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Caregivers' Guide for Bone Marrow/Stem Cell Transplant

Cancer Etiquette: A Survivor's Perspective on Effective Communication

by Rosanne Kalick

The Words

Etiquette books abound. You can learn how to fold napkins, what to wear on the golf course, how to behave in a church where the rituals are new to you. We want to say and do the right thing. We look for standards for our behavior. When it comes to cancer, however, we have few guidelines. Too often our emotions take over, and we say or do the inappropriate thing.

Years ago we spoke in whispers about cancer, and there was little we could do as friends, family, or colleagues. Today we speak openly about the disease, and there is much we can do to communicate more compassionately. Words and deeds are powerful.

Often people say the most damaging words during the period just after diagnosis. The shock, memories of family members who had cancer, the individual's fear of getting cancer cause him to speak before he's thought of the consequences of his words.

One young woman diagnosed with breast cancer received a sympathy card from her mother. A casual acquaintance asked someone who had a colostomy whether the bags were paper or plastic. At a luncheon, one woman turned to another and told her not to touch the glass of another guest because "she has cancer."

Those are examples of words said, words that hurt. There are many, many others. If we begin to think in terms of cancer etiquette, we are less likely to err in our words. "Do I really need to say this?" or "What would I want someone to say to me?" may prevent verbal errors.

It is not uncommon for someone to say to the patient, "You will be fine." Of course, you want everything to be fine, so does the patient. By saying that, however, you're ignoring cancer reality. The high dose chemotherapy in the bone marrow transplant process and the threat of infection are part of that reality. While the transplant success rate is good, there are likely to be setbacks along the way. That is part of the process. Saying "I hope everything will be all right" or "You're in an excellent program; you'll be getting excellent care," are better choices. The patient is facing the greatest medical challenge of his or her life. Your saying everything will be fine doesn't give the patient any "wiggle" room. How can he or she speak to you openly unless you are realistic about the medical situation? This is true of most of our questions and words. Always leave the door to communication open so that the patient can be honest, can raise issues of concern to him, can speak of his anger, his fears, his family concerns.

"How are you?" Usually we're expected to give the standard, "OK, fine or great." The question and the response aren't taken too seriously. It's part of the daily exchange of words. In the cancer scenario, however, that question is significant. If you're going to ask this or any other question, be prepared for the answer. It may be better to say, "How are you today?" The patient can then speak honestly of how he feels at the moment. He can speak of how he feels today compared to yesterday.

Be careful, too, about commenting on how the patient looks. Don't tell the patient how great he looks. The transplant patient will not look great much of the time. He knows that. Saying, "You're looking stronger" or "I'm glad to see you're walking around" are better choices. There are two areas that are particularly sensitive. Hair loss is one. High dose chemotherapy causes the patient to lose his hair. Eyebrows, eyelashes, and pubic hair can disappear. It will be months before hair growth returns. Seeing oneself bald every day isn't easy. Don't ask how it feels to be bald.

If the patient should make a comment such as, "I'm really worried about dying," and you respond, "You're not going to die," again, you may be "clogging a verbal artery." The patient wants to live. She wants to live to see her children grow up. He wants to live long enough to meet his grandchildren. Fears about death, pain, finances, permanent damage to the immune system are natural for the transplant patient. Your responsibility as caregiver, friend, family member, or colleague is to listen. Listening totally, listening without interrupting the patient, listening without planning your response will be extremely helpful.

If you're a close family member or friend, probably the most important words you can say are, "I love you." Joseph Telushkin tells the story of an old man whose wife had just died. The scene is the cemetery. All the guests have left, and only the man and the rabbi are present. The old man keeps repeating, "I loved my wife, I loved my wife" again and again. The rabbi keeps telling the old man that it is time to go. The old man finally says, "But you don't understand. I loved my wife, and once I almost told her." During the long transplant period, the two greatest gifts you can give will be your presence and your words of love. Never underestimate the power of a hug, the power of silence, the power of a touch.

