Ped Onc "Family Rules"

The following 15 "rules" are general guidelines, written by long-time P-donkers, for ways to keep the Ped Onc experience comfortable for everyone.

You might also want to peruse the ACOR rules and guidelines, which are also sent out to every new member.

Respect bandwidth

Lists with large email volumes are difficult for some subscribers to handle. People who subscribe to the digest, people who pay for online time by the minute, and people who are simply quite busy are especially effected. List courtesy directs that subscribers work to lessen both the number and the size of posts. Also help readers use their time wisely by keeping to topics and subjects.

1. Posts of general interest go on the list, and an email that is really only of interest to one or two list members should go to these individuals off list. (more)

2. Only copy the pertinent part of someone else's post in your response. (more)

3. Keep off-topic posts to a minimum. (more)

4. Keep to the subject in the subject line. (more)

4a. Bundle many small posts into one. If you want to say "way to go and congrats" to five people, do so in one post, which we call "bundling."

Other Courtesies

5. Don't bring religious beliefs to this list. (more)

6. Don't attach pictures or anything else to your posts to the lists. (more)

7. Don't criticize other's medical or other choices. We each have to find out own way.

8. Don't post stuff about alternative medicine unless you include citations to the scientific lit to support it.

9. Be kind to one another. Every list goes through periodic convulsions. But the PED-ONC list has, for years, been the funniest and nicest bunch.

10. Don't try to sell stuff on the list.

11. Don't post stuff about kids and families who aren't on the list. It can get pretty overwhelming for new families to hear about kids we don't know who are not doing well.

12. Don't print copyrighted material on the list, instead, use web links.

13. Please don't solicit cards, money, gifts etc from the list. There are just too many nice people here who will go broke trying to accommodate everyone wishes.

14. Be aware that your posts are not private. Never post your home address or phone number to the list. The above goes two ways. You should not post the email, address, or phone number of someone who is off-list to the list. If you want to transmit such information, please do it via private emails.(more)

15. You may not forward posts to the list to nonmembers or use them for any purpose without the permission of the writer.

16. If you want to talk about how much you hate a doctor or facility, please state your side of the story but NOT the name of the doctor or facility in your posts (you can do so via private email, though). A few reasons for this. One, the doctor/facility does not know that you are criticising them and cannot defend themselves. Two, other people going to the same facility/doctor may read the post and be happy with their doctors, and reading your post might make them lose confidence in their doctors needlessly. Three, remember that the lists are archived, and you never know who might be reading them in the future and what might be the motives of that person.

Fun: The Ten Commandments of Email

#1 This is not a hard and fast rule at all in ped-onc. The wonderful sense of community of ped-onc comes from people disobeying this rule. If no one ever answered other people in-group, and if people only posted to give information, we would have no way to get to know each other and care for each other.

However, if a message is truly only meant for one person, respond by private message. New members do not always realize that not only is it perfectly okay to respond privately, but that members are encouraged to respond by personal email whenever appropriate (and/or whenever they remember). It's amazing how much communication goes on off list.

If you respond to a ped-onc post by hitting the "reply" in your email program, the reply (usually) goes to the entire list by default. If you have a personal response, you will have to copy the sender's email address into a new message.

#2 If you include the whole email to which you are responding in your response to the list, it bulks up the list. In digest, this is particularly noticeable.

For instance, sometimes people will include the entire original message at the top and only after cursing down does the reader find a tiny little response "thinking of you". Instead, clip a few pertinent sentences from the original post and add your message beneath it.

#3 In Ped Onc, sometimes we get off topic, especially on "Fun" threads. As in #1, this adds to the sense of community. But as with all off topic posts, "Fun" posts should be kept to a minimum in respect for people who pay for download time and for digest subscribers. As a rule of thumb, try to keep your off-topic posting to about 20% of your total posting.

To reinforce the above, a daily per person threshold of 10 posts is set into the list set-up. This should never affect anyone, since the average heavy poster in the group averages 2-3 posts per day. If you routinely post more than 5 times per day, you are probably posting too often.

#4 Make sure that your email discusses something relevant to the topic in the subject line. Keeping to the subject is good both for you and for others. Sometimes in a thread, by the end, the content of the emails has nothing to do with the subject. People often scan the subjects to see what they want to read. It's irritating to expect to read one thing in a post and find that the subject has changed, and people will miss reading important information if they only read posts when according to the subject and information they need is in the un-related email content.

"If the subject is GEN: education plans and your post is talking about your child's blood counts, you are not posting correctly."

#5 General discussions of meditation and spirituality as coping mechanisms on the topic COPE are okay; proselytizing for any religion or philosophy are not appropriate.

ACOR is non-denominational. List-members come from many different countries and religions. Some members are agnostic or atheist. What seems very right to one group regarding religious comments in posts, may be downright offensive to another group. What seems an innocuous statement of faith to you, may be extremely inappropriate to someone else. we strongly suggest, therefore, that all statements that may be taken as doctrinaire be eliminated from your posts. If you are Christian, and wish to share religious experiences and information regarding cancer, you can might like to join the FAITH list (to discuss how religious beliefs help them through treatment) or the CPCOS list (Christians).

"Freedom of expression also means freedom from expression of something that may be unwelcome to another listmember. Please take that into consideration when you post."

#6 The ACOR lists will not accept attachments. Attachments received and sent out 273 times overburdens the servers. Attachments also can carry viruses. Therefore, the list has a 150 line limit to prevent these problems. Please note that if you send a text-only post which is over 150 lines, it will be rejected by the list software.

#14 With 300 members and the archives available through ACOR, you just don't know who will be reading your posts. PED-ONC is such a friendly group, it's tempting the think that you're chatting over the back fence, when you're really sending a message around the world.

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