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.
