Cancer is particularly cruel for teens, but one support group helps to lighten the load a little, writes SHEILA WAYMAN
LORRAINE FLYNN is 18 years old and should be counting down the days to the Leaving Certificate in June. But three months ago she had to give up school.
“I was so tired and my concentration in class was not there,” says Lorraine who was diagnosed with adrenal cancer two years ago. Her ambition to become a teacher has been put on hold while she focuses on the physical and emotional challenges of her treatment.
After undergoing 10 months of chemotherapy, she is on a three-month break to give her body a rest. Sitting at a dining table at home in Celbridge, Co Kildare, Lorraine describes her typical day.
“I have to get up around 9am for tablets and then I go back to bed and sleep until about 12 or one o’clock. I have to take tablets again at 2pm and then I usually do something, go out – Mam takes me somewhere.”
She has a late-afternoon sleep, needs to take more tablets at 7pm before her dinner and then, occasionally, goes out. “At 10pm I have more tablets.”
Lorraine misses her friends. “It is hard because the girls are doing the Leaving Cert and they don’t have time to pop up,” she says. But they visit when they can.
“When Lorraine’s friends come, I can see the difference,” says her mother, Jacinta. “Those doors,” she indicates the connecting doors between the dining area and the front room, “are slammed closed and, whatever happens in there, I don’t get to know anything.”
There is never a good time to develop cancer but it seems particularly cruel when it strikes teenagers. It derails their education, isolates them from their peers and, just when they should be asserting their independence, pushes them back into the arms of their parents.
The first signs that something was amiss came when Lorraine was 16. She was putting on weight and body hair was growing on her stomach.
“Because Lorraine is a tall girl and a much bigger frame than her sister, I just thought it was ‘girlie’ problems,” says Jacinta. The GP suspected polycystic ovary syndrome but a dermatologist they visited in January 2009 wanted confirmation of that diagnosis.
Lorraine was referred to a hormonal specialist in St James’s Hospital but was going to have to wait until April 27th to see him. Meanwhile her condition was deteriorating and she was missing a lot of days at St Wolstan’s Community School.
She was just about coping with the everyday but then she got a pain in her side, recalls Jacinta. She was “very tired, agitated and a little all over the place”.
They had managed to get the referral appointment brought forward to March 12th, but Lorraine was so sick while waiting for the results of that consultation, she had to be admitted to the hospital through the emergency department four days later.
News of the diagnosis came on St Patrick’s Day. “We were told there was an ‘abnormality’ there,” says Jacinta, although that did not instantly bring “cancer” to their minds. “Then I asked was it a tumour and she said yes.”
Lorraine was transferred to Tallaght hospital, where the tumour was removed by keyhole surgery on April 1st. Pathology results suggested she had had the cancer for at least six months.
This period is all a bit of a blur to Lorraine but every key date is etched in the memory of Jacinta who, like her husband, James, is from Co Leitrim originally. She gave up her job with Superquinn, where she had worked for 25 years, to care for Lorraine, who is the middle child between Kevin (14) and Fiona (22).
Lorraine started chemotherapy as an inpatient in Tallaght hospital for five days and Jacinta slept on a mattress on the floor beside her. After that the treatment involved day visits four successive days a month. It made her very tired but she had no sickness. And she is glad that she has been able to retain her long, wavy black hair, bound this morning with a cheerful purple bow, by wearing a “cold cap” during chemotherapy.
The cap, which is put on half an hour before treatment begins and stays on two hours after it ends, cools the scalp and constricts the blood supply to the follicles, preventing a high dose of chemo being delivered there. It prolongs her time in the hospital, but Lorraine says it’s worth it because she does not stand out as someone with cancer. “People just think I am normal.”
Physical appearance is so important for that age group, points out Evelyn Griffith, group co-ordinator of a young people’s cancer support group, CanTeen Ireland. The group supports people aged 12-25 who have cancer, enabling them to meet peers who understand exactly what they are going through.
“There is a lot of loss for teenagers,” she says. “They have lost their youth and just being a teenager. That is what CanTeen tries to give them back.”
Although, overall, the prognosis is “quite good” for the 150-200 children and young adults diagnosed with cancer each year in the Republic, it does depend on the type of cancer and how early it is detected.
As cancer is rare in teenagers, it is not always foremost in the minds of GPs, who might never have seen it before. Thus, there can be a delay before they are referred for relevant tests.
For treatment, teenagers under 16 generally go to a children’s hospital and after that to an adult hospital. A dedicated teenage cancer unit, as they have in regional centres around the UK, would make a huge difference, says Griffith, as it can be traumatic for a 16 year old to be in a ward with very ill, elderly people.
CanTeen, which is funded by private donations, runs an information service and organises a meet-up every month, alternating between day events and weekends away. While parents help with fundraising, they are not involved in the activities.
“Parents need a break and the teenagers need a break from their parents,” says Griffith, a nurse and sole staff member of CanTeen. It is hard for parents to treat them as “normal” teenagers and there is a tendency to be over-protective – particularly with the younger teenagers. “It’s only natural.”
With cancer, the treatment often seems worse than the illness. Parents of children who may not seem that ill until treatment starts, have to watch them get sicker. CanTeen’s 250 members range from those who have been through, or are currently undergoing, treatment, to those on palliative care. If they are not able to participate in activities, they can just sit down and chat, she explains.
