Community update 31 January 2020
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
Comments
-
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,
eightdays3 -
Great to hear @eightdays. Its such a relief to have a treatment plan in place and to finally get started.
0 -
1
-
It's been a pleasure but my health and well-being have to take the front row.3
