'I'm not afraid of dying'

Caroline Macdonald was just five years old when she was diagnosed with an inoperable brain tumour. Now 22, she tells Clare Rudebeck how she has learnt to live with the possibility that her condition could kill her at any time

Caroline Macdonald could die tomorrow. She could die in two years' time. Or, she could live to a ripe old age. Since she was five, a tumour has been growing in her brain, right by the brain stem, in the danger zone. Removing it would most likely cause paralysis. Living with it means constant pain and the possibility of sudden death. But this 22-year-old isn't worried about all that.

"Ach," she says. "The tumour makes me tired all the time, but I'm just normal, you know." She talks easily about the fact that her life could end at any moment. "I don't think about tomorrow, because I may not be here," she says from her house in Dufftown, Aberdeenshire, which she shares with her boyfriend Richard Blood, an RAF technician. "But I accept that and I'm not afraid of dying."

This peace of mind did not come easily. It emerged slowly out of a lifetime spent in and out of hospital. She has had 14 operations, has a permanent drain in her neck to remove fluid from around the tumour and suffers from regular epileptic fits.

However, Caroline has never found the pain difficult to deal with. She has lived happily with that for years. "I have a sore head twenty-four-seven," she says. "But I've had that for a long time and it's just usual now."

Her memories of childhood are not clouded by suffering, but lit up by the attention and cuddly toys that her condition elicited. "Oh, I thought it was great because I got all the presents," she says. "I would go into hospital and there would be teddy bears and sweets. My sisters never got that. And I had my mum and dad's attention all the time and they didn't."

Her childhood was less easy for her parents. The tumour was discovered by accident when Caroline was five. She had walked into a door and her mother, Margaret, took her to hospital. A brain scan showed that the door had not harmed her, but that there was a much bigger problem at the back of her brain.

She was diagnosed with an astro- cytoma, a common form of brain tumour that can be malignant or benign. Caroline's was benign, but its position made it life-threatening. The prognosis was uncertain, and she would be monitored closely throughout her childhood.

After a check-up when she was nine years old, her mother, Margaret, was told that her daughter would not live until her 10th birthday.

Caroline only became aware of her uncertain grip on life four years later. "I was about 14, and my doctor sat me down at home and told me that the tumour had moved into the stem of the brain and that I was going to have it for my whole life," she remembers. The fears that her parents had lived with for almost a decade hit her suddenly and forcefully.

"I remember the doctor was in our house for about four hours because I was shouting at him," she says. "I wanted this thing to go away. I didn't understand why I had been given it."

She was terrified. And this fear would be with her constantly for many years, disturbing her sleep and making her moods fluctuate violently. Despite living happily with constant pain since early childhood, she would find the knowledge that she could die at any moment almost unbearable.

"I couldn't sleep at night. I was too scared," she remembers. "Even if I went to sleep, I would wake up again. I was a nightmare and it wasn't fair on my parents or my sisters." She attempted suicide twice during her teenage years, although neither bid was life-threatening. "I took some painkillers," she says. "It wasn't serious: it just gave me a sore stomach."

She was also having a hard time at school. "I hated it," she says. "I hated my teachers bossing me about because I won't be told what to do by anybody. I'm my own person and I have been all my life. I was always answering back to them."

At that time, she did not expect to live to see her 21st birthday. She didn't socialise that often because she wasn't allowed to drink, and met her first boyfriend when she was 18. "The relationship lasted for a year and a half, but I didn't love him," she says. "I didn't want to love anyone because I thought, 'What if I let them get really close to me and then I potter off and die? It wouldn't be fair.'"

But she did get to celebrate her 21st birthday - and her surprise at living so long jolted her out of her terror. "I was reaching 21, the biggest milestone in life," she remembers. "I felt that the fact that I was still alive was a total miracle. My attitude to life changed over night. Suddenly, I wasn't afraid of death any more."

