Fortnightly update

Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 849
edited February 15 in Community news and events

Hello everyone,

Welcome to our Fortnightly update.   Hoping that this newsletter finds you travelling well, looking after yourself and staying cool in what has proven to be a very hot summer!  Thank you to everyone who responded to our request for a possible interview for our next Beacon newsletter.  Your details have been forwarded to our communications team who will be in touch.

Tagging new discussions  A gentle reminder to tag any new discussion you commence in the online network.  Adding tags to your new discussion will enable the thread of conversation to come up in searches within our online community.  When starting a new discussion, select a category and give the discussion a title.  Then type your message.  Underneath your message you will notice a text box titled ‘Tags'.  For example if your post is regarding hormone therapy, just type ‘h’ in the box and a list of tags will appear.  You can then click on the correct tag which will then be added to the tag box.  You can add more than one tag.  If you have any concerns don’t hesitate to contact me @Giovanna_BCNA.



Community highlights

1.       Dealing with emotions  

Great thread commenced by SharonP which highlights the time after treatment has completed.  How best to manage anxiety about returning back to work.

2.       Music to soothe your soul…or pump you up….or let out the rage…

Great thread commenced by KarynJ which highlights the power of music to help with managing emotions or soothing the soul.

3.       Aromasin and weight gain, now I know I’m not going mad…

Great thread commenced by melclarity regarding Aromasin and weight gain.


Community news


World Cancer Day 4 February 2019

World cancer day was held on 4 February and the theme for this year was ‘I Am and I Will’.  The aim of world cancer day is to raise global awareness of cancer, by highlighting cancer and raising our collective voices to empower individuals and governments to take action.  Click here for more information.


Host a Pink Sports Day to Play for BCNA.

 

A Pink Sports Day is a great way to show support to everyone in your community affected by breast cancer and offers a fun and easy way to raise funds for Breast Cancer Network Australia (BCNA).  BCNA provide a free support kit with posters, pink lady silhouettes, tattoo transfers, balloons and donation tins as well as pink socks and shoe laces available to purchase to help “pink up” players on the field, ground or court!  To find out more or register your Pink Sports Day to Play for BCNA go to: www.bcna.org.au/pinksportsday


Counterpart – Women supporting women with cancer.

The recent Counterpart newsletter highlighted some great upcoming events which included some webinars that you may be interested in viewing.  There has been many a discussion in our online community regarding peripheral neuropathy, a very distressing side effect of the ‘Taxane’ chemotherapy agents.  Consultant Medical Oncologist Shirley Wong will talk about this condition and what can be done to help manage this distressing side effect.   

In light of the recent online discussion regarding cannabis therapy, you may like to view the ‘Medicinal cannabis’ webinar and hear from Dr Becky Chapman, Staff Specialist in Palliative Medicine and Medical Oncology at Bendigo Health.  For more information and to register click here


Advance Care Planning Week 1 – 5 April 2019

I was recently asked about advance care planning by a caller to the BCNA helpline.  The query was about taking some control over future health care wishes and appointing a medical or enduring power of attorney who could speak on your behalf should you be unable to do so yourself.  For some this can be a very challenging topic to think about, who do you appoint to speak on your behalf and how do I complete an advance care directive?   Advance Care Planning Australia is a national program that provides information and resources for individuals, care workers and health professionals.  To find out more about advance care planning in your state or territory click here

 

Keep Shane Crawford in the Jungle!

Wow Shane Crawford is still in the Jungle!  I watched last weeks episode and he has survived another night.  We really need your help to keep Crawf in the jungle in support of BCNA!  If you can, please vote by texting SHANE to 1995 1010 as soon as you can, and as much as you can.  The prize money is a HUGE $100,000 so we really don’t want Crawf leaving the jungle because of lack of votes - especially given he's such popular celeb for the win!  We’re almost at the end of the road - this is where your votes REALLY count...!  Vote here

 

This week’s reflective quote

Inner visions create outer reality

If we want a beautiful garden, we must first have a blueprint in the imagination, a vision.  Then that idea can be implemented and the external garden can be materialised.

Dalai Lama

Hoping you have a good week.

Regards Giovanna


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Comments

  • kezmusckezmusc Member Posts: 956
    Hey @Giovanna_BCNA,

    I still never ever get anything related to the Beacon :(
  • Marianne_BCNAMarianne_BCNA Administrator Posts: 238
    Hey @kezmusc, the Beacon Magazine only comes out twice a year now (next one coming out in April). You should be getting a monthly e-newsletter, Network News, however. That is going out this week so let me know if you don't receive it. 
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,012
    I dont get the monthly e newsletter 

  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 849
    Hi @SoldierCrab
    Once logged into the online network, go to the BCNA homepage, click on the tab near your username, this will show the following 3 options

    1. account details
    2. my email preferences 
    3. log out

    Click on 'my email preferences' and update the subscriptions section to receive the Beacon and Network News.  


  • melclaritymelclarity Member Posts: 3,180
    I also don't get the Beacon, I sent my new address but nobody contacted me or followed it up and I still don't receive it, not even my e-mail. :/ 
  • AggieAggie Member Posts: 14
    Another great thread commenced during this referenced fortnight was started by @arpie on 21 January - 'Video re Mets BC....EVERYONE needs to watch it'.  It engendered worthy discussion and has, to date, garnered 3.5K views.
  • Marianne_BCNAMarianne_BCNA Administrator Posts: 238
    Hi @melclarity, I have looked into this and found that whilst we had all your updated details you had unsubscribed from receiving emails from us. I have fixed this so you will now start receiving the monthly newsletter and Beacon. 
  • melclaritymelclarity Member Posts: 3,180
    @Marianne_BCNA thank you, yes I recall stopping the e-mails, but I used to receive the Beacon in the mail, I only want the Beacon via e-mail to be honest nothing more.
  • melclaritymelclarity Member Posts: 3,180
    @Aggie absolutely a very good thread, thanks for adding that. Not everything that is posted is positive, but thats the reality of what we all deal with everyday...so I like it when people keep it real and not fluff over it. x
  • Patti JPatti J Member Posts: 337
    No comment....
  • AggieAggie Member Posts: 14
    Couldn't have said it better @melclarity, I dislike pink fluff.
  • arpiearpie Mid North Coast, NSWMember Posts: 2,018
    Thanks @Aggie  & @melclarity  ....  knowledge is power.   Know what to look for.

    Those who haven't been diagnosed with mets have no real reason to research it, @Patti J.  

    Now that we know that up to 30% of us 'may be randomly hit by it'  out of the blue, (irrespective of excellent surgery & treatment results) sadly, we need to be prepared for it.  This is a FACT


  • melclaritymelclarity Member Posts: 3,180
    @arpie I actually never needed to research it, I've known for a long time due to my own personal experiences I guess, and conversations with my Oncologist. Thing is I don't know that there is really any preparing for it...I know its a possibility for me...but so many are hit out of the blue like @Patti J so I think it was just the fact that it showed the reality of the disease that unfortunately irrespective of treatment of any kind...theres no way of knowing if you will or wont, or stopped it altogether. I dont worry about it to be honest after 8yrs and 2 diagnosis, ehhhh I just live :) otherwise Im going to waste time on things I cannot control. I do think Oncologists should be more transparent than they are. Mine was..xx
  • Patti JPatti J Member Posts: 337
    Of course there needs to be more research into why people get metastatic breast cancer. That is obvious. Knowledge is power, no matter what your condition.
    Most research dollars are spent on early stage breast cancer. 


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