When Mary was diagnosed, Dave reached out to a female colleague who went through breast cancer to get advice on what her husband did for her.
He says the following proved to be most helpful for Mary and himself.
Be a team
While men can get breast cancer, the percentage is small.
In fact, the American Cancer Society states that breast cancer is about 100 times less common among white men than among white women and about 70 times less common among black men than black women.
“For the most part, this is not something you can personally experience. [When men] do get breast cancer it’s still not the same because men have a chest, [but] they don’t really have breasts and it’s not a big part of their life. So it’s difficult to put yourself in [your wife’s] place because this is not something that can happen to you,” says Dave.
However, he feels acting as Mary’s teammate was a great way to show support.
“I left the decisions to her and I was more in support mode but [would make it a point] to say ‘we have to go through the treatment.’ Always ‘we’ instead of ‘you’,” he says.
Advocate and organize
Dave took on the role of Mary’s advocate as soon as she was diagnosed.
“Not so much that you’re going in [doctor’s offices] and arguing, but most of the time I would go in there and just listen and be the information gatherer because when you’re the patient, your mind is going a whole lot of places,” he explains.
Dave says Mary developed “chemo brain” and had trouble remembering what was said to her.
“So I would try to listen and remember all that was said and also remind her to bring up things she mentioned she wanted to talk with [doctors] about.”
Mary also had a hard time keeping track of medication, so Dave laid out all her pills on the counter in order of how she should take them.
“When you are taking as intense of a treatment as Mary was, you have to take certain pills on certain days and certain times, including an anti-nausea pill that she had to take at 3 a.m., and I’d get up to give to her,” says Dave.
“If you mess it up, the side effects will be worse so you really have to stay on top of the pills,” he adds.
He also wrote out all her doctor’s appointments on a calendar. “I was almost like an executive secretary,” he says.
Provide emotional support
When the physical demands of going through chemotherapy took a toll on Mary, Dave says providing emotional support to her was crucial.
“It’s really hard to go through chemo… when you have really bad side effects like my wife did. Just listen and let them tell you all about how bad they are feeling and all the symptoms they’re having and lightly encourage them by saying ‘I know this is really tough, but I know you can do this and get through this,’” he explains.
Staying strong and steady was Dave’s goal.
“The person going through treatment is in a very vulnerable position. You need to be strong and steady for them. Your spouse really needs to count on you even at their very low points. When they’re not sure they can get through two more months of chemo you have to be strong and comforting,” he says.
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Keep things normal
Despite the situation, Dave made it a priority to try to keep their daily life as familiar as possible.
“[Try] to have some pieces of your normal back. Even if it’s just watching TV shows that you like,” he says.
“Try not to make your life all about chemo, though it can be hard when your wife is going through chemo and [she] is having such strong side effects as Mary did,” says Dave.
Seek out specific help
When a partner becomes ill, responsibilities that you shared fall on you, including grocery shopping, doing laundry, washing dishes, and more.
“You just have to stay organized,” Dave advises.
One way he did this was by asking for help. He lined up people to help on the days he had to go into work or on other days he couldn’t be home.
“We have two grown daughters and one of Mary’s sisters who live in the area who I tapped into for help. But I kept that circle of people pretty small,” says Dave.
“There are a couple of friends who I would ask to drive her to a doctor’s appointment… or pick up a medication… but I was a pretty strict gatekeeper because I’d only ask people I trust and I’d say to them after the appointment, ‘I need you to take her home. Don’t take her to lunch or go to a park and sit and talk, she needs to get home and sleep — even if she wants to talk to you. Can I trust you do that for me?’”
Dave also screened visitors.
“I’d tell people not to show up at our house unannounced and that ‘we appreciate the thought but my wife is generally not up for visitors. I don’t want to be at the door and telling you you can’t come in,’” says Dave. “My wife made it clear that she didn’t want to join a support group or talk about [what she was going through] with a lot of people.”
Take care of yourself
Since Mary was diagnosed, Dave started taking care of himself more than ever.
