Health and well-being

The silent enemy

It strikes out of the blue and you can't prevent it. But being diagnosed with a brain tumour is not necessarily a death sentence, as the stories of our survivors show

By Louisa Pearson

MOST of us can remember what we were doing on December 31, 1999. But Anthony and Julie Read's memories of that date have nothing to do with the millennium Hogmanay celebrations. While everyone else was gearing up for the year 2000, they were dealing with the devastating news that Anthony, 46, had just been diagnosed with a brain tumour. "The children still have clear memories of the night he was rushed to hospital," says Julie, 44.

To look at the Read family sitting together in their Edinburgh home, you'd be forgiven for thinking there was nothing unusual about them. Fifteen-year-old Catherine and 12-year-old James obviously dote on their dad. But despite appearances, in the eight years since Anthony's diagnosis, their lives have changed dramatically.

Around 13,000 people are diagnosed with a brain tumour each year in the UK and, as the cause is unknown, there are no lifestyle changes that can be taken to prevent them. High-profile survivors such as Russell Watson, Martin Kemp and Lance Armstrong offer many sufferers hope for the future, but there are many who lose their fight against the illness, including Mo Mowlam, BBC reporter Ivan Noble, and more recently Scotland rugby international Bruce Hay.

In May, US Senator Ted Kennedy announced he had been diagnosed with a malignant brain tumour. His diagnosis, like Anthony's, came completely out of the blue. Anthony still remembers the shock of suddenly being taken ill. As a busy lawyer working in Edinburgh and London, he had shown no symptoms until the day he was taken to hospital. "One day I was fine, the next I wasn't, " he says. "I fell out of bed one morning with a seizure, so it was fairly dramatic. I was taken to hospital and the diagnosis was immediate."

As a GP, his wife had some knowledge of brain tumours, but she wasn't prepared for the impact it would have on their lives. "It takes a long time to adjust," says Julie. "With Anthony having the seizures, I was scared to leave him and go back to work."

Anthony had been diagnosed with an astrocytoma, a low-grade tumour. There are many different types of brain tumour: primary tumours graded 1 and 2 are classified as low grade, meaning they are benign or mildly malignant, whereas those graded 3 and 4 are life-threatening and likely to destroy surrounding normal brain tissue, and the prognosis can be as short as three months. Treatment can be difficult – surgery needs to be extremely precise and not all therapeutic drugs can cross the blood-brain barrier.

In Anthony's case, the tumour was on the left side of his brain near the speech centre, so removing it would have been too risky. He initially took medication to control the seizures and was able to return to work part-time, but in 2002 he had to give up work and began a radiotherapy course which managed to shrink the tumour.

"You do get used to dealing with it," says Julie, "but it's always there. You just have to cope with it." She says that the first real change to their lives was that Anthony couldn't drive any more. Then he couldn't get holiday insurance. "Some companies just won't cover you," says Julie. Despite the problems, there have been unexpected benefits – both James and Catherine say they value having their dad at home and being able to spend more time with him.

One of the hardest things has been dealing with people's reactions to the tumour. "Friends and family really didn't know what to do at first," says Julie. "It took people a couple of months to get over the shock."

A recurrence of the tumour in 2006 was treated with further radiotherapy and Anthony required chemotherapy last year, which affected his speech and memory. "There has been a gradual deterioration, a lack of motivation, and that's caused by the damage to the brain," says Julie. "I have to write him detailed instructions, as Anthony finds it difficult to make decisions. I've started explaining a bit more to people what it's really like, and that has helped.

"I'm pleased Russell Watson's talking about it," she continues, "but you wonder why the subject isn't explored more. We need to raise awareness in order to raise funding so we can get more research done."

The field of research into adult brain tumours has been neglected compared to that of other cancers. Less that 2% of the National Cancer Research Institute funding in the UK is devoted to brain tumours. According to one charity, when you analyse the incidence of the tumours, along with survival and years of life lost, brain tumours should be receiving somewhere between 7.5% and 10% of the budget. For those directly affected by brain tumours, the need for further research and treatments is urgent. "Low-grade tumours aren't given the attention they deserve," says Julie, "yet they can cause quite a lot of problems over the years." She volunteers with Brain Tumour Action, which raises funds and operates support groups.

For the time being, the Reads are getting on with life like any other family, taking each day as it comes. "I don't think about it much," says Catherine. "Obviously, it's always there, but it's not something that really affects my day-to-day life because I've got used to it. He's still my dad. It's just the way it is."

For information and support, contact Brain Tumour Action (www.braintumouraction.org.uk, 0131 466 3116). Fundraising is already under way for International Brain Tumour Awareness Week (www.theibta.org), which begins on October 26

'I don't expect to die from this thing'

"I had my first brain scan on my tenth birthday and they discovered I had a brain tumour," says 25-year-old Vivian Barty-Taylor. "So my parents knew, but they decided not to tell me right away. I went for the scan and then went to my party."

