Friday update Tuesday 26 March 2019
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
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.
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.
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.’
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
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
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.
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
- Issues with thinking and memory
- Returning to work or study
- Sleep issues
To access the directory, click Common Survivorship Issues Directory
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
This week’s reflective quote
'Give the ones you love wings to fly, roots to come back and reasons to stay'.
Hoping you have a good week everyone, take care of you