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Friday Update 2 February 2018

Giovanna_BCNA's avatar
Giovanna_BCNA
Member
8 years ago


 Hello everyone and welcome to Fridays update.

 As most of you would have read, there has been lots of discussion lately in the online forum regarding The proposed Beacon Magazine name change to ‘Pink Lady’.  Thank you for all your comments, feedback and discussion which we have taken on board.  A response to this thread was posted by Christine Nolan Chief Executive Officer of BCNA regarding the name change which stated

‘Over the past 18 months, BCNA has conducted more than 3,000 interviews Australia-wide with women and men affected by breast cancer as part of the State of the Nation project. These interviews have helped paint a picture of the issues that exist for Australians affected by breast cancer and confirm where BCNA should be focusing its attention as we move into our 20th anniversary year.  After listening to members, we know there are different levels of engagement with the magazine and we are keen to ensure that that the magazine remains relevant for all Australians affected by breast cancer.  With this in mind, we feel that after 81 issues of The Beacon it is time to freshen up its look with a new format to refocus its content and create a better reading experience.  The name change coincides with the launch of the refreshed magazine.’  

As a result of this discussion, a survey has been sent to all our members.  See link below to the survey.

Should The Beacon change its name?

http://onlinenetwork.bcna.org.au/discussion/18031/should-the-beacon-change-its-name/p1


We have had a great response to the suggestion of having an online Q & A on our ‘talking about vaginas’ group regarding the physical and emotional impact of cancer treatment and menopause and are in the process of organizing for a speaker, date and time to be advised.

http://onlinenetwork.bcna.org.au/discussion/17851/online-q-a-session#latest

 

The online network has had 60 new members in the last month.  I have listed the usernames below and extend a very warm welcome to all of you!

@Japa, @SoulSearcher, @Lemonade, @Angelar, @arpie, @Sylk, @mjasim,@Larabar, @RachelG56, @aprilw, @Tuppie, @Pixiefairy, @Clouise, @Sonda, @Julesjourney, @Jamollem, @CherylMcl, @EJs, @Jodienb, @Eastmum, @Ralongin, @Kayesharon, @Flozza105, @Coungry girl70, @Roxanne, @EmJ, @traceyl0309, @Jenpri, @Cheers, @Arhaz, @Magpie, @Lvlw, @Gladiolus2017, @LeeLeeV, @Yogibooboo, @darls79, @Camden, @Chez16, @shaunatest, @Claire43, @galaxidil23, @ Limac, @kat2017, @Moondeer, @greenfrog6, @KeelyB, @Token27, @Biddymcfinnis, @ycdai319, @klee21657, @Lisa67, @Mum4ever, @Scooter, @JOY3217, @Alisonc46, @Chipo, @Lorraine S, @Red, @JodieAnne, @redongreens,

Here’s some information to get you going online...

Community guidelines

http://onlinenetwork.bcna.org.au/discussion/14115/community-guidelines#latest

The what and how thread

http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1

And 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, @Tracey_BCNA or @Riki_BCNA or call our Helpline on 1800 500 258.

 

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:

Is that right? Did you really say that?

http://onlinenetwork.bcna.org.au/discussion/17916/is-that-right-did-you-really-say-that/p1

 Remember why were are here

http://onlinenetwork.bcna.org.au/discussion/17998/remember-why-we-are-here/p1

 

In the news….

Our first forum for this year will be held in Ballarat, Victoria on Tuesday 27th February 2018. 

The forum will be relevant to you wherever you are in your breast cancer journey – from a recent diagnosis through to survivorship following end of treatment – and will highlight the medical, physical and emotional aspects of living well with breast cancer. Topics include latest treatment, communicating effectively with your treating team and managing side effects such as sexual health, fatigue and menopause.  There will be a separate session for people living with metastatic (secondary, advanced, stage 4) breast cancer.

Speakers:

  • Heather Francis, Medical Oncologist
  • Jane Fletcher – Health Psychologist
  • Raelene Boyle AM MBE, Olympian and breast cancer survivor

Register via BCNA’s website www.bcna.org.au/forums or call 1800 500 258. Register early as places are limited.


BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further information or support please call 1800 500 258.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

Take care everyone and have a great weekend,

Giovanna

Published 8 years ago
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  • Rosie_BCNA's avatar
    Rosie_BCNA
    Member
    8 years ago
    Hi @ShazS, @Barney74, @onemargie, 
    For years BCNA has heard from our members about the out-of-pocket costs they incur during and following breast cancer – we know these costs are a great source of stress and can result in financial strain for women, men and their families. We now have an opportunity to raise our concerns through the newly appointed bill shock government committee. We are joining with Consumers Health Forum of Australia to ensure the committee understands how bill shock affects thousands of Australians year after year. Help us make a difference by completing the survey below! You can also share your story about out of pocket costs by sending it via private message or emailing policy@bcna.org.au. These stories will help us illustrate the extent of the problem and shape solutions to this health policy dilemma. Take the survey at https://chf.org.au/out-pocket-pain
    By completing the survey, you are sharing your voice and informing the Consumer Health Forum rep who is a member on the bill shock committe. Please connect with policy@bcna.org.au about your individual stories. The personal impact is really powerful when dealing with government and connecting with your local MPs is also an effective lobbying tool. 
    Rosie 

