If I Knew Then What I Know Now: Tips for Dealing with Cancer
|by Lynn A. Marks
Spring 2002, Vol. 65, No. 1
I found a lump in my breast on January 5, 1998. A year later, I lost both breasts. My life changed forever, and so did the lives of many others close to me.
Most of you will confront cancer in one way or another over the course of your lives. Unfortunately, some of you will develop cancer and even more of you will know someone struggling with it. Your experience with cancer may be both a lonely journey and a journey shared with those you care about, as they help you cope with the difficult diagnosis and its treatment.
There are many ways to deal with crises. Here are some suggestions-from my experience-for coping with the disease and for helping others as they go through their ordeal.
First and Foremost
Talk: Say what's on your mind. Express your concerns. For many people, this is the kind of situation where they hold back, only to say later on, "I wish I had told someone..." Consider calling Survivors' Helplines and talking to others going through similar experiences.
Listen: Get as much information as you feel you need-about your situation and treatment options-and make sure you understand it. You may have choices to make among types of treatment and if so, you will want to make the most informed choice you can. The more ambiguous the situation, the less likely your doctor will make a specific recommendation.
Dealing With Doctors
People have different ways of learning and understanding. Your doctor's way of "teaching" may not necessarily match your way of "learning." I suggest that when you have heard everything the doctor thinks there is to "know" about the disease and treatments, say back to the doctor what you have "learned." Don't be afraid to ask for clarification or to ask for information to be repeated. If this is your first time dealing with a cancer diagnosis, you may need some information repeated several times before a complete understanding is achieved. And don't feel as though your doctor is too busy to listen to you and answer your questions.
Take someone along to medical appointments. It helps to have a second set of ears and eyes, not to mention a shoulder to lean on and someone to take notes while you're listening. It's easier for someone else to advocate for you, to be your squeaky wheel, so you can concentrate on getting better.
Prepare for each appointment. Read about the disease and its treatment so you're familiar with the terminology. There are good books and articles on breast cancer, and information is readily available on the Internet. It can be overwhelming, so check with known organizations and medical facilities to make sure you are getting good, solid advice. Doctors aren't always the most chatty people, but I found they usually answered questions well. So plan questions in advance and bring them with you.
Don't underestimate the helpfulness of nurses. I found them particularly knowledgeable about pain management, and they had the patience to answer my questions. Many nurses can also help answer questions that arise between appointments, and they are often more accessible than doctors. Don't feel as though you need to wait and save your questions for your next office visit. If something is important to you, call the nurse to see whether she or he can help you.
Ask someone you trust to be the "captain of your team," someone who is objective, who can understand the complexities of cancer treatment and research, and someone who can help you decipher all the information. This could be a knowledgeable friend, your primary care physician, or your oncologist, to name a few. Having someone capable of capturing the whole picture is important because you will go to more appointments and see more kinds of medical professionals than you ever thought imaginable. You don't have to manage this experience alone. Ask others who want to help you to participate in your care.
Don't be reluctant to get second opinions. If you get conflicting opinions, find out who the leading authorities are on your specific problem and seek their advice. Take the time to seek the opinions of experts. Don't shortchange yourself by acting too quickly.
Confirm every appointment before you leave. You don't want to show up at 1 p.m. for an appointment that your doctor's office thought had been changed to 5 p.m. You need to conserve your energy!
Accept that there are few, if any, certainties in the field of cancer. We are still learning about what causes cancer and how to treat it. You want to be in a position to make the most informed decision you can, based on the best information that is available.
Family, Friends and Co-Workers
Reach out to others and ask for support. You need not go through the experience alone. Although I often felt like a burden to those around me, I realize now that people want to help in whatever way they can. It makes them feel involved in a process in which they otherwise feel quite helpless. Don't feel like you have to be "up" all the time. It's normal to need support throughout the experience.
Remember, family and friends may feel powerless and afraid, so you have to lend them a hand. Provide clear guidance to others on how much you want to talk about the disease and its treatments. Remember that this is traumatic to those around you as well, particularly family members. And how a spouse or lover reacts will have a huge impact on every one of your feelings.
Dealing with kids is a challenge. My best advice is plain and simple: Know your kids. Be aware that they are suffering, and be sensitive to their needs. Determine as best you can what amount of information they can handle. Be as honest as you can without devastating them. Encourage them to express their feelings, either to you or to someone else close to them. They might need to ask, "Are you going to die?" And you don't want them to deal with those feelings alone. Don't be afraid to ask for professional help when talking with children about cancer.
Coping With Fatigue, Pain and Loss of Control
Fatigue was the most frustrating effect of cancer for me. It's hard to express the sense of fatigue brought on by treatments, particularly chemotherapy. Accept that your energy will be limited. Choose your battles carefully. Prioritize. Set realistic daily goals. Pushing yourself too hard may prolong your recovery. Some days, taking a shower was all I could muster.
Do not downplay the physical pain. Pain that is not well managed leads to greater fatigue. If you don't get relief from the medicine prescribed by your surgeon, contact a pain management specialist. Consider complementary and alternative medicine approaches to managing pain. Acupuncture, guided imagery and sound therapy are just some of the very effective ways of dealing with pain, fatigue and the frustration that comes with a cancer diagnosis. Find out what might appeal to you.
Loss of control was extremely disconcerting for someone like me, and it may be for you. Chemotherapy-induced mood swings were particularly difficult. For me, one of cancer's greatest lessons is to take control wherever you can and be philosophical about the rest. Surrender to the reality that the chemicals are stronger than you. You'll waste energy and invite disappointment if you attempt to be in control at all times. Try to "go with the flow" and not fight every battle.
