Sally’s Story: Oligodendroglioma Grade 2, Seizures, Surgery, and Vorasidenib

Sally shares her story of being diagnosed with a grade 2 oligodendroglioma after a seizure in September 2024.After a night out singing karaoke in London, Sally woke the next morning panicked and gasping — and the next thing she remembers is a paramedic telling her she’d had a seizure. In hospital, she was initially assessed for stroke and meningitis before a CT scan showed lesions, followed by an MRI. Her case was sent to an MDT at UCLH (University College London Hospital), where she was told it was a low-grade brain tumour and she’d be seen in London the following week.At UCLH, Sally learned the tumour was in the insular region, extending slightly into the frontal and temporal lobes. With ongoing focal seizures while medication settled, she chose the option that felt immediate and clear to her: surgery to remove as much as possible.Surgery was repeatedly delayed due to an intraoperative MRI theatre refurbishment, so Sally used private medical insurance to access the same surgical team at Cleveland Clinic London. She describes being taken into theatre awake, the moment she tried to say her family’s names as she went under, and waking up confused — then being assessed for movement on her left side. She also shares a tender (and slightly hilarious) moment: her husband was so relieved after the surgeon’s call that he squeezed Sally’s mum and broke her rib.A week later, histology confirmed what Sally and her daughter had been “manifesting”: oligodendroglioma, grade 2. Sally was referred to oncology to access vorasidenib via compassionate/special access, and she reflects on how treatment has allowed her to keep living the life she planned — even while navigating fatigue, recovery, and uncertainty.Sally also speaks openly about counselling support through The Brain Tumour Charity and Brain Tumour Support, fundraising (including wreath-making, bracelets, and a golf day that raised thousands), and the emotional complexity of living in the space between “all clear” and “terminal.”⚠️ Content note: This episode includes seizures, brain surgery, cancer diagnosis, and mental health discussion.