  • Giovanna_BCNA's avatar
    Giovanna_BCNA
    Member
    8 years ago
    Hi @ShazS,
    Thanks for your message. The financial impact of having breast cancer survey can be filled in by any of our members regardless of where treatment was given.  We are keen to hear of your experiences and are aware that many of our members experience out-of-pocket costs for their breast cancer treatment and care. These costs can be a huge source of stress for women, men and their families.
  • Barney74's avatar
    Barney74
    Member
    8 years ago
    I was lucky i have income protection thank god as my hubby hasnt worked much due to lack of work .
  • onemargie's avatar
    onemargie
    Member
    8 years ago
    I’m hearing you love.  Trust me I’m doing what I can to do something anyway xx
  • ShazS's avatar
    ShazS
    Member
    8 years ago
    Good on you Margie all you have mentioned is true . Also I was told people get there super for paying off credit cards, I do know people getting the money for lap band. We have fuckin cancer and since the diagnose our whole world has fallen apart emotional, finacinally , is the biggest impact. Why are they doing a survey for health members and the out of pocket money we should be included we are just as effected as anyone . The people who are sole income earners how do they cope like us just about to sink due to no help. The government need to bring leglastion to as you said loan us money interest free till we can get back on our feet. Come on people lets do a petition or does anyone have any ideas happy to hear from you . 
  • onemargie's avatar
    onemargie
    Member
    8 years ago
    Hi there @ShazS I have written to my local federal and local member about the same issues and you would of read my post on not being able to access super as breast cancer is considered life threatening but unless you are considered terminal there is no help. As you know our situation was I thought I had income protection thisis at the tribunal now) but didn’t hubby kept working to help keep our heads above water (barely) and unless you are on a Centrelink benefit for a minimum of 26 weeks you are not considered to be in financial hardship and can’t access your super to pay your bills And we couldn’t get anything from Centrelink as the threshold is less than the minimum wage and the average working family earns more than that and If my husband gave up work we would of only be entitled to Newstart each and that is pitiful and we would of lost our home believe me we are just working class don’t have fancy or expensive cars or home but if you have worked your whole life and paid tax you don’t get any help from the govt. and also to claim your super to pay your mortgage you must be in a position where the bank is about to take your home which destroys your credit rating and have no money left in the bank and have exhausted all options to pay it. So if you have no money left in the bank as you’ve had to try and live off it as you are on one wage how are you supposed to pay anything let alone your mortgage. I couldn’t access super on medical grounds either as my treatment was available in the public system or compassionate grounds as I wasn’t terminal (im grateful for that) but I’ve heard recently patients where I work accessing their surgery for lap band surgery and one even has access for her breast augmentation (cosmetic reasons only) so Im fucked if I know why they can access it for that and we have to live off the skin of your arse hey. Then There was the guy who claimed his super for financial hardship (he was on a benefit as a student for the min 26 weeks required) and got to use it for surgery for his dog!! I can’t access it for my breast reconstruction either as that’s available through the public system as well despite the fact that in qld the wait times are minimum 3 to 5 years. I’ve been a category 2 (3 to 6 month wait supposedly) for 20 months and I won’t see a surgeon for at least another 6 months then at least another 18 months to 2 years for surgery but they just say it’s govt policy and that’s why you can’t access it. When I wrote to the MPs I suggested access to a temporary DSP for bc survivors and then for it to reviewed for long term if needed, amongst other things  or access to a interest free loan like one is available to apprentices to use as they wish (they get 20k) can you imagine how much that would help bc survivors or anyone with a life threatening illness and their families!! So I’m still advocating for these suggestions and am in regular contact with my federal MP too. Margie xx
  • ShazS's avatar
    ShazS
    Member
    8 years ago
    Hi Giovanna , I just done a survey about the financial  impact having breast cancer has on the whole of our surviving this journey. Does this cover those of us who go public and still have to pay for radiotherapy , scripts ect. When your first diagnosed you go into total shock everything moves fast and once you come back to reality you realise how much this has impacted not only your health, wellbeing, can't work and the biggest the financial effect we are so struggling. I applied for all I could through Centrelink to no avail yet breast cancer is a disability I asked is there and financial help for people with breast cancer no. Why is there no help for us who and where can we go to fight its to help save our homes that we have worked and paid out taxes yet we can't get any help back. This needs to change no just for me for all the people who are going through this situation. Has this been put to the Government ? Can we start a petition any ideas people. This is so sad we are sick can't work just staying above water for now but for how long. Kind Regards Sharyn 
  • Lvlw's avatar
    Lvlw
    Member
    8 years ago
    Hello Giovanna, thank you so much for these links and for your welcome!  :)
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