Battle? Victory? Defeat?

Photo of Hilde Schulte (Hilde Schulte)

Hilde Schulte, Honorary Chairwoman of "Frauenselbsthilfe nach Krebs" in Germany (Women’s self-help after cancer)

"This military language does achieve its desired effect. It intensifies the existential threat and the impression that everything is at stake – war or peace, victory or defeat, black or white.“ - Thoughts on how the media deal with cancer.

“X has conquered cancer” – “Y has lost the battle against cancer”. Headlines like these capture the readers’ attention. Well done journalistically-speaking, sensationalist, and a clever approach – but I don’t like these kinds of headlines. Because cancer patients like me also read them. Cancer patients who have just been diagnosed with the disease and are still in shock, who are just undergoing necessary therapy with distressing side effects, whose disease is already at an advanced stage or who are receiving palliative treatment. They all pay particular attention to these catchphrases and articles because they are affected.

This military language does achieve its desired effect. It intensifies the existential threat and the impression that everything is at stake – war or peace, victory or defeat, black or white. The world of media has no room for shades of gray, even though medical progress has dissolved the either-or of a cure or death. There is such a thing as living with cancer, often for a long period of time, even at an advanced stage, and with a good quality of life.

The "all-clear" can only be given after several years

Full recovery can never be guaranteed. It is always hoped for and desired, and in many cases it is possible from a statistical point of view. But the risk of the cancer returning or starting to progress again always remains. Especially when celebrities are concerned, headlines like “Victory over cancer” often appear after local primary therapy (surgery and radiation) is completed. They give the wrong impression at this time. Particularly in the first two years, the risk of recurrence is high.

The careless way the media use the term “cured” can lead to a false and dangerous sense of security. Acute therapy is often followed by chemotherapy and long-term therapies, which often take five to ten years. You can't really be given the "all-clear" before that. Talking about “victory over cancer” in view of this situation isn't in line with reality.

Headlines like “Battle against cancer lost” can be just as offensive. This wording makes some people feel bad or guilty. Many people face feelings of guilt when they get cancer anyway. Most people with cancer believe they are partly to blame for getting the disease. But there is no reason to feel this way. Whether someone gets cancer or not is mainly a matter of luck.

Headlines about a lost battle suggest that it is up to me whether I stay healthy or get ill again, whether I win or lose. Particularly if the disease progresses, they trigger thoughts like “Have I not fought hard enough, have I made the wrong decisions, have I fought the wrong battle? Have I lost and is that my fault?” These thoughts are an additional burden, put people under pressure, and waste a lot of energy that could be put to better use.

The image of a battle can also keep men and women with cancer from thinking about what is really happening to them. You may reach a point where it becomes more about accepting the fact that nobody lives forever. People who think that they have to keep on fighting cannot let natural processes take their course, cannot trust the people accompanying them or the palliative interventions. People who think they must fight also start futile battles and end up paying a high price for it.

Struggle to find the best way

We, who have the disease, cannot fight against cancer. That is up to medicine. But within the limits of our possibilities, we can still fight –  to reach the therapy goal, to use our energy wisely, for our own values. People who “only” fight against cancer can hardly reach this goal, and their quality of life suffers as a result.

As someone who has cancer, I struggle to find a way to cope with my new appearance, with limitations and losses and with less energy. I use my remaining strength to ponder about the meaning of life, for what is valuable to me and what has become more valuable because of the illness. All this takes place in my soul. And I cannot wage war on my soul. I can't win or lose there.

I prefer a different image to the war scenario. After I was diagnosed with cancer, I imagined being in a dark forest with a wild beast. I'm overcome by fear and I'm not sure what will happen. What will the wild beast do, what will I do? Am I even capable of overcoming my state of being petrified? I dare to take a few careful steps, staying at a respectful distance to the beast, which I cannot see clearly.

The longer nothing happens, the less fear I have, the closer I can get to the beast, and look at it more closely. I'm always watching it, I'm slowly recognizing its outlines, I'm getting used to the look of it and starting to understand it better. We are getting so close to each other that I dare to touch the beast. I hardly even see the threat it posed at first. Touching it is nothing terrible, nothing frightening anymore. I have come to terms with the wild beast; it seems that we can both live in the forest. By now, the beast has become part of my life. I can sometimes even stroke it and it feels good.

I can live with the wild beast. The beast has let me discover facets of myself that I didn't know before and that I wouldn’t have found without it.


Acknowledgement

Many of our health topics include real-life stories in which men and women describe their experiences with a particular medical condition. The people we interview are real, but their names are changed.

To expand the scope of the personal stories and views presented on informedhealth.org a little, we asked Hilde Schulte –  the honorary chairwoman of a German self-help group for women who have had cancer (Frauenselbsthilfe nach Krebs) – to answer the following question: “How do you feel when the media reports that someone has ‘beaten’ cancer or ‘lost their battle’ with cancer?” Our many thanks for the thought-provoking answer she gave us.