Rosette-Forming Glioneuronal Tumour: Jess’ Story
An episode of the Aunty M Brain Tumours Talk Show podcast, hosted by Claire Bullimore, titled "Rosette-Forming Glioneuronal Tumour: Jess’ Story" was published on March 7, 2026 and runs 13 minutes.
March 7, 2026 ·13m · Aunty M Brain Tumours Talk Show
Summary
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.
Episode Description
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 diagnosis
the shock of a late-night phone call
being told it was “99% likely cancer”
the emotional toll of waiting for surgery
craniotomy and eight weeks in rehab hospital
intensive physio, OT, speech therapy and hydrotherapy
resigning from her full-time job due to fatigue
mobility challenges and right-sided ataxia
double vision and prism glasses
cognitive processing changes and word-finding difficulties
a paralysed vocal cord and speech therapy (including straw phonation)
emotional changes linked to cerebellum and amygdala involvement
starting counselling and CBT
adjusting to a “new version” of herself
Jess 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.
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