Don't ask questions now that you wouldn't have asked before the diagnosis. If you discussed your sex life with the patient before his treatment, fine. However, just because your uncle has had prostate surgery doesn't give you permission to ask about impotence now. If you talked about problems with your teenage daughter before the patient started treatment, you can do so now. If the patient is too tired, she can ask that you talk about it some other time. If you value your friend's advice about business, you can still ask for it. The fact that he's having treatment doesn't mean he is any less intelligent than he was before. There may be times when the drugs will give him a sense of "chemo brain." Obviously if he seems disoriented or excessively fatigued, postpone the question. When in doubt about what to say, don't say it. Think before you speak.

Equally personal is the faith question. Again, if you've discussed faith with the patient before her illness, it's probably all right to discuss it now. It's best to wait for the patient to raise the issue. If you have strong religious views, and you're not sure of the patient's, don't speak about how faith will heal. You may be intruding into an area that is too difficult for the patient at this time.

Generally, your presence is more important than your words. In our society, we seem to think we need to talk whenever we're with someone. There will be times when silence may be the best connector.

The Deeds
"If you need me, I'm here." "If you need anything, just call." Variations on these words are common. There are better ways to offer help. Be specific. "Do you want me to bring dinner on Tuesday or Thursday? Do the kids prefer chicken wings or roast chicken?" "I'm going to the library tomorrow. I can return your library books and pick up picture books for the kids."

Patients undergoing a transplant may feel their life is out of control. Anything you can say or do to restore a sense of control is good. That's why asking rather than telling works. It gives the patient a chance to make a decision, to assert control. Specific areas of help include planning schedules for carpooling, travel (especially important if the patient is being treated at a cancer center far from home), arranging food shopping and preparation. Remember, bringing dinner means cleaning up as well. Often two or more people need to coordinate these schedules.

Here are some guidelines for gifts:

  • Buy pajamas or nightgowns that open in the front. This makes it easier in terms of the catheters the transplant patient has.
  • Moisturizers are good, but no gift should be heavily scented. Strong smells can add to the patient's discomfort.
  • Snacks can be great. The patient's appetite will need stimulation. Providing the doctor approves, almost anything that the patient enjoys is acceptable. Ice cream in the morning? Why not? Interesting teas, nutritional home shakes, and hot chocolate may stimulate a weak appetite.
  • Bring CD's or books that are short and light.
  • Consider a magazine subscription for the patient or her children.
  • Give a gift certificate for dinner or a manicure/pedicure, a day at the spa, or a cleaning service for one day.
  • A gift to a cancer organization honoring the patient is appreciated.
  • During the neutrapenic period, do not give gifts of flowers or certain fresh food.

The patient will be undergoing treatment for several months. One card or one casserole will not do the trick. E-mails, notes, jokes, videotapes, computer games are all good possibilities. Remember the caregiver with small gifts. Plan for the long haul. Work in community. Your neighbors, church or synagogue, or office mates can collectively do more as a group than you can as an individual.

If there is a mantra for cancer etiquette it is "Stay connected; stay connected; stay connected." You'd be surprised at how many people "disappear" when someone gets cancer. Understand that you won't be able to do everything, but you can do something. Cancer etiquette is like a puzzle. What will fit one moment won't the next. Just keep trying. You can do it!

Rosanne Kalick, MA, MLS, is a two-time cancer survivor. She was diagnosed with multiple myeloma in 1993, had two stem cell transplants and has been in partial remission ever since. In 2000, she was diagnosed with breast cancer which was treated by a double mastectomy and chemotherapy. Rosanne was a high school English teacher and then became a college librarian and chairperson of the Library and Learning Resource Center at Westchester Community College in Valhalla, New York. After retiring, she began work on her book, "Cancer Etiquette: What to Say; What to Do When Someone You Know or Love Has Cancer." Her research, her volunteer work, and her five grandchildren keep her out of trouble.

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Table of Contents

Acknowledgements

Foreword

Why a Special Booklet for Caregivers?

My Gift to Mom for Her Second Birthday: An Adult Daughter's Perspective

Tackling the Challenge: A Husband's Perspective

Cancer Etiquette: A Survivor's Perspective on Effective Communication

Top Tips for Parent Caregivers: A Mother's Perspective

Another Way to Say I Love You: A Wife's Perspective

Emotional Aspects of Caregiving: An Oncology Social Worker's Perspective

Relying on a Family of Strangers: A Patient's Perspective

Symptom Management for Caregivers: An Oncology Nurse's Perspective

How to Be a Successful Family Caregiver: An Advocate's Perspective

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