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Friends and Extended Family

The following article is excerpted from Chapter 9 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.

Not everyone dealing with metastatic disease is fortunate enough to have a loving partner close at hand to see what is needed and to provide "built in" help. Some people with metastatic breast cancer live alone, and must make special efforts to deal with loneliness and isolation, on top of all the other physical and emotional stresses of the disease. For these people, having a support network becomes crucial, whether this takes the form of a loving group of friends, extended family members nearby, or the services of a tight-knit community at church or temple.

While Ellen Scheiner found it possible to hire the help she needed to care for her physical needs during the intensive chemotherapy treatment she underwent, her emotional needs were more complex:

At the time of diagnosis and surgery, I was dating someone who was available some of the time, but was also very occupied with taking care of her mother. She comforted me at mastectomy time and the night before surgery we tearfully and solemnly said good-bye to my right breast, thanking her for the sexual pleasure she had given to me and my lovers. This relationship ended in April, when my lover developed serious health problems of her own. We had worn each other out and each had nothing left to give to the other. That left me without a significant other--no one to hold, touch or physically comfort me. I had wonderful friends, who did all kinds of things, but the element of pure bodily comfort was missing. A friend, who has been quite ill, recently told me that one of her criteria for potential friends is: will they hold me if I'm sick?

Barb Pender, divorced for ten years and taking care of her aging mother, recalls being devastated by the loss of her breast and pushing people away when she was first diagnosed:

I needed time to deal with my own issues before I could let someone else in. I truly tried to alienate everyone around at first--my children, my mother, my sister, my friends. I didn't want to be the cause of their pain in watching me go through everything. But then I found that I needed their support and their love--it ended up being the very thing that got me through those tough moments.

A woman alone, without a partner's reassurance of her attractiveness or desirability, can often feel woefully inadequate. In the company of the men she knew, Barb felt particularly self-conscious and negative about losing a breast.

During the period of my mastectomy and initial chemo I chose to keep the men at a distance because of my own insecurities. I could not believe that they would feel the same or treat me the same without my 44DD breasts. It was easier for me to distance myself from them rather than to deal with those issues while I was dealing with what was going on with me as well. It never occurred to me that I was loved and respected by them for who I am and not what I look like. I didn't find that until many months later when I finally "let them in" so to speak.

There was an article in the newspaper August of '94 that told of a young man with leukemia at one of our local high schools. All of the males in his class shaved their heads in support of his baldness. My friends are all married couples and we were talking about this article when I had to ask jokingly, as I sat there bald, where was their loyalty? As the afternoon went on, I had to go to the store. When I returned, there in the garage were the husbands shaving their heads--we were the three bald buddies. I never felt so loved.

Unmarried or unpartnered does not mean that one must confront illness alone. Barb Pender feels as if she is part of a "village" that includes her grown children and grandchildren, her mother and sister, and many others, including her former employer, her doctors and nurses and even a particularly supportive HMO:

As we get closer to the center of my village we reach my circle of friends. I can't begin to tell you about the love, kindness and support that I receive from them. They go to appointments with me, sit with me during chemo treatments, keep my spirits up, take me away from it all every once in awhile. They allow me to talk of death and any fears that might be laying around in the darkness--we laugh together and cry together. I am truly blessed with their unconditional love and understanding.

Not everyone is as fortunate, of course. As their cancer progresses, some people with metastatic disease find that extended family and friends start avoiding them, and stop coming for visits or even calling. They may begin to isolate themselves still more in response to this real or perceived pulling away. PJ Hagler felt as if people around her were beginning to withdraw from her.

I have been noticing that those around me are pulling away. People are saying "good-bye" before I'm ready to go. It's as if I have been given a death sentence that no one wants to deal with. I still have plans for a long life, yet others seem to have given up on me. Some at church are young and I think they are scared at the idea that someone even close to their age is dying before their eyes. My son is dealing with this by pretending nothing is different. He won't come around much because he cried the last time I saw him and he's embarrassed and afraid he might do it again. My sister has stopped calling since she left here. She visited in February and I think for the first time in her life she realized this could kill me. She used to call almost weekly with a new cure, now she is running away. Mike and I used to go out on weekends with close friends to dinner or the movies. I don't even hear from them. Friends at church who I have always been very close to just say, "You look fine, you'll be fine, get well soon," and then they exit. My very good friend and her husband, who Mike and I used to go out with almost every other weekend to dinner, or movie, or wherever, has disappeared. She was in church a week ago and told Mike to give me a hug and tell me to get well soon. Get well soon! It's very weird. Even my family is having a difficult time talking to me. I know they're scared, so am I.

