Friday update 5 June 2020
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 137,000page 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.
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
Comments
-
This is my first Friday update and looking forward to more 😍1
-
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, BCNA4 -
This is an informative and understanding blog
Stork2
