Just to confuse you! Fridays update (Monday 19 March 2018)
Hello everyone and welcome to
Fridays update on a Monday! My apologies
for any confusion; the update is normally posted on a Friday but we decided to
hold off until today so we could announce today that Kirsten Pilatti has been
appointed as the new CEO of Breast Cancer Network Australia. Many of you will already know Kirsten who has
worked at BCNA for over 12 years. See her
welcome message below
Online network teleconference
A teleconference was held last month with some of our online community group leaders and major contributors to the online community. The teleconference provided a great opportunity to speak with some of you regarding issues impacting the community and how we can best manage these going forward. Marianne provided an overview of the role/responsibilities of the BCNA’s moderators to ensure that the community is a safe and supportive place for those affected by breast cancer to connect with others who have experienced breast cancer, ensuring that information provided is accurate and that our members have access to evidence based and reputable information and resources and providing professional care and referral for members needing support beyond that of the online community. The moderators do not see our role as providing the peer support and care that the community provides. We are not peers.
We discussed moderation of the community and it was agreed that online network members welcomed some level of moderation to ensure that information was correct, for pointing new members in the right direction, ensuring that the discussion flows naturally and that conversations meet the community guidelines.
Marianne explained BCNA’s expectations of the online network; that everyone participates as community members as they wish to and within their own comfort zone, speak from own experience, offer peer support as someone who has been through shared experience, welcome new members, maintain the community guidelines through their own behaviour and reminding others of expectations.
Action items were identified at the end of the teleconference. You may have noticed some actions that have already been implemented in the Friday update such as introducing the BCNA moderators, reminding members about protecting your confidentiality when posting and making the newsletter more ‘newsy’. We are also looking at new ways of welcoming new members and providing them with the information they need to begin posting and we are currently in the process of updating the Community Guidelines.
We want to encourage you that if you have any feedback or ideas to please contact one of the online moderation team. We will have another one in August this year and will notify the online community closer to the date. This will allow further discussion and ensure that the online community stays on track.
Financial Information Forum Cancelled
BCNA has decided to cancel the financial impact of breast cancer information session to be held in Melbourne on Thursday 15 March 2018. We have received multiple enquiries from members who would like to hear this information but cannot attend in person. To help us reach more people, we are exploring both webinar and podcast options as an alternative way to share this information at a later date. We will provide an update once we have details to share. Thank you for understanding this decision to cancel this event. Please do not hesitate to contact events@bcna.org.au if you have any further queries.
New online network members
Don’t forget, you can always direct message one of the BCNA moderators if you have any questions or need any support at @Giovanna_BCNA, @Marianne_BCNA, @Rosie_BCNA, or @Riki_BCNA or call our Helpline on
1800 500258.
In the news
Over the next few Friday updates we will be introducing our online network moderators. This week its Riki’s turn. Riki was mentioned in the following post within the online network
Cancer Nurses Society of Australia member of the moment December 2017
Community highlights
Every week we have so much variety in the posts being shared in the online network. These can include questions about treatments, updates on how things are going, and celebrating milestones. Here are some popular conversations you might have missed:
Discussion with most comments
Who else can’t sleep? (110 comments)
This question, posted by an online member at 4.15 am, highlighted just how many of you are currently struggling with sleeping issues. Members provided insights from their own experience as to some of the remedies that have worked.
Struggling with my mood (53 comments)
Conversation commenced by one of our member’s highlighting the range of feelings and emotions experienced when approaching the final chemotherapy treatment. This post also highlighted the struggle our members can sometimes face to make decisions regarding breast reconstruction.
This might sound silly (43 comments)
One of our members asked the question ‘how do you lovely ladies refer to yourself after you had the operation but went through chemo and radiation?’ Do you refer to that period as ‘when you were sick?’ Not a silly question at all and great to see so many of our members respond.
Links to relevant information on BCNA Website
CDK Inhibitors
An update about the CDK inhibitors and news about the approximate number of Australians who will be diagnosed with breast cancer in 2018 have been added to the latest news this week. Don’t forget to write to your local MP or senator if you haven’t already!
San Antonio Breast Cancer Symposium 2017 5 – 9 December highlights
Latest forums
Field of Women
Field
of Women tickets are now on sale! Everyone is welcome to participate and
be a part of this amazing event as we stand hand in hand in support of all
Australians affected by breast cancer. Please use the following link for further information, to purchase
tickets,flight
and accommodation offers if travelling from outside Melbourne, frequently asked
questions and answers and a link to pre-order a commemorative Field of Women
scarf. www.bcna.org.au/fieldofwomen
Inspired Adventures
From left to right: Jon (Inspired Adventures team leader), Serena (local guide), Mary, Julieanne, Heather, Elma, Melissa, Judy, Amy, Fiona (BCNA representative), Dan (local guide).
This group of strong and inspirational women have just completed the South Island Trek in New Zealand. This group tackled mountains, river crossings, back country camping and wild winds as part of one of BCNA’s Inspired Adventures. Not only did these women trek over 150km they raised almost $50,000 for BCNA! This picture was taken at Key Summit in Fiordland National Park which is part of the Routeburn Track (one of New Zealand’s Great Walks). If you are interested in taking part in one of BCNA’s Inspired Adventures visit
https://www.bcna.org.au/news-events/events/inspired-adventures/. Upcoming adventures include El Camino, Mont Blanc, Larapinta and Nepal.
Take care everyone and have a good week,
Giovanna