“I know you can’t take care of someone else if you’re not taking care of yourself. I made sure I was getting enough sleep, and that I was exercising, either going to the gym or walking both in the morning and evening. And I ate well,” says Dave.
“Mary’s sister actually paid to have food delivered to our house twice a week and it was for two people, but my wife couldn’t eat any of it so I would stretch it out over 4 days.”
Dave also didn’t want to get sick and pass it onto Mary because her immune system was weak.
Talk with other partners
The one regret Dave does have is that he didn’t talk with other men whose wives went through breast cancer.
“Over the last 20 or 30 years, there were several women we know who had breast cancer. I had minimal conversation with [their husbands] over the years, but mostly about how [their wives were] doing. I really hadn’t talked too much in depth about how they were doing,” says Dave. “Looking back, I wish I would have.”
— Update: 11-03-2023 — cohaitungchi.com found an additional article Coming to Grips with Breast Cancer: The Spouse’s Experience with His Wife’s First Six Months from the website www.ncbi.nlm.nih.gov for the keyword my wife has breast cancer.
INTRODUCTION
In 2009, an estimated 192,280 women will be diagnosed with invasive breast cancer and an additional 62,280 women had in situ disease (American Cancer Society, 2009). Although the magnitude of women affected is alarming, equally significant are the ramifications of the illness for the spouse. Breast cancer is a couple’s illness, not a disease of the wife’s breast (Lewis, Fletcher, Cochrane, & Fann, 2008).
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Distress (anxiety, depressed mood, physical symptoms) in spouses of women with early stage breast cancer has been demonstrated in studies using standardized questionnaires as well as interviews in the U.S. and other countries. Significantly elevated levels of distress are known to occur up to 3 years post diagnosis and in some studies spousal distress exceeds that of the diagnosed woman (Baider, Ever-Hadani, Goldzweig, Wygoda, & Peretz, 2003; Foy & Rose, 2001; Langer, Abrams, & Syrjala, 2003).
In the first known longitudinal study, Northouse’s team documented that the spouse’s level of distress was similar to the level of morbidity in their wives [Brief Symptom Inventory–BSI] and remained higher than normal levels at 3 days, 30 days, and 18 months (Northouse & Swain, 1987). In another seminal study of spouses whose wives had undergone a mastectomy, Wellisch’s team reported that spouses experienced disruptions in their sleep, eating, and ability to work that they attributed to their wife’s breast cancer (Wellisch, Jamison, & Pasnau, 1978).
Spouses are known to have concerns about their wife’s fatigue and other debilitating symptoms; sexual intimacy; the illness’ unpredictable nature, including fear of recurrence and uncertainty of outcomes; and personal and household disruptions (Ben-Zur, Gilbar, & Lev, 2001; Chekryn, 1984; Hilton, 1993; Hilton 1993a; Hilton, 1994; Hilton, 1994b; Hilton, Crawford, & Tarko, 2000; Hoskins, 1995; Lethborg, Kissane, & Burns, 2003; Lewis, Fletcher, et al., 2008; Longman, Braden, & Mishel, 1996; Longman, Braden, & Mishel, 1997; Mast, 1998; Nelson, 1996; Northouse, 1992; Northouse, 1994; Northouse, 1995; Northouse, 1996; Northouse & Swain, 1987; Skerrett, 2003; B. L. Walker, 1997; Walker & Eremin, 1996; Wellisch, et al., 1978).
There are six qualitative studies of spouses’ reported concerns about their wife’s breast cancer but the majority of these studies involve spouses of women diagnosed 1.5-2.5 years prior or are limited to very specific experiences, e.g., the spouse’s response to the surgical scar (Hilton, et al., 2000; Lethborg, et al., 2003; Northouse, 1989; Sabo, Brown, & Smith, 1986; Samms, 1999; Zahlis & Shands, 1991). When we turn to studies relevant to the initial diagnostic and treatment period, only 3 interview studies included spouses of wives diagnosed an average of 13 or fewer months (Lethborg, et al.; Northouse; Zahlis & Shands). This means that we have a very limited understanding of spouses’ experience during the initial period of diagnosis and treatment. A summary of results from these 3 qualitative studies follows (Table 1).
