Half the Battle

Participants

A purposeful sampling method was employed to include the experiences of 10 women with experiences of either breast or gynecologic cancer that attended the support groups provided by the organization. Prior to conducting interviews, I was invited to attend a support group meeting for women with any breast cancer experience. This gave me the opportunity to introduce myself and explain my project to the women. In addition to making connections with participants for my study, I was provided with a better understanding of the cancer experience and amended my interview guide accordingly. Every woman present offered her contact information for an interview. This project would not have been possible without the help of Sharon Nelson at the Breast Health Project and the women who were so kindly willing to share their stories with me.

Sample Characteristics

Of the women who attended support groups, eight identified themselves as “White,” one self-identified as “Latina,” and one self-identified as “American Indian/White.” Women’s ages ranged from 43 to 69. All respondents reported having had at least some college. Two of the respondents were married. Four respondents lived alone. The women’s cancer experiences varied. Some participants were newly diagnosed, some were survivors who had received a lumpectomy or a mastectomy, and two participants were diagnosed with advanced disease (Stage IV). One participant had ovarian cancer. In addition to variations in prognosis, there were differences in treatment plans and the effects of treatments.

Data Collection and Analysis

Ten interviews were conducted with women who attended support groups between January and March of 2010. Participants were given a written consent form that outlined potential risks. They were told that they could stop the interview at any point and did not have to answer any questions they might find uncomfortable. Prior to data collection, the university institutional review board approved the study recruitment process and interview protocol.

Interview questions were developed from researching mostly qualitative studies on the cancer experience and social support. The semi-structured interview guide consisted of 13 questions and was constructed to capture narratives on the topics of social support, the illness experience, coping strategies, conceptualizations of health and illness, and managing illness. The interview guide facilitated my goal to establish a broader picture of the whole and allowed the women to tell their stories at their own pace, in their own ways, and within their own time frames.

Most interviews took place in a private office at the Breast Health Project. The office was tiny with a wooden desk, desk chair, wooden chair, and a cork board decorated with sticky notes. All interviews were conducted in private locations, without the presence of other people, and were digitally recorded. Prior to each interview, I explained the interview process. Interviews ranged from 35 to 70 min, and were often followed by casual conversation. The conversations and the connections I made with many of the women left me feeling inspired and contemplative.

The physical state of the participants did not create major barriers to this research. However, I approached the interviews with a mindfulness of the participant’s state of being, and anticipated that calling on ill participants to reflect on their conditions would likely be an emotional endeavor (Morse, 2002).

My objective was to describe the process, meaning, and experiences of cancer for women. Techniques used included analysis of semi-structured in-depth interviews. Consistent with grounded-theory methodology, my approach was continually refined via the process of data collection and analysis (Charmaz, 2002; Berg, 2009; Glaser & Strauss, 1967; Taylor & Bogdan, 1998). In an effort to connect local experiences to the larger structural context, I allowed themes to naturally emerge, and then examined how the participants’ accounts were shaped by their social position (Uttal & Cuádraz, 1999). During the process of analysis, I was mindful of how women learn to “translate” when talking about their experiences to compensate for a lack of accurate language (Devault, 1999).

The digital recordings of the interviews were recorded, transcribed, and imported into Atlas.ti, a qualitative data analysis program. I analyzed transcriptions to find common themes among participants’ responses. Analytic categories were established after reading the data. Thematic patterns were then identified. Coding contributed to the process of defining and locating the narratives within a basic social process (Charmaz, 2002), and memo writing allowed for qualitative codes to be categorized and analyzed. This process also allowed for comparisons between data, categories, and concepts (Charmaz, 2002).

In the next section, I discuss four themes that are reflective of the experience of cancer and the changing of social relationships within that experience: Navigating a “Foreign Land,” Negotiating the Path to Wellness, Protecting the Family, and Creating Bonds With Other Women With Cancer.

