With regard to the breast cancer survivors' experience of managing lymphedema, 4 revelatory intentions were developed to describe the experience. Intentions were viewed as breast cancer survivors' consciousness of actions toward lymphedema management. The 4 revelatory intentions are: keeping in mind the consequences; preventing lymphedema from getting worse; getting ready to live with lymphedema; and integrating the care of lymphedema into daily life. Table 4 provides the summary of the revelatory and cluster intentions.
From their daily experience, the women realized that "lymphedema could get worse." One woman's remark represented the intention, "I know the consequences of not taking care of my arm. I know if I don't take care of my arm, it's going to get much larger and uncomfortable. It's going to be hard for me to find clothes to wear. I also know that it's going to be difficult for me to do things if my arm gets bigger. See, I'd been there with my arm bigger, and I had the swelling reduced considerably and I certainly don't want to go back to that way and make my arm worse." Three cluster intentions represented the consequences carried in the women's mind: (a) knowing that my arm could get bigger, (b) knowing that I could be so physically uncomfortable, and (c) knowing that I could go back to the therapy.
From their experience, the women came to the realization that their arms could get bigger if they did not continue taking care of their lymphedema. As one woman with 2 years of lymphedema stated, "I have to take care of my arm because I am afraid that my arm will get bigger and bigger and out of control. My worst fear is that it's going to get huge to the point that I cannot use it." Another woman's experience exemplified such an intention. This woman of 5 years of lymphedema used to have her affected arm twice the size of her nonaffected arm. Her experience made her aware how severe lymphedema could be. As she described,
At that point of time before I started the therapy, my [affected] arm was so heavy and big that I had to carry it around with the other arm. It was so burdensome. When my arm got so big, it's very hard for me to buy clothes because of the sleeve size. I certainly don't want to go back to that way.
The women also realized that not taking care of their lymphedema would intensify their experience of being physically uncomfortable with pain, soreness, aching, burning sensation, and feeling of heaviness, rigidity, or tiredness in their affected arms, hands, shoulders, or thoracic areas. One woman who had experienced "really sharp pains" in her affected arm and shoulder described, "If I don't wear my [compression] sleeve just even in a day, my [affected] arm hurts a lot more Like this Sunday, I didn't wear the [compression] sleeve because I wanted to wear short-sleeve blouse in church. That night, my arm was feeling really tired and really sore that I couldn't sleep. The pain and swelling kind of helped me to remember that I shouldn't have done that [not wearing the compression sleeve]."
For the majority of the women, they kept in mind of the consequence of going back to the intensive physical therapy. The women were unwilling to go back to the intensive physical therapy for several reasons: firstly, they considered the therapy time-consuming because they had to go to the physical therapist 2 to 4 times a week for 4 to 6 weeks; secondly, the women were afraid of wrapping their arms again; lastly, for women without insurance to support physical therapy, they were afraid of the financial burden. One woman made a representative remark:
I don't want to end up with a huge arm. After all, I have to go through that therapy. If I have to wrap my arm again, that'll be the ultimate! Because I really did not like doing wrapping! That's very uncomfortable and very limiting. I couldn't go swimming. Because when I was wrapping my arm, every time I went swimming, I had to unwrap my arm and I could not wrap it back. In addition, my insurance only pays two visits for physical therapy a year.
Upon such realizations, the women came to terms with the importance of taking care of their lymphedema by keeping in mind the consequences. Such an intention also motivated the women to manage lymphedema on a daily basis.
Recognizing the serious consequences of not taking care of their lymphedema, the women tried to prevent lymphedema from getting worse. When questioned about what made them take care of their lymphedema, all the women made the similar remark that they did not want to make their lymphedema worse (also see Table 2 ). It was apparent that all the women's major intention of managing lymphedema was to prevent lymphedema from getting worse. Three cluster intentions were intuited to constitute the revelatory intention: (a) keeping control of lymphedema; (b) protecting the affected arm and hand; and (c) monitoring lymphedema closely.
Keeping in mind the consequences, the women tried to prevent lymphedema from getting worse by keeping control of lymphedema. One woman's statement exemplified the intention. When questioned about how she was able to carry on her daily actions for the care of her lymphedema, the woman pointed at her affected arm and stated, "I just can't compromise to risk for the consequences of not taking care of it. I know the consequences. I don't want to have a huge arm. So, I keep control of my arm." To accomplish the intention, the women took series of daily actions such as wearing compression sleeves and gloves, wearing heavy compression garments during the night (such as Tribute, Legacy, or Reid sleeves), applying wraps or bandages, performing self-massage and exercise, cleansing their affected arms and hands, applying lotions on their affected arms and hands, elevating their affected arms, adhering to lower sodium diet, and sleeping on the nonaffected side. To keep control of lymphedema, the women also used the compression pump as needed, had their affected arms or hands measured every 6 months for the fit of the compression garments, and went for physical therapy as needed.
