Results
The focus groups used an open-ended unstructured protocol. However, all discussions included questions about the perception of changes, including physical changes, sexuality, oneself or one’s spouse.
Physical Changes
Both husbands and wives readily answered questions about the occurrence of physical changes after prostate cancer treatment. Most men were forthcoming with descriptions of physical changes such as fatigue, hair loss, hot flashes, and weight gain. In their focus groups wives confirmed their husbands’ experience of these changes. Wives learned about these complications in 2 ways. Most men told their wives about their changed physical conditions. Some men, however, were silent about their physical well-being. In these cases, wives relied on nonverbal communication and close observation of their husbands. One man said, “I’ve slowed quite a bit. My wife, she worries about me more than I do myself. She watches every move I make when I’m around there. I don’t know why, but she keeps her eyes on me.”
Coping with Physical Changes
There was variation in couples’ communication. It ranged from sharing information to dealing with feelings in complete isolation. Two men whose wives were not interviewed had not told their wives they have prostate cancer. They reasoned that their wives would not be able to handle the information because they would associate cancer with death. In the Table 1 we present responses from one couple that express how both spouses noticed and had feelings about physical changes but avoided talking with each other about them.
Wives’ perspectives on couple communication were that verbal exchanges about feelings do not generally occur, but the reasons for this vary. Wives admit to not asking based on a fear they might stir things up in their husbands or create problems that were nonexistent for their husbands. Other wives expected their husbands to hide feelings, thereby admitting that their mental well-being is interrelated. For example, one wife said, “I don’t know if he worries about his death because if he would get down, I would get down. So he hides it very well.” Others stated that men refuse to talk about their feelings even when they are asked about their well-being. Despite this emphasis that the men were the ones who were not communicating, other women revealed that they were participants, by hiding their emotions or avoiding questions to protect their husbands.
The men’s statements indicated that they had a hard time adjusting to their physical changes and that they were not comfortable disclosing their feelings about these changes. They expressed feelings of embarrassment and shame about their physical changes. Also, the men stated their fears and how they withhold them from their wives. One man said:
The main thing is that you worry. A normal pain that you normally wouldn’t pay any attention to before, now you say, well maybe the cancer has spread to there…. My wife worries about that if I have a little ache or pain. I don’t normally tell her, because if I do, she goes crazy. So you have to be very careful with your wife, too.
Men generally pull themselves together. Reasons for the men’s reticence in showing emotions were either that they were protecting others, such as their wife and children, or that it was self-protection from the reactions of their wives.
The wives were more verbal about the despair they felt. Most of the men downplayed the implications of the cancer diagnosis or cancer treatment on their lives. They made statements such as “nothing has changed” and “life goes on as before.” This might partially explain the couples’ lack of communication about feelings and fears about cancer and how it alters men’s lives. Couples in general, but particularly the men, wanted to get their lives back together and move beyond prostate cancer. This desire may be so strong that it undercut the couples’ communication about fears and other feelings. One outcome of avoiding conversations is uncertainty about each other’s feelings or thoughts. This became most apparent when one of the wives questioned the interviewer about what their husbands shared in their interviews, wanting the interviewer to indicate what is burdensome to their husbands. She reasoned that knowing this would help them to support their husbands better.
Although not communicating openly, many of the couples used jokes and teasing to make each other comfortable. At the core of the jokes were important emotions, such as fears, that they seemed not to dare voice otherwise. Although the jokes transmitted some feelings or fears, they did not facilitate couple communication. The wives told jokes to build up their husbands’ morale, while the men used jokes to couch their fears. For example, one man indirectly revealed his fear of dying. His wife stated, “He is always asking me to lose weight, and he’ll say, ‘Now [wife’s name] you’re going to have a hard time getting another husband, if you keep putting that weight on.’”