Navigating a “Foreign Land”

For many women, the trauma of cancer diagnosis is marked by worry, depression, and a fear of the unknown. Upon diagnosis, most women in this study experienced a sense of normlessness as their social reality became inundated with the stress associated with unfamiliar and overwhelming medical information, treatment availability and options, financial and support resource, and their own ideas about what cancer means. All women discussed the difficulty of integrating cancer into their lives. One breast cancer survivor explained that, as a widow with grown children who lived out of the area, she faced the knowledge that she would have to manage her cancer by herself. She described the most difficult aspect of diagnosis as making a decision regarding whether or not she would pursue treatment. She also reflected on how her health decisions were guided by the fact that she did not have health insurance. This included postponing telling her doctor about the lump on her breast. She explained,

Um, I actually knew I had cancer before I told my doctor about it, but I didn’t have health insurance. So, uhm, when I was going through menopause, I realized that there was a lump in my breast and I tried to ignore it. And the summer before I actually told my doctor, it was pretty obvious because I had a good-size lump. So in January I went to see him and I had two lists. I usually only go to the doctor once a year because that’s all I could afford to do. Uhm, after being a single mom with four kids, you don’t have a lot of money. I took these two lists in of all my various problems ’cause I would just sort of dump my list of problems on my medical provider once a year so we could talk about everything [she laughs]. One included the breast lump and one didn’t. And at the very last second, I gave him the one that had the breast lump, so he felt it and said, “Pretty good size,” and uhm, did I wanna have a mammogram and he knew that I didn’t have any health insurance. So I had to do some investigating to find out how much it would cost and whether or not I could afford it. So I went ahead with that, and uhm, that came back saying “highly suspicious of breast cancer.” And so then I just had to try and figure out what I was gonna do to be able to afford any kind of treatment. And I didn’t know if I would do treatment. So, I mean it’s always hard to hear that you have cancer. I think probably fear—not so much that I had cancer, but was I gonna do anything about it and how was I going to do that.

In listening to her story, I reflected on the ways in which class position has informed health decisions in my own family. Among piles of medical papers, my grandmother, a breast cancer survivor herself, once told me the story of my great grandmother’s breast cancer. She refused treatment and the cancer developed to point where satellites were visible on her skin. My great grandmother, Matilda Cseh (changed to “Chaff” by United States record-keepers), was born in 1899. She emigrated from Hungary to West Virginia when she was 11 years old where her brothers and father mined coal. There she met my great-grandfather at a boarding house, and they married and relocated to Ohio. Their poverty was exacerbated by my great-grandfather’s inability to find work after World War II (WWII) because of his tuberculosis. They faced financial, language, and cultural barriers that had systemic effects on all aspects of their lives. I cannot help but wonder if her inhibitions to seek medical care were rooted in these experiences.

In another woman’s words, cancer diagnosis is like being “picked up and put in this country where you don’t know the language and you don’t know the geography and you just don’t know where you are.” Three participants made the analogy of being dropped in a “foreign land.” Another breast cancer survivor and business owner recounted the event of her diagnosis as being scary because she didn’t know what to expect or what her treatment plan would be. She explained,

When I first got my mammogram and I got the call that they wanted me to come back, I actually was on the treadmill training for a half a marathon, and I ended up running a half-marathon distance that day on the treadmill. I just kinda had a feeling. So my husband and I went and it was scary, and we cried and I cried. And our dog died that night, too, so. But, ya know, it was scary and at the minute, I didn’t know what my treatment plan was. It’s just scary, ya know, just the unknown.

Most women expressed that upon diagnosis, they experienced transformations in their sense of self. One woman expressed that she was “terrified” because she felt like she was “placed from the category of healthy people to the category of someone who has cancer.” The conception of “categories” implies a disconnection between her former identity and her new identity as a woman with cancer, as well as a perceived stigma associated with being “sick.” Along these lines, the reference of cancer diagnosis to foreign land, countries, and unfamiliar geography suggests a conflation of illness with “Otherness.”

Six of the women commented that they were initially hesitant to attend a support group or “turned off” after their first support group meeting. These feelings were explained by a resistance to their identification as a woman with cancer. As one attendee explained, “At first I would get, ‘Welcome to the club,’ and I thought, well this is a really crappy club. I don’t wanna be in it.” Some also expressed a fear of witnessing others with reoccurrences.

Negotiating the Path to Wellness

Eight women agreed that significant others played a major role in providing emotional and instrumental support. One woman, for example, explained that because she lived alone, one of her daughters set up a website on which people could sign up to drive her to chemotherapy or provide help in other ways. This illustrates an entire new level of awareness and coordination of support via online social networking resources. She added that her family had been “very respectful” of her making treatment choices for herself and not putting pressure on her to do chemotherapy or a mastectomy.

