Friday update 16 August 2019

Giovanna_BCNA

Member

6 years ago

Hello eveyone,

Welcome to our Friday update. I do hope that you are travelling as well as can be and staying warm.

New online community moderators

We have 3 new online community moderators who have joined our team. You may have noticed that we now have Laura_BCNA, Pat_BCNA and MichelleP_BCNA. Laura has been a member of the BCNA community events team for the last 4 years and enjoys coordinating all the logistics for our community forums and conferences. Pat and Michelle are two of our amazing volunteers at BCNA who have offered to help with some of the online moderation for an hour on the days that they are in the BCNA office along with some of the other duties they have. Thank you, it’s so great to have everyone on board!

Community Info

I have noticed recently that some members are posting their comments and questions onto the activity page and not the main discussion forum. These posts sometimes go unnoticed as people dont routinely go to these pages.

The discussion is the community heart where topics are posted, where you interact, ask, and share. For example, if you want to discuss treatment, side-effects, making decisions, giving detailed updates on your treatment etc., this would go in Discussion. Once a discussion is posted it may be edited by the author for 15 minutes after publishing, once published it cannot be deleted.

‘Activity’ is an update feed of recent activity outside of discussions on the website, which lists new member, member achievements, and show what members enter in their profile Activity boxes. You can enter whatever you like in Activity but it is best to keep it short and sweet. If you are giving a short update E.g. "Off to radio, feeling the burn!" this is better posted as Activity update rather than as a new Discussion. An Activity post cannot be edited once published, but may be deleted by their author at any time. Be aware that notifications do not appear for comments on Activity posts.

For a bit of a refresher on how to get the most out of the Online Community, go to the Community Info tab in the blue banner on your screen. You will find two threads posted there. One is the ‘Community Guidelines’ which explain the expectations and responsibilities of members and the role of moderators. The second thread is titled ‘Navigating the online community’ which assist members with the practicalities of getting stared online and posting.

Community highlights

1. Shifting priorities thread commenced by @JSN who is 2 years post breast cancer treatment and its only now that ‘everything has hit her so deeply’, feeling very tearful and confused.

2. Trying to cope alone thread commenced by @neeny who has been diagnosed with early breast cancer and is due for surgery. Great support provided by our community members. @neeny said

‘Thank you all for responding to my first post. I appreciate your thoughts and do not feel as alone now knowing there are some caring people out there. ‘

3. 6 months on Ribociclib thread commenced by @Angelo, who started the Ribociclib combo 6 months ago. Absolutely fantastic news to hear that it’s working very well for you and others!

Community news

Managing the fear associated with cancer returning or progressing

One of my colleagues attended a presentation at Peter MacCallum Cancer Centre this week about a new resource that has been developed to assist health professionals supporting their patients with melanoma to deal with the fear of cancer recurrence (FCR). The resource is called Fear-Less: A guide to coping with the fear of cancer returning or progressing. It is based on research conducted with people with melanoma but holds many similarities with other cancers including breast. The goal of the strategies in the booklet is not to remove the fears but to learn how to manage them.

Rationale for the fear-less program

FCR is one of the most significant unmet needs of cancer survivors approx. 70%.

Increased risk of FCR for survivors who have received novel therapies e.g. targeted therapies or immunotherapies (i.e. long term data re survival/outcomes with novel therapies not yet available).

In survivorship care across Victoria there is currently no model of care to systematically identify and treat FCR.

The booklet addresses:

Understanding your fears about cancer returning or progressing and how they impact your life.

Things you can do to cope with fear and anxiety generally.

Ways to manage thoughts and worries (e.g. postponing the worry, creating a worry time, naming the thought, problem solving, detached mindfulness etc.).

Information on changing the things you’re doing to better manage your fears of cancer returning or progressing (e.g. recognising unhelpful behaviours).

Information on using your support network such as family, friends and your cancer team.

If you would like further information regarding fear of cancer recurrence, The Australian Cancer Survivorship Centre has produced the following fact sheet Coping with the fear of cancer coming back (fear of cancer recurrence)

You can also call the BCNA helpline on 1800 500 258 if you would like to speak with a cancer nurse for information and or support.

Carman’s Women’s Fun Run 1 December 2019 Catani Gardens St. Kilda

Help us paint Catani Gardens pink this December in support of all Australians affected by breast cancer.

Bring your mum, sister, aunty, girlfriends and daughters to join in the fun at the Carman’s Women’s Fun Run. Each year we are blown away by the sea of pink we see lining the streets of St Kilda, all in support of Breast Cancer Network Australia (BCNA).

This year is no exception, we want to make it the biggest one yet! Bring all of the special ladies in your life together on one day for one cause and do something amazing with your Sunday morning.

Keep Sunday 1 December 2019 free because we would love to see you down at Catani Gardens, walking, running or just having fun in the event village! Register here