Susanne Reinker was 44 years old when she was diagnosed with breast cancer. The disease is treated and the Düsseldorf author is fit again. But one thought won’t let her go: the way we as a society talk about cancer is wrong. Susanne Reinker has decided to change it.
They were 44 years old when they were diagnosed with breast cancer. How did you fare with the diagnosis?
Susanne Reinker: The diagnosis came as a shock to me – like to everyone else. Although I was prepared for it because my mother already had breast cancer. In February 2007 I had just written my bestseller “Revenge on the Boss”. Getting this diagnosis just five months later, at just 44 years old, pretty much brought me back to earth. It showed me that it can happen to anyone, no matter what age. Nothing protects us from cancer – not the money we earn, not the healthy diet, not private happiness – it can just happen. When it hits you, probably the worst thing you can do is ask yourself, “Why me and why now?” Because that doesn’t help, it only costs the strength you need to get through the treatment.
But how can those who are ill deal with it when the word cancer suddenly makes the world stand still and relatives see them with different eyes?
This is really one of the more difficult exercises. The fact is, as soon as you report this diagnosis and come out as a cancer patient, you automatically get a stamp on your forehead. And it says: “You already have one foot in the grave!” That’s terrible. It’s because in the language there’s still that connection between cancer and struggle. Automatically, when you hear the word cancer, it means: “You have to fight now!”, “It’s a fight of life and death!” But we know from the obituaries – after a long, difficult, short fight – that this fight can only end for us with the final defeat.
If the word chemo is also mentioned, the horror in people’s heads becomes even greater. We cancer patients of all people have to speak up to others when we see their fear in their eyes – to protect ourselves. The others mean well by us, they love us, but they have this concentrated horror in their heads. So we have to say – also to ourselves: “Wait a minute!”. There isn’t that one cancer that will bring and reliably down the pit. There are many different types of cancer, in different parts of the body, with different growth rates, operability and with different treatment options. It is best for patients to report their diagnosis and their individual prognosis. This helps our loved ones and also us to get out of the panic and towards a certain pragmatism.
What could we replace the battle metaphor with?
In my book and also privately, I do not speak of struggle, but of resistance. Resistance is something withholding. When it comes to resistance, we have positive things in mind: Gandhi, Gorleben. Resistance is something that can fluctuate depending on your daily form. Resistance, unlike this battle metaphor, does not boil down to this final defeat. It can drag on for years and not even let a recurrence break it down.
Why is it so important that we talk about cancer differently?
Language shapes our perception and our perception shapes our behavior. We can currently see from gender language that everyone is talking about it, whether positive or negative. As a society, we dare to try to draw attention to the gender problem through our language. I wish from the bottom of my heart that such an attempt for society as a whole would also be made with the words cancer and resistance. It’s a dream of mine that Thomas Gottschalk and Barbara Schöneberger will appear together as sparring partners on television in front of an audience. One represents the concept of struggle and the other represents the concept of resistance. I know this is a dream that cannot be fulfilled, but that would put the discussion where it belongs – in public. I don’t want to give up the hope that we’ll get this cancer out of this corner of horror at some point, I’m still too young for that.
According to estimates by the Robert Koch Institute, around 66,800 women are diagnosed with breast cancer every year. For women, it is the most common type of cancer. Young people are also increasingly affected. The German Cancer Society speaks of over 18,000 women dying of breast cancer every year. Men can also get breast cancer, with them there are around 770 new cases each year. The breast cancer month of October draws attention to the situation of patients.
We usually talk about the weather or bitch about work. Such topics quickly seem banal when a loved one has cancer and we fall silent.
If you, as an outsider, fear that you will not find the right topic, you can certainly address it. Just ask which topic fits. That’s always better than going under completely because of sheer fear of contact. At this point, cancer patients must also open their mouths. It’s especially difficult for women to say clearly what they want and what they don’t want – and to demand their needs because they have learned to hold back and take care of others. Using the word “no” or “no thanks”, “no not now” or “let’s go” without a guilty conscience is something we cancer patients have to learn. In the end, however, it makes the situation better for both sides if it is clear which topic the patient would like to talk about today and which one not.
There is also a communication strategy that I developed during my illness. In the beginning, “cancer” should allow five to ten minutes to talk about the disease – how we are doing right now, where we are with the treatment – because everyone wants to know that. A change of subject to normal things is relaxing for everyone and is good for everyone. And just before you part, you often feel the need to talk briefly about the cancer again.
Her basic advice for dealing better with cancer patients?
The first and most important point is that as “cancers”, we give extenuating circumstances and a bit of time to relatives, friends and also ourselves. We need this time to learn how to weave this crisis together.
How useful is advice from friends and relatives?
We “cancers” are showered with kindly meant advice, while the advisers overlook the fact that we cannot or do not want to follow every piece of advice. It overwhelms because it’s too much. I advise cancer patients to think very pragmatically about what help they can use. But we “cancers” are often too proud, ashamed or do not dare to ask for help or we do not think about it because we are still in shock. Family and friends who want to do more than just give advice or let go of clichés should always ask how they can help. Important: Make concrete suggestions that fit the life situation of the sick person. For example, relatives can ask: Do you want me to look after your children part-time? Should I check the health insurance statements? Or should I support you financially? Can I help you with medical research?
Cancer is more than ever – especially now due to inflation – a really bitter pill, also financially. Many “cancers” no longer have enough money to pay the co-payments from the health insurance company or to buy the dietary supplements they actually need.
We are also often completely overwhelmed from the medical side: we don’t understand the doctors, we don’t dare to ask questions or we panic too much, we want to talk to Dr. Google, but are overwhelmed by the information there. We need accompaniment during the doctor’s talks. There are so many things in which the environment can switch from pure helplessness babble to very pragmatic offers of help.
What are the absolute no-gos when dealing with sick people?
The absolute no-go for me is to dive. Either I don’t hear from the person anymore from now on or they let the relationship fall asleep. Friends who disappear from our radar in this life situation hurt us terribly. And the last thing we need in this situation is unnecessary additional psychological stress. Friends should stay on the ball and accompany us all the time. Even if that takes a good two years or more.
Any form of prohibitions and commandments is inappropriate. Esoteric perspectives are also bad for cancer patients. The esotericists believe that cancer begins in the head. “Mind makes reality” – that sounds so logical. Just think positively and the disease will go away. But if I don’t manage to think differently or live differently, then it’s more or less obvious that I’ll get cancer again if I don’t change the way I think and act. And that’s the ultimate horror for us “cancers”.
Anyone who is sick belongs in bed. This image stretches in many minds. What does it mean for cancer patients?
We think a lot in clichés when it comes to sick and healthy. Especially women with cancer in the acute phase in the hospital are so affected by what those around them say that they try their best to downplay their own fear just to cheer up the visitors at their bedside. The effect: relatives have the feeling that it is not so bad and the patient is extremely exhausted. The truth about cancer is that how we feel and how strong we are depends very much on how we are on the day.
After the end of chemotherapy and radiotherapy, things are not at all what our loved ones might imagine. We are expected to be cheerful and spit on our hands again. It’s not like that. We still haven’t been able to perform at our best for a long time, neither in the job nor in terms of the mood. Our environment would like everything to go “back to normal” again, but that is often wishful thinking. No one who hasn’t had it themselves can judge how exhausting cancer is. The bottom line is, folks, if you’re dealing with a cancer patient, be prepared to learn a lot. Our whole society simply has to learn how to deal with cancer, because the fact is: in Germany, the risk of cancer in life is around 49 percent for men and 43 percent for women. That’s almost half of the population.
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