But I'm not dead yet.

Joleene Kolenburg reflected upon the work she had done before cancer forced her retirement, which had made her sensitive to issues cancer patients often face in social and work situations.

In my work as benefits manager, it was my "job" to visit the ones who were seriously ill. How many times I saw them go for days without a visit except mine. And these were all people that had a wonderful, caring church family. One fellow asked me once, "Are people afraid of me?" I told him that some people just can't handle this. And we have to understand.

I think the hardest thing for me after I was diagnosed with mets to the lungs was going to church and facing those who loved me so much. I could not bear to see their faces. But I knew that it would be harder as time went on. So I marched in with a big smile on my face and greeted people (even those that were trying to avoid me). Once we got through the initial meeting, it was okay. Of course the tears did come, but it got easier each time. It just takes time.

I guess the problem is that people do not know what we want. There are two ladies at my church that I hate to talk to. Yesterday the one said, "How are you?" I started to explain that my feet were much better and that I was walking some without a cane. But then in that sad voice, she said, "Are you in any pain? Can you breathe all right?" I told her that I have no pain, no trouble breathing, and I just want to enjoy life. Someone walked in just then who had gone to lunch with me last week. I told her I was trying to convince this other lady that I was okay. She said, "She's all right," and the lady said "But...but...." I said, "Yes, I do have cancer, and it is not going away, but I feel fine, and let me enjoy these good days." So what do I want? Sometimes I want people to listen to me, sympathize, but I cannot bear the "crepe hangers" that are preparing for the dinner at the church after my funeral.

From her own negative reactions, Kim Banks developed a clear sense of what she wanted from friends:

I have been feeling lately--a disappointment that the majority of friends and relatives respond to my explanations of recent treatments with, "But, you sure look good." I know that they think they are paying me a compliment or are providing encouragement, but it feels to me as if they are discrediting my illness or assume I must not be that sick if I look this good.

Four months ago, a college roommate, Carla, was diagnosed with breast cancer. She has been having a particularly rough time with chemo and I mentioned that to another friend of ours, Tracy. Tracy replied that Carla must be doing OK because her last letter had been so upbeat. This comment also made me think about what I would prefer hearing from friends and family. Here are a few things I would rather hear:

"I'm so sorry you're having to go through this. Is there anything I can do for you?"

"How is the radiation/chemo going?"

"How are you feeling?"

"If you need to talk, please don't hesitate to call."

"How is your family doing?"

"This must be a terrible thing to go through. I will pray for you."

Sometimes, while their intentions are good, people just don't know how to treat cancer patients--especially if the cancer is at an advanced stage. They may need some help and encouragement to approach you. People's own fears and fantasies often interfere with simple gestures of concern and caring. Part of this is simple human nature. Most of us fight an impulse to withdraw, to avoid confronting the painful evidence of mortality. As some of these quotes show, even when others don't physically withdraw, a common response is to minimize or deny the severity of the illness on the one hand, or to be prematurely "hanging crepe" on the other. Neither response is particularly welcome or helpful, however. What cancer patients hunger for is to be treated in a concerned, matter-of-fact, straightforward way. Even when your disease is no longer curable, encountering your friends' ill-concealed looks of pity, or their awkwardness as they struggle not to discuss the obvious, can be very difficult for all concerned.

No one is entirely immune to these responses, not even other cancer patients. One of the more striking examples of this kind of denial among the people I interviewed came from Caren Buffum, who recounted with sadness and regret her own response to a member of the Breast Cancer Discussion List who was dying. In her searching self-examination, Caren uncovered the essence of support:

I thought about Judith and my last exchange with her--and I realized that I must confess my own part in pushing her away. Ironic, because here I am, almost where she was at--but that "almost" makes a big difference. I had been corresponding with Judith for some time when she started writing me about her feeling that she was getting close to the end; she was out of treatment options and her symptoms were getting worse. And there's me, ever the optimist, telling her that it's probably just side effects to the chemo, blah, blah, blah--just trying to cheer her up.

