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Living the Patient Role:
"I Just Hate to Ask"

The following article is excerpted from Chapter 8 of Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Going through an extended period of physical pain, malaise, fatigue or outright disability that interferes with normal day-to-day functioning takes an emotional toll as well as a physical one. As a result of treatment side effects, or disease progression, you may no longer be able to work, at least temporarily, or find that your other everyday roles are compromised. Maybe you aren't able cook or shop for your family, or chauffeur your children to their lessons or games. Maybe you have difficulty with walking or just getting around. Maybe you worry about how your husband will cope with a lengthy period of caring for you if your illness progresses. Other people must take over doing accustomed tasks, and it's hard for you not to feel badly about burdening them. For an independent woman who has always taken care of others, it can be extremely stressful to become dependent upon others, to feel a loss of control over activities you've always taken for granted. However much the people in your life understand and accommodate themselves to your needs, all these changes represent a blow to your self-esteem. It can be particularly hard to ask for the help you need.

When Kathy Stone was told she'd need three weeks of radiation for a tumor that had appeared in her chest wall, she spoke of her difficulty asking for and accepting help. "I am very fortunate," she said, "that I do have a lot of friends who still do care and offer help and I know it won't be a problem getting my ride schedule filled…. I just hate to ask."

Laurie Feldman responded:

I feel the same way. My friends keep telling me that doing something for me makes them feel that they are not completely helpless in the battle against this disease. It makes them feel that they are doing something that will really help. I know how hard it is to ask for more help when you have done it so many times before and you probably feel like I do, that there is no way you will ever be able to pay back these wonderful caring friends for all that they have done for you…but just let them help. I know from my experience with my sister and my dear friend who succumbed to this beast, that I cherished the memory of the times when I was "allowed" to do some small thing to help them, even if it was a ride to the hospital, a meal for their family, some fragrant smelling body lotion as a hospital present that they loved, whatever.

Remembering her own problems with neuropathy, Joleene Kolenburg commiserated with Kathy as well:

I am so glad that you have friends there that can drive you. It was hard for me to ask my friends to drive me, too. (I could not drive because of my feet). If I ever have the opportunity to help someone, I am going to be the transportation chairman and line up drivers for chemo. People are so willing, but it is so hard for the patient to ask.

Kim Banks felt the same way about having to ask:

I've always been a very independent person. Recently I've had to rely upon friends and family to take me to appointments, which really isn't that big a deal, but I hate it all the same. I'll put off asking, and when I do, I apologize repeatedly for being such an inconvenience. Actually, I've learned that it's at least something they can do for me, and probably makes them feel better. I still hate it!

Loss of function, however, bothered her still more, though Kim still felt hopeful that one day she could become active again:

I've also been a very active person and was diagnosed with cancer at the age of 32, when I felt like I was in my prime. My husband and I had just moved to Colorado to hike, bike, ski and generally enjoy all that the mountains had to offer when I was first diagnosed. In the past 10 months I've had to dramatically limit my activities because of my back. I cried last week when I looked through our photo album--was that me powering up the side of a hill on my mountain bike? It made me feel even more like an invalid. We went home for Memorial Day and I just couldn't play the crazy games with my nieces and nephews like I used to. I so wanted to scoop up little Nathan in my arms, but knew my back wouldn't take it. I'm used to being in the center of things and now must stand at the sidelines. Guess I'm going to have to learn to be a better cheerleader, but I haven't given up the idea of being on team again!

Nancy Gilpatrick, whose pelvis had fractured soon after her diagnosis with Stage IV breast cancer, shared Kim's concerns:

I have been physically disabled by the cancer. I started first with a cane, then graduated to a walker. I use a wheelchair if I'm going out for what would be a long walk or a crowd of people or I would have to stand for a long time or my boyfriend thinks it would really be easiest for me. The doctors never recommended any of these except the wheelchair when my hip fractured; however, they've all supported the equipment when I showed up with it.

I do know other women with bc and mets and I'm in a bc support group. I continue to be the only one who is disabled and feel really alone and like I stand out everywhere I go. It is one of my frustrations in that I am never able to get away from the cancer. I use humor and jokes, make up names, etc., to deal with it.