A few women described experiences in which family or friends receded from their lives. One breast cancer survivor explained that her family stopped contacting her after her diagnosis. She dealt with this by sending cards with pictures and updates on the status of her treatment as a means of showing her family that she was progressing through chemotherapy and would survive.

Some women commented that having cancer made them realize who their “real” friends were, and some cited family members as having a difficult time communicating. One woman recalled an exchange in which a friend advised that she have her “uterus and everything else taken out.” She laughed as she recalled her response—“no, can’t do that.” In her words, “some friends try to be helpful, but you can’t always take their advice.”

One woman explained that her sister was “definitely into alternative health care to an extreme.” Her sister felt that she didn’t need surgery or chemotherapy—that she “should just take her vitamins and herbal supplements,” and that would cure her. She felt upset that her sister did not accept the choices that she made for her own body. Another participant stated that the “hardest part in coping was trying to tell people and calm them down.”

Five women described the path to wellness as sometimes involving negotiating their care with others. Many indicated that support from family and friends was sometimes complicated by their interference regarding medical decisions. Some expressed that it was difficult to accommodate the reactions of people around them. These narratives challenge the popular assumption of the family as being only a source of nurturance and caretaking. They suggest instead that family can sometimes be a site of regulation and/or exclusion.

Some women felt they were ascribed the responsibility of their own health status by family members. One woman, for example, explained that her son blamed her for her cancer and “his forecast that it will come right back.” After her diagnosis, he decided that his family was going to become vegans, and she “got lectured almost daily about it from him.” This resulted in his limiting communication with her. To a certain extent, such experiences are informed by the individualized model of health, which persists as the most dominant health discourse in popular culture, education, and health care. Health education and services, for example, are linked to economic policies that depend on notions of self-dependency and personal responsibility.

Women’s personal narratives also reinforced the notion of individual responsibility for health status. While most women attributed health and illness to a number of factors, many emphasized modifications in health behaviors and practices, such as diet and exercise. Some women acknowledged the relationship between the environment and cancer. However, these perspectives conflicted with individualized explanations, and women sometimes simultaneously discounted their own notion of “outside factors.” One woman, for example, questioned the amount of control we have in the face of genetics and the environment. She stated,

I think there’s a lot of things that go on around us that we don’t have any control of that certainly give indications that they can cause cancer. I mean like smoking or if I were working in a factory where they were making asbestos. I mean, all kinds of things like that are caused by the environment. I don’t particularly know that what I had was. I do know that the kind of cancer that I had happens in a lot of alcoholic women, but it’s not necessarily what caused it, but it’s always on my mind. Not that I beat myself up about it. My father was an alcoholic, my grandfather was an alcoholic. I believe that that came to me through genetics and even though I had no control of the disease, I had control of stopping drinking, which I did.

This narrative provides insight into the relationship between agency and outside factors. A segment of the participants also struggled with the implications of “positive thinking” for individual responsibility. In reflecting on how she felt the first time she talked to her sister about her diagnosis, one woman articulated a tension between agency and blame, and the implications of this for one’s sense of self:

Her first question was, “What did you do to bring this on?” And that just really bothered me a lot. I felt like, there are some things we have no control over living on the earth and I can never know what caused the cancer to occur in the first place. Ya know, I guess what it really came down to, was that what if I died from this? Would it really mean that it was because I wasn’t thinking positively or that I wasn’t doing what I needed to do? And it’s a real thing that occurs and that word “survivor” for me became, not a negative thing, but kind of. What if you don’t survive? Does that mean you failed, or somehow were a negative thinker?

Some women recognized situations in which they felt that the medical community challenged their authority over their own experience. One woman, for example, reflected on a troubling experience with her surgeon, who also happened to be a well-known advocate for women’s health and women’s medical self-advocacy:

I told her that I didn’t want reconstruction. So I woke up from my surgery, which was a mastectomy, and she had left all this extra skin that was sort of like hanging. And I asked, “What is that?” Ya know. And she said, “Well, in case you change your mind and you want reconstruction.” So I was extremely upset for a long time, and I felt like I was doing the best job I could at being an advocate for myself, and she didn’t hear me. She didn’t. Anyway, ya know, it’s hard to be your own advocate, even when you try sometimes. It was probably, of all things that happened, it was things like that that were more hurtful and harmful to me than some of the other like physical side effects and things. It was just like, I’m a human being, listen to me please.

