Rosette-Forming Glioneuronal Tumour: Jess’ Story

Jess Kaye was diagnosed in March 2025 with a Rosette-Forming Glioneuronal Tumour (RGNT) — a rare brain tumour with only a few hundred reported cases worldwide.For years, Jess had mild distortion in her right ear. In the last 12 months, it became more noticeable — sound sensitivity, ringing, distortion when her dog barked or someone yelled near her right side.An ENT referral and hearing tests came back normal. An MRI was ordered “just in case.”Three nights later, at 9:30pm, her specialist called from a silent number.“You’ve got a mass. You need to go straight to hospital.”Jess was told it was likely cancer. Surgery was scheduled. Then postponed. She went home for three agonising weeks not knowing what she was facing.In this episode, Jess shares:living with a rare tumour diagnosisthe shock of a late-night phone callbeing told it was “99% likely cancer”the emotional toll of waiting for surgerycraniotomy and eight weeks in rehab hospitalintensive physio, OT, speech therapy and hydrotherapyresigning from her full-time job due to fatiguemobility challenges and right-sided ataxiadouble vision and prism glassescognitive processing changes and word-finding difficultiesa paralysed vocal cord and speech therapy (including straw phonation)emotional changes linked to cerebellum and amygdala involvementstarting counselling and CBTadjusting to a “new version” of herselfJess speaks honestly about guilt, identity, fatigue, neuroplasticity, and learning to live differently.⚠️ Content note: This episode includes discussion of brain tumour diagnosis, surgery, rehabilitation, fatigue, and cognitive changes.