Cancer is nothing to feel ashamed about, but some people believe-and with good reason-that they'll be discriminated against. I was fortunate to be able to speak openly about my illness in the workplace, which made my situation more comfortable.
Because there are countless medical appointments, because you feel sick, because your energy level is low, because it's hard to concentrate, because you look different, because you have to make personal calls, because you're just not going to be the same old you, it's easier to be honest about the situation rather than having people confused and angry that you're not working up to capacity.
Accepting Your Body
In our culture, breasts represent so much, not only physically but sexually and emotionally. I can't begin to convey what it was like to lose my breasts. I have no regrets that I chose reconstructive surgery, although it may not be the right route for everyone. I am fortunate to feel whole again, especially because I realize not everybody does. Don't make decisions based on society's views but rather on your personal needs.
Take control where you can. The loss of hair and eyebrows is the most obvious result of chemotherapy. My best decision was to cut my hair very short several weeks before treatments began and then to shave it entirely as soon as it started falling out. It gave me an important sense of control, in the midst of a long ordeal in which control is so often not possible. And because I wasn't going to look and feel like the old me anyhow, I seized the opportunity to try different looks: wigs of different colors and styles, turbans, scarves and hats. If your lifestyle allows, go for it! But be sensitive; your kids might want you to look exactly like you did before the cancer so they're not constantly reminded of it. As a natural brunette I enjoyed learning whether "blondes have more fun," but my then-12-year-old son did not!
An American Cancer Society workshop, "Look Good, Feel Better," is a wonderful opportunity to learn practical tips about using wigs and turbans, and applying makeup to skin, which may change color during treatments. Participants get complimentary makeup and donated wigs.
Dealing With Demons
Early on, I decided I was going to fight this disease and tried to determine a route with the fewest bumps in the road. For me, that meant being optimistic at almost every turn-despite the pain, despite some pessimism around me, despite the very nature of having cancer. I tried to retain my sense of humor. I found it helpful to take the "journey" one step at a time, focusing on the day, the hour, the moment.
Everyone has different "demons," depending upon who they are, as well as the diagnosis and in what stage of life they are. There are no "rights" or "wrongs" for dealing with raw fear and anguish. I suggest contacting a cancer support organization, a mental health professional and/or others who have experienced cancer. You need not face the demons alone!
Suggestions for Family, Friends and Colleagues
As a friend, family member or colleague of someone struggling with cancer, you can play an incredibly important role by taking the patient to appointments, running errands, bringing food for the family, taking the kids, visiting, being optimistic, or just offering support. Don't let the helplessness or vulnerabilities you may feel at times prevent you from lending a hand.
You can also make it more difficult by voicing your fears to the patient. Do the patient a favor by getting your support elsewhere.
If you want to help, be specific in offering options. It's not as helpful to ask "what can I do?" Patients have too many decisions to make as it is. So if you want to help by bringing food, say "I'm going to bring dinner. Do you want chicken or fish?" Offers to loan scarves, hats, videos and books on tape are great ways to show support. Even something as small as providing a list of good movies to rent is helpful. Or you may offer to do research on the Internet. A friend helped me make a daily schedule of what medications, treatments and exercise routines I was supposed to follow at what time. This was extremely helpful for me and for my friend to do on my behalf.
Set up a phone tree or an e-mail list to convey information and updates to friends, colleagues, and/or extended family. Unless you're close friends, consider sending cards or e-mail messages rather than phone calls. It can be exhausting responding to phone calls, yet the expression of support is invaluable.
Assess What's Really Important in Your Life
I know it's a cliché to say that having cancer is a "wake-up call," an opportunity to assess what's really important in life, but I feel it's true. Life seems more precious to me now, and to many around me. My hope in writing this article is to make the journey a bit smoother for others. Thanks, in part, to the help and support I received from so many people, I catch myself smiling for no reason. Or maybe I'm smiling for the most important reason of all: just being alive.
American Cancer Society
Provides service and rehabilitation programs, as well as patient and family education and support programs.
Local phone: 215-985-5400
National phone: 800-ACS-2345
Web site: www.cancer.org
Complete online resource for breast cancer information.
Web site: www.breastcancer.org
Linda Creed Breast Cancer Foundation
Advocacy organization that offers access to women and their families regarding detection, treatment and survival.
Web site: www.lindacreed.org
Living Beyond Breast Cancer
Education and support organization offering programs and resources for women and families affected by breast cancer.
Survivors' Helpline: 888-753-5222
Web site: www.lbbc.org
National Black Leadership Initiative on Breast Cancer (NBLIC)
Web site: www.nblic.org
National Breast Cancer Coalition
Advocacy organization dedicated to fighting breast cancer.
Web site: www.natlbcc.org
National Cancer Institute (NCI) Cancer Information Service
Resource for information and education about cancer.
Phone: 800-4-CANCER (800-422-6237)
Web site: www.nci.nih.gov
Pennsylvania Breast Cancer Coalition
Advocacy organization that speaks to and for breast cancer survivors.
Web site: www.pabreastcancer.org
Susan G. Komen Breast Cancer Foundation - Philadelphia affiliate
Raises money for breast cancer research, education, screening and treatment.
Local phone: 215-238-8900
National phone: 800-462-9273
Local Web site: www.phillyraceforthecure.org
National Web site: www.komen.org
The Wellness Community of Philadelphia
Support groups and complementary educational programs.
Local phone: 215-879-7733
National phone: 1-888-793-WELL
Local Web site: www.twcp.org
National Web site: www.wellness-community.org
Women of Faith and Hope
Breast cancer support group for African-American women in Philadelphia.