‘I was unable to move my eyelids’: Islington author who survived cancer, paralysis and psychosis tells her story

From left to right: Alex Jelly's consutant neurosurgeon Adel Helmy, Alex Jelly and Prof Barbara Wils

From left to right: Alex Jelly's consutant neurosurgeon Adel Helmy, Alex Jelly and Prof Barbara Wilson, founder of the Oliver Zangwill Centre in Ely. Picture: Alex Jelly - Credit: Archant

“When I woke up I was completely unable to move my eyelids,” said Islington author Alex Jelly.

Alex Jelly. Picture: Tabitha Hawkins

Alex Jelly. Picture: Tabitha Hawkins - Credit: Archant

The Extinction Rebellion Islington activist has undergone surgery for four brain tumours since 2017.

After her first operation on Valentines Day in 2017 - for what turned out to be a rare and aggressive type of stage 3 tumour - Alex woke up paralysed and unable to speak. She had Supplementary Motor Area Syndrome (SMAS).

Alex, 46, was living in Cambridge at the time her operation but has since moved to St Peter's Street in Islington and co-written a book called Life After a Rare Brain Tumour and Supplementary Motor Area Syndrome: Awake Behind Close Eyes.

It's thought to be the first published work written from the perspective of an SMAS survivor, and Alex hopes it will provide help the families of other patients, and aid doctor's understanding of what it's like to live with the condition.

"When I woke up from the operation I was going through psychosis," said Alex. "I thought my partner was trying to kill me. Because of my psychosis it [being paralysed] didn't shock me, I was wrapped up in my conspiracy theories." She also thought she was a robot.

Temporary psychosis is a relatively common side-effect of the trauma some experience after a major operation, while the paralysis was caused by the tumour and its location at the centre of her brain.

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Alex was operated on for the first tumour at Addenbrooke's Hospital in Cambridge and, though the surgery went well, she woke up with SMAS. "I thought I was going to be in a wheelchair for my whole life," Alex added. "The first thing I moved was my face muscles, I soon smiled because that's my natural way and I did it to establish rapport with people."

Her speech returned with whispers at first but it took weeks for Alex to learn to walk again, aided by a course of physiotherapy.

But Alex spent nearly three months in hospital recovering from psychosis and cognitive difficulties before she was discharged. She then underwent a course of radiotherapy

Alex met Professor Barbara Wilson while on a 12-week programme at the Oliver Zangwill Centre in Ely, Cambridgeshire. Professor Wilson asked Alex to co-write a book about her experiences.

Alex has since had other three stage 2 tumours removed, and gave a talk about her book at UCH, where she'd received treatment, in December.

She has been involved with Islington XR since 2018 and stayed out all night supporting activists when they occupied Trafalgar Square in October.

You can buy her book here.