Finding the right thing to say to somebody who has just been diagnosed
with cancer can be extremely difficult. And for those who have cancer, sharing the news with their loved ones is one of the most emotionally draining aspects of facing up to the illness.
Yet communication is crucial. Strong social support helps people cope
better with their illness and can even speed up recovery. Telling them that they're not the only people who've had it is just about the worst thing to do, according to Maria Keegan, a volunteer with the breast-cancer support group Reach to Recovery.
"Sometimes cancer patients find it easier to talk to someone in a support group. You can empathise with them and explain how you've coped, but initially the most important thing to do is to sit and listen."
Shirley Brennan is a medical social worker at Beaumont Hosptial in Dublin.
She regularly helps families cope while a loved one is in hospital for radiotherapy or chemotherapy. "Some patients or family members gate-keep information until the time feels right to tell a son or
daughter.
"We find that it is important to work out the strengths of each family member
and build on them. We look at what we call the family script: who says what and how it is said, are things discussed together or separately, who's good at the emotional stuff and who's good at the practical stuff and who can be a support for each other. Is there anybody else in the support network: a friend, neighbour or colleague?"
Dr Malcolm Garland, a psychiatrist at Beaumont Hospital who works with
cancer patients, says: "Cancer is a microcosm of all the unpleasant situations we could go through in life, and the importance of communication is crucial from the psychological explosion of the initial diagnosis to the treatment phase to issues around recurrence.
"A family foisting a 'be positive' approach onto a patient can be burdensome, just as a conspiracy of silence or a hiding of their distress can have a negative effect on the patient. That said, even the most stable family will be thrown into disarray by a cancer diagnosis and will
have to reorganise psychologically."
The Burke family had very little time to reorganise when Paddy Burke (57) was rushed to surgery for a cancer in his stomach. It was rediagnosed weeks later as Burkitt's lymphoma, a cancer of the lymphatic system that particularly affects children in central Africa and may be linked to the extremely common Epstein-Barr virus. Within two days of the new diagnosis Burke was given emergency chemotherapy to stop the disease in its tracks.
"My wife, Gay, and my three children, who flew in from their homes abroad,
were told the seriousness of my cancer but asked not to tell me any more than necessary. It was a judgment call to keep me in a positive frame of mind," says
Burke, who is now recuperating at home in Dunshaughlin, Co Meath.
Gay Burke recalls: "Paddy's cancer was a huge shock to our peer group, as he was the first one in our group of friendsto get cancer. Some would ask me: 'How could it happen to Paddy? He's so fit and he doesn't smoke.' Eventually I couldn't take that kind of talk. There is nothing the doctors could tell us about why he contracted this form of cancer. There is
no reason why.
"I said at the outset that I would be totally honest with [our children]. I lived
from day to day when Paddy was in hospital. It was all very frightening, like a roller-coaster ride. One day he was getting better, the next day getting worse again.We have caller ID on our phone, so sometimes I wouldn't answer the phone and return calls days or weeks later."
Three-year-old Tadhg Dempster was diagnosed with neuroblastoma, a rare
form of childhood cancer, when he was nine months old. His mother, Clare, says what she found most hurtful was how some of the people closest to them couldn't talk about Tadhg's illness.
"There were some people who just didn't seem to be able to talk at all. Once we got over the initial shock we tried to deal with it in a forthright manner and expected other people to do the same. I found it very hurtful when some people just pretended that it wasn't happening."
The Dempster family, who live in Shankill, Co Dublin, used a messenger
system to share news during Tadhg's illness.
"We told a couple of really good friends to tell other friends. I just
couldn't keep ringing people, because what's really tiring is going through the whole story with everyone."
Deciding how much to tell children when somebody in the family has been
diagnosed with cancer is a worry for many parents. The Irish Cancer Society recommends talking openly and honestly in a way the child will understand and at a time when you will be around them (that is, not just before bedtime). Giving information in chunks rather than all together
and being prepared to go over things again and again is helpful. Also,
children will need to be reassured that the illness is not their fault, as they often feel guilty when things go wrong around them.
This and other information is contained in Who Can Ever Understand?: Talking About Your Cancer, a booklet published by the society. Among its other guidelines are finding the right settings to talk, describing your feelings and acknowledging any strong emotions or uncertainties that you or your listener may feel while you are chatting. Another
booklet, Lost for Words: How To Talk To Someone With Cancer, aims to help friends and family become good listeners.
The radio broadcaster Vere Wynne-Jones has strong feelings about the language used to talk about cancer. He believes cancer charities, the media and those treating cancer should talk up the success of cancer treatments and talk down mortality figures. "A lot of people don't get checked out for cancer because they believe it's a death sentence. Yet the potential capacity to be cured has never been greater, especially for those who present early enough," he says.
"What puts people off is the language of cancer. The whole cancer industry is obsessed with death rates rather than recovery rates. What we need to say is listen, folks, you can get better, particularly if you get problems checked out early.
People are significantly more likely to have confidence in their treatment if the survival statistics are talked up."
Wynne-Jones, who has had surgery for bowel cancer and chemotherapy for liver cancer, refuses to be downcast. “I’m fairly positive. My last scan was clear. I’ve had a great summer and my quality of life has been greatly enhanced.”
- The Irish Cancer Society operates a free
helpline, staffed by specialist nurses, to
provide confidential advice to anyone concerned
about cancer. It also provides free
copies of Who Can Ever Understand?:
Talking About Your Cancer and Lost for
Words: How To Talk To Someone With
Cancer. Its number is 1800-200700. Its
website is www.irish-cancer.ie - ARC Cancer Support Centre provides
support for people with cancer, their families
and friends. Its number is 01-8307333.
Its website is www.arccancersupport.ie