Friday update 20 April 2018
Hello everyone and welcome to
Fridays update. Don’t forget that the
PBAC (Pharmaceutical Benefits Advisory Committee) will hand down their decision
regarding Palbociclib and Ribociclib so keep your eye out tonight for any
announcements. I will post as soon as I
hear any news! Fingers crossed!
We were thrilled to see the new
Beacon magazine first edition for this year come out this week. I hope you have received your copy and are
enjoying reading some of the great articles inside the magazine. Don’t forget to let us know if you’d prefer
to have your Beacon delivered via email rather than a hard copy. Just contact
our Helpline on 1800 500 258.
I would like to extend a warm
welcome to all our new online members who have joined the online forum over the
last few weeks. We hope you find this forum
a welcoming and supportive environment to post and connect with other members
going through similar experiences.
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:
What’s your favourite photo of yourself and why is that?
What a beautiful thread started by
@PatsyN, I have really enjoyed reading your personal stories and this has been
a favourite at BCNA.
This thread followed one member
who was having investigations for some cysts that were found in her breast. Fortunately the news was good! Our community responded to help support her
while waiting for her test results.
Great discussion was had regarding
the use of cold caps to prevent hair loss while undergoing chemotherapy.
In the news…
Young Women’s Think Tank
Conference
Thanks
to our partner Sussan, BCNA is hosting a young women’s conference in Melbourne
in mid-October 2018. Leading experts
will speak about the unique issues that young women can face when
diagnosed with breast cancer. Keep an eye on our website and Facebook for further
details. Sussan is also helping us to better support young women by supporting
our young women’s think tank, which will discuss key issues for young women. More information is on our website here: https://www.bcna.org.au/news/2018/03/supporting-young-women-with-breast-cancer/
Jean Hailes Annual Women’s Health Survey
Jean Hailes for women’s
health have just
released their annual women’s health survey and are encouraging as many women as
possible to complete the survey. This survey
will help them to identify the current issues and needs of women so that they can
work towards improving women’s health and their access to healthcare and
information.
The Jean Hailes
annual Women's Health Survey is one of the country's most revealing insights
into the health concerns, fears and needs of women in Australia. Results of the
online survey are used in many ways; from identifying gaps in health
information, to helping health professionals better understand their patients,
to encouraging women to make practical, positive changes to their lives. The survey is online and anonymous. Every
response counts. The more women who participate, the more Jean Hailes can
create a true snapshot of the state of women's health today. The survey
takes just 10 minutes. Please note the survey experience is optimised using the
latest version of Google Chrome as your browser.
https://jeanhailes.org.au/news/survey2018
Motherless
Daughters Australia
Will you or someone you know be facing Mother's Day
without mum? Motherless Daughters Australia warmly invited you
to a High Tea. It’s a lovely way to honour the memory of your mum and an
opportunity to connect with others. Come and join us.
www.motherlessdaughters.com.au
BCNA free information forums for people living with breast cancer and their supporters, upcoming forums
Sydney Information Forum
Thursday 3 May
Wesley Conference Centre, 220 Pitt
Street, Sydney.
Ringwood Information Session
Thursday 10 May
Karralyka Centre, Mines Road,
Ringwood, Victoria.
To register: https://www.bcna.org.au/news-events/events/information-forums/
Pink Bun campaign
After raising an incredible $1.8 million for BCNA last year, Bakers Delight bakeries will yet again come together to host the annual Pink Bun campaign, from Thursday 3 to Wednesday 23 May 2018. The target this year is $2million. During the campaign, 100 percent of the sale of Pink Buns, Pink Lady silhouettes and the Pink Bun carry bag comes directly to BCNA. We would love you to be a regular customer! Marita (Queen of Pink Bun)
2018
Pink Lady Luncheon Brisbane, call for volunteers
This
is a call out to our Brisbane members to see if anyone is available to
volunteer on Tuesday 22nd May at the Sofitel in Brisbane. Assistance is requested to collate the gift
bags for everyone attending the Pink Lady luncheon on Tuesday 23 May. If you are able to assist please contact
Chloe on cdouglas@bcna.org.au or by
calling 1800 5000 258.
https://www.bcna.org.au/events/2018/2018-pink-lady-luncheon-brisbane/
Online Q & A with Janine Porter-Steele
In case you missed our ‘live’ online Q & A session held
on Tuesday 10 April, see link below
Q&A with Janine Porter-Steele Tuesday 10 April 2018
6.30 pm AEST
If you’re not a member of the Let’s talk about vaginas
group, you will need to join to access the thread.
Hoping you all have a good weekend and have the opportunity
to rest, relax and enjoy this beautiful autumn weather!
Giovanna
Comments
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Hi Giovanna. I have been trying to get on to the Motherless daughters website. Is that possible? I have been a motherless daughter for 30 years.0
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@Patti J
here is the link again for the motherless daughters website ...Motherless Daughters Australia
Will you or someone you know be facing Mother's Day without mum? Motherless Daughters Australia warmly invited you to a High Tea. It’s a lovely way to honour the memory of your mum and an opportunity to connect with others. Come and join us.
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Thanks but everything is "Coming soon....."0
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oh it opened for me
let me see if I can open after the first page
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Thank you. That worked but it is tomorrow. Oh well, maybe next year.0
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Oops. It was today .0
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Patti J put it in your calendar for next year if you have calendar on your phone make about Month before Mothers day to prompt you to check then about when and where they are holding it....0
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I just did the Jean Hailes survey. I must admit that I'm not sure what it's hoping to achieve - it seemed very "surface-skimming" and I did feel as I was ticking some of the boxes that the answers I was choosing didn't really give an accurate picture. Maybe just my state of mind at the moment...0
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I just completed the Jean Hailes survey also. One of the questions I thought was weird and I told them so. There's an assumption that we don't eat healthy and like @sister I too was not happy with the survey in general. It was a strange survey that I felt was only harvesting information for them to bombard you with emails if you gave your email across or entered their competition.0
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I know that survey writing is a difficult thing to do as I've seen students struggle with it (as have I). I would have expected something a bit better from such an organisation, though. I certainly felt that it was not aimed at eliciting any useful information from me - maybe I'm not part of the demographic they're interested in.0
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@Sister
Oh I agree writing questions for a survey is difficult however I just felt this didn't hit the mark.
Perhaps we know too much about our own health, BC and other as a result, and hence I felt that these questions didn't hit the mark. As you say we must not be part of the demographic they are aiming at. One question was how often do you visit the GP but they didn't want to know why you may visit so often. If they had asked I would have said part of monitoring for my specialists as I am a BC patient who is in the NED category at present - I must be super sensitive! Off for blood test today to see where I am at before next round of appointments.
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Yes, and no option to explain about state of health, etc.1
