All in the same boat
The Lung Cancer Forum Austria provides a lobby for its members’ concerns
Vienna – If all of the members who are no longer with us were here, then we’d need a larger room,” explained Franz Buchberger, president of the Lung Cancer Forum Austria. This self-help group meets regularly in the Löwelzimmer at Café Landtmann. Today, however, they only have the one table, with five sufferers at the meeting, two of whom have brought relatives along. The other tables are empty. “When we were at our busiest, twelve or more members would come,” noted Buchberger, himself a former lung cancer patient, “today it’s seven.”
“We never get beyond this small circle, even though we have been around for ten years now,” explained Fritz Jaworsky, the group’s treasurer and likewise a former lung cancer patient. According to Jaworsky there are several reasons that more people with the disease do not come to the group, despite the fact that lung cancer is the second most common type of cancer among Austrian males and the third most common among Austrian females: “Lung cancer patients do not have a good image in society.” The first question put to people with the condition is always: “Did you smoke?” To many sufferers, this suggests that they are somehow at fault, even if they have never smoked, Jaworsky confirmed. “What we’re missing is a lobby. Other cancer patient groups are backed by a lot of high-profile people who have had the disease, like breast cancer,” Jaworsky said.
Individual path
This is further compounded by the fact that survival rates for lung cancer are comparatively low. And – like many other cancer patients – “many people do not want to have anything to do with the disease after chemotherapy and are just happy when it is over or has become chronic. Each individual has their own way of coming to terms with something like that,” Buchberger added. And there are always relatives who do not want cancer patients to attend the selfhelp group. “I know one man whose wife stopped him from coming to us, because you’ll only find ill people there,” one female participant explained. “Loved ones often put patients under too much pressure,” Buchberger confirmed. But the door is open to them too.
Buchberger mentioned that noone would have got him to attend a self-help group meeting before. But that is all different now, and Buchberger attends with his wife. “I think I suffered more from the diagnosis than my husband,” she explained. She had particular difficulty dealing with people’s questions about her husband’s health when she was out shopping. “People kept just telling me ‘it’ll be alright’. Although they meant well, I just could not bear to hear that sentence after a while.”
Informal platform
People in similar situations are better placed to understand how sufferers and their relatives feel. “Which is why we meet,” said Buchberger. Talking helps – “above all because many doctors are poor communicators,” added another participant. “Sometimes it takes a very long time before you get a diagnosis and even then noone is prepared to actually spell it out. For a long time, no-one told me that I had cancer,” said another group member. And on top of that come existential fears because many of those affected are unable to continue to work after being diagnosed. All of these issues are up for discussion in the self-help group, as well as everyday matters such as how much money patients can expect back from their health insurers when they visit the doctor of their choice.
Self-help groups are also a kind of patient representative body. Representatives of the lung cancer forum speak in the name of the patients at congresses and other events. “We are a kind of union – we address the needs of those affected,” Franz Buchberger concluded.
The main purpose of the group, which has become a circle of friends over the years, is to give sufferers hope. “When you receive the diagnosis it feels like the end of the world,” one participant noted. But the members of the self-help group want to show that this is not the case. “We are proof that lung cancer can become a chronic disease, and that people who are diagnosed with it can still mess around and have fun, just like us.”