Pseudomyxoma Survivor Facebook Support Groups
Introduction from our Community Manager
Our groups are open to patients with pseudomyxoma peritonei (PMP), appendix cancer and other peritoneal surface malignancies and their caregivers, with the primary focus being PMP.
In order to meet the goals of this community, it’s important for Members to feel like they are in a safe place that is populated by people with shared interests. As such, we request that you read and adhere to the guidelines that follow.
We have members from all over the world and from all walks of life and from all corners of the world, covering many different characters, belief systems and ethnicities, therefore we kindly ask that the topic be kept to cancer and the support of the group and not swayed towards any religious or political persuasions.
The security setting of the group is set to private so as to protect Members’ privacy. It is a safe, secure platform in which to share diagnosis, treatment options, support, the highs, the lows and all bits in between. We ask that all Members:
- Treat others online as you would treat them in real life
- Be tolerant towards other’s viewpoints; respectfully disagree when opinions do not align
- Respect the privacy and personal information of other alumni
- Communicate with courtesy and respect
Please do not:
- Make personal attacks on other community members
- Use defamatory remarks or make false statements against others
- Post prejudiced comments or profanity
- Bully or make inflammatory remarks to other community members
Unfortunately, there will always be times in any group of this size when issues arise. If a Service User does not comply (be this in a group post itself or in a messenger chat conversation) and an escalating situation develops, they will be removed from the group to protect all involved in the situation. This is with the intention of a cooling off period for all parties concerned.
The respect to Service Users also falls into comments within posts as well as posts themselves. I can speak on behalf of us all when I say many, many hours go into running both this group, all in our spare time and we take no wage for this. We want to give back.
We welcome all. Our code of conduct exists to keep our group a safe environment and to continue its success. It is a place for mutual support underpinned by mutual respect. A major part of the group’s success is the significant contribution that support group members make by one another offering sound and supportive advice, information and a ‘listening ear’.
So, how can you get involved? Pseudomyxoma Survivor does not receive any government or statutory funding and rely 100% on voluntary donations to fund our vital work. With your help, we can continue to provide our support services and deliver this vital service to those affected by PMP, appendix cancer and other peritoneal surface malignancies.
We are always looking for volunteers to join our moderator team and for other roles, please do get in touch with us to find out more. Thank you in advance for your contributions and welcome to the family!
Community Manager for our support groups
Code of Conduct
Our group is a private Facebook group, this means that only fellow members can see the group and who is in it, and only Group Members can post and see posts. Anyone can add members to this group, but only an Administrator or Moderator can approve these Members.
As the support group is hosted on Facebook, Pseudomyxoma Survivor cannot take responsibility for any breaches of privacy that occur as a result of errors or changes on Facebook’s part. We will do our best to maintain privacy within the group but this cannot be guaranteed because we are under Facebook’s control.
To prevent ‘spamming’, the team will use their discretion when approving new members.
The Administrators of this group are Pseudomyxoma Survivor trustees and the Moderators are charity volunteers. Together they make up the Moderation team. The Lead Administrator is the trustee with responsibility for the support group.
Through the communities, Pseudomyxoma Survivor may inform you of services and activities that you may find useful, both those offered by Pseudomyxoma Survivor and by others.
Our Facebook groups are owned by Pseudomyxoma Survivor, we would respectfully request that fundraising requests are kept to the document in the files section. Pseudomyxoma Survivor reserve the right to remove fundraising posts and add them to said document.
The views and opinions expressed on this group are those of the authors and do not necessarily reflect the views and opinions of Pseudomyxoma Survivor. Advice received via the group is for general guidance purposes only. No steps should be taken relying only on it. Appropriate professional advice should be sought before any course of action is pursued. If you have an urgent medical enquiry we recommend that you contact your GP, call 111 or in the event of an emergency call 999 or attend A&E (or the appropriate services in your country).
Here to Help
Our moderation team is dedicated to upholding the standards of this Support Community, and we kindly request your cooperation in assisting us with this task. If you come across any posts or items that you believe are unsuitable, please click the three dots next to the post/comment and click the “⛨ Report post/comment to group admins” link. The moderators will assess each report and respond accordingly.
We may remove posts/comments that go against this Code of Conduct and the relevant Group Rules, add a comment to those posts/comments, close comments on those posts/turn of replies to comments. If you require further assistance with the Support Community, please contact [email protected] or get in touch with any of our community administrators or moderators.
