Aunty M Brain Tumours Talk Show

In this episode, Molly Fenton shares her experience of living with an optic pathway glioma affecting her pituitary gland, optic nerve and hypothalamus.

Although she was diagnosed at 16, Molly’s symptoms began much earlier—impacting her childhood, education, and overall health in ways that weren’t fully understood at the time.

Now 23, Molly speaks openly about what it really means to live with a brain tumour as a young adult. From the shock of being told she had a “ticking time bomb” in her brain, to navigating long-term symptoms, mental health challenges, and the responsibility of monitoring her condition between scans—her story is raw, honest, and deeply human.

In this episode, Molly talks about:

• growing up with undiagnosed symptoms

• receiving a life-changing diagnosis as a teenager

• the emotional impact of living with uncertainty

• finding support through The Brain Tumour Charity

• becoming a Young Ambassador and using her voice

• advocacy, research, and why awareness must lead to action

• rebuilding identity and finding purpose

Molly’s story is not just about surviving—it’s about speaking up, creating change, and ensuring no one feels alone in their experience.

💬 “I’m not going to shut up until this brain tumour makes me.”

Naomi was diagnosed with an acoustic neuroma — also known as a vestibular schwannoma — in April 2016.

But she knew something wasn’t right long before that.

It started with a strange feeling in her ear, as though it was full of wax. Later came problems with balance and coordination, numbness down one side of her face, and the feeling that something was changing — even if it wasn’t immediately understood.

Her diagnosis came after an urgent MRI, following a referral from her dentist.

What followed was a long and complicated journey through treatment, hearing loss, regrowth, radiation side effects, vestibular rehabilitation, fatigue, identity loss, ill health retirement, and eventually rebuilding life in a completely different way.

In this honest and powerful interview, Naomi shares:
• The unusual symptoms that came years before diagnosis
• The confusion around acoustic neuroma and whether it “counted” as a brain tumour
• Choosing stereotactic radiosurgery
• Losing hearing on one side
• Facing regrowth and needing Gamma Knife treatment
• The delayed side effects that changed her life again months later
• Falling, fatigue, vestibular rehab and using a walking stick
• Leaving the career that had shaped her identity
• How Brainstrust helped her find herself again
• Discovering creativity, volunteering and building Hope Mosaics

Naomi’s story is not just about diagnosis and treatment.

It’s about what happens after.
It’s about grief, adjustment, identity, and finding new meaning in a life that no longer looks the way it once did.

Now, nearly 10 years on from diagnosis, Naomi is using creativity to reconnect with herself and give back to the brain tumour community.

This episode is part of a 31-day series sharing real brain tumour stories for Brain Tumour Awareness Month 2026.

If this episode resonates with you, please share it. Every story helps raise awareness.

⚠️ Content note: This episode discusses brain tumour diagnosis, treatment, hearing loss, fatigue, regrowth, and the emotional impact of long-term recovery.

Anya was diagnosed with a large acoustic neuroma after experiencing persistent headaches.

At first, it was thought to be stress. She was working across global time zones in a high-pressure consultancy role, balancing life with a young daughter at home.

But an MRI revealed something far more serious — a large tumour located close to her brain stem.

Everything changed overnight.

Shortly after her diagnosis, Anya stepped away from work to prepare for surgery and spend time with her family. Her daughter was just four years old.

The surgery was successful.

But complications followed.

Anya underwent two further surgeries and was placed into an induced coma.

When she woke up five days later, her world was completely different.

She experienced:
• Weakness on one side of her body
• Deafness in one ear
• Facial paralysis
• Severe balance issues
• Double vision and visual loss

What followed was months of intensive rehabilitation, including specialist vestibular therapy and neuro-rehabilitation.

In this deeply reflective and powerful episode, Anya shares:
• The shock of diagnosis and becoming a parent with a brain tumour
• Life-changing complications after surgery
• The mental and emotional impact of recovery
• The power of neuroplasticity and small, consistent progress
• Learning to accept a new identity
• Finding purpose through advocacy and charity work
• Why the psychological journey is often harder than the physical one

Now eight years on, Anya continues to support the brain tumour community, helping others navigate diagnosis, treatment and life beyond it.

Her message is clear:
Have faith in small steps. Don’t lose hope. And allow yourself time to adapt to a new way of living.

This episode is part of a 31-day series sharing real brain tumour stories for Brain Tumour Awareness Month 2026.

If this story resonates with you, please share it. Every voice matters.

