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[S]upport groups can be the difference, literally, between life and death.

Local support groups are useful for those who are able to get about easily...and enjoy face-to-face discussion....

Internet support groups offer several hundred friends available at all times of the day.

Support Groups

The following excerpt is taken from Chapter 14 of Colon & Rectal Cancer: A Comprehensive Guide for Patients & Families by Lorraine Johnston, copyright 2000 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

It would be difficult to say too many good things about the effect of a support group on a colorectal cancer survivor. In addition to the personal testimonials from people who feel they found sanity, love, and knowledge from the members of their support groups, research by Dr. David Spiegel has shown that emotional support can extend the lives of some cancer survivors.

Support groups are the one place outside of your inner circle of loved ones where you can ask or say just about anything. In some cases, you can ask help of support group members that you would be afraid to ask of family for fear of overburdening or frightening them. Moreover, the setting is sometimes freer than the family setting regarding candid speech, because everyone present understands all too clearly what you're going through.

For some, support groups can be the difference, literally, between life and death. The opportunity to exchange information with those who have already weathered colorectal cancer can provide you with the knowledge to question your treatment and seek medical help elsewhere. Support groups are an immeasurably useful way to do this, bringing together a variety of skills, including medical and legal knowledge.

Support groups are offered locally in many areas by groups such as the American Cancer Society, the Wellness Community, the United Ostomy Association, or local hospitals. Telephone support groups are overseen by several of the nonprofits dedicated to curing cancer. If you have a personal computer (PC), support groups are also available on the Internet.

Local, telephone, and Internet support groups have their advantages and disadvantages. Many people use several.

Local support groups

Local support groups are useful for those who are able to get about easily, have access to a car, and enjoy face-to-face discussion, even about topics that might be upsetting. If you're in a local support group, you're likely to have a stream of visitors if you're hospitalized, and friends to offer you instrumental support such as help with groceries or baby-sitting. Often, members trade phone numbers and form deep friendships.

The disadvantages of local support groups are that they usually contain only a small number of people, perhaps ten or less, and only meet at certain times of the week or month. The smallness of the group can affect the quality of the information shared. For example, if no group member has traveled for care, you'll have to make your travel plans with less foreknowledge. Some members of local support groups report that they feel excluded when things take a turn for the worse, as if some group members want to shield themselves from the possibility that similar bad things may happen to them, too. This is less likely to happen if the group is moderated by a trained therapist.

Internet support

Internet support groups offer several hundred friends available at all times of the day. You can communicate at 3:00 AM when you have insomnia, and you can communicate with other survivors even if you have trouble getting around for various reasons. The people you meet will be from all over the country, and in some cases, all over the world, and represent a tremendous amount of experience. Furthermore, if you're a little shy about expressing emotion in front of other people, an Internet group is a good choice because you can write a message and read what you plan to say before you decide to send it. If you need to cry, you can do so without feeling conflicted about crying in front of other people.

Many of the Internet support groups schedule in-person reunions and gatherings. Often, members form personal friendships and write private email, or trade phone numbers to form even closer friendships. Sometimes members discover that they're living quite close by, and become very good friends.

Thankfully, I quickly learned the ropes from many people on the Internet discussion group I joined. Knowledge is power. If I hadn't searched the Web first for information on colorectal cancer, I think I would have been shocked to hear I would have part of my colon removed. At least I learned that only about 5 percent of patients these days wind up with a colostomy. Whew! That was encouraging. Sure was glad I knew what to expect when I saw my surgeon for the first time. It gave me the tools to ask intelligent questions. While it may have been possible to have the surgery done laparoscopically, from what I learned, I opted for the big incision so he could really look around and see what's what, and have the Life Port implanted, and oophorectomy, as radiation would cause menopause anyway.

The Association of Cancer Online Resources (ACOR) has pointers to many cancer email discussion groups. ACOR offers a handy automatic subscription feature for these and other discussion mailing lists.

A list of ACOR and non-ACOR colorectal cancer-related Internet support groups follows. Because the Internet is a dynamic resource, this list may not be comprehensive. The number of subscribers given was approximate at the time of writing and will vary over time:

  • COLON, an ACOR discussion group for those with colorectal cancer and other diseases of the colon. This group was started by Marshall Kragen, a long time survivor of colorectal cancer and fierce defender of the rights of cancer survivors. Marshall was a member of the National Coalition for Cancer Survivorship who designed and developed the original NCCS Internet site, and was the original author of CanSearch, Internet software that helps Web users find cancer resources. Marshall died in 1998 of heart failure. About 600 colorectal cancer survivors and their loved ones take part in the COLON group discussions. See ACOR's site.
  • SICKKIDS, a discussion group just for children, but supervised by adults.
  • YAP, a discussion group for young adults age 18-25 dealing with their own illness or that of a loved one. This list was formed in late 1998. See ACOR's site,
  • Cancer-Pain, Cancer-Sexuality, and Cancer-Fatigue are ACOR discussion groups for those with cancer-related side effects and long-term effects. These groups were formed in early 1999. See ACOR's site.

The chief disadvantage of an Internet support group is that the loss of a friend can be very difficult when you cannot say good-bye in person, when you have no photographs to remind you of them, and no grave to visit. Sometimes group members simply will never hear again from another member, and they never learn what really happened. Some group members deal with their grief by creating a memorial web page dedicated to a lost friend, containing photos and examples of wisdom learned about living with colo-rectal cancer.

Other disadvantages of Internet support groups include cultural differences that cause mistaken communication and needless arguments, heavy mail volumes about topics that you may feel don't pertain to your circumstances, incorrect medical information, a range of social and communication skills, and, of course, the cost of a personal computer and access to the Internet.

A recent survey has shown that the over-65 age group is among the most active and fastest growing groups on the Internet, seemingly not reluctant to acquire the new skills needed to use a PC.

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