This group will be monitored and moderated by the moderation team, who are all volunteers with Pseudomyxoma Survivor. This moderation is not available 24/7, however, unsuitable posts will be removed in a timely manner. Most posts to the Community show up right away. The screening we carry out on community activity before it goes live is rules based. These rules are decided by the Administration team. In general, we operate on reactive moderation, which means Administrators and Moderators monitor posts and also rely on our members to tell us about any inappropriate content. Moderating in this way means that we can keep the community running 24 hours a day, 7 days a week, so that support is available when you need it.We encourage all members of this group to self-moderate and be conscious of their posts, replies and the feelings of others. Anyone deemed not to be a genuine user of the group for support purposes may be removed from the group without consultation. If you have concerns about any of the posts on the Facebook group please report the post as explained above or contact the lead administrator for the group.
Moderation will cover the following topics, however, we reserve the right to evaluate each incident on a case by case basis.
Personal abuse – or negative posts (flames/trolls) towards other members are not tolerated on the Pseudomyxoma Survivor Facebook Group. Abusive messages will be deleted without consultation. The consistent criticism of a person’s comments or views will be seen as abuse. Initial offenders can expect to be issued with a warning, then a permanent ban if they continue to flout these rules. Please respect the opinions of others even if you disagree.
Questionable, swearing, foul or aggressive language, will be removed at our discretion, please try to keep this to a minimum. Such language towards other group members is prohibited.
When quoting from other sources please ensure that you quote only the section of the source on which you are commenting. Any posts that fail to meet this requirement may be removed. If you would like to make the full quote available to the group please include the link.
Please respect group Members and do not promote any products/services without disclosing your relationship with the brand and with the prior approval of the Administrators. Any posts that fail to meet this requirement will be removed. Persistent offenders may be issued with a penalty.
The Penalty System
Post Approval, Warnings or permanent bans
It is at the discretion of the Administrators to place a Member of Post Approval. An administrator will communicate a warning with you. In extreme cases, warnings or permanent bans may be issued.
- Nothing on our Online Communities constitutes advice on which you should rely. Our Communities are provided for general information purposes only. Professional or specialist advice should always be sought before taking any action relating to the living with pseudomyxoma peritonei (PMP)/appendix cancers.
- We make no representation, warranty, or guarantee that Our Communities will meet your requirements, that it will not infringe the rights of third parties, that it will be compatible with all software and hardware, or that it will be secure. If, as a result of Our failure to exercise reasonable care and skill, any digital content from Our Communities damages your device or other digital content belonging to you and you are a consumer, you may be entitled to certain legal remedies. For more details concerning your rights and remedies as a consumer, please contact your local Citizens Advice Bureau or Trading Standards Office.
- We make reasonable efforts to ensure that Our content on Our Communities is complete, accurate, and up-to-date. We do not, however, make any representations, warranties or guarantees (whether express or implied) that the content is complete, accurate, or up-to-date.
- We are not responsible for the content or accuracy, or for any views expressed in any Posts submitted by Service Users. Any such views or content represent the views and values of the relevant Service User, and do not reflect Our views and values in any way.
Protect yourself on Facebook
Pseudomyxoma Survivor would advise that you do not accept any friend requests from people you do not know as this will give them access to your private information.
Please be aware of your privacy settings on Facebook and set them to a level that you are comfortable with. Please also be aware that Pseudomyxoma Survivor has no control over other group members downloading or sharing photos. You can change your personal privacy settings as well as the settings on each photo you post to limit this, but it may still be possible for others in the groups to download and/or share individual photos. Unfortunately, there is nothing we can do about this as it is a feature of Facebook itself, not the Pseudomyxoma Survivor group. If anyone feels their privacy has been violated, we encourage you to report it to Facebook directly.
If you are a journalist, researcher or health professional with a personal connection to pseudomyxoma peritonei, appendix cancer or another peritoneal surface malignancy and therefore also a member of our group, please contact us before making a post for the purpose of your job so we can approve it. You can email us – [email protected].
Following on from the two successful patient days held at Basingstoke Hospital and The Christie, I have been busy attending meetings with Cancer52, Eurordis, National Voices and I secured a bursary place at the Public Health England Conference in Manchester in June....
The exact cause of pseudomyxoma peritonei is not known, but it typically starts as a rare type of slow-growing cancer called appendix cancer or mucinous adenocarcinoma of the appendix.
I had full cytoreductive surgery with HIPEC given. I stayed in hospital for just two weeks. I have recovered slowly although well. My main problem I have been left with is far from normal bowel movements. I now only have my annual CT scan.