⚠️ Content note: This episode discusses brain tumour diagnosis, surgery complications, coma and rehabilitation.

Lara shares the story of her daughter Amber, who was diagnosed with a Pilocytic Astrocytoma on 11th May 2010, when she was just eight months old.

What began with a strange movement in Amber’s eye quickly became every parent’s worst nightmare. After an MRI, Lara and Amber’s dad were told that something “not very nice” had been found in their baby’s head. From that moment on, life became a cycle of surgery, chemotherapy, scans, uncertainty, and long-term effects that continue to shape Amber’s life today.

In this deeply moving story, Lara speaks about:

• Amber’s diagnosis as a baby

• Her first nine-hour brain surgery

• The heartbreak and fear of not knowing if their daughter would come home

• Chemotherapy in early childhood

• Travelling to America for proton beam therapy

• Emergency surgery after treatment

• The long-term impact of brain tumour treatment on memory, hormones, learning and daily life

• The emotional toll on the whole family

• The support of Sheffield Children’s Hospital, the NHS, and brain tumour charities

This episode is a powerful reminder that brain tumours do not just affect one moment in time. For many families, the impact lasts for years — through childhood, adolescence, school, identity, and mental health.

Lara’s story is raw, honest, heartbreaking and full of love. Above all, it is a tribute to Amber — her strength, her spirit, and everything she has overcome.

Content note: This episode includes discussion of infant diagnosis, surgery, chemotherapy, radiation, long-term effects, and parental trauma.

Jenny is 54 and lives in Devon. She was diagnosed with an anaplastic astrocytoma (Grade 3) in 2021.

Her first symptom seemed small — while having lunch with her parents, the spoon suddenly felt strange in her mouth. She thought she might have had a stroke. When she visited the GP, she was diagnosed with Bell’s palsy and given steroids.

But things didn’t improve.

Jenny became increasingly exhausted. Her memory worsened, she felt confused, and she struggled to walk. By the time she finished work each day as a podiatrist, she was so tired she had to slide out of the car when she got home.

Her patients began to notice something wasn’t right.

Eventually, Jenny returned to the GP with her mum. She could barely walk down the corridor. After neurological tests, the doctor immediately referred her to hospital.

A scan revealed a lesion on her brain.

Over the May bank holiday weekend in 2021, Jenny deteriorated rapidly and required emergency brain surgery. Surgeons first removed a cyst and then discovered a tumour beneath it. Weeks later she returned for a second operation to remove as much of the tumour as possible.

In this episode, Jenny shares:

• The early symptoms that were mistaken for Bell’s palsy
• Severe fatigue, confusion and struggling to walk
• The moment doctors found a lesion on her brain
• Emergency surgery during a bank holiday weekend
• Being diagnosed with anaplastic astrocytoma grade 3
• Hearing a prognosis for the first time
• Radiotherapy and chemotherapy treatment
• A second craniotomy after tumour regrowth
• Managing seizures and ongoing monitoring
• A complex surgery to repair an infected cranioplasty site
• Living with fatigue and learning to pace herself
• Finding support through meditation, hypnotherapy and charities
• Turning creativity into fundraising for brain tumour charities

Jenny now focuses on staying positive, walking daily, caring for her rescue dog, and raising money for brain tumour charities by selling handmade cards.

⚠️ This episode discusses brain tumour diagnosis, emergency surgery, seizures and cancer treatment.

Barbara is 30 years old and based in Poland. She was diagnosed with a hemangioblastoma in March 2025.

Just weeks earlier, she had gotten engaged under the northern lights in Norway and returned home excited to plan her wedding. Then the headaches started.

At first, they came every morning. They were consistent, but not alarming enough to make Barbara think it was anything serious. She kept living her normal life — going to work, training for a half-marathon, and planning her future. But the pain didn’t stop, and some mornings it came with nausea.

One morning in early March, the pain became unbearable.

Barbara went for a CT scan, expecting reassurance. Instead, within an hour of getting home, she received the results: a tumour in her left cerebellum.

She was admitted to the hospital the same day. An MRI suggested it was a hemangioblastoma, and further tests showed it was a highly vascular tumour, meaning it had a strong blood supply and carried a risk of serious bleeding during surgery. Barbara underwent angiography first, followed by surgery a few days later.

