Psycho-oncologist Till Johannes Bugaj knows what a cancer diagnosis means for a family. He has tips for parents and explains why he is critical of terms like “fighting”.
Dr. BugayAs a psycho-oncologist, you often support people who have just found out that they have cancer. How do most people react to such news?
In psycho-oncology, there is this famous sentence by the sociologist Nikolaus Gerdes: “A cancer diagnosis means an involuntary fall from normal reality.” Many sufferers feel as if the ground has been torn from under their feet. A fall into the void, a feeling of mortal danger. Nevertheless, I have to say: everyone “falls” in their own way, every person is different. Most are shocked, others react angrily, irritated, anxious or depressed.
What determines whether someone is more likely to resign or become a fighter?
Those who were socially isolated before the diagnosis may be more stressed. Stable, appreciative relationships with other people are an important resilience factor. Patients who are looking after children and their aging parents at the same time are also under a lot of stress. Many cancer patients are fed up with hearing that they have to “fight”. It puts them under pressure when everyone around them expects them to be strong. Unfortunately, there are an incredible number of war metaphors in oncology.
You mean headlines like “Princess Kate has defeated cancer”?
Exactly, and cancer is the enemy in your own body that you have to fight. But some patients are tired of fighting or don’t trust themselves to do so. They don’t have to fight and are allowed to show weakness.
Princess Kate’s children, who have just completed chemotherapy, are six, nine and eleven years old. What additional concerns do parents have when they are diagnosed with cancer?
Parents want to protect their children as best they can from the evils of this world and give them a sheltered childhood. If they get cancer, their worries quickly turn to their children. The thought of not seeing them grow up is particularly painful.
What does a Cancer diagnosis for your partner?
In psycho-oncology, we do a lot of work with relatives and often hold couples’ discussions. Sometimes the fear that the tumor will continue to grow and that the whole thing will not end well is greater for relatives than for the patient. Cancer shakes up the whole environment and is a family matter.
Why is that? A heart disease can also end dramatically…
That’s true, but cancer has a particularly strong impact on everyday family life. The sick person is suddenly faced with many hospital stays, chemotherapy or surgery, as well as physical changes such as hair loss. This has an impact on the family. They have to reorganize processes and distribute tasks differently.
How do you explain to children that the Mother or the father has cancer?
Children have a keen sense of smell and notice when their parents are anxious or desperate. If no one speaks to them, they find their own, often unpleasant, ways of dealing with the situation. Some develop the fantasy that it is their fault that their daddy is sad. Younger children may develop sleeping problems, suddenly start wetting themselves again or stop eating properly. Older children develop difficulties at school, become aggressive or withdraw.
So you should tell them the truth?
Absolutely, otherwise massive stress can arise. Imagine the child finds out from others that his mother has cancer, for example in kindergarten. That would be very bad because it would damage the trust in the parents. It is understandable that you want to protect children, but we recommend talking to them. Anyone who is overwhelmed by this can use counseling services, for example in the psycho-oncology departments of hospitals or cancer counseling centers. In Heidelberg, we have the project Anker especially for children of parents with cancer.
Isn’t telling the truth too much for the little ones?
Many people have this worry, and it is indeed painful to talk to children about something like this. But such conversations always convey the message: “You are so important to me that I want to talk to you about it. And I trust you to talk to me about it.”
A small child cannot do much with cancer…
A simpler explanation is enough. For example: “Mommy is sick”, “she’s in pain” or “she has to go to the hospital now”. From kindergarten onwards, we recommend naming things more specifically, for example saying that it is cancer. There are wonderful picture books on this. It is also important to point out to children that the disease is not contagious. Otherwise, a small child will think that they could also become ill through contact with their mother.
Is there anything else that is important in such a conversation?
It is not necessary to say everything at once, parents should not put too much pressure on themselves. However, children need to know that the illness is not their fault. Sometimes parents say things like: “I’ll get really sick if you keep making noise.” Children remember this and, if they are ill, may interpret it retrospectively – namely that they are now to blame for the cancer. It is important to relieve them of this burden.
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When is the best time to tell them?
There is no perfect time. It is more important to take the first step and calmly answer the child’s questions. If you as a parent do not have an answer yourself, you can admit it openly. That is better than making something up.
How do you take away your children’s fears when you yourself are afraid of the diagnosis? How do you manage to stay strong for your children?
You don’t have to be strong when you tell your children that you have cancer. Parents are allowed to show weakness and shouldn’t hold back their tears at all costs. Otherwise the children will think they have to be strong too and that cancer isn’t something to cry about. But it’s sad that mom has cancer. When adults cry, they convey to the children that it’s okay to show feelings. The tears are then like an invitation for the children to express their own emotions.
As a psycho-oncologist, do you take over the conversations with the children?
No, it is very important that the parents do it themselves. Because it shows trust. But of course parents can get advice from experts beforehand. Colleagues like Ankker, who specialize in working with children, provide a lot of good ideas. Sometimes it can be helpful if children get the feeling that they can do something for their parents within the scope of their abilities during this difficult time. A seven-year-old, for example, could set the table on days when their mother has to go to chemotherapy in the morning. Being able to act and contribute something sometimes helps against fear.
Can there be room for joy?
Absolutely. Children of sick parents need islands of normality, especially in this extremely exceptional situation, and are allowed to continue playing. Some get the feeling that they are no longer allowed to laugh because their dad has cancer. That is bad, because joy is a resource against fear. We also strongly recommend that children be allowed to talk to others about the illness. It is very stressful for a child to have to keep secrets. That is why they should be allowed to talk about it with their grandmother or best friend.
Can you prepare children if there is no cure and mom dies of cancer?
That is of course even more difficult. But as I said: children have fine antennae. If they do not find out the truth, it will still weigh on them. Here too, it is important to package the message in an age-appropriate manner and to say it despite all inhibitions: The sick mother is going to die. The child has a right to know that.
Can family cohesion grow as a result of cancer?
I find the idea of viewing cancer primarily as an opportunity or an important experience rather difficult, because every patient would prefer not to have this disease. But a cancer diagnosis does not have to break up a family.