Important update (please read)
Just a reminder to our valued Online Network community, from 5pm Wednesday 19 March to Thursday 27 March there will be a pause to your Online Network access while we transition you over to the improved platform. This means, you can continue to view everything but you will not be able to start a discussion or comment on a post. After 27 March, we look forward to welcoming you back to experience our refreshed My Journey, which will include the new Online Network. Again, we apologise for the inconvenience of this disruption and appreciate your understanding. If you need information or support during this pause, please reach out to BCNA's free and confidential Helpline on 1800 500 258. If you are interested in registering as a new member during this period please email helpline@bcna.org.au and we will contact you when the new platform is liveNew Online Network - Important Information (Please read)
We’re thrilled to let you know that we are launching a new-look Online Network platform that will be easier-to-navigate and enhance your experience with us, while still allowing you to connect with others going through a similar breast cancer experience. So that our team are able to migrate your information over to the improved platform, there will be an Online Network pause from 19-27 March, 2025. During this time you will still be able to access the Online Network however in READ ONLY format, which means you can continue to view everything but you will not be able to start a discussion or comment on a post. After 27 March, we’re excited to welcome you to experience the refreshed Online Network. We’ll be in touch with further guidance on how to login soon! We’re very aware how important our Online Network community is, and we apologise for the inconvenience of this disruption. If you need information or support during this pause, please reach out to BCNA's free and confidential Helpline on1800 500 258.
Friday update 5 November 2021
Friday update 5 November 2021 Hello members, Well, can you believe we are in November already? Spring weather has been in full swing in Victoria with such variety of days; how is your part of the world? Thankyou again to all members who shared their stories, resources and support during October breast cancer awareness month. Also, a reminder to our newer members as to some of the resources and services BCNA provides: · My Journey an online resource (and downloadable app) that provides high quality, evidence-based information and insights from others diagnosed with breast cancer as well as a symptom tracker. · My Care Kit is for women who have recently had breast surgery. It contains a specially designed Berlei bra and soft form/s, provided through a partnership between BCNA and Berlei. · BCNA's Helpline is a free and confidential telephone service for those affected by breast cancer and their friends and family. Available -Monday - Friday 9am-5pm AEST 1800 500 258 Community highlights October Online Network activity * 51 New users * 101 Contributors * 100 Discussions * 798 Comments The Online Network 'Page views' peaked to nearly 3,000 on the 14th of Oct, which coincides with the Thriving Together, Living Longer, Living Stronger web conference (If you haven't watched it yet CLICK HERE ) Popular forum discussions Members new and old may have missed some of the forum discussions that have received the most comments: 1. oestrogen and DCIS 2. Night Howlers - Jump on to chat if you are awake 3. Letting go of being superwoman! 4. COVID booster shots Creative Corner Have you checked out the latest creations in this member discussion? Hope you don’t mind me sharing your wonderful work @StrongCoffee :) - head to the discussion link https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest Community News Summer is a great time to PLAY4BCNA! Summer sports season is nearly here and whether you like golf, lawn bowls, softball or sailing, we invite you and your club can get involved and host a PLAY4BCNA Pink Sports Day. In spite of some interruptions to community sport due to COVID-19, BCNA is thrilled to announce that 2021 summer registrations to host a Pink Sports Day are now open. CLICK HERE to Find out how you can get involved. BCNA NEWS 26 Oct 2021 - Subsidy for Verzenio (abemaciclib) expanded on the Pharmaceutical Benefits Scheme (PBS) Breast Cancer Network Australia (BCNA) welcomes the expansion of the Pharmaceutical Benefits Scheme (PBS) listing of Verzenio (abemaciclib) to include its use in combination with Faslodex (fulvestrant). CLICK HERE to read full details Facing breast cancer with a disability Coping with breast cancer can be difficult. If you are also living with a disability, you may face additional challenges. Remember BCNA has resources to assist people with a disability; CLICK HERE to explore. BRECONDA web tool for breast reconstruction (reminder!) Have you heard of BRECONDA? While it has been existence for some time, there may be those of you who are not aware of this great decision aid. Funded by Cancer Australia and National Breast Cancer Foundation, BRECONDA is available for women deciding whether a breast construction is right for them after mastectomy. CLICK HERE to explore this free tool Upfront About Breast Cancer Podcast – Accessing Support in regional and rural locations Let’s be upfront about the challenges you may face in accessing specialised breast cancer treatment and care when living in rural, remote and regional areas in Australia. In the episode, we’re joined by Sandy Vlatko and Asha Scott. Sandy is a McGrath Breast Care Nurse who is based at Kalgoorlie Health Campus, located nearly 600 km northeast of