PJ Hagler also mourned the loss of normalcy:

I miss getting to walk like I used to. Mike and I used to go for long walks and this is tough for me now. On Taxol, I have an awful time getting up in the morning with my sore legs and swollen hands. I soak my hands to help the swelling. I can't exert much energy in doing much. My job is working at a computer most of the time and general secretarial duties. I don't walk around much in my job. I'm learning to cope with my limits. However, I still wish I could get some of the energy back that has been taken from me. I even get resentful when I see everyone else doing or going wherever they want without a second thought. I have to know if there is a long walk required or are there stairs to climb, etc. I miss not having the energy level I used to. I hate being so tired so early in the evening or even needing a nap. I'm now just 46 a few weeks ago and I mentally am still young, but physically I'm getting old.

Ellen Scheiner, who had lived with disability her whole life, found that in some ways, breast cancer helped her to deal with her feelings about being disabled.

There was another unexpected fallout from my cancer experience. I had never made peace with my paralyzed right arm. I still felt like a victim because scoliosis had forced me to give up my work as a physician. I felt sad, depressed, angry, and pushed away many opportunities and people, out of rage. I was forced to work half time, give up running, could not stand for more than 10 minutes and was limited in traveling and in many other usual activities. I had learned new skills and pleasures that were within my abilities, but I still felt bitter. Knowing that many other people suffered (my support group helped here), forced me to put my life in perspective. I finally saw that I had had a full and productive life despite my prior disabilities. In a sense, breast cancer and mastectomy were less limiting than my previous, chronic orthopedic problems. On the other hand, they were not life-threatening. Somehow the realization of the uncertainty of "all that is" has crystallized something in me. I found a new way of seeing that enabled me to realize the richness of what is now and to give up victimhood.

For many other women dealing with metastatic disease or at high risk for recurrence, it was the more subtle issues of control and dependency that plagued them. Bonnie Gelbwasser described her own emotional responses going through HDC treatment and recovery:

The possibility of being dependent on others was the worst part of learning I had breast cancer. I am a control freak who is very independent and not one to be particularly demonstrative--or to enjoy being hugged by strangers. With the help of my therapist and the example of my caregivers and friends, I have learned to loosen up a bit. Seems like everyone wants to embrace a cancer patient. People would envelop me in their arms to comfort me (or perhaps to see if I would break!). I learned to accept it, even to welcome it, as just a warm gesture from someone who cared--and to be soothed by the expression of their caring. I now find it easier to hug other people. Strange world, isn't it?

The people involved in my care at the hospital accepted my need to maintain my independence. They quickly learned that I would always take my medicine and show up for appointments and would not do anything to compromise my care, but they also learned that I knew who I was and what I needed to keep up the illusion of living a normal life, so they gave me leeway whenever possible (one example: they let me drive to my chemo after the third session because I convinced them that I felt strong enough to get there and home without my husband). For my part, I have worked very hard at accepting the intrusions and the restrictions that come with being a cancer patient.

Jenilu Schoolman found it difficult to deal with her loss of control regarding the farm she helped run:

During this time, I think I had the most difficulty with the issue of control and how to give it up. When I was still very ill, I could not do much for myself, let alone carry my weight with chores. I had to give up complete control then, but now that I was better, I wanted to take control again.

Late that first summer one of my partners told me with much pride that she had ordered the hay for the animals' winter feeding. When chores are shared, a division of labor evolves and ordering the hay was one task I had always done. She was pleased with herself and expected me to be comforted by the knowledge that she could take over. But I felt horrible. "I'm still alive," I cried. "Why didn't you talk it over with me?"

Many people found that their relationships with family members were altered, sometimes in unexpected ways. Sue Tokuyama felt a new connection with her mother, who nursed her through her recovery from HDC:

I am a very independent person, oldest of four girls, always carrying the weight of the world on my shoulders. In fact, one of my favorite bits of T-shirt wisdom (since diagnosis) is, "For peace of mind, resign as master of the universe." I am trying to resign.