The anguish felt by Vivian's parents is hard to imagine, but their son seems to have adjusted remarkably well. Having grown up in Edinburgh, he's now married and living in the Netherlands with his Dutch wife (above). He has just finished studying for a Masters in Musical Composition at the Royal Dutch Conservatory and is enjoying teaching and composing. "I managed to learn a new language with a brain tumour, so that's quite good going, I think," he says.

Vivian was diagnosed with a low-grade pilocytic astrocytoma tumour, which has a good prognosis. "The symptoms I've had over the years have not been caused directly by the brain tumour but by something called hydrocephalus," he says. "It's raised pressure inside the head, because my brain tumour sits on the place where the fluid would normally go through the spine. You can get all sorts of symptoms – headaches, memory problems, sickness, poor co-ordination."

His parents broke the news to him in stages, so that he had time to get used to the idea. "It's always been harder for them than for me," he says. "When it's you who's got it, it's a fact of life; it's not something to feel particularly upset about."

His tumour stopped growing at the same time he did, when he was about 18.

Vivian says he's grateful for his present good health. "I wasn't well in 2002 and I had to have three brain surgeries, but everyone lives with something," he says. "I don't expect to die from this thing. If I carry on as I'm doing at the moment, I'll live a long and happy, healthy life."

Brain tumours: the facts

13,000 people are diagnosed with a brain tumour in the UK each year, 5,000 of which are primary brain tumours. Between 300 and 400 of these new patients will be Scots.

The incidence of brain tumours has increased by 10% between 1991 and 2000.

100 children die each year in the UK as a result of a brain tumour.

Brain tumours cannot be prevented because their cause is unknown. No changes in lifestyle have been shown to reduce the risk.

3 months is the average life expectancy of an adult diagnosed with a malignant brain tumour (if left untreated)

Both benign and malignant brain tumours affect thought, emotion and physical function.

Feel better

What's the story?

I keep reading about B vitamins being good for energy, and as I'm working long hours up to and during the Edinburgh Festival Fringe, would these be a good supplement for me to take?

What's the lowdown?

B-complex vitamins – also known as the Bs – relate to a group of fascinating and important vitamins that help you and your body get the energy you need from food and into your cells.

What are they?

They are thiamine (B1), riboflavin (B2), niacin (B3), pantothenic acid (B5), pyridoxine (B6), biotin (B7), folic acid (B9) and cobalamin (B12).

In nature, B vitamins often occur together in food, and some health nutritionists say a well-balanced and varied diet should supply you with all you need. They are water-soluble, so any excess will be washed out in your urine (and be warned – the B complex will leave a fluorescent yellow tint to your urine, but this is a normal by-product of B5).

B vitamins are quickly depleted from our bodies due to our daily habits (consuming alcohol, and sugary and refined food) and lifestyles (getting stressed).

So, yes, B vitamins will help you through the busy festival months, but remember this does not replace a healthy diet and plenty of water.

Louisa Johnston

• Send your questions to [e-mail]. We'll answer your queries and each month will select one reader to have a free appointment with Louisa at Tonic Health, 41 Commercial Street, Edinburgh (www.tonichealthscotland.com)

Exercise class

GOLF UPRIGHT TORSO TWISTS

STAND with your legs just wider than shoulder-width apart and hold your driver mid-shaft with both hands, as in the photograph. Be sure to keep your back upright. Begin with some gentle torso twists. Focus on keeping your hands level as you twist, and let your hips and knees gently rotate. Keep your spine tall, and your feet and shoulders relaxed. Do this for just one minute.

Q Why is it important to warm up before a round of golf?

A As I mentioned in this column last week, golfers benefit from taking part in a regular, balanced and holistic fitness regime, with golf-specific exercises included. Warming up thoroughly before playing is just part of this.

Striking a golf ball is a sudden, dynamic and explosive movement. It places a lot of pressure on the body's muscles and joints, especially the knees, back, elbows and wrists. Many golfers develop minor aches and pains which, over time, can become seriously debilitating.

It is widely recognised that a fluid, relaxed and balanced stance leads to a good, consistent and powerful strike of the ball.

Before practising your swing and hitting some practice balls, I would recommend that you complete the warm-up exercise above.

Over the course of the next two months, I will be demonstrating seven more golf-specific warm-up exercises that I have developed. They have been designed to flow in the order they are published, so collect the whole set for a complete golf warm-up routine.

This will help prepare your muscles and joints for overload and exertion, cutting your risk of injury and even, potentially, improving your game.

David Calder

• David Calder is a fitness expert and personal trainer (07775 811 197, www.bodytension.co.uk). Please e-mail any golf-related fitness questions to [e-mail]

KITBAG

FOR a fun way to supplement

your fitness workout at home, try the Wii Fit and Balance Board. It includes aerobic exercise, muscle conditioning, yoga poses and balance games. And the best part is you can be safe in the knowledge that no one can see you wobbling about on the board. (Wii Fit and Balance Board, £69.95, www.johnlewis.com)