Perth. Asha was diagnosed with breast cancer in 2018 and had to travel to Perth for a large part of her treatment. We’ll hear about how Sandy helped support and navigate Asha’s complex medical situation in a regional setting and how she helped organise her treatments away from home, manage access to breast cancer services and other practical support available including allied health. Listen via this link or wherever you get your podcasts: https://buff.ly/3jJJ8x6 BCNA Member Support Team & Online Network Moderators - Introductions This week I am pleased to introduce you to Anna Wilson from our Member Support Team: This week I am pleased to introduce you to Meredith from our Member Support Team: Meredith is a trained nurse and came to BCNA having worked for 8 years at Odyssey House (Drug & Alcohol rehab). She has worked in the health sector most of her career, mainly in hospital settings both in Australia and overseas. Meredith has worked the longest on the BCNA Helpline, with 14 years under her belt! She derives enormous satisfaction working on the Helpline, assisting, and guiding all people who contact BCNA for support. Her additional role at BCNA involves onboarding, engaging, and liaising with Health Professionals. Meredith has also been diagnosed with breast cancer, giving her personal insight into the challenges one might face in their cancer journey. She is married and has a daughter. One of her of favourite pastimes is travelling and walking/trekking. Books / Movies/ TV Series/ Documentaries This is one that I listened to on Audible last year and has to be the best book for me in 2020. The reason why I share it today is that author Eddie Jaku has recently passed away at the age of 101. He was a brilliant human and I hope you get a chance to read his story ‘The Happiest Man on Earth’ Eddie also did a TEDTalk in Sydney 2019: https://www.ted.com/talks/eddie_jaku_a_holocaust_survivor_s_blueprint_for_happiness?language=en Have a wonderful weekend and I hope you enjoy the update. In the meantime, if you have any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Anna_BCNA @Pat_BCNA @MichelleP_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 alternatively, you can email contact@bcna.org.au Take care, The mod team – Mez, Carissa, Jenny, Anna, Pat & Michelle “It is never too late to be kind, polite, and a loving human being.” - Eddie JakuOctober Breast Cancer Awareness Month
Hello members, As many of you are aware, it is Breast Cancer Awareness Month in October. Breast Cancer Network Australia (BCNA) is Australia’s leading consumer network. We connect, support and empower Australians affected by breast cancer. We enable connections within our broad network to ensure no one feels alone. We provide support to help those affected by breast cancer make informed decisions. And we empower people to live well with and beyond a breast cancer diagnosis and make a difference by using their voice for change. Keep a look out in October as BCNA launches a powerful new podcast series, will host informative virtual conferences, raise awareness about issues that impact those diagnosed: • The Beacon (1st Oct) • Podcast Mini Series: with Dr Charlotte Tottman (6th Oct) • Virtual Conferences – Breast Reconstruction – Options and Expectations (12th Oct) Thriving Together – Living Longer, Living Stronger (14th Oct) • Podcast: Financial Impact (28th Oct) Our commitment is to continue to Connect, Support and Empower this October and beyond!Friday update 24 September 2021
Friday update 24 September 2021 Hello members, Well, we have had an interesting week here in Victoria with an earthquake that was felt across the State and by some of our neighbours in New South Wales, Canberra, Adelaide and Launceston – Did you feel it? It is also a public holiday here today in Victoria therefore the BCNA office is closed, however there is still time for a Friday update. For those of you who follow the AFL and/or one of the grand final teams, I hope you enjoy the game on the weekend. Community highlights New groups PALB2 gene support– This is a private group for individuals and family members affected by the PALB2 gene to come together for support and help spread the word about this gene mutation. The very brave Kerr Family spoke up about this largely unknown gene that has greatly affected their family and the main reason behind the Online Network's new PALB2 group. CLICK HERE to access the article. Popular forum discussions Members new and old may have missed some of the forum discussions that have received the most comments: 1. More cancer 2. New fees for radiation therapy as of 1-7-21 3. How did you find out about BCNA 4. Friday Funnies These funny posts are welcome any day really – bringing something light hearted to the forum credit @arpie Community News BCNA NEWS 16 Sept 2021 - Removal of Herceptin from PBS From October 2021, there will be some changes to Herceptin, one of the drug therapies that is available for people with HER-2 positive breast cancer – Access the full article via link below: https://www.bcna.org.au/news/2021/09/removal-of-herceptin-from-pbs/ BCNA NEWS 23 Sept 2021 – Breast Reconstruction Report The Breast Reconstruction in Australia 2021 report details the findings from BCNA’s survey, which received 3,350 responses from women across every state and territory, from metropolitan, regional and rural areas, and from ages 18 to over 80 - Access the full report via link below: Breast Reconstruction in Australia 2021 report | Breast Cancer Network Australia (bcna.org.au) The Pink Bra Project (Launching 26th September) The Pink Bra Project is an initiative created by Berlei and Breast Cancer Network Australia