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Coping with colorectal cancer (CRC) is possibly the most challenging life event you will ever have to face. A strong support network will help you confront the difficult journey ahead by empowering you with knowledge and hope and helping ease the burdens of daily life. As you reach out, you will find that support comes from people in all aspects of your life. Loved ones, family, friends, coworkers, health care professionals, religious institutions and cancer support organizations are all important sources of emotional and educational support in the fight against CRC.
A recent survey conducted by the Colon Cancer Alliance (CCA) of people living with CRC or caring for someone with the disease found that a majority of people with CRC have loved ones who provide emotional support, accompany them to doctor’s appointments, and assist them with everyday errands.
Additionally, nearly 70 percent of respondents with CRC noted that communication with friends and family increased after their diagnosis.
As you progress through your diagnosis and treatment, unique issues will arise and the types of support that you need will likely change.
Your very first needs may be focused on gathering as much information as possible about the disease and treatment options. You may need help finding a physician or healthcare team that you feel comfortable with and can trust. You may require greater support from your family and friends in researching the latest advances in treatment or clinical study options available. Talking with family and friends about any anxieties, frustrations, concerns or problems you are having during this time can help ease your mind. Throughout your treatment, it is natural to feel emotionally overwhelmed and experience feelings of sadness, fear or anger. Talking through your emotions with a loved one, a member of the religious community, counselor or support group can help you achieve peace of mind. Let your friends and relatives know that they can offer comfort simply by being themselves, by listening without trying to solve problems, and by being at ease with you.
Physical comfort is another key issue. If you experience discomfort, don’t wait until it is severe before talking to your doctor or nurse about pain control.
The support that each person in your network provides is uniquely important. Don’t be afraid to ask for help in the areas of your life where you need it. Most likely, you will find that there are countless things people are willing to do for you.
It may be easier to ask for help if you recognize that support from friends, family and loved ones can be as beneficial for them as it is for you. Cancer is a very emotional disease that can cause the people around you to feel a loss of control. Loved ones may be struggling with feelings of helplessness. Chances are, they are waiting for you to ask them for help. They want to feel like they are part of your journey and contributing something of value to your fight against the disease.
You can help guide family and friends by making specific requests about tasks you need help with and emotional support that you need.
Your healthcare team—your physician, surgeon, nurses and counselors at your medical facility—are there to help you make the best possible choices for your treatment and recovery. In order for them to meet your needs, you need to trust them and feel comfortable talking to them. It is wise to seek a second or even third medical opinion. If you are unhappy with the care you are receiving, it is okay to switch physicians at any time. The National Cancer Institute’s (NCI) fact sheet on cancer centers provides information about NCI-designated cancer centers around the country. Many of the cancer centers’ Web sites have searchable directories of physicians who practice at each facility. In addition, medical organizations such as the American Society of Clinical Oncology provide online databases of physician members in your area. You can also refer to this program's website for more information.
Cancer is a complex disease, and it can be difficult at times to follow what the doctor is saying, particularly if he or she uses unfamiliar medical jargon. If you do not understand the terminology that the doctor is using, ask for clarification. If a friend or family member accompanies you to your appointment, ask them to help take notes so that you remember important information after the visit. Some offices provide educational materials that can be helpful to review after the visit to reinforce what the doctor has discussed. In addition, the CCA has a comprehensive glossary of terms on its Web site.
In addition to developing a relationship with your physician, make sure to take advantage of the services that your treatment facility has to offer. Many can direct you to financial aid and other resources during treatment, such as transportation and child care, and provide information about support groups in your area. You also can inquire whether any clinical studies are being conducted at or near your facility. Clinical trials examine innovative approaches for treating cancer, such as new therapies and combinations of existing therapies. Clinical trials are widely accepted as a way to offer high-quality, state-of-the-art medical care. According to the NCI, people who participate in clinical trials can gain access to promising new approaches to fighting disease, and they may be among the first to benefit from these new methods.
You may find that another person with cancer can best understand what it’s like and what you are going through. General cancer support groups and groups that are specifically for people with CRC allow you to interact with others who have "been there" and will not be hurt by your honesty or affected by your fears. Support groups can provide helpful tips and advice and can ease your mind if you believe you are burdening your loved ones or friends with your feelings.
Caregivers, family and friends also may feel like they need an outlet for airing their concerns and fears with people who can relate to their situation. Let them know that support is available for them as well. Groups that include both cancer survivors and family members can be found through your local treatment facility or on the Internet.
Support groups meet not only in person, but also online. Internet support groups can work well if you live in a rural area or have difficulty getting to meetings. Another benefit is that you can seek support at any time of the day or night. While Internet support groups can provide valuable emotional support, the NCI cautions that they may not always offer correct medical information. Be sure to check with your doctor before taking any medical advice.
Groups like the CCA are another information and support resource. The CCA is an organization of colon and rectal cancer survivors, their families, caregivers, people genetically predisposed to the disease, and the medical community. The CCA provides peer support for both you and the people who care about you. The organization’s Buddy Network matches people with CRC and caregivers with people in similar situations. Buddies share their personal stories about things like coping with side effects, treatment options, life after a colostomy or dealing with the emotional issues that come with CRC. You can talk with your buddy on the telephone, correspond via e-mail or regular mail, or any combination of the three. The CCA also has a chat room on its Web site and currently hosts nine live Internet chat meetings weekly, as well as special chats on specific CRC-related topics.
Cancer organizations are an important resource for finding information on treatment or clinical trials being conducted in your area. The CCA provides information about finding clinical trials and new drugs to treat all phases of CRC. The organization also provides useful information about how cancer clinical trials work and points to consider if you are thinking about participating in a clinical study.
Life with CRC is a daily challenge. As you navigate this difficult journey in life, remember that you do not have to find your way alone. Help is available for you from people who love you, from a healthcare team that has your best interests in mind, from cancer organizations and support groups that understand what you are going through, and from religious organizations and other groups that matter in your life.
Roots of Support in CRC is made possible through the generosity of Bristol-Myers Squibb Company and ImClone Systems Incorporated. Copyright © 2005. All rights reserved.
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