Spouses described feelings of shock and disbelief (Lethborg, et al., 2003; Zahlis & Shands, 1991); helplessness (Lethborg, et al.); fear and sadness (Lethborg, et al.; Zahlis & Shands). They reported worrying about the extent of disease (Lethborg, et al.), cancer recurrence (Northouse, 1989; Zahlis & Shands), what the future might bring (Lethborg, et al.; Zahlis & Shands) and their wives’ survival (Northouse; Zahlis & Shands). A few spouses reported feeling guilty about not being able to do more to help their wives (Zahlis & Shands) or were self-critical about their own inability to support her (Zahlis & Shands). In addition, to describing their emotional response to the breast cancer, some described a physical response as well (Lethborg, et al.; Zahlis & Shands).
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Spouses talked about their difficulty in waiting for test results and waiting for surgery to be over (Northouse, 1989; Zahlis & Shands, 1991). They found it hard to watch their wives struggle or be in distress (Lethborg, et al., 2003; Zahlis & Shands). Spouses reported a range of reactions when they viewed the surgical site. For some, it was “no big deal.” For others the physical disfigurement was shocking (Northouse; Zahlis & Shands). Some men felt their own feelings went unacknowledged by their wives and others (Lethborg, et al). Men felt their wives believed they were getting on with their life – that the illness had not impacted them. They felt that their own distress went unrecognized.
Men reported the breast cancer impacted their relationship with their wives (Zahlis & Shands, 1991). For some, the breast cancer magnified already existing problems (Zahlis & Shands). Some worried that their wives would not be able to accept the breast loss (Northouse, 1989; Zahlis & Shands).
Men talked about what they did to support their wives. On a practical level, many said they changed their work schedules (Northouse, 1989), did more child care (Northouse; Zahlis & Shands, 1991) and assumed management of the household (Northouse; Zahlis & Shands). They worked to meet their wives’ emotional needs (Lethborg, et al., 2003) by being a sounding board, consoling her (Zahlis & Shands), assuring her that changes to her body had not altered their relationship, and by not allowing her to feel sorry for herself (Lethborg, et al.). They also talked about taking care of her physically and about needing to be strong for her (Zahlis & Shands).
Some men felt supported by others (Northouse, 1989) while others talked about feeling isolated and having insufficient support (Lethborg, et al., 2003). A few men talked about not knowing how to handle people who were non-supportive (Zahlis & Shands, 1991).
Across all three studies, spouses described what they did to cope with the breast cancer, including devising strategies, avoiding their own feelings and avoiding thinking about it (Lethborg, et al., 2003; Zahlis & Shands, 1991) and keeping busy (Zahlis & Shands). They worked to stay focused on the positive (Lethborg, et al.; Zahlis & Shands), drew from their religious beliefs (Northouse, 1989), and trusted in God (Zahlis & Shands). For some, their wives’ positive attitude helped them (Northouse). Spouses talked about taking control (Lethborg, et al.) by becoming educated about breast cancer (Northouse; Zahlis & Shands) and by helping make decisions about surgery and treatment (Zahlis & Shands). Spouses described taking things day by day and trying to make the most out of life (Lethborg, et al.).
These three studies provide an important beginning description of the spouse’s early experience with his wife’s recently diagnosed breast cancer. But only one of the studies included spouses who were interviewed during the initial months of diagnosis and treatment (Northouse, 1989). The other two studies relied on spouses’ retrospective recall of the early days of the experience (Lethborg, et al., 2003; Zahlis & Shands, 1991). What is still needed is a study to examine spouses’ experience during the acute initial period of diagnosis and treatment of their wives’ breast cancer. The purpose of the current study is to more fully describe, in spouses’ own words, their experience with their wives’ newly diagnosed early stage breast cancer, focusing explicitly on the first six months of diagnosis and treatment.