to support those close to our heart who have been affected by breast cancer. Berlei have created a special pink bra collection where $10 from the sale of each bra will be donated to BCNA in support of those affected by breast cancer. The collection includes a post-surgery bra, two t-shirt bras and a wirefree bra, and will be available to purchase online and instore from 26th September – Check full details of project via below link https://www.bcna.org.au/news-events/the-pink-bra-project/ Webcasts and conferences you have have missed Managing the cost of beast cancer: tips and resources There were 1,157 registrations and it was very interactive and informative one hour session. A few frequently asked/mentioned topics from the night were: · Access to long service, annual and sick leave · Out of pocket costs · Accessing death insurance before you pass · TPD insurance · Help available for self-employed/small business owners · Accessing superannuation early · Added costs for rural and regional members to access metro health care systems · Employment issues If you missed the webcast, you can still register via the link above and watch on demand. Upfront About Breast Cancer Podcast If you haven’t already, subscribe to BCNA's Fortnightly Podcasts . Podcast 35 coming up in the last week of September will be in relation to ‘Young Women & Sexuality’. We will also provide details very soon of an upcoming mini-series with clinical psychologist Dr. Charlotte Tottman. Books / Movies/ TV Series/ Documentaries Recently I re-watched Netflix documentary ‘Minimalism: a documentary about the important things’. You may have also heard of the producer’s podcast ‘The Minimalists’. Good reminder that we don’t have to accumulate ‘things’ for fulfilment. What have you read or watched lately? That’s it from me for another Friday update and I hope you enjoy the read as you head into the weekend. In the meantime, if you have any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Anna_BCNA @Pat_BCNA @MichelleP_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 alternatively, you can email contact@bcna.org.au (We will be back on deck Monday). Take care, The mod team – Mez, Carissa, Jenny, Anna, Pat & Michelle ‘I can be changed by what happens to me. But I refuse to be reduced by it.’ – Maya Angelou
Is a blog over the top?
Hi, I'm Kirrilee, I don't even know any answers to fill in the journal page about myself. I know nothing about anything yet. This is what I do know. I have grade 3 aggressive breast cancer. I had a lumpectomy and some nodes taken on Thursday (21st Jan). I have another appointment with the surgeon on Friday. I didn't mean to start a blog, it's just that everyone asks so many questions and it's tricky replying to everyone. It seems to be keeping people informed as well as helping me by spending time concentrating on forming sentences rather than starting to panic. Do you reckon it's over the top? xo swimmingthroughwinter.weebly.com
Tempered Conversations
Whilst I thoroughly agree that this is a terrible time in our lives I sometimes read posts and wish ladies would read and re-read their posts before hitting the button. Think how you were feeling at the beginning - is what you are saying really what you wanted to hear just then and is it expressed in a gentle manner ? Yes, we need to be honest but please think about the terminology and how it would seem to others coming behind you. You don't know how the person is feeling, you don't know their circumstances (personal or financial) and you don't know how what you are saying may be sufficient to drive the end of their life. Please be kind. Anne
Friends say the dumbest things
I have chosen to tell a select few friends for support but now wondering about a couple of those. I guess time will tell who is who on this with me. I was feeling emotional 3 days after surgery and phoned a friend. After asking how I was and me explaining how confronting it all was this friend said 2 things: 1. Join a support group and 2. You're not the first to go through this and you won't be the last. Seems harsh to me. It did stop me in my tracks and I did stop being emotional probably because I couldn't believe she said this. It certainly has made me very careful what I say in future to her and less inclined to share. I have friends who would never be harsh like that and acknowledge/validate my emotions which is great but this person clearly is not one of them. How does everyone deal with people who basically tell you to get on with it?
Breaking up with your oncologist
hi all, im new to this forum and about half way through my AC/taxol chemo ‘journey’. I’m a stage 3 triple positive, on the menu is chemo, mastectomy, radiation, hercepton and likely neratinib (when I get sick of constipation and want to change it up a little). I have an oncologist and whilst she is nice, I just don’t feel like I click with her. I feel like I’m being provided a service and I seldom leave her appointments uplifted. She’s pretty black and white and straight down the line. Trying to make her laugh with my satirical humour is almost impossible. I’ve been trying to crack her now for a good 12 weeks. No joy. However my surgeon and my new radio oncologist when I meet them, I feel happy afterward. A friend says I’m mad to stick with her and should find a new oncologist. So I’m just wondering has anyone had any experience with finding a new oncologist and the reasons that they did so? And also, how they did it? i feel like if I leave I should be kind and find a way to explain ‘it’s not you it me, we just don’t click’. Because she’s not crap, she’s just maybe not someone I’d have a wine with. Thanks!
