Tips FOR MANAGING cancer and caregiving
One of the biggest challenges for people with cancer is learning all the complex medical aspects of the disease. As the science of treating cancer has advanced, researchers have developed better, more effective treatments, which means patients have more choices than they did a few decades ago.
People with cancer know they are expected to take part in care and treatment decisions. Because treatment nowadays often takes place in an outpatient setting, it allows for greater freedom. But it also means that patients and their loved ones will spend less time with doctors and nurses and more time taking greater responsibility for their own care.
So how do you cope with this situation? Here are some tips:
- As a health care consumer, it is your right to have a good health care team that listens to your questions and concerns. Get to know all the members of your team and learn how each one helps you.
- Identify one person on the medical team who is in charge of your care and "funnel" all information through that person.
- As you visit different websites or hear about new treatments, write down questions as they arise. At your next doctor's visit, bring these questions with you so you can keep track of what you need to know.
- During your doctor's visits, take notes or ask a family member to take notes. Also ask your doctor if you can tape-record your visits. This will allow you to go back later and listen carefully to all the information presented by your doctor.
- Ask your doctor to recommend books, brochures, and websites. For tips on evaluating websites, see the box on the next page.
- Find trustworthy educational sources about your cancer. With so many opinions and sources of information, it can be overwhelming and hard to know what to trust. It is important to contact reputable organizations that offer reliable information.
Here are reputable organizations you can contact for education and information:
National Cancer Institute (NCI) - 1-800-4CANCER - website provides comprehensive information on cancer prevention, diagnosis, treatment, statistics, research, clinical trials, and news.
American Cancer Society - 1-800-ACS-2345 - offers section through website entitled, "Preparing for Treatment". Here you will find different types of treatment information and their risks and benefits, possible treatment side effects, and tips for managing them.
CancerCare - 1-800-813-HOPE - offers many publications addressing practical, emotional and medical concerns. You can find this information through their Reading Room. Additionally, they offer Telephone Education Workshops which are free educational programs to help you and your loved ones understand your diagnosis, treatment options, quality-of-life concerns, and other important topics.
Dealing With the Emotional Impact
The words "you have cancer" are frightening and overwhelming. Some people experience feelings of helplessness and hopelessness and question whether they know how to deal with these feelings. At times, people may be reluctant to tell their doctor about their concerns because they don't want to distract him or her from the primary goal of treatment.
Emotional needs vary from person to person, depending on age, closeness of family and friends, access to medical care, and other factors. It's important to remember that everyone experiences some kind of sadness or helplessness when confronted with cancer-and that many people have come through these experiences.
Life will never be the same after cancer, but it doesn't mean you stop living. There are many things you can do to handle the emotional impact of cancer.
To cope better emotionally, you can:
- Keep track of your feelings. Many people find it helpful to keep a journal or record their emotions through photography, drawing, painting, music, or other expressions.
- Share your feelings with people close to you. Sometimes, caregivers and people with cancer feel as if they are a "burden" to their loved ones by "complaining" about their problems. Remember that you are entitled to every emotion you have. Don't be afraid to share them with the people close to you.
- Tell your doctor and nurse about your feelings. Doctors understand, better than ever before, that patients are concerned about good quality of life as they go through treatment. Sometimes, people benefit from a referral for counseling or a medicine for anxiety or depression.
- Seek individual counseling with a professional. Oncology social workers, psychologists, and psychiatrists help you sort through your many complex emotions.
- Join a support group or "buddy" program. Talk with someone who has had a similar experience. Support groups help you feel less isolated. They provide reassurance, suggestions, and insight, allowing you to share similar concerns with your peers in a safe and supportive environment.
Here are resources to help you connect with emotional support:
American Cancer Society - offers support through cancer-specific programs and maintains a database of local support groups nationwide.
CancerCare - provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. Also offers support groups in-person (NYC area), by telephone, or online.
Cancer Hope Network - connects patients with trained volunteers who have themselves undergone a similar cancer experience.
Wellness Community - provides in-person and online support groups for patients.
Cancer-specific organizations (click here to find such organizations) usually offer support group information. Many of these organizations also offer "buddy" or matching programs, which bring people together for mutual support.
Caring Advice for Caregivers: How Can You Help Yourself?
Being a caregiver can be a full time job. Focusing on your own needs is an important part of that job. Here are some ideas on how to cope with the challenges of caring for your loved one as well as yourself.
- Organize help: Decide which of your loved one's needs you can or would like to meet on your own, and which you could use help with. Then ask friends, family members, neighbors, co-workers, or professionals to share the care. Ideally, many people will want to help. Realistically, you may find only one or two, but those people can make a difference. Also, check with community agencies, religious institutions, or your hospital social worker for information on volunteer and respite care programs.
- Seek support: Attend a support group for caregivers. Talking to other caregivers who will understand how you feel and share how they are coping with the same situation can help you feel less alone. Individual counseling provides you with an opportunity to explore some of the complexities of being a caregiver and managing/preserving your own daily routines.
- Become informed: Use your health care team for support. Speak to the doctor or nurse with your loved one's permission. Create a list of questions, and write down the answers so you can refer to them again. Ask who else on the health care team is available to you (for example, an oncology social worker, oncology nurse, pharmacist, etc.)
- Understand your rights: Be aware of the Family and Medical Leave Act. Most employers are required to provide up to 12 weeks of unpaid, job-protected leave for family members who need time off to care for a loved one. For help with insurance rules and regulations, contact an insurance company case manager. Many insurance companies will assign case managers to help you manage insurance concerns, clarify benefits, and suggest ways to obtain additional health-related services.
- Do something good for yourself: Plan a few moments for yourself, even if it's just a walk around the block. Treat yourself and give yourself rewards for the work you do.
© 2006 Cancer Care, Inc. Reprinted with permission.