One morning in 2021, Glenn Lilley got out of bed feeling far younger than her 69 years.
However, this feeling wasn’t merely a refreshed sense of energy after a good night’s sleep. Instead, she woke up that day having lost 28 years, believing she was 41 and that her grown-up kids were still teenagers.
This overnight memory loss was later revealed to be a symptom of a missed brain tumour, and the gran, now 71, was diagnosed with life-limiting meningioma shortly after.
In 2017, Glenn began suffering with tinnitus and vertigo. But following a scan, an ear, nose and throat specialist (ENT) said there was no cause for concern.
She later collapsed at home, causing her to temporarily lose her memory, and an MRI scan confirmed a large mass on her brain.
Glenn, from Plymouth in Devon, was warned she could die within months without surgery, and has since undergone multiple treatments to improve her prognosis.
‘I thought I was 41, not 69, which was my actual age at the time,’ she said of that fateful day.
‘I’d lost years of my life and thought my boys, who were grown adults, were still teenagers.’
A specialist told her the mass could be seen on the scan from 2017 and revealed the ENT had initially missed the then grape-sized mass, which had grown aggressively since that first scan.
Glenn said: ‘I’m very much a get on with it type of person, perhaps that’s my Yorkshire roots coming through.
‘Rather than harbouring any thoughts of anger towards the ENT specialist I was determined to fight this disease. I hold no blame for the fact the tumour was missed.
‘The way I see things is: a gynaecologist wouldn’t be looking at your feet, so I understand how the tumour could have been missed on the scan looked at by the ENT doctor.’
Following her diagnosis, Glenn’s operation was delayed due to cancellations as a result of the coronavirus pandemic.
While waiting for the procedure she was given steroids to help reduce the build-up of pressure on her brain, and within six weeks had gained three stone in weight.
And although Glenn had an 11-hour operation in September and is now monitored with regular scans, she has been told her brain tumour will grow back and she may need further treatment to prevent its spread.
‘I live with impairments to my vision and I’m deaf in one ear,’ the mum and grandmother said.
‘I have headaches too, but all of this is manageable in the grand scheme of things.
‘Although I was told it was low-grade, there is every chance it will come back, and if it does then I will likely need radiotherapy as further surgery could leave me with life-changing injuries.’
Despite these side effects and the prospect of her meningioma returning within the next ten years, though, Glenn’s outlook is positive.
She added: ‘I am pleased with the way things played out for me. In 2017 the tumour wasn’t immediately life-threatening, and I wouldn’t have wanted to spend the past four years knowing about it and being seen as poorly.’
Her story served as motivation for her daughter-in-law Stacey, who is taking part in the Brain Tumour Research’s Cycle 274 Miles in August challenge.
Glenn is now campaigning alongside the charity to help it reach 100,000 signatures on a petition to increase research funding, in the hope of prompting a parliamentary debate.
Mel Tiley, community development manager at Brain Tumour Research, said: ‘We are grateful to Glenn for supporting our petition and helping to raise awareness.
‘For too long governments have put brain tumours on the “too difficult to think about” pile. Five years after the Government announced £40 million for brain cancer research, less than £11 million has been spent.
‘Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.’
To sign and share the petition before it closes at the end of October 2023, visit the website here.
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