Friday update Tuesday 26 March 2019

Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,244


Hello everyone, 

Welcome to our Friday update (my apologies for not posting on Friday, I was out of the office).   We have had quite a few new members join our online community over the last few weeks.  As many of you have mentioned, ‘it’s the club that no one wants to join’ but it’s great to see such wonderful peer support being provided to new and existing community members.  This is what our online community does best and it’s heartening to read comments from members

'Thank you to everyone that commented it really means a lot ' Newby24

'Again thank you for your thoughts and comments, it is great to know we have somewhere we can talk about things and with people who Get it' GavinCH

'Thanks for the words of encouragement and support'  Bris1976

'Well thank you girls for your lovely words of encouragement😊 ' Jackie50

Some housekeeping…

Deleting content:

We have recently been asked about what the process is for deleting content posted within the online community. If you have posted something and have missed the 15 minute window allowed to edit a post, please contact one of the moderators who will edit or delete the comment that you are concerned about. Additionally, if you are concerned about someone else’s comment or discussion and think it should be deleted, please check the community guidelines first. If you think it breaches the community guidelines, contact the moderators and we will review the post/discussion.

Deleting content from the discussion threads is a decision that is not taken lightly by the moderation team.   It is disruptive to the flow of conversation and moderators will only remove content if it is in breach of our community guidelines. Sometimes you may not like or agree with a discussion or post. This does not mean it should be removed.

A very small number of members have asked to have their content deleted when they decide to leave the community. We will no longer be deleting posted content when someone leaves. If you decide to leave the online community, your posted content will remain. This is not a practice in other similar online forums and as we have previously stated is disruptive to the flow of conversation and community in general.

We therefore strongly encourage members to self-moderate and to review content prior to posting. We also would like to remind you that the general discussion forum is not private and that posts may appear in ‘google’ searches.  To maintain your privacy we ask that you do not use your real name as your username and avoid posting specific details that may identify you, such as where you live etc.

 

Notifications:

We have also been asked about managing online community notifications and have contacted our developers.  We have been told if you tick notifications, you will receive notifications for all the threads that you have posted in.  There is currently no process to select which threads you would like to have notifications and which you do not want notifications. 

One way around this is within the users' profile you can edit your preferences to disable 'Notify me when people comment on discussions I've participated in' and enable 'Notify me when people comment on my bookmarked discussions' and then you can choose to bookmark and un-bookmark as you wish. 

Community Guidelines:

We are currently in the process of updating our community guidelines and will have them available online in the next few days.  As this is your community, please don’t hesitate to contact @Giovanna_BCNA or @Marianne_BCNA if you have any questions or concerns. 

 The Community Guidelines and Navigating the Online Community can be found in the blue toolbar at the top of your page titled ‘Community Info.’


Latest News

Launch of the new My Journey Online Tool 13 March 2019

BCNA were very excited to officially launch the new My Journey Online Tool on Wednesday 13 March 2019.  As you know, the tool provides you with information that relates to your own breast cancer diagnosis (be that DCIS, early breast cancer or metastatic breast cancer) and personal circumstances, so you’re empowered to make decision that are right for you. For more information click here to see the video starring some our fabulous BCNA members.  If you know someone that has been affected by breast cancer, they can access the My Journey online tool at bcna.org.au/myjourney. 


BCNA welcomes the TGAs approval of Nerlynx (neratinib)

BCNA welcomes the Therapeutic Goods Administration’s (TGA) approval of the drug Nerlynx (neratinib) as a new treatment option or Australians diagnosed with HER2-postive, hormone receptor positive (HR-positive) early breast cancer.  For more information click here


New AIHW reports highlights more needs to be done for Australians diagnosed with Metastatic Breast Cancer

BCNA is calling for more to be done for Australians diagnosed with metastatic breast cancer following the release of new statistics that show the five year survival rate for metastatic breast cancer is 32 per cent.  For more information click here


Community highlights

1. Menopause belly Great thread commenced by @Kiwi Angel with an interesting article posted discussing menopause belly, what causes it and how to fix it.  Loved the comment by @Zoffiel ‘my belly lies next to me on the bed’

 2. Newly diagnosed and overwhelmed commenced by @Penny001 who has been provided with a treatment plan and feeling quite overwhelmed by it all.  It all seems so insurmountable to begin with and best advice is to take it day by day.

 3. Sewing...does anyone sew? Great thread commenced by @jan61 about sewing for some downtime.  What great photos of some of your sewing projects!  



