Resources and information for parents of children with cancer . . . by parents of children with cancer.

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E-mail lists: What to expect when you join a list

Note: This introduction to lists was written by the administrator of several pediatric ACOR lists; lists with sponsors other than ACOR might have slightly different procedures.

As soon as you subscribe to a listserve, you will begin receiving messages from all the members of the group. The listserve probably has from 50-500 members; each time a member posts (sends an e-mail to the list), that e-mail goes out to the 50-500 members.

The number of messages per day will vary, some lists deliver almost no e-mails each day, some lists deliver over 100 messages each day. Large groups tend to generate more e-mails, although a small list might have a lot of talkative members, or a large list might not have any talkative members. If you don't think that you can handle a lot of e-mails, talk to the list administrator about digest or no mail options.

The list administrator is notified each time a new person joins the list. Some administrators always contact new members via private e-mail; some rely solely on the automatic welcome message sent to new members by the list software; some expect you to introduce yourself to them via a private e-mail. The administrator is ready and able to help you and answer questions; their contact information should be in the welcome letter: Read this letter and save it for future reference. The letter might also contain the rules or guidelines for the list, any restrictions on who is allowed to join, or a link to a frequently asked questions (FAQs) web page.

Until you post to the list, only the list administrators know that you have subscribed and are receiving list e-mails. This is called "lurking". Often new members lurk for awhile until they have a good feel for who is on the list and what topics are currently being discussed. (Another way to get a feeling for the mailing lists is to search the Archives of the list you are interested in joining.) When you feel comfortable, you can introduce yourself by posting to the list. To post, they simply hit the "reply" command in your e-mail application, or hit the "compose new message" command and address it to the mailing list (as per the instructions in the welcome letter).

It's hard to describe the experience of participating in an electronic support mailing list for parents of children with cancer. The lists are an excellent source of information. Information on treatments and cancer flies across cyberspace. Often a doctor of a patient in Florida has neglected to mention that a particular flavoring will make those medications go down a little easier, but a member in Minnesota has just the answer for that parent in Florida. Or a parent in Canada has come up with a really good method for removing those band-aids that we have become oh-so-familiar with, and shares his tricks with all the members. But besides information, members also write freely of their fears and hopes, and their daily trials of having a child with cancer. Sometimes the messages are so sad that tears roll down you face as you read. Sometimes you roar with laughter at the latest antic of a member's child. But always, you find answers to your treatment questions, ideas on methods to make your child's chemotherapy a little easier, and support for the emotional burden that cancer has placed on your family.

Written by Patty, administrator ped-onc, ped-onc survivors, and ALL-kids, 3/03. If you think you might like to join one of the ACOR pediatric oncology mailing lists, but are not sure, or just want to talk to someone who is a parent of a child with a specific cancer, e-mail me (Patty).

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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