Friday update 5 April 2019
Welcome to our fortnightly update. A big welcome to all our new members who have joined our online community over the last few weeks. It’s been a busy few weeks here at BCNA with some major new announcements.
Before we get into the announcements, I need to do a bit of housekeeping. We have recently had an update to our website and you may have noticed that when you enter your online community username and password, you are redirected to the image below (with your username)
Click on the ‘Sign in with BCNA’ and you will automatically enter the online forum. We are currently working on this issue and will keep you posted as to when it has been resolved.
Also, if you are having trouble logging into the online network via your personal computer, check which browser you are using. The online network is not supported by Internet Explorer. Internet Explorer is an old browser which Microsoft has stopped supporting since 2018. If you are having problems, try other browsers such as Chrome, Firefox or Microsoft Edge.
Metastatic breast care nurses
What great news from the Australian Labor Party, announcing to pledge funding for an additional 24 metastatic cancer nurses if elected. This acknowledges the need for further support and information required by Australians who are diagnosed with an incurable cancer. This is something that BCNA have been lobbying for for some time
“We want to make sure that all Australians who are dealing with this difficult diagnosis get the support they need to navigate our complex health system and manage the challenges of living with a terminal illness.” BCNA CEO Kirsten PIlatti
Its great to see labor's initiative, see here for more information
Palbociclib (Ibrance) to be added to PBS for Australians with metastatic breast cancer from 1 May 2019
The CDK inhibitor Palbociclib (Ibrance) will be listed on the PBS as a first line treatment for people newly diagnosed with metastatic hormone receptor positive, HER2-negative breast cancer from 1 May 2019. While this is good news for some people diagnosed with metastatic breast cancer, our concern remains for women and men seeking access to a CDK inhibitor as a second or later line treatment. BCNA will continue to work on this issue so that all Australians living with metastatic breast cancer have access to this important drug. For more information Click here
Field of Women
awarded Cause Related Event of the Year at the National Meeting & Events
Australia (MEA) Awards in Brisbane.
BCNA is very excited that Field of Women won this award as it acknowledges all the hard work that Peter Jones and his team, the BCNA team and all our wonderful volunteers put into making the day such a success. What an amazing day to see 12,000 women, men and children come together to form the Pink Lady on the MCG in support of Australians affected by breast cancer. A powerful display of strength, courage, commitment and camaraderie by all and certainly a day to remember.
This thread was commenced by @Kat09 who had her yearly check-up and was expecting everything to be ok. Some anomalies found in her scan led to a biopsy under her arm and ‘waiting’ for results over the weekend with increasing levels of anxiety. So many great responses of support from community members including
‘Distraction is the key. Enjoy your weekend and best wishes for results that show your team has been cautious. Take care. Perhaps a massage may help’ Iserbrown
We were sorry to hear that the cancer has returned in your lymph nodes @Kat09. Your team have been very thorough and we wish you all the best with your upcoming treatment.
Great thread commenced by @Pinkcloverss who was about to start chemotherapy and keen to get advice on how to keep running a household with a toddler while undergoing treatment. Our community responded with some great practical information and tips as well as support and encouragement. This thread high lights the real day to day challenges of many women diagnosed with breast cancer. We hope all is going well with your treatment @Pinkcloverss.
Great thread with some very inspiring quotes, see the latest post by @LucyDee
'Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow'
- Mary Anne Radmacher
Lymphoedema webinar now available to view
The link for the lymphoedema webcast Understanding lymphoedema following breast cancer treatment is now available. If you have already registered, you will just need to add your email address and then watch the webcast. If you didn’t register, you will need to complete the registration process, once complete you will be able to view the webcast. This is the first in a series of two webinars. The next one will be in May. View here
National Advance Care Planning Week 1 - 5 April 2019
Your life. Your voice. Your choice.
Advance care planning enables people to have a say in the medical care
they receive if they become too unwell to speak for themselves. It gives
them options and a voice, regardless of what the future brings. While advance care planning is important for everyone its particularly important for people living with cancer. Our experience tells us that it is much easier to have conversations
about the end of your life when you are well. Breast Cancer Network
Australia is encouraging women and men living with breast cancer to
start these conversations today. For more information see here
Pink Lady AFL Match Sunday 4 May
Families wanting to get along to the Pink Lady AFL Match in Melbourne this year should pop Saturday May 4 2019 in their diary. Melbourne V Hawthorn at the MCG – 1.45pm game. Tickets are available from Ticketek.
2019 is a Pink Lady Match not a Field of Women. The players wear pink socks and Melbourne players run through a pink banner and guard of honour of Melbourne football club members who have been affected by breast cancer. There’ll also be donation collections and merchandise sales on the day in support of BCNA but not the thousands of people on the field creating the pink lady. The Field of Women happens only every 4 years.
Research surveys online
At BNCA we are aware that there is lots of great research taking place nationally. If you do come across research surveys or questionnaires that you would like to let the online community know, please contact myself or Marianne at BCNA. We have a process that we follow with our policy team to ensure that the research is evidence based, ethics approved and suitable for our members. We are most happy to review any information that you think would be good for our community to know. Thanks for all the great support!
This week’s reflective quote
“An open heart is an open mind.”