About. I also have a private Facebook group. This is a chat site for discussions about Living with Neuroendocrine Cancer. It’s for international patients and their primary caregivers/carers/supporters, for any type of Neuroendocrine Neoplasm (NEN) – a term combining Neuroendocrine Tumours (NET) and Neuroendocrine Carcinoma (NEC). The owner may also invite carefully selected medical professionals to join. Regardless of who posts or comments, nothing in this group should be considered medical advice.
The group can be found here.
Disclaimer. Check out the disclaimer which is applicable to all – click here.
What we do. This is a support and education group. It’s not designed to run like a standard Facebook patient forum. This is a group where people can feel safe and not be bombarded with too much unsubstantiated information and unrelated ‘Facebook tat’ you may see elsewhere. We focus on important things that really matter to patients and their supporters.
What we don’t do. We don’t do the zebra/unicorn/peacock thing, we are people in this group. Nor do we do the ubiquitous and junk mail stuff such as quotes/memes/GIFs. This group also discourages the spreading of cancer myths including those specific to Neuroendocrine Cancer. If you have come to this group to call people by the name of an animal and you want to see masses of Facebook ‘tat’ and cancer myths, then you’re in the wrong place and should leave.
The Detailed Rules.
3. Healthcare professionals who are also NET patients are in the group as patients. Healthcare professionals (patient or not) must remember that any contribution made reflects the fact that they do not know the detailed medical circumstances of those asking questions.
4. All posts will be filtered, authorised and where time permits, scheduled to make sure people get time to react to each post if they wish. People do not need my permission to post but posts which are not in adherence to these rules will not be authorised and the poster will be informed which rule is not in compliance. There may be gaps due to time zones, please be patient, there is no need to repeat posts because you think it did not work.
5. The subject of any post and subsequent discussion is expected to be NET education including support for those wishing to learn from others. Venting and complaining needs to be balanced against the purpose of the group and these rules. Just venting and complaining without a learning and support element is not really what I set up this group for. No personal videos please.
19. All posts are monitored, and admins will delete posts and comments that are out of compliance. After reading these rules, if you think this group is not for you, kindly remove yourself. If you remain, it is assumed you will adhere to these rules.
20. Please respect everyone’s privacy. Being part of this ‘closed’ group requires mutual trust. Authentic, expressive discussions make groups great, but may also be sensitive and private. No screenshots are to be taken and posted elsewhere – what’s shared in the group should stay in the group.
21. Summary of what is not allowed. As you would expect, this will be a group for support and educational purposes. These posts are not accepted:
A. Accepting lots of the usual ‘tat’ and ‘junk’ posts I see on other groups.
B. Drama – people arguing beyond what appears to be civil.
C. No Memes including those inspiration quotes that seem to pervade the internet.
D. No Zebra, Unicorn, Peacock stuff including inferring via a theme, emoji or internet link i.e. if you post a internet link (url) and it by default displays something against the rules, that will also be removed. This is a progressive group, not stuck in the 1980s, and is focused on what matters to patients.
E. No myths – e.g. no unsubstantiated claims of what prevents or causes cancer (including NETs). e.g. miracle cures which have no scientific base for treating cancer and in some cases, have been scientifically debunked or banned from sale because they are dangerous – therefore do not post about this please. e.g. cannabis conversations due to the aforementioned ‘miracle cure’ claims, circular discussions; and legal situation in many countries.
F. No coloured or themed background posts please.
G. No politics.
H. Posts simply asking for prayers (i.e. soliciting prayers). In response to a post, if people want to offer prayers on their own validation, that is acceptable, but people should not feel pressured in doing to. Our experience is that people who want to offer prayers will do so without being asked. Others will offer other types of support. Please do not solicit prayers.
I. No fundraising or ‘GoFundMe’ activities please, there are plenty other places to do this.
J. No coronavirus or vaccine questions until the site owner inform you otherwise (including in comments). This is a support group and clearly this is a discussion to have with your own doctor. We have an all-encompassing post to this effect in the Group Announcements and still every day we get 2 to 5 posts asking if the vaccine is safe with NET. Please read it as you cannot expect any other patient or supporter to give you a 100% accurate answer in respect of your own situation. We want the support and the focus of the group to be on NET and not be superseded and taken over by controversial discussions.
I will personally monitor this group closely to make sure it stays on track for what it is intended to be and not turn into yet another unmanageable support group. There are many of those out there. I know this group isn’t for everyone, so I want to make sure everyone knows what we do here, and what we don’t. Remember, being part of a cancer group is a privilege, not a right. The following link provides some guidance to get the best out of this group – “How to use the group”