Ticking timebombs: Mum tells of battle with two brain tumours

Published on Monday 20 October 2008 10:12

YOU wouldn't know it to look at her, but Joannie McCutcheon has two ticking time-bombs inside her brain.

She's not sure how long these bombs – two slow-growing tumours she calls Ollie and Melanie – have been with her, or when they will eventually go off.

But she does know, with absolute certainty, that one day they will kill her.

The 57-year-old IT consultant from Canonmills first found out about the tumours three years ago.

At the time she was working in Amsterdam, and woke up in the middle of the night in a panic, unsure of what was happening.

For weeks she had been having trouble sleeping, as well as short-term memory problems and a constant feeling of fatigue, but she had simply brushed that off as the effects of over-working.

This time, however, she knew there was something seriously wrong.

There was a searing pain in her mouth, and a taste of blood.

She soon realised to her horror that she had suffered an epileptic seizure in her sleep, one so severe that it had caused her to bite off the tip of her tongue.

"That was what first prompted me to go to the doctors, who told me about Ollie," she says.

Ollie, short for Oligodendroglioma, is a Grade 2 slow-growing brain tumour, whose roots are well established in the right side of Joannie's brain.

It is difficult to know how long it has been there, but by the time it was discovered it was already bigger than a golf ball.

Melanie, short for Meningioma, was discovered during later examinations, growing in the left occipital lobe of Joannie's brain.

They are both very different to the high grade glioma, or 'fast-growing' tumour, which saw golfing legend Seve Ballesteros undergo two life-saving operations in a Madrid hospital last week.

Joannie has lived with her tumours for more than three years, and it is possible they have both been there in some form or other since she was a child.

"It is so frustrating, because they are like the forgotten cancer," admits Joannie.

"So little funding and research is done on them – they tend to concentrate on the high-grade tumours because they are more of an immediate risk.

"They need to do more work on these, though, because, unlike other cancers which can be benign, brain tumours have a massive effect on people because of where they are."

After the initial diagnosis in Amsterdam, Joannie was told she would need an immediate operation to remove as much of Ollie as possible.

Even though there was no information on whether or not the tumour was benign or aggressive, the fact that it was slowly growing in her brain meant there would be damage regardless.

The first part of the process involved a nine-hour operation which saw doctors freeze the right side of Joannie's brain – while she was conscious – before asking her to talk and perform simple tasks, to determine which hemisphere of her brain controlled language and movement.

"It was the most bizarre feeling, because I remember lying there and asking them when they were going to start, and they told me they had already finished," she says.

"They had it all on video, and said I had been talking and moving objects, but because the side of my brain that deals with memory was frozen, I can't remember it at all."

Having completed their initial examination, Joannie then had to endure an 11-hour operation which saw specialist surgeons peel back part of her scalp to remove roughly 80 per cent of Ollie – then roughly seven centimetres in diameter – out of her head.

"They told me they couldn't take him out completely, because part of him was wound around the insular cortex, which carries a lot of blood through the brain, and they couldn't risk damaging it," she says.

"Despite that I still felt so different afterwards, and it was quite difficult to realise just how bad I had been.

"I had been so tired all of the time, and my short-term memory was severely affected, but I just thought it was work and pressure. I had no idea."

Joannie was born in the Western General Hospital, just a stone's throw from where she now works, helping put together and run the Scottish Adult Neuro-Oncology Network website.

Raised in Gullane, she has two sons, William 33, and John-Paul, 31, from her first marriage.

When that ended, she went back to university to study computing and, after graduating, landed a job with the international firm CSC Computing Sciences which took her to Amsterdam.

There she met and married her second husband, although she says softly that she would prefer not to speak about him, apart from saying the relationship broke down after her brain tumour was first diagnosed.

Because of this, she decided to move back to Scotland to be close to her children following the operation.

Although she says she feels back to her old self now that she is home, Joannie admits the move was more problematic than she could have imagined.

"Just coming back was terrifying, because I had been away so long and I felt like a stranger here," she says.

"It seemed so new and different. At first, I told people about my tumours because they would ask why I wasn't working, but now I don't really talk about them because I just want to get on with my life."

This was what she hoped to do just weeks after returning when she went out with friends to help her get reacquainted, and after enjoying a few drinks, headed off to her new home.

Hours later, she was awoken by the sound of hammering on the door of the flat.

"They were shouting, 'It's the police, there's someone injured in your flat', but because of the tumours I just thought I was imagining things and went back to sleep," she recalls.

"They kept on hammering and eventually I got up and opened the door. Then they told me I was the injured person.

"I just stared and asked, 'Am I?'"

For the officers who came to her house that night there was no doubt – she was covered in blood, and there was a trail of blood leading to her door on the street.

"They told me to look in a mirror and I was really shocked at how much blood there was," she says.

"I had bruises on my ribs as well, and they thought I had been assaulted at first. Then I told them I had seizures."

To this day Joannie still can't remember exactly what happened, just flashes here and there – a pole, a man helping her up, lying outside her flat.

She believes it was a tonic-clonic seizure (formerly known as a grand mal seizure) – the same type which first alerted her to the brain tumour – and that she must have collapsed on to the ground and cut open her head.

"The bruises are where someone tried to pick me up and they must have carried me home, but I obviously didn't let them in, and they called the police," she says.

"After a seizure, you just feel completely drained which is why I just passed out."

The cut, she jokes, was on the left side of her head "so Ollie was fine".

Joannie has learned to live with her tumours, and while doctors have suggested she has only got between three and five years remaining before they kill her, she believes it could be much longer than that.

"I don't trust the statistics, as I think it depends on a whole range of factors beyond just medical ones," she says.

"Attitude is important, and I knew I had to accept that these things were in my head, and have been part of me for a very long time.

"I also do tai chi, which I find incredibly relaxing, and the energy it can give you is amazing."

Although she accepts what will happen, Joannie quietly admits that she is still terrified of the changes the growing tumours will have on her.

"They have told me that Melanie will probably affect my eyesight, so I could go blind in one eye or both," she says, "and they will affect my memory again, particularly short-term memory.

"It is just horrible to think of it happening, and it is a long, slow process.

"But I can't let myself think about that."

BEING AWARE

A BRAIN tumour is a growth caused by the brain cells dividing in an abnormal and uncontrolled manner.

There is no explanation as to why they occur, making it impossible to predict who will develop one.

This can make it even more difficult to come to terms with the diagnosis, often creating feelings of helplessness and lack of control.

Brain tumours are the second most common cause of neurological death, after strokes, and are the fifth most common cause of cancer death in the working population.

Every year, 3400 people lose their lives to a brain tumour.

The Brain Tumour Action group is a charity which works to support local patients with help, information and support.

As part of the International Brain Tumour Awareness Week, which starts on October 27, there are events happening up and down the country, and in Edinburgh the BTA have organised an evening of harp and clarsach music at St Mary's Cathedral.

As well as raising funds for the charity, it is hoped the concert will raise awareness about the often horrific effects of brain tumours, and the lack of research currently taking place to tackle them.

The concert, being held on October 27, starts at 7.30pm and tickets are 5.