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Your health care providers concentrate on removing the cancer, helping with physical symptoms and healing your body. The garden path that you have been exploring talks about choices that you have in how to treat cancer.
Long term emotional recovery is different from coping with treatment. During treatment, you will have frequent (perhaps daily) contact with your health care team. You can chart physical treatment daily, weekly and monthly as events on a calendar, or stages that occur Ð but emotional recovery is much more personal and solitary.
There is no similar logical set of options of how you might choose to feel about having cancer or losing a breast, or what attitudes you should use for going on with your life. This is something that you will deal with on your own terms.
More likely, your body will carry a scar to remind you and those who are intimate with you that you once had cancer. You may have minor or significant disabilities resulting from your treatments that you never were limited by before. You live with the knowledge that cancer may return again sometime.
This is really difficult. Having breast cancer is not what any of us would choose. It takes strength of character, perseverance, a lot of soul searching, and good support from family and friends to go back to living normally. Life goes on and you need to find a way to live it. Many women find a new awareness of the joys of life after going through the diagnosis and treatment for breast cancer.
Naturally, when the cancer treatment ends, your health care team becomes less involved in your daily life. Many women feel they have lost the support of some of the people most involved with their physical needs and well being. If you feel this way, you may want to talk with someone on your health care team you felt close to.
Don't condemn yourself for feeling devastated or uncertain, sad or afraid. Ask for help and understanding. Make sure the people close to you understand what you are dealing with. Let them help. Consider asking for additional help from professionals such as nurses, social workers, clergy, psychologists, or psychiatrists.
Caption:
Bilkey, a cancer survivor, is shown here at a rally against breast cancer that was held at Michigan's State Capitol in 1993.
Breast cancer support groups help you get practical information, understand your feelings, and develop your own ways of handling problems.
Often, a health care provider or social worker at your local hospital or clinic can suggest local and national support groups that will help you with rehabilitation, emotional support, financial aid, transportation, or home care.
The American Cancer Society's Reach to Recovery program offers special help for breast cancer patients. Trained volunteers, who have had breast cancer themselves, will visit you at your request and lend emotional support to you before and after your treatment.
They will talk with you and share their own experiences with breast cancer treatment, rehabilitation, and breast reconstruction or fitting of breast forms. Your local Reach To Recovery group can be contacted through your local chapter of the American Cancer Society. To find an American Cancer Society near you, check your local telephone book or contact the national office at the following address or phone number:
The National Alliance of Breast Cancer Organizations (called NABCO) is a non-profit organization that helps breast cancer patients get information to help them make informed decisions about treatment.
The mission statement describes NABCO as "a network of breast cancer organizations that provides information, assistance, and referral to anyone with questions about breast cancer, and acts as a voice for the interests and concerns of breast cancer survivors and women at risk." This organization also can help you find a local support group. Contact NABCO at the following address or phone number:
Information about other programs and services for breast cancer patients and their families is available through the Cancer Information Service, which is sponsored by the National Cancer Institute (NCI).
You can contact NCI to speak with an information specialist about cancer (9amÐ5pm your local time), or order free cancer information publications and have them mailed to you. Contact NCI at the following address or phone number:
The National Coalition for Cancer Survivorship (NCCS) is a network of cancer survivors and their organizations across the country. The NCCS helps cancer survivors and their families start local support groups or contact existing ones, sponsors a clearing-house of national resources for support and information on life after a cancer diagnosis, provides advice to reduce cancer-based discrimination, and serves as a unified voice of cancer survivors. To find a local NCCS group, contact the national office at the following address or phone number:
ENCORE stands for Encouragement, Normalcy, Counseling, Opportunity, Reaching Out, and Energies Revived. ENCORE is sponsored by the national YWCA, and is a program for post-operative breast cancer patients. The program includes exercise to music, water exercise, and a discussion period. A woman may join a group the third week after her surgery, with her health care provider's permission. For further information, check with your YWCA listed in the telephone book.
Y-ME is "the largest and most comprehensive breast cancer support program in the country." Y-ME was founded in 1978 by two women because of their own experiences with breast cancer, and is a not-for-profit organization. Y-ME provides information, "hotline counseling," educational programs, and self-help meetings for breast cancer patients, as well as their families and friends. Contact Y-ME at the following address or phone numbers:
And they offer support groups, and the days that you go for radiation they let you know where you can go, and its right in the hospital so it was very convenient for you if you need that extra support. But I didn't actually need the extra support, but it was good to know that it was there for you if you needed it.
