Gala Rowley wants more funding to fight brain tumours

The slight brain damage which resulted from radiotherapy to treat the tumour has transformed her from a capable person who absorbed information 'like a sponge' to someone who is 'forgetful and slightly deaf'.

Though the treatment saved her life the change in her abilities has been a source of frustration and anxiety which she still wrestles with every day.

But the 'brain tumour blogger', as she calls herself, approaches the resulting challenges and the inevitable worries with the steeliness, verve and dark humour you often only find in those people to whom life has not always been kind.

Engaging and self-deprecating, Gala is not one to moan about her lot in life but greets the slings and arrows of outrageous fortune with a broad smile and a bold plan of action.

One entry in her blog is called, intriguingly, '11 very silly things I've done since acquiring slight brain damage'.

It includes the time she accidentally signed herself up as a sex slave while researching the horrors of slavery in the eighteenth century.

She is at pains to point out that she has since resigned her membership.

A close second in the list was when she washed her hair with mayonnaise, believing it was shampoo.

Yet if you burrow down beneath the lively humour there is a fierce sense of injustice that more funding is not available to help those with brain tumours, many of whom are children and teenagers, and a desire to raise awareness of her condition and make people better understand what it is like living with a brain tumour.

She has lobbied MPs, including giving a speech in front of 60 people at the Houses of Parliament which moved some listeners to tears and has been engaged in fundraising for the Brain Tumour Charity.

She was diagnosed with a brain tumour in 2008 at the age of 27 but has been told she may have had it since childhood.

The cause remains unknown. When medics discovered the 'egg-sized' tumour in the most crucial part of the brain stem she said they thought she was 'a goner' and were surprised she was still walking.

The tumour, known as a Pontine Glioma, largely affects children and teenagers who are usually given a very poor prognosis.

The end result can be locked in syndrome or even death within 12 months which is still a source of constant worry for Gala.

"For me the worst thing is dealing with the future because the tumour might not just sit there, as it is, forever.

"It may one day come back and there's no treatment. I could just shut down and end up with locked-in syndrome.

"That scares the hell out of me. I'm never away from it. Until there's a new treatment I will never have that moment where the doctor says 'it's gone'.

"I've had to learn to live with it. I feel sometimes almost like my life is on hold."

Her tumour is now categorised as 'low grade' and has been rendered stable or dormant for the time-being.

But in young people and teenagers it tends to be more aggressive she said.

Gala of the Arboretum in Worcester was diagnosed at the city's Worcestershire Royal Hospital but had six weeks of radiotherapy treatment at the Queen Elizabeth Hospital in Birmingham in 2009 which saved her life but also left her with slight brain damage, the practical ramifications of which she must live with every day.

The initial symptom of the tumour was a headache caused by hydrocephalus, a build-up of fluid on the brain.

The pain was so great it left her writhing on the floor and doctors had to fit a VP shunt to drain the fluid.

The doctors at the QE had wanted to perform a biopsy, something Gala resisted. She feared the procedure would pose too great a risk to her brain and cause permanent disability or even death.

The radiotherapy itself caused slight damage to her brain and has impaired the function of her memory and later her hearing.

The brain damage means her short-term memory is poor which has been a blow, particularly for her career. She had been on the threshold of promotion to a managerial position in property management.

Her brain had been like a sponge but after her brain was damaged she struggled to retain information which meant she had to learn ways to organise her life, something which had always come naturally to her beforehand.

She admits she has found this frustrating and very upsetting.

She said: "I went from being one of the best employees to feeling almost like a burden, someone who wasn't the best anymore."

She did brain training to try and recover some of her memory and also makes sure she has a good and varied diet with fruit, vegetables and oily fish rich in Omega-3.

From a social point of view the impact on her hearing is a 'bit of a nightmare', especially when she goes out to restaurants and everyone is speaking at once which can make the conversation hard to follow.

She said: "The biggest challenge was learning to accept myself as I have become and learning to accept my brain as it is.

"It's still something I'm learning to live with - not being myself because I'm not capable of doing everything I previously did."

However, she feels she is now doing well on a disability placement with Worcestershire County Council.

Her father died in 2011and left her money and, if not for that financial support, she wonders how she would have coped with her diagnosis. Her mum died when she was just five years old.

But she still has strong support from the man she hopes to marry, Mike Lomax, with whom she has been in a relationship for the last 10 years.

She said: "There is not enough funding for research. What I find sickening is that largely affects children and teenagers and should be seen as a priority.

"If you look at what's happening with breast cancer and other cancers why aren't we fighting for something that affects children and teenagers? I know how badly it affects my life. I hate to think how it affects young people."

Her fundraising work includes placing charity boxes for the Brain Tumour Charity in shops in Worcester and taking part in the Twilight Walk to raise funds.

She estimates she has raised about £2,650 since she became involved.

Facts and figures supplied by the Brain Tumour Charity

* Brain tumours are the biggest cancer killer of children and adults under 40.

* Whilst survival has doubled across all cancers, the ten year survival rates for brain tumours has improved little for adults in over 40 years at just 13 per cent. This is one of the poorest of all cancers.

* Brain tumours also reduce life expectancy by an average of 20 years, the highest of any cancer. Despite these facts, less than 2 per cent of the £500million invested in cancer research in the UK every year is spent on brain tumours.

* The charity has a strategy to double survival within 10 years in the UK. The goal is to halve the average years of life lost to a brain tumour from 20.1 to 10 years by 2025.

To volunteer for the charity visit www.thebraintumourcharity.org