Community update 31 January 2020

Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,407
edited February 13 in Community news and events

Hello everyone,

Welcome to our first community update for 2020.  Wishing all of you and your loved ones a very Happy New Year.  I hope that you were able to enjoy your Christmas & New Year break, spending time with loved ones, enjoying some of the festivities and hopefully relaxing and looking after you.


A big thank you to all of our group leaders and major contributors who were able to log in from time to time over the festive season to ensure that any new members were welcomed online and that our existing members remained well supported. 

A very warm welcome to all of our new members who joined our online community over the last month, like many of our members say ‘it’s the club that nobody wants to join’ but once here you will find a friendly, welcoming community providing peer support and information. 

For your information, the Community Info tab in the top blue navigation bar has information that can help you navigate the online forum and our community guidelines.  You can read current and past threads by other members or post questions or comments in the main discussion forum.  You are also welcome to visit some of the other groups that are available and contribute to the recent discussion threads.  The following groups are open to all community members.

  • Christians diagnosed with breast cancer
  • Young women
  • Invasive lobular cancer
  • Work and breast cancer

There are some private groups within the online forum that you may like to join. To access one of the private groups you will need to send a request to join.  Once your request has been approved you will then be able access the group, read posts and commence discussions.

  • Aboriginal and Torres Strait Islander people
  • Breast cancer, childlessness and us
  • Choosing breast reconstruction
  • Living with metastatic breast cancer
  • Let’s talk about vaginas

If you are unsure of anything online don’t hesitate to contact one of the community moderators i.e. myself Giovanna_BCNA, Riki_BCNA, Laura_BCNA & MichelleP_BCNA.

As you know, we have a large online community with members from all over Australia.  BCNA would like to reach out to support any members diagnosed with breast cancer who have been affected by the current bushfires crisis.  If you or someone you know with breast cancer has been affected and is experiencing distress as result, don’t hesitate to call our helpline on 1800 500 258 to speak with one of the cancer nurses.


Community highlights

1.       ……And, were back

Thread commenced by @eightdays who accessed our online community 5 years ago with her initial diagnosis of breast cancer.  @eightdays, I am sorry to hear the news that your breast cancer has returned in the same breast, devastating news for you and your family.  I hope you have recovered well post-surgery and that you are feeling well supported and in a good space to be able to make treatment decisions going forward.

@eightdays posted

‘I'm not sure what I need. Perhaps a reminder that I can do this over again. It feels hard second time around, and scary because we thought we had it sorted’.

‘While I am a professional who works in the mental health field and am pretty stable most of the time, I feel low and particularly uncertain about things ahead. It’s not a good feeling’.

@melclarity posted

eightdays I just wanted to reach out and tell you...YOU absolutely can do this again. I've been through a recurrence at the 4yr mark and have now reached my 5 year anniversary this week. To say gutted for the 2nd diagnosis is an absolutely understatement, so I say vent away!!! I also did everything right they still don’t know how it’s possible I had a recurrence, but I did in the scar tissue of the lumpectomy even after radiation and 4yrs on tamoxifen uuugh!!! I was LIVID!!! I sure did not know how on earth I was going to do it all again and yet I did…one step at time. Had I looked at the long road I would never have gotten through it.

We hope you are travelling well @eightdays and wish you all the best with your treatment.

  

2.       Need suggestions for instant relief from cording

Thread commenced by @nadi who noticed a worsening of her lymphoedema symptoms post a cut to her hand and severe cording and distress.  Luckily nadi sough quick medical attention and was admitted to hospital for the treatment of her lymphangitis with antibiotics.

‘I guess it's a good lesson for others. If you have cuts on your hand, then lymphedema and a cord, and your cord gets suddenly more painful than usual and then your skin gets red and mottled get to a doc quick. The specialist doctor just told mottled skin is an early sign of cellulitis and sepsis and lymphedema puts us at higher risk of infection. I also had a fever of 38.5 and didn't know it.’

 

3.       I made my 5 year milestone from my 2nd diagnosis

@melclarity, wonderful news, wishing you well!

 

Community news


Together Towards Tomorrow Conference, Perth WA

Our first community information forum for this year will be held in Perth, Western Australia.  As with past information forums there will be two sessions that will run concurrently on the day, one session for people diagnosed with early breast cancer, and a separate session for people living with metastatic (secondary, advanced, stage 4) breast cancer.

The conference program will be followed by a Pink Lady Tribute Field Ceremony, social drinks and nibbles from 4 – 6 pm in the Summer Garden at the Perth Convention and Exhibition Centre.

Registrations will open in a couple of weeks, please keep an eye on our website!

Date: Saturday 28 March 2020

Venue: Perth Convention and Exhibition Centre, 21 Mounts Bay Rd, Perth 6000

Cost: Free

 

Abemaciclib listed on the Pharmaceutical Benefits Scheme

Breast Cancer Network Australia (BCNA) has welcomed the addition of the CDK inhibitor abemaciclib (Verzenio) on the Pharmaceutical Benefits Scheme (PBS).

It has been added as first-line treatment for ‘non-premenopausal’ people newly diagnosed with hormone receptor positive, HER2-negative metastatic breast cancer. The listing took effect on 1 January 2020.  Click here for more information

 

Breast Cancer Network Australia Service Finder

Not sure if everyone is aware of this resource, BCNA has a Service Finder on the website that will enable you to find services and supports near you.  The Service Finder lists government programs and support groups in your area and is comprised of relevant government services and services which have been suggested or endorsed by our members.

Services are grouped in the following categories:

  • ·         Support groups
  • ·         Health and well being
  • ·         Physical appearance and support
  • ·         Lymphoedema support,
  • ·         Support at home,
  • ·         Accommodation
  • ·         Transport,
  • ·         Work, financial and legal support
  • ·         Information and resources. 

All you need to do is click on the search item/s and add your postcode.  Services or supports in your area will be displayed.  We have recently listed some new services you may not be aware of so pop in and have a look! Service Finder

We welcome recommendations of services or supports you have used. Please complete the submission form so we can ensure the suggestions meet our inclusion guidelines. 

 


Birthday listing

Thank you to everyone who has provided their birthday details for our community birthday listing.  We have had a great response!  It’s so important to celebrate special occasions and milestones!  @iserbrown has decided to step down from managing our birthday listing.  I thank you @iserbrown for all of your time and efforts in ensuring that community member’s birthdays are celebrated online!  I have enjoyed sharing the virtual birthday cakes, how yummy are they!

A call out to our community, is there anyone who may be interested in maintaining our birthday listing and posting the birthday notifications online?  If you are interested please direct message me Giovanna_BCNA.

 

This week’s reflective quote

“Strength doesn’t come from what you can do. It comes from overcoming the things you once thought you couldn’t.” 

Anonymous

 

Have a good weekend everyone, take care of you

Kind regards, your moderation team

Giovanna, Rosie, Riki, Michelle, Laura, Jenny, Carissa & Pat



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Comments

  • eightdayseightdays Member Posts: 24
    Thank you so much for the mention and the well wishes. The support since being back has been overwhelming. I’m feeling much better as my treatment plan becomes clearer. All the best,
    eightdays
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,407
    Great to hear @eightdays.  Its such a relief to have a treatment plan in place and to finally get started.

  • arpiearpie Mid North Coast, NSWMember Posts: 3,617
    Many thanks, @iserbrown for maintaining the birthday page!!  xx

  • iserbrowniserbrown Regional VictoriaMember Posts: 4,040
    It's been a pleasure but my health and well-being have to take the front row.
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