To prevent their lymphedema from getting worse, the women also consciously protected their affected arms and hands from injury. The women tried not to "allow blood pressure taken or needle sticks done" in their affected arms or hands. The women also tried to consciously "avoid doing repetitive work" with their affected arms or hands such as painting, ironing, scrubbing, vacuuming, or knitting and tried to "lighten their physical load" to avoid heavy lifting. To protect their affected arms and hands, the women also tried to "avoid sunburn" by staying out of sun or applying sunscreen; they also tried to avoid carrying their purses or shoulder bags on the affected side. As one woman described, "I put sun lotion on my arm. I wash my arm frequently and I keep my arm pretty clean. Mainly, I just try to protect my arm from getting injured. So, it won't get worse." It was apparent that all these actions the women took were meant to protect their arms and hands from injury.
To prevent their lymphedema from getting worse, the women also tried to monitor closely their affected areas for any fluid build-up, swelling, puffiness, or any changes. As one woman described, "Just watch my [affected] arm and try to make sure that the swelling is not out of my control or the swelling is not increasing. If I cannot get my bracelet on, there must be something wrong. Then, I would go immediately and get my arm checked."
Through their daily experience with lymphedema, the women realized that lymphedema "won't go away" and taking care of their lymphedema was "a lifetime commitment." As one woman described vividly,
Lymphedema is something that you have to deal with everyday. It's something you have to deal with physically and you have to deal with mentally. You know, lymphedema will never go away. You have lymphedema for the rest of your life. I think, when you realize that you have to deal with lymphedema for the rest of your life, you know that you have to change your life both from a physical and emotional standpoint.
It was such a realization that helped the women to get ready to live with lymphedema. For all the women, having survived breast cancer was a paramount experience under which they tried to get ready to live with lymphedema. Six cluster intentions represented the women's strategies to get ready to live with lymphedema: (a) facing the lifetime commitment; (b) accepting lymphedema; (c) accepting the new image of me; (d) having a positive attitude; (e) putting myself first and sitting back; (f) find a way to face the curious public.
"At first, I kept thinking that the swelling would go away. But, then, the swelling didn't go away. So, it's here to stay and I have to accept the fact and face the music," described a woman with 9 years of lymphedema. Realizing lymphedema could not go away even with treatment or therapy, the women tried to face the lifetime commitment of taking care of lymphedema. As another woman with 7 years of lymphedema stated, "It's a lifetime commitment. Lymphedema is not something that you can treat it in six months and it will go away. It will never go away." It was such a realization that helped the women to face and take the lifetime commitment of taking care of lymphedema for the rest of their lives.
Realizing that lymphedema "won't go away" and taking care of lymphedema was "a lifetime commitment," the women tried to get ready to live with lymphedema by accepting lymphedema. Having survived breast cancer, the women were grateful for "the gift of life" and living with gratitude helped them to accept lymphedema. The women tried to accept lymphedema by counting different kinds of blessings. They counted their blessings by thinking:"Lymphedema is a little price I have to pay for surviving cancer;" "It could be worse;" "I feel pretty fortunate that my lymphedema is not more crippling than it could be for me;" "I am just very thankful that my lymphedema has not limited me as it could have;" and "I feel very fortunate that I have been able to keep my lymphedema under control."
The women felt that their spiritual beliefs helped them "accept lymphedema without questioning" and "let God be in control." As one woman said, "Because of my spiritual faith I really never want to sit around and question the 'whys.' I just accept whatever is and deal with it. And from my spiritual faith I have the strength and ability to cope with whatever is given to me." Joining a support group also helped the women to resolve their sense of "being singled out" and accept lymphedema. As one woman vividly described:
I was thinking that I was the only person in the whole world to have lymphedema. You feel that you are on this little island by yourself and just struggling. But, I realized that was not true and I was not singled out, not anymore when I joined in the support group. Being with a group of people who are going through lymphedema like me has been helping me a lot to accept lymphedema.
To get ready to live with lymphedema, the women also learned to "accept the new image of me" with the swollen arm and wearing the compression sleeve or glove. Accepting the new image of me was an ongoing process for the women. In their daily routine lives, the women felt easier to wear their compression sleeves or gloves. However, with some special occasions, such as at dancing dinner or high school reunions, the women had to go through the process of accepting the new image of me again. One woman gave a vivid example of how she went through the process.
