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Coping with colorectal cancer (CRC) is a journey, not only for the person with the disease, but also for the individuals who care about that person. Throughout this experience, you can gain strength by providing help and hope. In fact, you may find that offering your support during this challenging time can be as beneficial to you as it is to the person facing the disease. It can help ease your fears and give you a sense of purpose. Although there will be ups and downs ahead, remember that you are an invaluable asset to your loved one in the fight against CRC.
Whether you are a family member, friend, neighbor, co-worker or other source of support, your help is valuable, and there are many ways you can provide assistance.
Doing something small, no matter how insignificant it may seem to you, can make the life of a person with CRC a little easier and a little brighter, knowing that someone cares and wants to help. It will help you, too, by giving you something to focus your energy on and by easing feelings of helplessness you may be having. A recent survey conducted by the Colon Cancer Alliance (CCA) of people living with CRC or caring for someone with the disease, found that "little things" such as helping with errands, household chores and childcare accounted for the greatest level of support provided by loved ones.
Take cues from your loved one to determine what kind of emotional support he or she needs at any given time. It’s natural for you to be unsure how much or how little to talk about his or her health, so don’t be afraid to ask, and express that you are ready to listen or provide advice. Open, honest communication is important in any relationship, and that doesn’t change because of cancer.
It is not always easy for someone to ask for help, so start by observing what is going on in your loved one’s life and determine how you can best help. Give examples of tasks you can do or emotional or financial support you are willing to provide so that it becomes more comfortable for your loved to make specific requests.
Companionship offers comfort, as does a phone conversation or letter from a long-distance friend or relative. A shoulder to cry on or an ear to listen might be exactly what your loved one needs from time to time. On days when he or she may not want to talk about health issues, try spending time doing activities that the two of you have enjoyed together in the past, or plan an outing to explore someplace new.
Every person is different when it comes to sharing news about their cancer.
Although your loved one or friend may talk openly with you about many things,
discussing
a cancer diagnosis, the results of a new treatment or news that cancer has
spread can be understandably difficult. Don’t feel that you are not important
if you have been asked to participate in a group meeting to hear such news.
Group settings can make it easier for everyone. You will have the company of
those around you as you adjust to the news and someone to talk to and share
your feelings with after the meeting. If you feel comfortable, volunteer to
make calls to family, friends, neighbors, co-workers, or anyone else the person
with CRC wishes to share the news with. Honor requests regarding whom to tell,
even if it means not telling someone you think should know.
LITTLE THINGS THAT CAN MAKE A BIG DIFFERENCE
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If you are planning to accompany your loved one to his or her doctor’s appointments, start by sitting down together and developing a list of detailed questions for the doctor. Bring the list with you to the appointment. The types of questions will depend on the person’s case. Do not hesitate to ask any question you or your loved one may have. A list of common questions people ask their physicians is available on the CCA Web site in the Patient Support section under “FAQs for Patients.”
At the doctor’s office, you can help ask questions and take notes on the answers. Even if you live out of the area, you can still help research and prepare questions and discuss them with your loved one by e-mail or over the phone.
Deciding whether or not to keep working can be a difficult choice for people with cancer and will depend on how they are feeling physically and emotionally. As a co-worker of a person with CRC, you can provide moral support and advocate for fair treatment at the office. You can also be a good listener.
As a close colleague, you may wish to provide additional support to ease your friend’s burden. For example, if he or she has to take more days off than usual because of illness, doctor’s appointments, tests or treatment, you might consider talking to your human resources department about donating your sick time or vacation days to your colleague. If appropriate, you also can help your colleague understand the company’s benefits package, and sit down together to discuss the pros and cons of his or her decision to continue working, modify his or her work schedule or take a leave of absence.
The healthcare team centers around the patient, with everyone involved — including you as a support person—doing all they can to ensure that he or she is educated and comfortable every step of the way. It’s important to make sure your loved one is at ease talking with the physician, and if not, to help him or her find another doctor. 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, don’t assume that the patient does. It is important to ask for clarification. 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 physicians, staff at the treatment facility can direct you and your loved one 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 the facility. Clinical trials examine innovative approaches, 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.
Family and friends are an invaluable source of strength and support, but your loved one may feel the need to hear from others who have “been there.” Support groups are another resource for people living with CRC and can help if you feel like you can’t truly understand what your loved one or friend is going through.
Support groups specifically for caregivers can be a valuable source of advice
and may help give you a sense of comfort or relief. It is natural to feel
overwhelmed
at times. You may find it helpful to discuss your own concerns about how
CRC is affecting your life, such as changes in your relationship, financial
worries, or feeling unable to always be strong and supportive for the person
who has cancer. Groups that include both cancer survivors and family members
also are available and can be easily located through the patient’s
local treatment facility or on the Internet.
Support groups meet not only in person, but also online. Internet support groups can work well for people who live in rural areas or have difficulty getting to meetings and for those who wish to 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 the doctor before taking any medical advice.
Groups like the Colon Cancer Alliance 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 your loved one. The organization’s Buddy Network matches CRC patients and caregivers with people in similar situations. 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 also are an important resource for finding out information on clinical studies in your loved one’s area. The CCA provides general information about how cancer clinical trials work and points of consideration for people who are contemplating participating in a clinical study. Organizations like the CCA also are a good source for the most up-to-date information about treatments for all phases of the disease.
When your life has been touched by CRC, it is not always easy to be hopeful and optimistic. Some days will inevitably be more difficult than others, and setbacks may occur. But it is important to remember that help is available for you and your loved one 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. You and your loved one do not have to go through this difficult journey alone.
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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