Glenn, from Plymouth, began suffering with tinnitus and bouts of vertigo in 2017. Results of a scan in the same year showed no cause for concern. Years later, in July 2021, Glenn collapsed at home and a scan confirmed she had a meningioma. Without treatment she was given six months to live. She had an operation to save her life and is living with impaired hearing and vision as a result of her diagnosis. Glenn, who grew up in Yorkshire, said she harbours no resentment to the delay of her diagnosis and is using her own experience to help raise awareness for the younger generation of brain tumour patients.
Glenn tells her story…
My symptoms started in 2017 with tinnitus and vertigo. I went deaf in one ear overnight and was referred to an ear, nose a throat specialist (ENT) as my symptoms pointed to an acoustic neuroma. I had an MRI scan and on analysis, the ENT specialist said there was nothing unusual and no sign of this type of brain tumour. I was fitted with two hearing aids, and the bouts of vertigo was something I would have to learn to live with.
I have never been one to trouble my GP. My family say it’s my roots as a Yorkshire woman; I brush myself off and get on with things. Over the next few years I coped and carried on with life.
On 1 July 2021 I collapsed at home as I was bringing in shopping from the car. Everything went black and I hit my head on the stone step of the front door.
My husband, John, took me to A&E where I was so disorientated I didn’t even know my own name. Doctors thought I could be having a stroke.
I temporarily lost years of my life and travelled back to a point in my life more than two decades earlier. It was a surprise to find out I was 69 and not 41 which I thought when I came after collapsing – which I later found out was a seizure. I thought my children were still boys and didn’t remember I had five grandchildren.
I didn’t recognise John, even though we had been together for 53 years, I knew his name but couldn’t think who he was and why he was with me. I remained in hospital for a week and had tests and a scan of my head.
On 26 July, Professor Whitfield told me I had a brain tumour from behind my left eye to the back of my head. From the image on the screen the tumour looked like two plums.
With my full medical notes in front of him, Professor Whitfield said the mass could be seen on the scan from 2017 and the ENT specialist had missed the then grape-sized mass. He commented on how aggressively the tumour had grown since 2017.
I instantly told him I bear no grudge against the specialist who looked at my scan before.
I’m glad I didn’t know about the tumour before because I wouldn’t have wanted to be viewed as ‘poorly’. I feel fortunate with how things turned out and the way I look at things is: a gynaecologist wouldn’t look at your feet, so I understand how the tumour could have been missed on the scan which was looked at by the ENT doctor years earlier.
He continued and told me that without treatment, I would ‘fade away’ and die within six months. The tumour was too big for radiotherapy and chemotherapy wouldn’t have any effect on it. My only option was to have an operation.
This was around the time that COVID cases in hospitals were rife, and my surgery was cancelled twice as there were no beds in the ICU. Slowly my mobility deteriorated, and I felt like I was dying.
The steroids I was placed on to help reduce swelling and pressure build-up from the tumour saw a sudden weight gain, forcing me to buy maternity clothes. I went from 10st to almost 13st, and looked like a different person.
By the time I had surgery, on 28 September 2021, I was using crutches to get around. Eleven hours later I came round to the professor saying they removed the mass and I was told my tumour was a grade 2 atypical meningioma. Although I was told it was mid-grade, there is every chance it will come back, possibly in ten years. If it does then I will likely need radiotherapy as further surgery could leave me with life-changing injuries.
It took me a year to lose the weight I gained. I started doing more steps, walking outside, firstly with crutches and then without and gradually built up my fitness. To celebrate the first anniversary of my surgery in September 2022, I walked 31,000 steps from Berwick-upon-Tweed to the Scottish border.
I still get headaches and forget my words. At the end of the day my face feels as though it is dropping but when I look in the mirror I can’t see any difference. I also find myself constantly wiping my runny nose and mouth, but these are all manageable things in the grand scheme of things. I am so grateful to be alive.
I’m not sure that many people realise brain tumours are the biggest killer of children and people under 40 than any other cancer. I became a volunteer for Brain Tumour Research and distribute Believe magazine far and wide and my daughter-in-law Stacey, is taking part in Cycle 274 Miles in August.
I’ve encouraged everyone who will listen to add their signature to the petition which is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
I am now 71 and have had a wonderful life with an amazing husband and family. I am so grateful to Professor Whitfield and the staff at Derriford Hospital for saving my life. But now I am beating the drum for the young people living with the disease.
Glenn Lilley
July 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 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 inspired by Glenn'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.