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Friday update 5 June 2020

Giovanna_BCNAGiovanna_BCNA Member Posts: 1,848
edited June 2020 in Community news and events

Hello everyone,

Welcome to our Friday update and a warm welcome to all of our new members who have joined us over the last few weeks.  We hope you are settling in and finding you way around. 

Breast Cancer Network Australia’s online network turns 10! 


BCNA’s online network was launched on 7 May 2010 and celebrates its 10th birthday this year.  Way back when it started the online network was set up with the aims of making greater use of technology to link and connect Australians affected by breast cancer, to increase engagement across all areas of BCNA’s work and with our members and to reach people living outside of the capital cities. Since the online network launched ten years ago, there have been almost 22,000 registrations to the network. 

Some interesting online network facts from 2019

There were an average of 110 new registrations per month with 137,000 page views

24% / 76% participation rate - This is the ratio of members who post, to members who log in.  You can see that there are around 24% of members posting and about 76% of members logging in and reading content and discussions. 

I had some feedback from an online member last year about how valuable the online network had been for her. She mentioned that although she didn't post, she gained a huge amount of value and insight from reading members posts and felt very connected with our online community.

The average response time, that is how long it takes for a post to receive a comment, was about 1 hour and 9 minutes.

The community averaged 128 new discussions per month and an average of 1900 comments per month

While most of the conversations happen in the discussion areas of our online community, groups are a great resource for our members seeking greater peer-to-peer support and we currently have the following online groups available 

Dont forget to drop into some of the groups...

  • Aboriginal and Torres Strait Islander group
  • Breast Cancer Childlessness and Us
  • Choosing Breast Reconstruction
  • Christians diagnosed with breast cancer
  • Invasive Lobular Cancer
  • Living with metastatic breast cancer
  • Let’s talk about vaginas
  • Men and breast cancer
  • Work and breast cancer
  • Young women

Here are some comments from some of our online members that were posted in past discussions

@Sister - This site has been a lifesaver as far as helping me to cope with the diagnosis and treatment and being able to ask for information from those who have/are going through it.  Ask your questions, vent your rage, reach out for understanding, and enjoy the laughs.

@Tinks - This is an amazing forum, touch base at any time, it doesn’t matter how big or small, there is a whole gang here to help!!

@ddon - You are all so wonderful. My heart is full from everyone’s kind and very helpful thoughts and advice. I would love to thank you all personally if I could. It means so much to hear from people who have walked this road before me and got through it

I was wondering if we have any online community members who joined the online network ten years ago?  If so, I would be really keen to hear from you, do you remember your first post or comment?  To our amazing group leaders,  can I ask how long you have been supporting our online community? 

Thanks everyone I look forward to hearing about some of your past community memories.

 

Community Highlights

Each week we have lots of different discussions take place in the online network. Here are some conversations that you may have missed during the last fortnight.

1. Tears in the dark @LoisLois you describe so well the fear that so many of our members have felt prior to commencing chemotherapy.  I am relieved to hear that you recovered quickly from your reaction to the medication and were able to sleep during the first treatment.  Its OK to lay down your wonder woman shield from time to time as long as you can find where you left it!  Wishing you all the best.

2. Waiting for surgery results @Lythe as all our members say, the waiting for results is the worst.  Great to hear that you had a good response to your chemotherapy, all the best to you and your sister.

3. Friday Funnies – my favourite Friday funny this fortnight!



Community News


Palliative Care Podcast

Let’s be Upfront about palliative care. To many, those two words prompt fear, and thoughts of death and dying. In reality, palliative care offers so much beyond just end of life care for those living with metastatic breast cancer; focusing on symptom management and ensuring quality of life.

In this episode, we’re joined by BCNA Community Liaison Marie Pandeloglou, who, following a breast cancer diagnosis 10 years ago, has been living with metastatic breast cancer for the past five years. Also offering their insight and expertise is Medical Oncologist and Palliative Medicine Physician Associate Professor Michael Franco.

This episode covers:

  • Palliative care as a holistic approach to symptom management involving a multidisciplinary team
  • When to access palliative care
  • The value in building a strong relationship with your palliative care team
  • Marie’s recent experience of accessing palliative care
  • The cost involved in accessing palliative care

 To listen to the podcast or read the transcript click here

 

New program opens up access to CDK inhibitor Kisquali


BCNA is today welcoming a new access program for the drug Kisqali (ribociclib). The program will allow eligible people to access Kisqali free of charge for use in combination with the drug Faslodex (fulvestrant).

The program will be open to people newly diagnosed with hormone receptor positive, HER2 - negative metastatic breast cancer and to people who have been treated with only an aromatase inhibitor for this type of breast cancer.

Read more

 

Webcast

Coming to the end of breast cancer treatment – what now?     Aired live 4 June 2020.

This webcast aired live last night and will be available shortly to view on demand via BCNA’ website.  

Moving on from the whirlwind of medical appointments and regular contact with your treatment team can feel like a sudden change of pace. It can also raise a lot of new questions and concerns.

This webcast discusses coming to the end of breast cancer treatment, what to expect, follow-up care, looking after yourself and how to manage challenges that present after hospital-based treatment ends.

Participants will hear from Dr Belinda Yeo, Medical Oncologist and Clinical Scientist and Corella Hoogendoorn, breast cancer survivor. 

Facilitator: Kirsten Pilatti, CEO BCNA

Speakers: Belinda Yeo, Medical Oncologist and Clinical Scientist and Corella Hoogendoorn, breast cancer survivor

You will need to register to watch the webcast on demand.


Some past discussion threads you may like to visit . . .

I’m going to ask our community members to post some of your favourite discussion threads! 

A couple of my favourites are by

@ kezmuc, Your day in three songs!

@kmakm On our walks!

 

This week’s reflective quote


'The more you are motivated by love, the more fearless and free your actions will be'

Dalai lama

 Enjoy your weekend everyone. Stay safe

The mod team

Giovanna, Riki, Laura, Michelle, Rosie & Pat

Tagged:

Comments

  • Jo_Ellen20Jo_Ellen20 Member Posts: 3
    This is my first Friday update and looking forward to more 😍
  • arpiearpie Mid North Coast, NSWMember Posts: 5,175
    Happy Birthday, BCNA - Thank GOD for BCNA!  This forum has been a GODSEND for thousands of men & women suffering from BC ..... Thru access to the forum - we've been able to connect with others going thru the same initial diagnosis of BC and then help others who have just been diagnosed & facing 'the unknown'.

    The cameraderie and good spirit in which everyone posts here is good for the soul & helps us over the different hurdles that we all face at one stage or another.

    Thanks, BCNA
  • StorkStork Member Posts: 112
    This is an informative and understanding blog
    Stork
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