Last year, I had my high school 30-year class reunion. I really didn't want to wear the [compression] sleeve. So, I talked about it in one of our support group meetings. One woman in the support group said, 'Well, you know you don't have to wear the sleeve. So, just don't wear it [the sleeve].' You know what? I finally decided, 'This is me. This is what I look like now. Why put on a false sense of yourself when it's not a reality? Why risk my arm?' So, finally I ended up with wearing the sleeve for my high school reunion.
Having a positive attitude was another strategy that helped the women to get ready to live with lymphedema. All the women felt that their positive attitude helped them to live with lymphedema. For the women, having a positive attitude meant to "think lymphedema is something that I can live with! I might not like it, but I can cope with it and I can deal with it. And it can be part of my daily routine just like brushing my teeth." Having a positive attitude for the women also meant to realize, "You can manage lymphedema when you have to and you just learn how. I think that you just accept the fact that this is the way it's going to be, you might learn to live with it and manage as best as you can." Having a positive attitude for the women also meant that "After all you did survive the cancer and this is just a little price that you have to pay."
Having survived breast cancer, the women no longer took life for granted. To get ready to live with lymphedema, the women tried to "put themselves first and sit back" by trying to take care of their lymphedema first and asking for help. Most of the women in the study were women who had always been taking care of their family and helping others first for the past of their lives. As one woman said, "It's a hard thing for me to take care of my arm first because I'm always thinking about other family members and kids first. It's hard to just let myself go first. But, I try to make myself prioritized because I've realized if I can't take care of myself, I can't take care of somebody else." The women also tried to "sit back" and let other people help them. For example, when a woman was talking about how she learned to let others help her to lift heavy objects, she stated, "So, I kind of developed a philosophy if someone else can do the lift, my arm is in rest. I'd never had such a philosophy before. It's been very hard for me to sit back and let others do things for me."
While journeying along with lymphedema, the women felt that they were facing a world in which people were curious about what happened to their affected arms and hands. Most of the women felt that they received constant stares and questions from the public because of the visible signs of the compression sleeves or gloves or wraps as well as their enlarged arms. To get ready to live with lymphedema, the women tried to face the curious public by "making their compression sleeves or wraps less visible." As one woman described, "very often people would come up and say, 'What did you do to your arm?' You had to go in rather lengthy discussion about what you did not do to your arm. So, I wore long sleeves a lot." As time went on, the women became less worried about people's reactions to their visible signs as they became more accepting of their lymphedema. However, the women were still aware of their visible signs. Depending on the situations, the women still tried to make their compression sleeves less visible. For example, the women usually wore long sleeves to cover their visible signs if they went out for some social events. As one woman described, "If I go out socially, I always try to wear long sleeves that cover my [compression] sleeve just to have a better appearance and to be more attractive." Most often, when the women went to work, they also tried to make their visible signs less visible. As one woman, a psychologist, described, "Mainly, I've tried to wear something like this [pointing to her long-sleeve jacket she's wearing] at work, so, my [compression] sleeve would not be that obvious."
To find a way to face the curious public, the women also tried to educate the public by explaining to people about lymphedema. As one woman stated, "I wouldn't have known if I had seen somebody wear the sleeve; I wouldn't have known that it's lymphedema until I was a part of it. I have had a lot of opportunities to educate people and explain to people what lymphedema is." Depending on the situations, "taking the easy way out" by giving a simple answer or by simply smiling back was another way for the women to face the curious world. Sometimes, out of frustration, the women would just give people a short answer, such as "It is a complication or swelling from surgery." Sometimes, when the women were in the mall shopping or dining in a restaurant, they felt more comfortable to give a simple answer or just give a smile back to people's questions. As one woman described, "when people in the mall or waiting on me in the restaurant ask, 'Were you burned?' sometimes, I just say, 'Yes'. So, I just kind of take the easy way out."
Upon the realization that having lymphedema was "a lifetime commitment," the women tried to integrate the care for lymphedema into their daily lives. The women made aware of their limitations through their daily experience with lymphedema and they tried to change their lives to ensure a routine daily care for their lymphedema. Three cluster intentions constitute the revelatory intention: (a) making conscious decisions about my limitations; (b) making the changes in my life feasible; and (c)making the care of lymphedema part of my daily routine.
