1180 Avenue of the Americas, 2nd floor
New York, NY 10036
Phone: 212-221-3300 or 800-813-HOPE (4673)
Web site: www.cancercare.org
CancerCare’s offices are located primarily in the Northeast United States, but they offer a wide range of services to cancer patients and their families nationwide via a toll-free hotline, teleconferences, and their Web site. Among the free services CancerCare offers are: individual counseling and support groups, information and education, and access to financial resources and assistance. While CancerCare offers guidance for all cancers, they have special programs unique to different types of cancer. For example, their Web site contains numerous prerecorded teleconferences on breast cancer topics ranging from “Sexuality and Breast Cancer” to “All You Wanted to Know about Tamoxifen.”
Web Sites Can Be Helpful . . . But Three Caveats About the Internet
Yes, the Internet can be a fabulous source of information, but it can also be dangerous. Its helpfulness is the wealth of the most up-to-date information, free of charge, that can be searched for on very specific topics (e.g., surgery, hormone treatment) directly from the medical community. Aside from the Web sites associated with the organizations mentioned above, I won’t even attempt to offer recommendations on helpful Web sites, as new sites emerge daily. However, don’t feel compelled to go “surfing” immediately. And remember that chatting with total strangers is not the same as reviewing medical articles on Medscape.
Consider one woman who stayed awake all through the night she was diagnosed, gathering material on treatment options to discuss with her doctor. By morning she had terrified herself, convinced that any treatment would leave her with permanent, debilitating side effects that she refused to endure. She exclaimed to me, “Did you know that there’s something called ‘chemo-brain’ where you lose your memory?” I calmly replied, “That sounds suspicious. Did it ever occur to you that the woman you were ‘chatting’ with on-line may have been eighty-eight years old and a victim of Alzheimer’s?” “No,” she replied. “Maybe I am being silly.” With that said, I give you three caveats about chatting on-line:
• Caveat 1: You never know who’s on the other end. When you go on-line to talk to people about cancer, or any subject, you have no idea who is at the other end, and what their physical, mental or emotional state may be. People enter the world of cancer with very different health histories which may have nothing to do with the cancer challenge at hand.
• Caveat 2: Every person and case is different. When you start discussing cancer therapies with other women, there is an immediate tendency to compare yourselves, to go running to your doctors sure that they are missing something because all other women have been told to do something that you haven’t. Resist the temptation. Every single case of cancer is different and you have no idea why one doctor recommended what he or she did. This is true when you’ve actually met, but even more so on the Internet, when you’ve never even seen the woman!
• Caveat 3: The focus may be more on problems than answers. Most people who take the time and effort to sign on are generally seeking solutions to their own problems rather than altruistically offering advice about how to sail through challenging times. Approach Web sites and chatrooms a bit irreverently, and keep your focus on finding answers, not unearthing new worries.
Nope, You Didn’t Choose It, Sister, but You’ve Just Been Initiated into a Special Sorority.
It’s never too late to gather helpful information, even when you’re well into the treatment phase. Regardless of any ambivalence you might have about not wanting to be around other people who are “sick”—no, not me, you think—get to know other women going through this. They’re the only other people in the world who really understand exactly what you are going through. Plus, they’re a great source of information. When you go for your first chemotherapy treatment, you might be afraid to talk with other women there. Don’t be. They are all seasoned “pros” and they are just waiting to give you helpful pieces of advice, comfort, and encouragement. Go ahead. Talk to them. It will make them feel better to know they’re helping you, and you might walk away with some helpful hints.
ESTABLISHING SUPPORT AND COPING MECHANISMS
Brace Yourself for the Emotional Roller Coaster . . .
In the ups and downs of an individual’s emotional life, any significant changes—sometimes even good ones—may cause an increase in stress, worry, or anxiety which can throw you onto an emotional roller coaster. Particularly during breast cancer, it is very common for women to seek out help—from a variety of sources—at any or all phases: (a) at the shock of diagnosis, (b) during the seemingly endless routine of treatment, and (c) upon the completion of treatment, facing the uncertainty of returning to “normal” life.
To be perfectly candid, I found the most emotionally difficult time to be after it was all over. I had put my head down and plodded my way through, simply focusing on my day-by-day physical changes and needs. But then it was over. Doctors were no longer monitoring me weekly. I had done everything medically possible to prevent the cancer from recurring. And my phone no longer rang several times a day with friends and family calling to find out how I felt and what they could do for me. All that was left to do was go back to my life and wait . . . and hopefully live a full life until I’m an old woman of 90.
. . . And Beware of Triggering Events.
While the whole experience of breast cancer is probably a significant enough change for all of us to ride the emotional roller coaster, there are moments of particular vulnerability, or “triggering events” that can set off feelings of panic, worry, and undue anxiety. They can happen at obvious times, such as birthday or anniversary celebrations (anything that marks the passing of time and realization that we’re all mortal) or upon entering a treatment facility or hospital to go for chemotherapy (which brings back memories of past visits). Or they can happen at very unexpected moments, perhaps even something as seemingly innocuous as scheduling an appointment. So, brace yourself for them, call on your coping mechanisms, and ride them out, knowing they are normal and should subside.
Don’t Be Bashful about Asking for Professional Help.
If you find yourself in any type of elevated emotional state for more than a few weeks at a time, or reeling from emotions that prevent you from functioning, then it’s time to seek individual counseling. Prolonged feelings of being overwhelmed, helpless, out of control, angry, depressed, or paralyzed about making a decision deserve the attention of a trained professional. Find someone who specializes in the issues associated with cancer, and better yet, breast cancer. Many women—especially those who are independent, self-sufficient, and used to a great sense of control and mastery over their lives—find that this small task of asking for extra help is excruciatingly difficult. Why? By nature, women are not programmed to ask for help, but are raised to be the nurturers, the caretakers. So when we need help ourselves, we enter unfamiliar territory, uncertain about where to turn and what to do. If you feel a sense of hopelessness, loss, and inability to make a decision, do not hesitate to call any of your doctors and ask for help.
Find a Role Model like Gracie the Taxi Driver.
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