In this episode, Barbara shares:

• Going from engagement and wedding planning to a brain tumour diagnosis

• Reading the words “tumour in the left cerebellum” on her scan results

• Being admitted to the hospital the same day

• The shock of learning she needed brain surgery

• The conversation with the doctor that made it all feel real

• Holding on to the feeling that “it’s not my time yet”

• Emergency surgery after an EVD was needed

• Spending nearly three weeks in the hospital

• Learning to walk again after surgery

• The emotional difference between looking physically well and not feeling okay mentally

• The nightmares and fear that followed coming home

• Returning to work after three months

• Why support from psychologists mattered

• Learning that recovery is not a straight line

Barbara speaks honestly about the trauma, the fear, the relief of hearing it was benign, and the guilt she felt for not “allowing herself” to feel bad because it wasn’t cancer. Her story is a powerful reminder that even a benign brain tumour can change everything.

⚠️ This episode discusses brain tumour diagnosis, surgery, emergency intervention, hospital trauma and mental health after treatment.

Jo had already faced cancer once.

After surviving breast cancer a decade earlier, she believed that chapter of her life was closed. But in 2024, after months of headaches, exhaustion, brain fog and anxiety — symptoms she thought were menopause — everything changed.

A seizure at work led to an emergency hospital admission and the devastating news: a Grade 4 Astrocytoma, IDH-mutant, deep within her brain.

In this episode, Jo shares:

• The shock of being diagnosed with a fast-moving brain tumour

• Being told it was Grade 4 — and choosing not to hear survival statistics

• Brain surgery to remove 90% of a 6cm tumour

• Six weeks of daily radiotherapy

• Chemotherapy treatment after already enduring it years before

• The emotional impact of living with a “stable but not gone” diagnosis

• Navigating disability benefits and financial changes

• The vital support of Maggie’s, Macmillan, and brain tumour charities

• The love and strength of her husband, Joe

Jo speaks with honesty about depression, identity changes, exhaustion, and the ongoing anxiety of scan results — while also expressing deep gratitude for the NHS team who cared for her.

Her tumour is currently stable. And for now, that is everything.

This is Jo’s story.

If this episode resonates with you, please share it to raise awareness of brain tumours and the reality of living with a Grade 4 diagnosis.

⚠️ Content note: This episode includes discussion of seizures, brain tumour diagnosis, surgery, radiotherapy, chemotherapy, depression, and anxiety.

#BrainTumourAwarenessMonth #Astrocytoma #Grade4BrainTumour #IDH-mutant

Anne Hubbard is 57 and lives with a Cerebellopontine angle (CPA) meningioma. Her first major symptom was hearing loss in her left ear, which led her to seek help — though for years she’d also experienced headaches, brain fog, and fatigue that she assumed were menopause-related.

After seeing an audiologist who ruled out issues with her eardrum and cochlear nerve, Anne was referred through her GP to ENT. Following antibiotics, steroids, and imaging, Anne received the call many people fear: they’d found a mass on her brain — with reassurance that it “wasn’t cancerous.” Further investigations followed, including an MRI with contrast and a CT venogram (CTV).

Anne describes how slow the process felt. From being told about a mass in January 2024, it took months to confirm it was a meningioma, and around 10 months before she finally saw a neurosurgeon and fully understood the tumour’s location and plan. That waiting period left Anne feeling stuck in “no man’s land,” constantly questioning every ache, headache, or sensation.

Anne found vital support through Brainstrust. After reaching out, she received personalised guidance, practical resources (including questions to ask her neurosurgeon), and access to a monthly online group called “Meningioma Matters.” Anne describes it as a lifeline — a community where people at every stage (watch & wait, pre-surgery, post-craniotomy) can share experiences, tips, and reassurance.

When Anne finally saw the neurosurgeon, she learned her tumour was large (around 3cm x 3cm) and located at the back of the brain in the CPA region. Anne explains that it wasn’t a neat round “ball”, but more spread out — “like a handkerchief” — and wrapped around critical areas, making full removal unlikely and surgery high risk. Anne wanted the tumour removed, but her neurosurgeon explained that operating now could leave her worse than she is today. One sentence stayed with her: “If something goes wrong, I want to be able to say we had to operate — not that we chose to.”

Anne shares what living with watch & wait is like: learning to manage fear, scan anxiety, and symptoms without letting the tumour take over every thought. She also talks about workplace advocacy — being open about balance issues and fatigue — and the practical help of her NHS hearing aid, including how it reduced her tinnitus.

Anne also mentions support from Headway, including carrying a brain injury card for times she feels overwhelmed (especially in noisy environments). She closes with deep gratitude for Brainstrust, the team at King’s College Hospital, and her support network at home and at work.