She wrote back, insisting she knew the difference and she was sure it was symptomatic of the cancer. Looking back, I realize that I was refusing to allow her to express her deepest fears, and in all truth, I was not there for her. I should have acknowledged that her fears could be well-grounded and then just expressed my own loving concern. I should have told her I didn't want her to leave, but I had no say in the matter--and that all I could do was be there for her to share her feelings. That no matter how sad I might become by what she shared, I wanted to experience that with her, and that I preferred being sad with her to being without her. That I would not become unduly sentimental, but I would nurture her in any way I could and that I would listen, listen, listen--and I wouldn't feel like I had to say anything unless she wanted to hear my voice.

When I first realized how inappropriate my response had been to her, I felt guilty--I, of all people, how could I not understand what she needed? But I realized that I could not know--because even though we all know we ultimately face death, we are all not at the same distance from it. And more importantly, we all do not have the same perception of how far away we are from it. So Judith felt like she was staring it in the face, while I was holding it at bay with my arm stretched out as far as it would go. I still hold on to faith and hope and believe there is a miracle out there somewhere. I simply wanted Judith to do the same thing. But she was not in the same place as I, and she was at a point where she could no longer do that.

We cannot feel guilty for that divided response--don't leave me / you have my support as you leave--reaction. If even my own precarious situation did not sensitize me to Judith's need, I certainly understand how the people around me feel so inadequate in responding to my situation.

The visible evidence of cancer--the disability and hair loss--are often very difficult. Nancy Gilpatrick dreaded going out and having to deal with the reactions of former friends to the physical changes they saw. Her statement poignantly expresses the universal fears, avoidance and misunderstandings--and the acts of compassion--that cancer evokes in the "normal" world.

I also have difficulty going out; it feels almost like an agoraphobia. I fear people staring at me in my wheelchair or using the walker. I also fear them "not seeing" me. Tonight, for instance, I had an experience while at a wonderful outdoor concert where some people recognized me and some didn't "see" me. I used to have brilliantly red curly hair that was long and wild. No one missed seeing me. So I've wondered do they not recognize me? No, that's not it. I saw a woman I haven't seen since losing my hair and she came right up to me, hugged me and said what can I do? My response was call me, come visit me. I then realized if people are looking at the woman in the wheelchair or using the walker they would recognize me. It's painful experiencing their "cancer phobia." I do keep going to church and other events I enjoy and value. Some days I have to take a deep breath and give myself a good gentle and compassionate talk. So many prices to pay for this dreaded disease.

The sense of estrangement from the normal, healthy world can seem acute, at times. When her hair had grown back, Nancy found that it was this that people seemed to focus on. "I'm not supposed to be offended by getting compliments," she wrote, but what she longed for was someone to relate to her inner reality, ask about her illness and what life was really like for her. Once again, she found that one authentic response left her feeling less alone.

People around me, like in my church community, seem to want to focus mainly on how great my hair looks, I have hair, or it's so curly, etc., etc. They tell me how great I look. Now, don't get me wrong, I love the compliments and love hearing that the outside looks so okay. My problem is that people don't seem to want to hear the real story, how my insides are doing or the latest development. They want me okay and getting on with life. Last Sunday this funk was just starting and I was just going under.... I needed people to connect with me and all my church women, who were there, stayed at arms length away from me telling me how wonderful my hair looked. One friend sat down with me and asked how I was doing, really doing...the tears flowed. Just what I had needed, someone wanting to connect with me. She happens to be a 20+ year breast cancer survivor so she knew exactly what I was talking about with my feelings. I felt so comforted.

In every cancer patient's life, there are blessed exceptions, people who seem to know instinctively what is important. Kathy Stone wrote gratefully about her grand-daughter's precocious gift for candor:

My granddaughter, who just had her thirteenth birthday, has already told me that she understands that the chances of me being here for her high school graduation are slim...but that she wanted me to know that no matter when I die, I'll always be right there with her...and she said she knew that I would be proud of her when she graduated and she would know that I was standing right there with her, hugging her when she gets her diploma and awards. She is already planning on getting her college through scholarships because there's no money for it otherwise and she wanted me to know that she was depending on my encouragement even after I died... especially if it was before she achieved her goal, she said. Let me tell you...when your grandkids can talk so openly and freely with you it not only fills your heart, but it makes everything so much easier.

