Me And The Big C

Sun Herald

Sunday April 29, 2007

By Helen Hawkes

They're in remission so they should be on top of the world, right? For many survivors of childhood cancer, the reality is vastly different. By Helen Hawkes.

For 24-year-old Matthew McLean, phrases such as "acute lymphoblastic leukaemia" and "full-body radiation" have become part of his everyday lexicon. After eight years

in the medical system, he is as fluent in the language of cancer as most other twentysomethings are in the jargon of youth.

Not surprisingly, he finds it tough to talk to his peers because "people don't understand where you're coming from," he says. "It's not like you're missing a limb; it's on the inside." The doctors told him recovery would start in five years. "You do suffer," says McLean, "not just during treatment but after."

Turning their attention to survivors are the Cancer Council Australia, the Leukaemia Foundation and the Peter MacCallum Cancer Centre at Melbourne Children's Hospital but at the latter's Paediatric and Late Effects service, staff are able to see only about 300 out of 250,000 cancer survivors in Victoria a year.

"Often when people survive cancer, there's this expectation that they should be feeling great," says Professor Ian Olver, CEO of the Cancer Council Australia. "But they're not and no one seems to understand. There are physical and mental effects that a decade ago weren't talked about much."

The side effects of cancer treatments can include bone problems, hormonal disturbances, cognitive dysfunction, anxiety and a sense of isolation. For young people, there is also an interruption to normal teenage life. While other kids are dreaming of the car they'll buy one day, or the hottie they met at a party, these teens are wondering how to disguise the fact that they've lost their hair.

Meanwhile, those who have survived cancer develop their own ways of getting on. There is life after cancer, says Nicole Birrell, 53, a Sydney company director whose daughter, Helen, survived osteogenic sarcoma, a childhood bone cancer. "People think you are marked for life and, yes, in a way you are. But it is also important to realise that there can be positive outcomes," says Birrell.

Matthew McLean was living on the family farm, 30 kilometres out of Shepparton, Victoria, when he was diagnosed with an aggressive form of leukaemia in 1997. He was 16 and had been unwell for almost a year before his mother Lynn, a geriatric nurse, got the news. "The doctor called at 10.30pm on Good Friday in 1997 and said Matthew had leukaemia," says Lynn, now 59. "Matthew had been a very fit, active guy and then I would see him come back from a bike ride and he would be short of breath, his heart pounding. I knew something was wrong but when I found out what, my heart sank."

Like other mothers of children who have had cancer, Lynn comes across as stout-hearted and protective. "I never really thought he'd die - he responded so well to the treatment," she says, though McLean's cancer was potentially fatal. "You kid yourself until they get through."

McLean's dad, David, now 62 and a full-time carer, says, "Dealing with cancer and coping with it are two different things. The emotional stuff gets pushed to the back." Because Lynn worked, David became the one who took Matthew to all his appointments "and helped jolly him up and support him psychologically".

Lynn and David say the doctors told them the type of leukaemia their son had - acute myeloid leukaemia - was "pretty savage" and unusual in someone so young. Consequently, they treated it with huge doses of chemotherapy, in three cycles, nicknamed "The Big Ice" for the initials of the drugs it uses.

"I remember bits of it - vomiting, diarrhoea, losing my hair - but some of it you blank out," recalls McLean. "I went from 115 kilograms to 38. I had no muscle, no fat." He had to learn to walk again.

He went into remission for two years, then the cancer came back, something that Lynn took less stoically than she had the first time around. "I was shocked but the doctors weren't."

McLean had chemotherapy, full-body radiation, then a bone marrow transplant. "You let yourself feel sad and miserable for a bit but then you have to get on with it," he says.

Post transplant, he developed graft-versus-host disease, where the donor marrow attacks the recipient's body, and "had third-degree internal burns from my throat to my feet". Massive doses of steroids followed, then a severe case of shingles.

"Kids come out of a treatment like that desocialised, with agoraphobia and with a fear of what might be ordinary situations," says David. "You see all those gold medals being won at the Olympics? Well, these kids deserve gold medals."

McLean developed cataracts and suffered fatigue and nausea. He doesn't have much enamel left on his teeth, which will cost $20,000 to fix. He has regular bone scans and, until recently, bone-marrow biopsies put him out of action for a week.

While David says he isn't confident his son's ordeal is over, Lynn is more positive. "We are coming to the end of it," she tells me, just days before McLean passes the five-year remission mark. "This will be Matthew's year, I know it!"

He's started having counselling and goes to the gym three days a week, to build up his strength. He makes sure he eats well. And he's restoring a 1984 XF Falcon he hopes to have finished by Christmas - he'd like to work with cars, or maybe computers.