⚠️ Content note: This episode includes discussion of brain tumour diagnosis, scan anxiety, hearing loss, and mental health.

Sarah was diagnosed with a Occipital Condylar Meningioma in 2021 while pregnant.

Her first symptom was flashing lights — like a migraine aura — while driving home. Because she was pregnant, she went to get checked, and a consultant noticed one pupil was larger than the other. A CT scan followed, and that was when Sarah was diagnosed with a brain tumour.

At the time, she had just six weeks left of her pregnancy.

Because of the pressure the tumour could place on her brain during labour, Sarah was advised she would need a C-section. Soon after Violet was born, Sarah’s eye closed and she lost sensation down one side of her face. At that stage, doctors decided to monitor the tumour and allow her time to recover and be with her newborn daughter before making a decision about surgery.

Over the following year, Sarah remained on watch and wait. When scans showed growth, surgery became necessary to prevent the tumour from affecting her optic nerve and potentially causing permanent vision loss.

In this episode, Sarah shares:

• Being diagnosed while pregnant

• The shock of needing a C-section because of a brain tumour

• Becoming a new mum while living with uncertainty

• Watch and wait with a growing meningioma

• Surgery and what it was like saying goodbye before going under

• Waking up and immediately noticing her vision had improved

• The realities of recovery, balance issues and mobility struggles

• Using a wheelchair in the early weeks just to get outside

• The impact of physio and occupational therapy

• Living with chronic fatigue and adapting to a new version of life

• Starting a wellbeing business inspired by recovery

• Why Brainstrust became such an important support

  
  

Here is Sarah's New Websitehttps://rainbowwithlove.co.uk/Sarah speaks honestly about motherhood, identity, recovery, and rebuilding life after surgery — while still learning how to pace herself physically and emotionally.

⚠️ This episode discusses brain tumour diagnosis, surgery, pregnancy, mobility problems and fatigue.

Kathy shares her story of being diagnosed with a sphenoid wing meningioma in 2025 — a diagnosis that came after what felt like “just a few headaches” and migraine episodes.

Kathy initially went to her doctor for migraine medication. When it didn’t help, she was referred for a CT scan. Six weeks later, she almost didn’t go — worried she was being “attention seeking” for a headache — but her boyfriend encouraged her to attend.

After the scan, staff walked Kathy straight to the emergency room. She assumed she’d had a stroke, especially after Googling symptoms. About an hour later, a doctor told her they’d found a large mass in her head. They suspected a meningioma (often non-cancerous), but Kathy was told she needed to go immediately to another hospital in Calgary where a surgeon was waiting.

Kathy describes the shock of being admitted and monitored for surgery she didn’t realise was imminent. Her neurosurgeon showed her the scan: a tumour measuring 6cm x 5cm x 5cm, causing an 8mm midline shift and significant pressure. He explained it had likely been growing slowly for around 10 years, allowing her brain to adapt — but due to its size and impact, it had to come out.

Kathy was admitted on May 26, and after a short delay due to emergencies, she had surgery on June 2. The operation lasted 11 hours. She remembers waking frightened for the first time, disoriented by the tubes and monitors, and then the relief of seeing her mum waiting as she was brought back to her room.

A huge part of Kathy’s focus was getting home to her six-year-old son, and protecting him from fear. She explains how she kept the language simple: “a ball in my head” that doctors would “cut out.” She also shares touching moments of her son calling her “baldy,” laughing with her, and reminding her not to lift more than 10 pounds.

Kathy’s recovery went well overall. Her vision was temporarily affected but improved within around six weeks. She describes one lasting issue — burning when her eyes tear up — likely from nerve damage. An occupational therapist gave her “rules to live by,” encouraging brain-friendly activities like puzzles, cooking, and multitasking exercises while her brain adjusted to the extra space.

Kathy now runs an Instagram page, @BrainTumor.Awareness, driven by what she wishes she’d known sooner — especially that new migraines, numbness, and speech changes can be red flags. She also speaks about how stress, anxiety, and ADHD can mask symptoms, and why she wants people to understand a vital message:
Benign tumours can still be extremely dangerous — location and size matter.

Kathy ends by thanking her neurosurgeon, her son (her guiding force), her boyfriend, and her parents, who kept her son’s life as normal as possible while she faced surgery.

⚠️ Content note: This episode includes discussion of emergency admission, brain surgery, and recovery.