Bob Stafford spoke of the qualities he prized most in friendship:

The support of friends has been immensely important. To know that they care and I can call on them for help. They also treat me normally and allow me to talk openly about what is going on. I made some new friends last year. They are a neat couple, and very real. They know what is happening. She said to her husband one night, "We're going to get real close and love them, aren't we? Then he's going to die." They've decided to stick it through with us. Some others have, too. But some can't. Even my mom says that her next trip here will be the last one. My half-sister never stops by. We know who our real friends are nowadays. They're the ones who will let us say anything we want and know that it's part of what we're going through. And they still love us and don't try to impart guilt or judgment.

At the same time that former friends and some family members may withdraw, others are likely to step forward--particularly those who may have experienced something similar in their own lives, and feel a sense of empathy. Friendship and real help can come from surprising and unanticipated sources.

While everything I've written about social avoidance may be true, it's equally true that as cancer becomes a more familiar part of daily life, as people acknowledge its commonplace reality, more and more of them will reach out with help and support. The old taboos about talking honestly about terminal illness and the dying process are beginning to crumble.

For Gerry Wirth, it turned out to be the members of the scuba diving club he and Cindy had belonged to before her illness who rallied round, as well as members of their church group.

At the end, when Cindy's death was near, we had two kinds of friends. First, there were phone friends. They would call once in a while, but that was it. Then there were doorbell friends. These people kept coming to the door even when the outcome was evident. What set these people apart was that they were always there, no matter how dark and desperate the situation was. I could live another 100 years and not be able to repay them for their kindness. I guess I will trust God to do that.

Not only did the doorbell friends provide emotional support, but they helped with a myriad of practical needs that Gerry himself was ill-equipped to handle at that time, dealing with two young children. With profound gratitude, Gerry recalls the help that Cindy's friend Mary Jacobs offered during her illness.

Mary and Cindy were friends from church and our parish school. They were instrumental in continuing our Sunday Bible Stories for pre-school children. I think Mary was Cindy's closest friend outside the family at the end. Mary helped make things nice for the kids when Cindy couldn't. Cindy and Mary carpooled to school and play-group activities. When Cindy was too sick to drive or go, Mary would make sure the kids were not left out. We visited their house two weeks before Cindy died. We went over on a Saturday night for pizza. I had to carry Cindy from the car because she was so weak. But once inside, it was like everything was normal, the kids played and the "girls talked." Cindy was starting to withdraw at that time, perhaps preparing to die, but for that one last night she was full of life.

Just as crucial during the course of Cindy's illness was the help provided by both sets of parents:

My parents are elderly. My dad is currently 80, my mom is 79. Yet they were like marathon runners, always there in a slow, steady pace. When Cindy was in hospital, they watched the children so I could visit. When I needed to take Cindy to the emergency room at 3:00 am, they are who I called. They made us Christmas dinner while Cindy was in San Francisco getting her treatment.

Her parents were forced into the role of sprinters. They live 300 miles away. Yet they are much younger than my parents so their support was more concentrated and focused. They would stay with Cindy when I had to travel for several days due to business. They were great to visit when the cabin walls closed in!

Filled with gratitude over the fine help from family and friends that they all received over the entire course of her illness, Gerry reflected on the advice he might offer other patients and their families faced with a similar situation:

There are two keys to support. First, you have to ask for it. Most people have good intentions, but do not know how to help. Asking for specific help is what is required. At first, asking can be hard. It is hard to admit that you can't handle it. No single person can deal with the illness and the family alone. You have to be humble enough to ask. Second, you need to allow them to say no. It is important that they never feel that they are obligated or trapped. This could lead to resentment and bitterness. You have to ask for help in a way that demonstrates that "no" is an okay answer.