This experience illustrates how medical training, policies, and culture guide the decisions that are made by those in the medical community. Long-standing paternalism within the medical profession sometimes presents in a contradictory fashion. In this example, the doctor’s decision to override her patient’s wishes indicates a performance of the patriarchy that is imprinted on the institution of medicine. These examples of physicians making decisions for patients might also reflect educational prejudices, in which physicians assume that the patients do not know what they want. Such instances create yet another dynamic that reinforces the feeling of helplessness or lack of being heard. The previous example illustrates a doctor deciding what a normative sexuality desire would be. This halted the patient’s own process of healing and of thinking about her sexuality in a different way.

Normative sexuality is also reinforced in the media. The media plays a significant role in society’s objectification of women’s bodies and leads to insensitivity to the experiences of those who do not fit that commercial profile. The last decade has brought much attention to breast cancer, and breast cancer campaigns have presented a heroic image of women with breast cancer. However, some of these narratives reveal that the pressure of heroism on women might make them even more vulnerable. Heroism might pressure women to manage their own feelings and experiences without “burdening” others, a theme that I explore in the next section.

Stigmatizing attitudes or the perceived stigma from others can affect individuals’ sense of self. Women with cancer have to adapt to major changes in the body, such as mastectomies and hair loss, and in lifestyle as well. A woman, who had had a full mastectomy and did not wear a prosthetic, shared a story that denoted her sensitivity to others’ perceptions of her, which illustrates the impact of stigma on one’s sense of self. She recounted how she felt after walking into a restaurant:

When I walked in I realized that every table was filled with a group of men and I felt all the sudden like I needed coverage because I’ve had a mastectomy. And I felt like, oh, holy mackerel, ya know, I was gonna be judged. And I felt uncomfortable [she is teary-eyed]. I think that breast cancer is more talked about than it used to be. I think that when more people know and the more comfortable they are with those words that, uhm, it’ll be easier for women who have breast cancer.

Such narratives push us to consider the effects of nation-wide breast cancer awareness campaigns that objectify women’s breasts and send the message that people should care about breast cancer as a means of guaranteeing their own sexual pleasure. Some campaigns sexualize breast cancer, reinforcing an ideal of White female sexuality and the idea that a woman without breasts lacks value. At the core of this perspective of women with cancer are assumptions about belonging that reify and consolidate heteropatriarchal norms. The implications of normalcy are profound for women with cancer as they are faced with instituting alternative ways of thinking about themselves.

Protecting the Family

The gendered notion of selflessness intersects with personal responsibility in the theme of protecting family and friends from the burden of cancer. These narratives give credence to the argument that gender socialization, which stresses women’s selflessness and caring for others, influences women’s senses of entitlement to care (Sulik, 2007). Half of the participants expressed concern for not wanting to worry or put stress on family. A woman who was diagnosed with invasive ductal carcinoma and was in the process of radiation explained that she doesn’t like to worry her family. She said,

I think my siblings get really worried and protective, and so I try not to stress them out as much. If they think I’m having a hard time, it just really affects them, and I didn’t want that to happen.

Another recounted that she tried to protect her daughter by keeping her at a distance during her treatments. In addition to protecting her daughter from the visual cues of her cancer, she employed this tactic as a means of maintaining “calmness” within the house and continuing normal roles throughout the cancer experience. She explained,

She lives away, she goes to school, and we’ve really tried to protect her. She’s a nursing student, so [she laughs] I don’t know, she might have wanted to be more in the loop. She always knew what the treatment was and what was going on. We didn’t bring her home during the surgeries. She always came home after my surgeries and saw that I was doing well. I just think with my stress, I didn’t want to stress her out.

An attendee of the Advanced Disease support group expressed similar feeling:

You’re always trying to soften or protect your family. Ya know, you share things with them, but not the nitty gritty. But in a cancer support group, with several people on this journey, everyone shares what’s going on with them. And in the end, I think we’re all in this together, as far as the cancer support group and supporting in each other and helping through the hard times and the dying process. It’s all a part of life. And I know that my family, when the time comes, they’ll be there for me, but it’s not something that you want to dwell on with your family.

Experiences unique to women with cancer include learning how to perform care work for the self (Sulik, 2007). Women commented that they learned to reach out to others for help, if needed. This was a skill that they developed as they adapted to the demands of dealing with their illness. Jaime described it as a “learning process” in the face of her own proclivity to take care of things herself. Learning to let others help was not an indicator of helplessness, but a willingness to be helped that was also empowering.