For the women, living with lymphedema was "limiting," "debilitating," "handicapped," and "inconvenient." Their daily experience of living with lymphedema made them aware that they were limited in their daily lives, such as doing household chores, lifting heavy objects, and enjoying some leisure activities. Being aware what they could not do, the women tried to make conscious decisions about their limitations. For example, all the women were aware that heavy lifting or physical work with repetitive movement of the affected arms and hands would exacerbate their lymphedema. So, they tried to make conscious decisions to avoid heavy lifting and give up some physical work (such as yard work, shaking large rug, cutting wood) or letting go of some leisure activities (such as cross-stitching, knitting, sewing, hot-tub, weight lifting). For another example, one woman noticed increased swelling and pain in her affected arm each time after she finished her cross-stitching. Then, she tried knitting and sewing with machine. At last, she realized it was the movement of her hand and arm that exacerbated her swelling and pain, so she made a conscious decision to let go of her "beloved cross-stitching" which she had been enjoying since her childhood as well as her new experiment of knitting and sewing with machine. For the women, letting go of "what was normal" for them to do or enjoy "was hard because it's a conscious decision I had to make every time."
To integrate the care of lymphedema into their daily lives, the women tried to make the changes in their lives feasible by learning to do things with their nonaffected arms and hands and incorporating what they had to do into what they wanted to do. The women learned to use their nonaffected arms and hands to clean bathtub, vacuum floors, lift heavy objects, and cook. To make the changes of their life feasible, the women also tried to incorporate what they had to do into what they wanted to do. One woman who had lymphedema for 23 years learned to keep her bras, her panties, and her compression sleeve together every night so that she could have an easy access to the things she needed for her affected arm. As she said, "I keep everything together so that I have an easy access. I make it easy for myself in a way that I have a long endurance." To make the changes of their lives feasible, the women learned to "space out the house chores" or to "have someone come and help" with their house chores. Most of the women in the study had to wear compression gloves in addition to their compression sleeves. For them, it was a great challenge to keep the gloves clean and dry because they could not "wash their hand" or "washing their dishes" with their gloves on. They creatively found that using rubber gloves over their compression gloves was an effective way to keep their compression gloves clean and dry.
To make the changes in their lives feasible, the women tried to determine what they could do and what worked for the care of their lymphedema. Most of the women were told by their healthcare providers to do a variety of things for the care of their lymphedema, however, some of the suggestions or advice did not work for the women to maintain their daily routine lymphedema care. When they first had their physical therapy, the women were advised to take the following actions as their daily care: wrapping, wearing compression sleeve, performing self-massage, elevating arms, keeping clean of their affected arms and hands, and performing arm exercise. As time went on, they found it was impossible to do all of the required actions. They had to determine what actions were effective, less time-energy consuming, and easy to maintain. The majority of the women decided that they would not apply wrapping on their affected arms as daily maintenance for their lymphedema care. For them, wrapping did not help to decrease the swelling significantly and was "time consuming and exhausting." They decided to continue those actions that were effective and required "a low maintenance" such as wearing compression sleeves, cleansing their affected arms and hands, performing self-massage, and performing arm exercise. As one woman described, "I did wrapping for a while; that was not extremely effective for me but I did wrapping because I was told to do so. Wrapping is time consuming and awkward. So, it is not just the notion whether I can do it or not. I was depleted by wrapping. Putting a sleeve on is much easier and that's what I do."
To integrating the care of lymphedema in their daily lives, the women tried to make the care of lymphedema part of their daily routine by establishing and maintaining a daily routine for their lymphedema. To establish a routine, the women made the care of their lymphedema part of "getting ready for the day" and "getting ready for bed." To maintain the established routine, the women tried to foresee the changes in their lives and planned ahead. Lastly, all the women realized, "Occasionally, if the routine is messed up, I have to readjust to it." The following description from one woman with 9-year experience of lymphedema exemplified the women's experience:
In the morning, I take off my Reid sleeve [a heavy compression sleeve for nighttime] and put on my other older Elvarex sleeve [a light compression sleeve for daytime]. I drink my coffee. Then, I dress myself and go for my 30-minute walk. When I come back home, I have my shower and do my arm exercise. After that, I put on my newer Elvarex sleeve. I wear the newer sleeve all day until I get ready for bed. At bedtime, I take off my sleeve and put on my Reid sleeve and sleep in that Reid sleeve. Then I repeat the process seven days a week without a break, especially when I am traveling or during my vacation.
Cancer Nurs. 2005;28(6):446-457. © 2005 Lippincott Williams & Wilkins
Cite this: Breast Cancer Survivors' Intentions of Managing Lymphedema - Medscape - Nov 01, 2005.