“We have brought teenagers to Alton Towers [a UK theme park], who at the time would have been palliative and would have died a couple of months later. Parents will say afterwards how much it meant to them.”
The teenagers just want to be treated normally. “When they come to CanTeen, if they have no hair or have only one leg, no one bats an eyelid. It’s not an issue,” says Griffith.
It’s not all doom and gloom, she stresses. The majority do get through their illness – former members who come back as volunteers after the age of 25 are living proof of that.
“Death is not something we really dwell on. We have teenagers who have died and we remember them.”
Even teenagers who are dying don’t dwell on it, she explains. “They are living right to the end. They would still talk about ‘when I get out of here . . .’ It is much more positive.”
Lorraine says CanTeen has made a “huge difference” to her. As we talk, she is looking forward to heading off the next day for a relaxation weekend in Kiltegan, Co Wicklow. “We go and have the craic,” she says. Later in the year, she is planning to go much further afield.
“Lorraine is hoping to go on holidays . . .” starts Jacinta. “I am [going],” interjects her daughter firmly. She has her sights set on joining friends from the class of 2011 for a post-Leaving Cert trip to Santa Ponsa in Spain.
The very idea may be giving her father angina, says Jacinta, but her consultant said they were “going to work around this” when Lorraine told him, “and she came out beaming”.
Lorraine has learnt how to pace herself. “She never complains. She had to come to terms with the fact that her body was just tired,” says Jacinta, who has also had to adapt to the long haul of her daughter’s treatment.
She takes comfort from her Catholic faith but there are days when she rails at the unfairness of Lorraine’s illness. Adrenal cancer is relatively little known, with around a dozen cases diagnosed annually in the Republic.
Asked if she sometimes wonders “why me?”, Lorraine nods and tears well up in her big, pale blue eyes. Jacinta passes her some tissues.
Neither thought this was how life would turn out for them – “but another year, and hopefully we will be out of it”, says Jacinta. “Lorraine is very positive and knows if she does not go back to school, there are other ways to get the Leaving. To get well now is the main thing.”
For more information see canteen.ie
True grit in the face of testing times: 'I'm not old. [But] if it went on for another few years, I would start getting annoyed.'
Stephen Larkin is unlikely to ever forget how he spent his 17th birthday – it was the day he started chemotherapy for bone cancer in his knee.
He enjoyed soccer but had not been able to play for many months before he was diagnosed with osteosarcoma – one of the most common cancers in teenagers – because he could not run properly. Then a lump appeared and got bigger as time went on.
His doctor thought it looked like a ligament problem. “He gave me painkillers and they helped but the lump was still there,” says Larkin.
He was sent for an X-ray and then a biopsy at Cappagh hospital in Dublin. Having done some research before the biopsy, he had a fair idea of what the outcome might be.
“I looked it up and there was one cancer that basically fitted every single symptom, so I expected it before I was diagnosed.” Although he wanted to know everything, “it is a bit of a shock reading it”, he says.
After surgery on his knee, he started chemotherapy in the Mater hospital on April 26th, 2007. He was up and down from his home in Arklow, Co Wicklow, for a few days at a time, on two different cycles of chemotherapy, until the end of October.
“I actually didn’t mind the treatment,” says Stephen (20). “Yes it was worse than the actual cancer but I was never vomiting, just tired. I couldn’t go out because the immune system is shot.”
He went back to school at St Kevin’s CBS in Arklow, in January 2008 but was still in and out due to tiredness. “I didn’t go back to school properly until March 2008.”
He had gone into sixth year but soon realised he would have to go back a year because he had missed so much. He sat his Leaving in 2009 and got the grades he thought he needed for science in UCD but unfortunately the points required shot up from 300 to 400 that year.
“I would have got it if I hadn’t got cancer and had done the Leaving Cert the year before.” Feeling he was too old to go back to school, he decided to repeat the Leaving by studying at home.
Then last April he started getting chest pains. “They said ‘there is a lot of fluid in your right lung’, and I thought, ‘it’s only fluid’, and then they said ‘there is a tumour in the middle of it as well’.”
Due to its position, surgery was not advised. He had to start chemotherapy all over again and ended up in hospital for the whole of June after contracting an infection – preventing him from repeating the Leaving.
Since completing the second course of treatment last November, he has been “in limbo”. He is currently waiting for the chance to go on to third level this September, having applied for various science courses around the country.
What does he do all day? “I seem to need a lot of sleep but that is not to do with the cancer; I have got myself into this.”
With his mother, Eliz, out working and his younger sister at school – his older brother is away at college – Stephen doesn’t get up until mid-morning. He sits around watching television, goes on the computer, reads and listens to music. Inevitably he has lost touch with friends, many of whom have moved away to college.
Does he feel isolated? “Not really, no. I know the way I am living at the moment is kind of isolated but I don’t feel isolated.”
Was it hard having his education held back? “I’m not old,” he says with a roll of his eyes behind his black-rimmed spectacles. “If it went on for another few years, I would start getting annoyed. I am starting college at 21 so that’s not too bad.”
Does he ever get angry at having cancer? “No, it happened,” he says philosophically and explains that “I am a bit strange because I actually enjoyed it. I like hospitals.” He always wanted to be a doctor – “still do, but I can’t see it happening”.
Meanwhile, he is not on any medication and the doctors seem happy enough, he says. He thinks they believe the tumour is mostly dead matter and are waiting to see if it breaks down naturally. However, “it is still there, so I am kind of wary that something will happen”.