Creating Bonds With Other Women With Cancer

Most women differentiated between the support they received from family and friends and that received from other women with cancer experiences. The support groups were viewed as a “comfortable” place to share experiences. They also provided a space for them to talk about family issues. An ovarian cancer survivor explained that “you can go away from your family and you can say what you wanna say. You can complain all you want about your husband or your daughters, or whatever, and it stays there.” Nine women viewed other women with cancer as being able to more genuinely understand the cancer experience because of their own experience. In one woman’s words,

The women from the support group are in the trenches with you and you can complain to them and it doesn’t feel like complaining because we all have the same complaints whereas you feel like you’re burdening family if you say, “oh, my bones are killing me.” But you can say those things at the support groups and everybody laughs because we’re all in the same situation.

The metaphor of being “in the trenches” suggests a relational similarity to the real trenches of military battle, and that the experience of one who joins the ranks of the seriously ill can become exclusive. Likewise, these narratives indicate that mutual survivorship of such perceived levels of danger can also lead to a difficulty in communicating with others who have not had that same experience. Along these lines, many felt that they could ask a lot of questions and get “real” women’s responses to how they made decisions, as well as how they reacted to treatment. One also noted that when “talking to your friends, they’re still in this category of healthy and you’re sick.”

Other women with cancer were viewed as having more insight into the cancer experience and/or able to offer more valuable information because of this. One woman commented that friends and family “tend to just be very positive,” whereas women with experiences of cancer are “much more to the point.” Other women who had had experiences of cancer were viewed as “more invested.” In one woman’s words,

I didn’t have a mastectomy so I didn’t lose my breast, but I lost a big chunk of my breast. I didn’t have big breast to begin with, so it was no big loss, but it’s still a loss. You still don’t feel like a whole woman, kind of. But the people here give that back to you.

Some also commented that observing strength in others helped foster their own courage and gave them the sense that “if they can do it, you can do it too.” Being a model for others also helped give meaning to their cancer experience. These themes reflect the philosophical rationale of the organization—that bearing witness to others contributes to one’s own healing.

By being able to access the experience and support of others going through similar experiences, a bond was created with people who were outside of their friend and family circle. The relationships were explained in terms of respect and dependable reciprocity. For most women, the most supportive spaces were formed in the company of those who had common experiences. Even though cancer support group members were sometimes inclined to regulate others’ decisions about treatment, the narratives suggest that these spaces are less disciplining. Exchanging stories with other women who had had a cancer experience was identified as being essential to the healing process. It dispelled the anomie of the initial experience of the disease and further solidified the new rules and norms of living with cancer. Through these connections and by bearing witness to others, women engaged in a process of reclaiming control over their social reality.

A few women explained that associating with people at various stages of disease facilitated a valuable system of exchanging information. Much of the information exchanged related to the control of the effects of cancer and medicine, fighting cancer, and restoring energy. Control of the body and mind was expressed as being integral to women’s sense of agency. Most women expressed a strong mind/body/spirit orientation to disease management, and pragmatically employed a variety of coping strategies for actively managing the effects of cancer.

As individuals are actively involved in the production and consumption of health knowledge, they are increasingly likely to embrace new illness identities (Conrad & Barker, 2010). Proactive approaches to health, and the supplementation of medical knowledge with information from other sources, can positively influence health. Illness identities can also improve well-being in that they often evoke feelings of self-empowerment (Popay & Williams, 1996). Concurrently, many assert that technoscientific influences increasingly impact self and group identity (Sulik, 2011).

Sulik and Eich-Krohm (2008) argue that, although ready access to medical information can be empowering for some, it might also introduce new worries and uncertainties related to the choices involved in medical options. They argue that the weight of correct decision-making for one’s own health can be burdensome.

Even though it was sometimes overwhelming, most women described gaining information as a way for them to cope. It helped mitigate fear, alleviate the sense of normlessness associated with diagnosis, and establish the new rules and norms of living with cancer. The normlessness associated with initial diagnosis was reversed as the women experienced empowerment through controlling decisions regarding their care. Those who felt an initial reluctance to attend the support groups continued to attend because they felt that they were gaining valuable information. Most also attributed gaining information to helping them become more active participants in their treatment.