Jeanie’s brain tumour story

Jeanie had been experiencing dizziness, headaches, personality changes, mood swings and mental health difficulties for three years.

She visited her local GP ‘repeatedly’ but said she was told she was ‘probably perimenopausal’ and that this was likely to be causing the symptoms.

Jeanie said:

“I got on with it really, but it left me feeling almost like I was disbelieved – I felt humiliated.

“Blood tests were showing nothing, so I got the impression the doctors thought I was being over the top and that the symptoms weren’t as bad as I was making out.

“It was like I’d been told ‘it’s all in your head’.”

In May 2017, Jeanie collapsed and had a seizure at work and was rushed to hospital.

She received an MRI scan and was sent home, with doctors telling her it was likely to be a single seizure only.

Two days later, she received a phone call from a neurologist while she was at work, who told her she had two brain tumours in her brain’s left frontal lobe.

Jeanie was told she was being urgently referred to The Walton Centre, a specialist neurology hospital in Liverpool.

Jeanie said it was ‘torturous’ waiting four weeks for an appointment with a neurologist. She said:

“The horrible period of waiting was the hardest of everything – it was torturous.

“Between diagnosis and getting my first appointment I didn’t have any information and felt out of control.”

Jeanie experienced more seizures, so 10 months later in September 2018 underwent surgery to remove both tumours.

Her operation was a full resection, which meant all of the tumours were removed and there was no need for radiotherapy or chemotherapy afterwards.

Jeanie and her family
Jeanie with her family following the surgery

Jeanie said:

“I wish someone had prepared me for the recovery and told me ‘actually, life won’t be the same’.

“It was never explained to me how my emotions might be different, and how I’d need to manage them differently.

“I think there should automatically be counselling and support after brain surgery, people shouldn’t just be sent home.

“Your brain affects your entire life, your emotions and your personality.”