours, we can help others facing their own diagnosis.
Debbie Deacon
February 2023
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.
Brain Tumour Research is determined to change this.
If you have been inspired by Lizzie’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