The cancer support group is helpful to me in different ways. When I first went, I just needed to be in a group of people that had gone through this. I could talk to my friends and my family, but it was different being with a group of people that had that shadow of fear in their lives. Since I've been feeling better, going to the cancer support group is partly to be with a group where they bring up things that I'm thinking about. But as I said, I have a hard time talking about feelings, so that way I can deal with some of these things without having to bring it up myself in a conversation. They're very courageous people. Some of the people in the group are dealing with recurrences, and I'm seeing how they deal with it.
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I think if a person has friends or a support group of some kind, it helps. Talk with people who have been through it. People dropped in that week after I got home from surgery who I didn't know had ever had cancer, or mastectomy, or anything, and they came and they said "I had one thirty-five years ago" this one girl said. And she's doing fine. Another one said "I had a radical mastectomy twenty-five years ago and here I am." And that, I think, was more helpful than almost anything. So be open to all kinds of information.
It's nice to be able to go to a support group when you're first diagnosed to talk about your choices. I heard about the support group after I had surgery, but if I had known about the support group before I had surgery, you know, it might have been helpful to me. I might have taken more time to explore my options.
This experience of having cancer was hard and long, but when you're trying to get better for others you have so many people going to bat for you that it just pulls out the healing. I went back to work, but they sort of favored me. They helped me to travel far. But when some of my friends or relatives had cancer, I'd go right there and when I could say "I've had cancer, and there's good doctors and they knew just what to do, and when, and how, and I had the Good Lord to help me." I said "It's okay."
I think people's first inclination is "Let's go visit her, she's in the hospital." I didn't want visitors. I was not feeling well. Your friends understand that if you tell them. Now instead of helping my friends, they needed to help me. When people said "What can I do?" I had to be ready to say "I really need you to stop at the grocery store," or "Do you think you could help with cut the grass?" or "Would you be willing to take my children for a few days?" And I needed to get into a mode of accepting help.
Friends, other than people who have cancer, they don't understand. The best thing that you can do is bring food. That was very, very important for me. I love to eat, but I didn't want to cook. And a hug. A hug is real important. My daughter went through the same thing that I went through when my mother was diagnosed. She was supportive but she still wanted to go on with her own life. And really, it comes at a time in your life when it interferes with your own particular life style. So I could understand that. My husband is there for me. He was very knowledgeable on the type of treatment that I chose, but as far as really delving into as much as I did, no, he left that to me. I can understand. Its difficult for a man because he's scared he's going to lose me and he doesn't want that.
I did rent a lot of videos, funny videos, because laughter is very good for you. And I think it has to do with the sound and the breathing that laughter does. I'm not a big television watcher, but I would just check out six or eight videos for the weekend because I would have my treatments on a Thursday, I was wiped out Friday, and the weekend I was trying to get myself together to go back into work on Monday. So it was a nice escapism.
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When your physical treatment ends, the health care team moves on to their next patient and you are left living in a changed body. If your cancer was detected very early, you may have little or no outward physical reminders of cancer. Even so, you will have faced the terror of being diagnosed with a dreaded disease. You will have lived through the devastating uncertainty of wondering whether you will die, lose your breast, or whatever other frightening images the word "cancer" suggests to you.up to Contents of this Page
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Remember to talk with your health care provider about your concerns, or new questions that arise. You and your health care provider should make decisions about your future health care needs, together. Take responsibility for your follow-up care. Remember that your provider can work with you.up to Contents of this Page
Health care providers and patients have learned the value of mutual support among patients. If having breast cancer has made you feel frightened or depressed, it often helps to discuss these feelings with another person who has had the same experiences with breast cancer. up to Contents of this Page
Here is contact information about various breast cancer information organizations and support groups:
National Headquarters
1599 Clifton Road, N.E.
Atlanta, GA 30329
1-800-ACS-2345
9 East 37th Street
10th Floor
New York, NY 10016
(212) 719-0154
National Cancer Institute
Building 31, Room 10A24
Bethesda, MD 20892
1-800-4-CANCER
(Spanish-speaking staff members are also available)
1010 Wayne Avenue
Silver Springs, MD 20910-5600
(301) 650-8868
National Headquarters
212 W. Van Buren St.
Chicago, IL 60607Ð3908
(800) 221-2141 (9 - 5, M-F)
(312) 986-8228 (24 hours)
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Lottie's Experience
Judi's Experience
Lucille's Experience
Maggie's Experience
Geneva's Experience
Linda P's Experience
Virginia's Experience
Angelita's Experience