Patients often have decidedly mixed feelings about involving some members of their families in their care, particularly when it comes to informing them about the progress of their disease. Sometimes it is the lack of family reaction that is hurtful, as Joleene Kolenburg found:

I have two brothers and two sisters who live in the same general area as me. None more than 300 miles away. However, I have one brother that lives in Alabama and another in Florida. My brother from Florida just spent three days in a local motel and we visited during this time. The brother from Alabama came two weeks ago for overnight. This was the first of my family that have come to see me. This has really been hard on me, because we have always been a close family. I have always been the one, however, who organized the get-togethers and the visits to the various members of the family. Finally, I wrote some of my brothers and said I really needed a sibling visit. That's the reason for the two from the distance coming. Yesterday, the one brother who was here two weeks ago called to see if anyone else had visited me. I was sure they had been on the phone talking about me. (I had told my first brother that I knew they would come to my funeral, but I would really like to have them visit me now.) This brother today told me that he had told the younger brothers who live in this general area of the country that they should not wait too long. Of course that made me cry, but that is just what I was thinking weeks ago, when I thought I might die from the treatment.

I wonder what would convince my family that I really do have cancer. No, I didn't have a stroke or a heart attack, but it is not "behind me now." We are a complex people and we do have to let others know how we want to be treated, I believe. It is easy to do with some. Impossible with others.

Bob Stafford reported almost the opposite problem, as he described his mother's reaction to learning about the spread of his cancer:

I didn't tell my parents right away. I told my brother so that he would know, but asked him not to tell my mother. She's had to watch many of her relatives, including a sister and her father, die from cancer and I knew the news would be rough on her. I also didn't know what she would do. When I told her and said how extensive it was, she didn't say much, but later she called and said that she and dad were going to buy a mobile home only five miles from my house. That caused a fight between us because I knew that I had longer to live than she thought. I did not want her camping out at my house waiting for me to die. I did not want her trying to take over my family. I love and respect her, but knew that being that close would not be good.

Kim Banks was also concerned about her family's reaction.

My parents, in-laws and sister worry about me a lot, so I find myself often downplaying my condition to alleviate their worrying. I know that I can't eliminate their worries and would feel bad if they weren't concerned about me. Again, the cancer has actually brought us all closer. I "talk" with my sister almost daily over e-mail. Before the cancer, we called each other around once a month.

As with my husband, my family often feels helpless in helping me fight this disease. They visit more often and pamper us while they're here. Mom and my sister, Julie, cook and clean while my Dad runs errands and plays handyman around the house. My sister-in-law, Laura, a fellow writer, visits and inspires me to keep on writing. My in-laws call frequently to inquire about how I'm doing and send me articles and books. At first I resisted a lot of the help, saying that it was unnecessary, and felt out of place, not doing the tasks I've always been responsible for. Then I realized how much better they felt doing those things for me and I relaxed and enjoyed the pampering. It also gives Richard a break from some of the extra work he's taken on. And best of all, a whole lot of love is exchanged in the process.

Whatever their fears, people are often glad to help. They feel happy to be given a way to relieve their feelings of powerlessness, and will respond with extraordinary generosity to a family's needs. Social and church friends helped Gerry and Cindy Wirth to cover some of the costs of expensive transportation for treatments, as well as the treatments themselves:

Last October Cindy mentioned that we were running out of insurance benefits. In an instant, there was a fund-drive at the church. It raised $4,000 in three weeks. Earlier, during her trips to San Francisco for treatment, the scuba club had several fund raisers to help.

Bob Stafford also found that people showed their concern about the months of financial hardship his family faced.

Most people wait too long to apply for disability benefits. We stress our bodies out and that doesn't help in the battle against cancer. One of the things we don't realize is that there is a six-month wait before benefits begin. Most families have a very difficult time financially during this time because no one seems prepared for this economic hardship. We've known other families who didn't fare so well during this waiting period, so we feel very blessed to have been watched over by others. But we were taken care of by lots of people. The churches in the area took up collections for us and brought lots of food for the family. My wife continued to work. And God was good to us.

Day by day, cancer patients and their families do manage to cope with the isolation and stigma the disease evokes. If you are open, if you will only ask, surprising acts of generosity, companionship and love will often come into your life. From unanticipated sources, the help and support you need will make itself known. But you must seek it out. You must take action. If these stories speak to you, if you see yourself and the people you love here on these pages, take some comfort in the strengths reflected here. In this nation of individualists, we somehow are led to believe in self-reliance and stoicism as the highest goal. These stories show something else: that we are interdependent rather than independent, that we discover our best selves in relationship with others. And when the need arises, we are pretty good at taking care of one another.

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