Primary school teacher Robyn Pizzey, 58, was only 27 when doctors told her that her four-year-old son, Mark, had leukaemia. "I was determined he was going to live, though he was only given four to five weeks," she says. "When he asked me what was wrong, I'd say, 'There is nothing to worry about.

Your blood is sick but as soon as they get that better, you'll be right.'"

The family, including father Bob, now 62, and brother Steven, 32, moved from western NSW to Sydney, while their son had four years of treatment at the then Camperdown Children's Hospital. Bob says he was lucky his firm gave him a position in Sydney. "So I toddled off to work every day leaving Robyn to manage Mark. But I remember crying in the car."

Pizzey is now 33, an automotive electrician and still lives with his parents in Newcastle. He says he remembers little of his childhood treatment. He suffers side effects, including delayed growth. He has regular testosterone injections to replace hormones destroyed by therapy. "You live with what you've got. There's no point feeling sorry for yourself."

He is easygoing if shy. He says he's very conscious of his height (155 centimetres) and that he used to get beaten up at school by kids who didn't know what had happened to him. "I'd push them over and keep going," he says. Robyn says she wanted "to put him in a glasshouse and protect him as much as possible". But he went to Cubs and Scouts and on 20-kilometre hikes like everyone else.

She says that she told him off, if necessary, just like she did his brother. "I suppose some people would think I am not a very nice mother! But I knew he had lost a bit of confidence and he needed to be treated the same as everyone else."

While Pizzey still undergoes regular bone scans and heart checks, he has enough distance between now and the worst of his experiences to have an active life. He works five-and-a-half days a week and plays lawn bowls with mates at Adamstown Bowling Club. He likes fishing and boating but "I've still got a bald patch and I'd like to be tall like my brother."

At 19, he joined CanTeen, the national support organisation for young people, going to regular camps and workshops, which his mum says helped bring him out of his shell. "It was good to talk to other kids about cancer but about other things, too," he says. Robyn adds, "I think he still lives at home because it's a bit of a comfort zone. He still doesn't have a lot of confidence but we're proud of him."

Helen Birrell, now 24, believes her childhood experiences have made her "less of a show-off", more focused on others' needs and more aware that the worst can happen. "You don't wake up every day and say, 'I've got to make the most of my life,'" she says. "But I haven't spent my life doing nothing."

Five years after her second cancer treatment, at the age of 18, she worked in Surrey in England for two years at a home for refugees; she travelled around the US; and is now doing a double degree in arts and science at the University of Melbourne. Until recently, she was a volunteer at the Royal Children's Hospital (RCH); now she cares for a girl with cerebral palsy and volunteers for a peer-support program through the Cancer Council Victoria's Cancer Support Service.

Diagnosed with cancer in her first year at Melbourne Girls Grammar, she had chemotherapy, then a complete knee replacement at Melbourne's RCH. "I wore a beanie like a safety cap until my hair grew back a bit, then a girlfriend took it from me and wouldn't give it back. She was saying, 'You don't need that any more.'"

In year eight, just before Christmas 1996, Birrell noticed a pain in her right shoulder and thought, "Here we go again." "I didn't say anything initially because I didn't want to ruin Christmas. Although I am at the point now where I understand that, if it should come back, the quicker it is found the better." Her mother, Nicole, says that was her lowest point. "It was not a metastatic cancer [it had not spread from one part of the body to another] and it is extremely rare to have two primary cancers. My husband and I coped by becoming almost instant experts on treatment options, which gave us a sense of control." More chemotherapy, at higher doses, and a shoulder replacement followed. Helen has restricted movement around both her shoulder and knee joint - "I can't do most sports" - and two fairly large scars but will soon celebrate her 10-year survival mark.

For McLean, the battle goes on. Eye problems mean he's had to stop driving and he'd like friends to visit more: "I hear people whingeing about stuff and I think: worry about something real." Pizzey agrees: "You try [to] have some fun. You put the smile back on your face. You talk about cancer sometimes but you mostly talk about other things. You run with the life you've got."

SUPPORT FOR CANCER SURVIVORS

The Cancer Council, a non-government organisation, offers patient and relative support programs, advice on recovery aids such as wigs and a phone helpline. A new program, Cancer Connect, in NSW, Victoria and SA matches the newly diagnosed and those caring for people with cancer with others who have been through a similar experience. Call 131 120.

Says Doreen Akkerman OAM, director of the Cancer Information and Support Service with the Cancer Council Victoria, "After you have cancer, your life is never the same. Some people want to forget about it but some have long-term issues."

The Leukaemia Foundation offers support - from practical help (for example, accommodation during treatment) to counselling. Call 1800 620 420 or go to www.leukaemia.org.au. CanTeen, the national support organisation for young people living with cancer, offers members camps and programs away from the environment of cancer hospitals and treatment regimens. Call 1800 226 833 or see www.canteen.org.au.

© 2007 Sun Herald

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