Some 20,000 people develop cancer each year. But, apart from medical care, sometimes they just need someone to talk to. The Irish Cancer helpline is listening, writes Anne Dempsey
'I had a call yesterday from a woman whose husband had just been diagnosed with lung cancer and he doesn't know yet. They have young children. She was very upset. I listened a lot and let her speak. Later I recommended two of our books, Lost For Words and Who Can Ever Understand, which we posted out with some leaflets. I also suggested she talk to the hospital social worker, who is trained in counselling and could give that kind of ongoing support. She was on for about 20 minutes. At the end I think she felt a bit better. It was good for her just to be able to talk, to feel that there was someone there who understood."
Nancy Kelly works with the Irish Cancer Society's helpline, set up in 1985 to support and advise people affected by cancer and to answer public queries and concerns. They notched up 6,400 calls last year, about 25 calls each weekday. Nancy's office overlooks Northumberland Road in Dublin, where people pass by as they go about their lives.
"One in three people will be affected by cancer, 20,000 people in Ireland are diagnosed with cancer annually and 7,500 die from the disease each year. So there is a great need for advice and support. We are not counsellors, we are cancer nurse specialists, but we can empathise, put ourselves in their shoes, really try to understand what's going on for them and be with them as best we can."
The service is run by a team of four. Kelly works full time, with part-time staff Anne Rooney, Jennifer Ledwith and Anne Marie Lynch. A fifth member is on maternity leave, and they are recruiting a new team manager. The helpline recently became the State's first service to be granted full membership of the UK Telephone Helplines Association, which sets standards for protocols, training and confidentiality. "The calls can be about anything. Someone has found a lump, a caller is wondering what to say to someone else, another is caring for a patient at home and needing a night nurse, which we can organise. It could be a question, 'Can you get cancer from vegetable oil?' " - no - "a query regarding a family history of cancer or it could be someone just trying to cope.
"People who have received a diagnosis may be very confused. They will often say: 'I was in shock and couldn't take in a word he said.' We recommend people take someone with them with whom they can compare notes afterwards, and we can help callers write down the questions they want to ask, so they can bring the list with them next time.
"We get people coming in as well. Again, usually they have received bad news; there may have been a bereavement, a crisis. They need to talk. Basically, we listen and offer some signposts. We may direct them to ARC Cancer Support Centre in Dublin, provide literature, suggest counselling if we feel it would help or provide a list of consultants if that is their need. Calls sometimes reflect what is going on in the media. Every morning we get a printout from our communications department of stories covered in the last 24 hours, so that we know what to expect. If there is the launch of a new machine related to cancer care, you can expect calls asking: 'Could I benefit from that?' Anything that's going on feeds back into the calls."
Twice as many women as men call. "Men still think they have to cope on their own; they may phone for information and tell us they are glad to know we're there and will come back if they need us. We often get families who don't want the patient to know they have cancer. We would discourage such secrets, as both research and experience would suggest that openness is the best policy, unless, of course, the patient doesn't want to know. In that case, we would suggest respecting the pace of the patient, who will ask questions if and when they are ready. The relative or carer may be helped if they find people they can talk to for themselves."
Nine support groups are affiliated to the Irish Cancer Society, covering men's, women's and children's cancers. Groups have regular meetings and volunteers can be contacted.
Calls can also reflect a health service under siege in some quarters. "An angry caller can be difficult to deal with. They want to let off steam, blame someone. You listen but don't take sides. If they need more information, you encourage them to go back again and find out. People give out about waiting lists. It can be very stressful if you're waiting for a bed. Here we offer support and may suggest they contact their GP or the oncology liaison nurse now employed in the major hospitals, whose role is to offer psychological help to patient and family.
"Some of the saddest calls are when someone very young has been diagnosed with cancer, or parents phone about a child, or a patient finds the cancer has come back. That is very hard."
While talking and listening may not change a diagnosis, the helpline feedback shows that listening well can lessen loneliness and fear, improve patient and family wellbeing and make things a little easier all round. But listening seems to be something we don't do well as a society.
"Callers often tell us it's difficult to get people to just listen. If someone you know has cancer or is caring for someone with cancer, ask them how you can help. Take your cue from them rather than telling them how it is or should be. Don't talk about other people and how they've done; it isn't necessarily helpful, as their cancer may be different. The next time you meet, let them take the initiative about whether they want to talk about cancer or not."