Caroline's new outlook soon produced spectacular results. Walking down Elgin high street one morning, she spotted a gorgeous young man in uniform on the other side of the street. Others would have let the love of their life pass them by, but not the new Caroline.

"I just walked over to him and pretended that I'd met him the night before when I was out on the town," she says. This was a barefaced lie. However, luckily for her, Richard, an RAF technician, had also been out the previous evening - albeit in a different town.

"After a bit of conversation, I said, 'Do you want to give me your number this time?'" remembers Caroline. Bamboozled but flattered, Richard happily obliged.

They moved in together less than a week later. Even discounting the fact that they hardly knew each other, it was a brave step. For a start, Caroline sleeps for most of the day. "When I'm sleeping, my head's not sore," she says. "And I'm tired all the time so I sleep a lot." But the couple easily overcame even this disadvantage. They get up together at 6am, but when Richard leaves for work at 7.30am, Caroline goes back to bed and rests.

She also has regular epileptic fits, but he is unworried by them. "He calls it my break-dancing," she says. He even puts up with her love of Daniel Bedingfield's music. His calmness about her illness has left her free to fall in love for the first time. "I know that if I die, Richard will be okay. He's a strong guy," she says.

After years of uncertainty, she has settled down into cosy domestic bliss. "I'm just happy to be who I am," she says. "I get up in the morning. I clean my house, do all my washing and ironing and then make Richard's dinner."

She also prepares his packed lunch for the next day - a task she puts considerable effort and planning into. "Everyone else has jam sandwiches for their lunch at work," she says. "They're all jealous of Richard because he gets sweeties and crisps - enough food for a week."

In the evenings they watch soap operas (Caroline's choice) and comedies (Richard's choice). Their life is as simple and happy as that.

But unlike many couples, they have no plans for the future, no grand schemes. Caroline is adamant that she doesn't want to have children. This is largely because of the medical implications. While pregnant, she would not be able to have a major operation and she could need surgery at a moment's notice if the drain in her neck became blocked or if her tumour moved or grew. But their decision is not something that she regrets.

"I'm too selfish," she says. "We both are. We live for ourselves. If we had children, Richard would have to give up riding dangerous motorbikes, but he wouldn't want to do that. We're happy together and that's plenty."

For the moment, her doctors will not contemplate trying to remove her tumour. Because the growth is so close to the brain stem, one false move during surgery could cause paralysis or death. However, if her condition deteriorated significantly, for example if her vision was permanently blurred or she was unable to co-ordinate her limbs, then this high-risk surgery would be her only hope.

However, once again, Caroline doesn't let this prospect worry her. "I may be tired and have a sore head, but I'm happy with the life that I've got at the moment," she says.

"I know that I may die tomorrow, but it's just what I have learnt to accept. It's not something I want to happen - I hope that I'll live for a very long time - but you can never tell."

Astrocytomas: from symptom to diagnosis

* Astrocytomas are a common form of brain tumour that occur when brain cells divide abnormally.

* Brain tumours are usually named after the type of cell from which they develop. Astrocytomas are formed from star-shaped cells called astrocytes.

* The first symptoms are often headaches, vomiting and visual problems caused by increased pressure within the skull.

* Fits, and changes in behaviour and personality can also be signs of a tumour, as can weakness or lack of co-ordination on one side of the body.

* Symptoms may also relate to the area of the brain where the tumour is developing. For example, if the growth is in the temporal lobe, it may cause problems with speech and memory, and if the parietal lobe is affected, writing may become difficult.

* People of all ages get astrocytomas. However, they are most common in middle-aged men.

* What causes astrocytomas, as with most brain tumours, is unknown.

* It is very rare for brain tumours to run in families.

* They are graded according to how quickly the cancer will develop. A low-grade tumour, such as Caroline's, grows slowly and is not likely to spread. A high-grade tumour is the most malignant.

* If possible, the tumour is treated with surgery. If it is high-grade, surgery will be followed by radiotherapy and/or chemotherapy. However, in some cases, such as Caroline's, the position of the tumour makes surgery too risky.