Living With an Optic Pathway Glioma: Molly’s Story
Molly was 16 when she was told she had what one doctor described as “a ticking time bomb” in her brain.
Only later came the words brain tumour.
Now 23, Molly lives with an optic pathway glioma affecting her pituitary gland, optic nerve and hypothalamus. But the impact of the tumour had begun long before she knew its name.
Her story is not just about diagnosis. It is about what happens when a brain tumour affects every part of life — hormones, vision, mental health, independence — and how, over time, she has turned that experience into purpose.
The symptoms started in childhood
Molly’s symptoms began when she was just six years old.
She started her periods unusually early, and they were severe.
“They were so heavy and painful that I couldn’t go to school,” she says. “I was bleeding for more of the month than I wasn’t. Periods completely ruled my life.”
At the time, there was no clear explanation for what was happening. But these early hormonal symptoms were the first signs that something wasn’t right.
The moment everything changed
By the time Molly was 16, her health had taken another turn.
Her periods had stopped completely, but she was now experiencing menopausal symptoms. Her bone density had dropped, her teeth were crumbling, and she was constantly unwell. At the same time, her vision became unpredictable, and severe headaches and migraines began to dominate her life.
“They ruled my life again,” she says. “More days than not, I was in bed, passing out and being sick.”
Then, just hours before a GCSE maths exam, everything changed.
“I was told I had a ticking time bomb sat in my brain,” she says. “That’s what I heard before the words brain tumour.”
In that moment, the language used stayed with her as much as the diagnosis itself.
Living with the long-term impact
Today, Molly is monitored with yearly MRI scans and is under multiple specialist teams, including ophthalmology and oncology.
Her tumour — an optic pathway glioma — affects key parts of the brain responsible for vision and hormone regulation.
Although she has lived with the diagnosis for several years, that does not mean it has become easier.
“I think people assume it gets easier with time,” she says. “But in some ways, the more I think about it, the more it affects me.”
One of the biggest challenges is living with uncertainty.
“I find it very difficult to process that there is something in my brain controlling the rest of my body,” she says.
The hidden weight of self-monitoring
Between scans, much of the responsibility falls on Molly herself.
“It’s my responsibility to notice if something changes and make sure it gets checked,” she explains.
With yearly scans, that means long periods of uncertainty.
“A week after a scan, something could change. That’s what plays on your mind.”
This can make even small symptoms feel overwhelming.
“If my finger hurts, I think, what if the brain tumour’s growing?”
Now in her twenties, Molly is also navigating this responsibility as an independent adult.
“They won’t speak to my mum anymore,” she says. “That’s quite a big shift.”
The mental health impact
The emotional impact of Molly’s diagnosis has been significant.
The phrase “ticking time bomb” stayed with her long after the appointment and contributed to years of mental health struggles.
Between 2019 and 2023, she was in and out of psychiatric services, caught in a cycle she found difficult to break.
“I couldn’t get out of it,” she says.
Finding the right support made a turning point.
Finding support that understood
Molly accessed counselling through The Brain Tumour Charity and became involved in their Young Ambassador programme.
“That support changed my life,” she says.
For the first time, she found people who truly understood her experience without needing explanation.
“Sometimes it’s not about being emotional. It’s just about talking to someone who gets it.”
Through that community, Molly began to rebuild her confidence and find a way forward.
Turning pain into purpose
Today, Molly uses her voice to support others and raise awareness.
She co-hosts a podcast, The Gliobabes, alongside her friend Mel, where they share experiences of living with gliomas and speak to guests from across the brain tumour community.
She has also delivered a TEDx talk, worked with charities, and spoken at events and conferences.
Through these experiences, Molly has connected with researchers and seen first-hand the work happening behind the scenes.
“It made me realise these scientists are just people,” she says. “People dedicating their lives to helping people like me.”
That connection has reshaped how she sees her own experience.
Why Molly continues to speak out
Molly is clear about why she continues to share her story.
There are parts of her journey that she believes could have been different — particularly around earlier understanding of her symptoms and better support.
“There are things I live with now that might have been prevented,” she says.
While she cannot change her own experience, she hopes speaking out can help others.
“I don’t want anyone else to feel like this,” she says.
For Molly, it is about improving quality of life — not just survival.
“No matter how long someone lives with a brain tumour, that quality of life should matter.”
She channels the fear, frustration and uncertainty into something constructive.
“I’m not going to shut up until this brain tumour makes me,” she says.
A final word
Molly’s story highlights how complex brain tumours can be — especially when they affect hormones, vision and overall wellbeing.
It also shows the lasting impact of diagnosis, language and delayed understanding, and the importance of support that truly meets people where they are.
Above all, it is a story about resilience, honesty and using lived experience to create change.
Follow Molly
You can follow Molly and her work here:
- Instagram: @MollFenton
- LinkedIn: Molly Fenton
- Podcast: The Gliobabes (Spotify, Apple Podcasts, YouTube)
Important takeaway
Molly’s story is a reminder that:
- Brain tumours can affect far more than people expect, including hormones and vision
- Symptoms may begin long before diagnosis
- The language used at diagnosis can have a lasting emotional impact
- Living with a tumour includes ongoing uncertainty and responsibility
- support, community and shared experience can be life-changing
- Quality of life matters just as much as treatment
Disclaimer
This information is for general awareness only and is not a substitute for advice from your own medical team. Aunty M Brain Tumours shares personal experiences and supportive information, not individual medical guidance.
Frequently Asked Questions
What is a glioma?
A glioma is a type of tumour that occurs in the brain and spinal cord, originating from glial cells.
How often should MRI scans be done for brain tumour patients?
The frequency of MRI scans varies based on individual circumstances, but many patients undergo annual scans.
Can brain tumours be treated?
Yes, treatment options for brain tumours may include surgery, radiation therapy, and chemotherapy, depending on the type and location of the tumour.
