Brain tumour patient who was awake during surgery relives the operation

Emeline Gilhooley took part in a professional photoshoot not long after her brain tumour surgery. Picture by Sophie Mayanne

A year ago today Emeline Gilhooley had life-saving brain surgery and she was awake throughout. Catherine Scott reports.

“I was absolutely convinced I could hear my skull being drilled back into place,” says 21-year-old Emeline Gilhooley. A year ago today Emeline, from Sheffield, underwent a life-saving craniotomy.

What made the surgery remarkable was that Emeline was awake throughout and can remember the moment doctors operated to remove the tumour.

“The surgeons told me it was just the suction to keep my brain dry while they were operating, I remember thinking; ‘that’s worse!’” says Emeline who is preparing to go back to finish her Sociology and Social Policy degree at the University of Leeds.

She has also become a young ambassador for the Brain Tumour Charity as well as taking part in photographer Sophie Mayanne’ s Behind The Scars shoot, which is aiming to end the stigmas around them and has put Emeline more at ease with her own (https://behindthescars.co.uk) not long after her surgery and also sailed with the Ellen MacArthur Trust – all things she says have helped restore her confidence.

Emeline suffered a major seizure in her sleep in February 2018, while studying at the University of Leeds. It was to be the start of a frightening diagnosis and treatment.

“At the time there was nothing beforehand that made me think I should be worrying,” says Emeline.“I had a lot of headaches and episodes of déjà vu but I put it down to the day-to-day stress of student life. When I talked to my oncologist before my brain tumour surgery however, I was like ‘oh, those were symptoms after all.’

“Looking back on this and the period before, I had been having five or six little seizures a week.

Emeline straight after surgery at the Royal Hallamshire Hospital Sheffield

“In my mind a seizure was major, a falling down and shaking on the floor-type of thing but my epilepsy nurse described all different sorts of seizures, even minor ones, and it clicked into place.

“They happened every morning and it felt like I was remembering a conversation with somebody, very much like what people call déjà vu. I thought it was kind of normal, that everyone was having these.”

The February seizure put Emeline into A&E. She was given an urgent CT scan but even at this point doctors couldn’t determine a diagnosis.

Following her emergency hospital admission she was given more tests and an all-important MRI scan that eventually led to the devastating brain tumour diagnosis; she had what was called an anaplastic astrocytoma grade 3 on her left parietal lobe.

Two weeks into chemotherapy Emeline, 21, struggled to come to terms with losing her hair

Up until this point, Emeline’s anxiety about what was wrong was spiralling.

“I was just very aware that I had something in my brain but didn’t know exactly what. I just knew I had a seizure and that it could cause another one. After my call with a Leeds neurosurgeon, when he explained it was a tumour that may have been there for five years or more, it was easier to feel calm.

“There was a name and a procedure, a sequence of events that was now in motion. People were getting kicked into action. We knew what it was and we knew what had to be done.”

Now, Emeline was facing the prospect of life-saving surgery to remove the tumour, an awake craniotomy, scheduled for July.

Surgeon had to operate to remove the tumour in Emeline's brain

“It was a massive thing to process. It felt too weird. The idea of it in the build-up to it was absolutely terrifying. I knew I’d be asked to do stuff during the surgery to check everything was going to plan and the thought of that was really scary.

“The neuro-psychologist took me through my brain functions and loads of tests and she went into a lot of detail so I knew what to expect.

“She reassured me she’d be there throughout the whole time holding my hand and talking to me so that when I was woken up during the operation, I wouldn’t freak out, I wouldn’t wriggle around – not good when you’re having brain surgery.”

Emeline says she felt calm on the day of the surgery – July 17. It was the point of no return at this stage – it had to be done to save her life and there was no going back.Emeline was wheeled into theatre at the Royal Hallamshire Hospital in Sheffield at 9am and by 1.30pm the surgical team had prepped everything to wake her up, the ‘awake’ part of the craniotomy.

“When they woke me up, I was thinking that this is really bizarre, that my brain is out in the open. It was very strange. I was really aware of all the noises, all the beeping of the machines. You have to trust everyone at the hospital, have faith in the people looking after you.”

The surgery was a success but Emeline still had to undergo a course of radiation and chemotherapy.

She’ll still be having chemo when she continues her studies at the University of Leeds in September.

The past year has also impacted hugely on Emeline’s confidence, particularly the loss of her hair following treatment

“This was something I struggled with for quite a while. I’ve done a lot of things to push myself out of my comfort zone this year to try and regain some of the confidence I’ve lost.”

Emeline has become one of 23 Young Ambassadors of The Brain Tumour Charity.

“I’ve had the opportunity to meet so many other people who’ve had the same experience. It’s helped me realise I’m not the only one with these feelings. You feel in limbo, you lose a bit of yourself and feel that everyone else is getting on with stuff. You have to grab everything that’s on offer to help you.

“I’ve been through brain surgery and managed to deal with it and that’s huge and that’s pretty cool I made it.”