'Just say cancer' aims to support young people fighting the illness
WHEN you hear about a club for 18 to 30-year-olds you tend to think of young adults living it up on an Ibizan hotspot — you don’t think about a cancer support group.
The disease can affect any age but because it is more common in the older demographic, support services for younger sufferers may not be as visible.
According to the National Cancer Registry of Ireland, the number of cancer cases among males and females between the ages of 20 and 34 rose steadily between 2002 (441) and 2009 (636).
The latest figure, for 2012, is 565 cases, slightly down on 2010 (577) and 2011 (591).
Statistics don’t matter much to Cork girl Janice O’Connor who was diagnosed with ovarian cancer last year at the age of 21.
She had been suffering a pain ripping up through the right side of her abdomen and doctors initially thought she needed to have her appendix removed.
An ultrasound revealed a large abnormal cyst on her right ovary, and she was sent to the CUMH to have it removed. Two weeks later she was called in to be told the bad news.
“The day of my diagnosis was the first day of my new life,” she says. “I had two operations followed by intensive chemotherapy for five months.
“Endless hospital appointments and feeling so unwell became my way of living. I felt for the whole time I was a in a bubble and I didn’t have any time to process the journey.”
Helping to set up — or even being part of — a support group wasn’t a priority for Janice in the early stages of the illness.
“The whole way through treatment I didn’t want to go near any support group,” she says. “I had it in my head that when I finished treatment I would be fine again and my broken life would be magically fixed.”
However, the reality was very different, she says. She felt lost after treatment. “No more hospital appointments every week, no more staying on top of my medication.
"I felt like I was dropped back into a broken life expected to pick up where I left off. My cancer was gone but I still felt weak and tired.
"I had depression and anxiety — it got so bad I used to spend my days in home away from the world. I wanted to be strong; I beat cancer so I shouldn’t be sad — so I kept my feelings to myself.”
Janice, who is from Farranree, was referred to a programme that deals with anxiety and depression but found it wasn’t for her.
It wasn’t until she became part of the privately- funded, Cork-based support group, The Girls Club, that things started to turn around.
“I realised that was what I needed; I needed to be around people like me that got it,” she says.
She got in touch with Girls Club founder Ann Downey-Spillane through Facebook on the day she suffered her first panic attack.
“She asked for my number and spent an hour on the phone to me. I felt instantly better. I called in a week later and told her we need to set up a group for my age.”
Janice had researched online for support systems for young adults with cancer and found nothing. “I think people think only older people and young children get cancer.
“Nobody expects young adults to get cancer. Being in your 20s, you feel invincible, without a care in the world. Our age group is a forgotten group.”
AND so the work began, weekly meetings to discuss the logistics of setting up a new club which was to become known as Just Say Cancer.
Janice works closely with Charlie Crowley, another ambassador for the group after being diagnosed over the summer.
Ann and her team of volunteers have now orchestrated a specific support service for people aged 18 to 30 which includes counselling, meditation, holistic therapy, monthly club meetings, film club, drop-in centre, and a wig and scarf clinic.
But most importantly, it’s about struggling to find that sense of belonging.
“Ann was so supportive,” says Janice. “The club is after helping me to find myself again; it’s helping me put my pieces back together.”
“Charlie and Janice are the next generation of representatives for creating awareness,” says Ann.“The younger ones — who are a forgotten group — all have a common bond which is cancer. They will help each other survive.”
Naomi Fitzgibbon is a cancer nurse line manager who helps to run the Irish Cancer Society’s freephone helpline and support service.
She agrees that younger people have very different support needs, and prefer to communicate via social media rather than call a helpline.
For instance, they may not even have thought about having children but fertility can be compromised by cancer treatment.
“Cancer in the under-30s is more unusual and they have a different outlook and experience of cancer. It’s important for them to know all the options regarding fertility.
You hear about younger patients not being told at the time of their diagnosis, or maybe not taking it in at the time.
“They may not know what to ask.
It’s important that these conversations are happening and that young people know there are options and support available. We can put them in touch with a number of different support, referral and counselling services all over the country.”
The Cancer Nurseline, 1800-200700, operates Monday to Thursday from 9am to 6pm, and Fridays from 9am to 5pm.
Get online support at www.cancer.ie.
The Girls Club Cork operates a drop-in centre from 10am to 5pm Monday to Friday. See www.thegirlsclubcork.ie
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