“I lost years of my life” - Woman with missed brain tumour wakes up thinking she’s 28 years younger
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Glenn Lilley thought she was 41 not 69 when she woke up after collapsing in 2021. The now 71 year-old thought her grown up kids were still teenagers and was given a life-limiting prognosis after she was diagnosed with a meningioma.
However, the tumour was originally missed by doctors after in 2017 she began suffering with tinnitus and vertigo. But following a scan, a specialist 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 without surgery she would die within months. Describing waking up one day in 2021, the-grandmother-of-five said: “I thought I was 41, not 69, which was my actual age at the time.
‘’I lost years of my life and thought my boys, who were grown adults, were still teenagers.’’ A specialist then told her the mass could be seen on the scan from 2017 and the ENT specialist had missed the then grape-sized mass.
The tumour had grown aggressively since that scan. She 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.” Glenn’s operation was delayed, following two cancellations due to high COVID-19 cases.
In the meantime, she was given steroids to help reduce the build-up of pressure on her brain, and within six weeks gained three stone in weight. She had an 11-hour operation in September and is now monitored with regular scans.
She has been told her brain tumour will grow back, but it could take ten years. She said: “I live with impairments to my vision and I‘m deaf in one ear.
‘’I have headaches 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.
“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 has been motivation for her daughter-in-law Stacey, who is taking part in the Brain Tumour Research charity’s Cycle 274 Miles in August challenge. A charity which Glenn is now campaigning alongside to help reach 100,000 signatures on its 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, go to www.braintumourresearch.org/petition