We can deal with the fear better now

Photo of a couple (Deam Mitchell / iStock / Thinkstock)

Hans, 56 years old, partner of a woman who has breast cancer 

“I stood by my wife and saw how the treatment was making her weaker. That was the hardest part for me because I felt like I couldn’t do anything.”

In 2004 my wife was diagnosed with breast cancer. When we heard the diagnosis, a whole lot came crashing down on us. At first we didn’t really have the time to come to grips with it. My wife was reassured again and again that there were good treatment options and that things would turn out fine.

After a certain amount of time the treatment did seem to end successfully. At that point we thought: now we’re going to start living again. And that’s what we did. We travelled a lot and did things that we had always put off a bit before. We still led a normal life, just a little more intensely than we had before.

In 2009 the cancer returned: recurrence was diagnosed. This news really pulled the rug from under our feet. After the first treatment I had been really hopeful, and now this. For the first time I thought I might be on my own someday.

They wanted us to decide at once

There were a lot of things I didn’t like at the hospital. The doctors were only interested in the medical treatment. They were unaware of the psychological burden the new diagnosis was causing.

I stood by my wife and saw how the treatment was making her weaker. That was the hardest part for me because I felt like I couldn’t do anything.

At the hospital the doctors told us that one breast would have to be amputated because the cancerous tissue was especially malignant. During this same conversation they suggested already making preparations for breast reconstruction during the operation. They wanted us to decide at once, since the surgery would then require an extra step to insert a preliminary tissue expander.

I asked what would happen if breast reconstruction were done at a later time. The doctors told me that she would need another operation. That seemed like a good reason for doing immediate breast reconstruction, and so I advised my wife to go ahead and do it.

I blamed myself

So she decided to do it despite having doubts. Afterwards she asked herself why she had even agreed to breast reconstruction in the first place, especially since it really didn’t turn out that well. I blamed myself for telling her to do it instead of waiting for her to get over the loss of her breast. Before she had really processed that, the next step had already been planned. After experiencing this, I think that it’s really not even possible to make such a big decision in that kind of situation.

My feelings of helplessness together with the silent guilt I felt made me fall into a deep dark hole. I would have sunk into depression if I hadn’t gotten help from a psychologist. She really helped me to see not only the disease, but also our relationship and myself. That was very important. It made it possible for me to cope with my wife’s illness in a completely new way. And we've been able to lead a relatively normal life as a result, even now.

One thing the psychologist said really stuck with me: “Your wife has cancer, but that doesn’t mean she has lost her autonomy.” This was a crucial statement for me, because I can now accept the fact that it is not me who should make decisions, but my wife. That makes it much easier for me. In the beginning I sometimes didn’t realize what she wanted for herself. Then I pushed her into making decisions that I felt guilty about later on. She also pointed out to me then that I would have to do something – otherwise our relationship would fall apart. All at once our previously happy marriage of 30 years together was on the rocks.

The talks with the psychologist were also very positive for me because I could unload my misery somewhere else. I no longer had the feeling that I was bothering my wife with my fears and worries. I think that I am now in a much better position to help my wife. It’s the same with our relationship. We can deal with the fear better now.

I wanted to make all of the decisions for her

Each follow-up exam is accompanied by the worry that the disease might return. My wife and I both think that the cancer is dormant at the moment, but we hope that it never wakes up.

You could see that my wife was tired and exhausted from the chemotherapy. I thought I had to protect her because she was very sick and weak, and that she wouldn’t be able to make it on her own. I wanted to make all of the decisions for her. But that wasn’t necessary. She just didn‘t have the heart to stop me.

We talk about it now and I know when she can do things on her own and when I need to help her. That’s a great relief for me. Now I stand by her by being with her and listening to her. I still take care of some formalities and paperwork because I have more experience with those kinds of things. But it is most important to me that I still see in her the woman I love. Then I can take her in my arms and give her comfort and strength. I couldn’t do that if I only thought of her as a sick person.

My therapist taught me to take some time off and to do something for myself. For example, I’m very active in a self-help group.

You’re finally starting to treat me like a normal person again

Another problem I had was that my partner no longer thought she was attractive. I could tell her as many times as I wanted that it didn’t bother me that she had only one breast and that her hair had fallen out as a result of treatment. I still didn’t get through to her.

My wife is easily agitated when she is afraid of something. Even if she treated me unfairly I didn’t react, even though it made me feel bad. Now I realize that she only acts that way because she's scared. I’ve started to defend myself if she acts very unfairly, and she actually doesn't mind me doing so. She just says: “You’re finally starting to treat me like a normal person again.”

The disease has changed our relationship. We have always been in love with each other, but now it’s much more intense.

Our sex life is working again too. Back then it was a big problem. My wife didn’t feel like a woman because of all the physical changes and the side effects of the chemotherapy. But that’s not how I felt about it. To me she is still a very beautiful woman, even with one breast, and that will always be the case. Back then our relationship crisis and the chemotherapy made any sexuality between us impossible. It had less to do with my wife's physical changes.

Work is less important to me now

Whenever possible, we go to the check-ups together. The doctors sometimes use complicated language so if one of us isn’t able to take everything in for a moment, the other one is there to get the information. We can talk about it together afterwards.

Nowadays I can talk to other people about what moves me and what I’m feeling too. I couldn’t do that before, and always tried to deal with everything myself. When I felt miserable on the inside, I buried my head in my work. At some point even work no longer helped to distract me. Then I thought about how bad things were for my wife and asked myself the typical question: “Why did this have to happen to us?” I dealt with all of that on my own because I didn’t want to burden her while she was in this dire situation. And then, together with help from the psychologist, we started talking about the needs each of us has, even while she was ill.

Work is less important to me now. I have to keep working because I still need to earn a living. Although the self-help group offers me a whole lot, what is most important to me is the deep intimacy that I have with my wife now. That we talk a lot with each other, that we do things together, but that I can also go out on my own. One thing that helped me a lot through this difficult time was writing. I poured out my soul by writing down my worries and thoughts. That did me good.

I think it’s important to talk a lot with each other in a situation like this, especially about your troubles, fears and needs. It is important to get help and not to struggle with the disease alone. It’s already hard enough as it is, and the disease will always be there. We have been trying to live with the cancer and make the most of things. It may sound a bit theoretical, but if you’ve always wanted to go on a nice holiday, for instance, you should just go for it.

Acknowledgement

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.