Sunday 20 April 2014

'I can joke about cancer with my CanTeen friends – they understand'

A group for young patients helped Caoimhe Phelan cope with getting a diagnosis of leukemia at aged 11, writes Edel Coffey

A group for young patients helped Caoimhe Phelan cope with getting a diagnosis of leukemia at aged 11
A group for young patients helped Caoimhe Phelan cope with getting a diagnosis of leukemia at aged 11

IN 2008, Kilkenny native Caoimhe Phelan was a typical 11-year-old girl. In December that year, she celebrated her birthday with a trip to the local ice-skating rink with her friends.

"I fell, and a couple of days later my knee was very sore and so I went to hospital. They thought it was maybe fluid or something but it was going on for a very long time. In the meantime, lymph nodes in my neck had started to get very swollen so they had to be removed twice."

After tests on Caoimhe's knee led to inconclusive results, her mother went back to her GP and asked for a second opinion. He referred them to Crumlin Children's Hospital, where Caoimhe got an MRI bone marrow scan.

"I wasn't sure what the test was for," says Caoimhe, now 16 and living in Cobh with her family. "But I kind of knew by the mood of everybody that something was not right." She was diagnosed with acute lymphoblastic leukemia, a cancer that begins in the white blood cells of the bone marrow. Was this difficult for her to understand, at such a young age – how did they break the news to her?

"They told my parents first and my dad tried to explain it. The nurse also explained what was going on, that my cells were not working properly and that they were attacking the good cells."

Was she aware of how serious it was? "I knew that people died from cancer. My doctor said I asked every question under the sun. Being that young, I think I was unaware of every detail and I was told that the odds were very good."

She was given treatment between Crumlin and Cork. "I was very weak for a lot of it. The sickness was the main thing. I was never sick before that, and rarely at the doctor's. There was a lot of weight loss."

Another side-effect of chemotherapy is that the immune system is low. "At one stage, I had a really bad infection, so bad that I was in bed and had muscle wastage and had to learn to walk again."

Whatever about the difficulties an adult might experience coming to terms with the side effects of cancer, having to deal with those as a young girl on the verge of adolescence has to be tough.

"There was a lot of bloating from the steroids. That was hard because at one stage you're really bloated, and then you're thin. Losing my hair was the tough part for me. I always had long, thick hair and I cut it very short so it wouldn't fall out in long clumps."

Confidence became an unexpected issue for Caoimhe. "I felt like I kind of got left behind with school and everyone moved on and I was still there and losing my hair and looking sick. I felt not very confident and people would look at you and stuff, but I could say anything or do anything I wanted and they'd all understand."

During her treatment, Caoimhe says she kept to herself and didn't really talk to other patients. She came across CanTeen in 2010. CanTeen Ireland is a nationwide support group for young people who have or have had cancer, and for their brothers, sisters and friends. It was set up in 1990 by a group of health professionals. When Caoimhe started going to group meetings, it was the first time she had really spoken about her cancer with people who understood what she had been through.

"You have a bond straight away, without even knowing these people. You can connect with them straight away without having to go into major detail. If you're trying to talk to people at home, you don't want them to feel awkward or sympathy or pity. In CanTeen, you can joke about it and people understand you."

How did she cope with becoming aware of her mortality at such a young age? "At one stage, I was so sick I thought I might be better off . . ." she pauses, "and then when you see everyone trying to help you, you get strength from that.

"You definitely become different in your outlook. It's made me more mature. Some of my friends have passed away from this, so I appreciate things. I can get frustrated when people complain about small things."

That's another area where CanTeen helps. Inevitably, any young person dealing with cancer will have met others in the same situation who do not survive the illness.

"Any of our friends who have passed away were group friends, so it helps a lot to have the group," says Caoimhe.

Five years on, Caoimhe feels healthy. "I'm really into GAA and I play camogie. I'm in fifth year. I missed all of first and most of second year and got home tuition, which was hard."

The Leaving Cert is coming up. How does she feel about that? "It's tough. I want to do paediatric nursing when I leave. I like children; I like working with them.

"When I was in hospital, the nurses were brilliant with me. They know when not to push you; they understand. They can be really light-hearted and cheer you up." Would she like to do the same thing for other children? "I hope so."

For anyone going through the same thing as she has, she has a few words of advice. "Just keep going. There are a lot of things that can come out of it as well, like CanTeen. The opportunities in CanTeen are great. I get to share in all the trips and we have kind of become like a family. We had a trip to Alton Towers this year, which was my favourite. We have day meetings, and sometimes we have a discussion about the illness, and then we just have fun."

For more information about CanTeen Ireland see, call 01-8735737or visit the CanTeen Ireland Facebook page.

Irish Independent

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