Community news

Common Survivorship Issues Directory

There has been lots of discussion recently within our online community regarding cancer survivorship issues.  The Common Survivorship Issues Directory from the Australian Cancer Survivorship Centre, is a directory that provides evidence based information for health professionals and people who have experienced cancer to best manage the following issues

  • Anxiety and depression
  • Cancer related fatigue
  • Fear of cancer recurrence or progression
  • Fertility
  • Issues with thinking and memory
  • Menopause
  • Pain
  • Returning to work or study
  • Sleep issues

 To access the directory, click Common Survivorship Issues Directory

 

Reminders


Understanding lymphoedema following breast cancer treatment 

Thursday 28 March 2019 click here to register


 

Dubbo Forum Thursday 4 April 20-19 to register click here


To help evaluate a new menopause study click here


This week’s reflective quote

 'Give the ones you love wings to fly, roots to come back and reasons to stay'. 

 Dalai Lama

  

Hoping you have a good week everyone, take care of you

Regards Giovanna



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Comments

  • iserbrowniserbrown Regional VictoriaMember Posts: 3,854
    Very newsy with gentle reminders!
    Keep up the good work! 
    Take care 
  • melclaritymelclarity Member Posts: 3,386
    Thanks for clarifying some things Giovanna, as I don't think all users understand that the Forum is public and their comments can be found by anyone. I think many may feel it's a private place. Cheers.
  • Jane221Jane221 Central Coast, NSWMember Posts: 1,142
    Great update @Giovanna_BCNA. Love your work! 
  • J_Jen1J_Jen1 Bargara, QLDMember Posts: 7
    "We also would like to remind you that the general discussion forum is not private and that posts may appear in ‘google’ searches."
    Does this apply to private groups?
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,244
    Hello @J_Jen1 No the private groups are 'private' and discussions will not appear in google searches.
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,870
    Good call with the deletions. 
  • melclaritymelclarity Member Posts: 3,386
    I'm not sure that's quite what was being referred to @arpie I agree there isnt room for that. There are however those who choose to leave and want their contributions deleted, that does interrupt the flow of the thread of course, but do so for many reasons. x 

    I think everyone that comes to the Forum are wanting, needing support and in turn want to give it. It's the essence of what it is all about.
    x
  • arpiearpie Mid North Coast, NSWMember Posts: 3,239
    @melclarity   There have been cases of comments exactly as I have stated - and they have not been removed even tho more than one member has asked for them to be removed - that neither contributed to the thread nor would be missed if removed.

    It is essential that posts are of support, not cheap shots at the vulnerable.
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,370
    @melclarity and @arpie I have read posts that upset me due to the way they attack others even though I am not personally being attacked. I love the support on the forum and wish there was a way to stop the insults. We will never all agree to anything except our dislike of the reasons we originally came on this forum. Love and hugs to all. And watch out those coming to the Melbourne catch up, cause I am a real live hugger!
  • AllyJayAllyJay Member Posts: 608
    Of course there are those who, having taken a shot at someone, and are pulled up on it, either by the shot-ee or bystanders,, do the Eddie Maguire thing. "Oooh no, I didn't say anything wrong or hurtful, the problem is the way it was taken...People hear one thing, and misconstrue what was said, so the fault is with them, not me." Or words to that effect. People need to take ownership of what they say or write and not hide behind the idea that some have misinterpreted the written word.
  • melclaritymelclarity Member Posts: 3,386
    edited April 6
    @arpie @Blossom1961 yes I have seen that too, and that really isn't ok from anyone, I've not been involved in those sorts of things so don't know alot. I have however been on the receiving end so I know what its like. Anyway ladies, support is key and paramount here, as everyone strives to do, even with differing opinions, super important to have tolerance absolutely. :) 
  • melclaritymelclarity Member Posts: 3,386
    @Kiwi Angel I totally agree with you and have also been the victim of that too. I too don't mind pulling anyone up but then that seems to add to it uuugh. I particularly....particularly stand up for the more vulnerable and fragile members as I struggle if I see this.
  • melclaritymelclarity Member Posts: 3,386
    @arpie I'm thankful I don't know of the discussions where this has happened to be honest, or been apart of them. There is absolutely no room for that behaviour ever! I do know where some have wanted content removed but not because it was attacking or passive aggressive at all but purely because they havent wanted their comments public. 
This discussion has been closed.