My mother once told me that I was a "bottomless pit of need," and this was pre-BC. After my diagnosis, for the first time in my life, I was her first priority, and I will never forget how much she's helped me, and been there for me in the last year and a half. But now, when I am not hurting, and the beast seems further away, she is also further away. And I have to fight to not feel hurt when she tells me that she wants me to delay the reconstruction until July, because she's going to Europe. The unreasonable child in me says, "I am the most important thing, and I didn't give you permission to go to Europe!" The grownup in me says, "this woman is entitled to her own life, ENJOY the relationship you have with her."

Mary D'Angelo, the oldest daughter in her family as well, also cherished her mother's caretaking and attention as she went through her induction chemotherapy, and felt it softening old feelings of resentment for the disruption and loss of mothering caused by a younger brother's severe disability. She also reported feeling touched by the feisty way her elder daughter took care of her after surgery in the hospital:

Danielle got in an argument with the nurse. I remember hearing this, because I kept drifting in and out. They were giving me injections. I was feeling so happy that Danielle was there, because I knew I was safe. But I could not believe her tenacity. She just dared them to try to remove her. I remember her saying, "I work in public relations, and I'll have your name on the front page! Get a nurse if you want me to leave!" I was just in awe. I had thought of her like a child, so that was a very important experience for me to realize the bond that we had, that she was there. I'll never forget that. Then, by the next morning I was fine, I had makeup on and the fear was gone. It was such a strong bonding experience between us.

Pam Hiebert also experienced a similar reversal with her daughter, Amber, who helped her mother through a financial crisis of her illness:

Amber and I have always had a special bond. I have grown in wisdom at her side as she rises to her authentic self. She has been my great teacher and I have mirrored my older years for her. I began to see her in different eyes when I became ill with the disease, for she took the role of an adult when I could not walk without help. She came and offered her strengths--unselfish, young in energy and as steadfast as I could ever have imagined.

The cradle was reversed and she worked long hard hours to help me get through the financial crisis that was before me. On her first visit, she sat with me in council and offered her resources to me. I felt such pride in her willing commitment to deal with a frightening situation head on. She shared her wisdom and we plotted the course together. It was such a noble gesture. It was such an act of compassion and love. She comforted me and the money that she sent became my safe haven. She never wavered from her commitment, but continued to send money each month until I was able to work more hours and again grasp hold of the yoke.

Lucie Bergmann-Shuster, who had cared for her mother at home during her dying process, offered the other perspective on the reversal of parenting roles:

My mother felt very badly that she was such a burden to me. I had to constantly assure her that I was okay and that I, too, was getting massage treatments to make me feel better. Then when the hospice volunteers came to stay with her, I would tell her that this is my time to get away and to please allow them into her room. She didn't necessarily like all of the volunteers that came but we worked around that.

I think some of us feel pained to be so burdensome when we, as women, in particular feel the calling to be nurturing. Likewise, I think that some of the men on this list with breast cancer feel compromised to be demanding of their supports in times of need. At best it is very awkward and quite uncomfortable to be so compromised.

Like others, PJ Hagler has found a way to graciously accept the help offered to her, and explains how this understanding came to her:

Years ago I was helping care for girls in a group home and we had a psychologist who was there for the staff. I tried to do it all myself and not rely on anyone else to help me. I was taught a powerful lesson. This observant man said, "You know how much you like to help others, well there are others like you out there who want to help and you are doing them a favor by asking and then letting them help where they can." There are people out there who have talents that they want to use and we need to let people use those talents. I still have a hard time but it's mainly because I want to be able to do these things. I now let a friend take me to chemo treatments, and when I came home from the hospital, people from church brought meals for a week, and at work another secretary does all the copying, which is down at the other end of the hall. I appreciate and thank people now for their assistance. But I still wish I could have my life back and do for myself.

Mary D'Angelo articulated what many women with metastatic breast cancer feel about what lies ahead, as she discussed her fears about becoming a burden to her husband and children:

If I would have a long, lingering end, I'm concerned that I would disturb all their lives. This is ridiculous, I know. But I worried that they would have to be taking days off from work, and that I would cause them a lot of pain. So if I feel sad about anything, that's what I feel sad about. And that's silly, too, because that may not happen at all. I know they won't feel that way. I know they'll all rally together.

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