Friday update 10 September 2021
Friday update 10 September 2021 Hello members, Welcome to the revival of the Friday community update. My name is Mez and I am part of the Breast Cancer Network Australia (BCNA) Member Support Team/Helpline. I have had the pleasure of connecting with some of you in the past four weeks and want to thankyou for your feedback, support and guidance, as I explore the functions of the Online Network. I hope you enjoy the update. Community highlights New groups 'LGBTIQ+ Breast Cancer Network' – This is a private group which has been created for people who identify within the LGBTIQ+ communities and have also been affected by breast cancer to connect. The group currently has 11 members, and we look forward to watching it grow. Popular forum discussions Members new and old may have missed some of the forum discussions that have received the most comments: 1. Friday Funnies These funny posts are welcome any day really – bringing something light hearted to the forum 2. what to take to chemo treatments? 3. Arimidex brand now has a $5 surcharge on top of PBS fee! 4. A bit naughty - but funny!!! Show us your 'naughty ones'! Please note some posts may offend I picked out a post by @Sue_w below (hopefully not too offensive) Community News The Beacon magazine (Issue 88 – Aug 2021) The latest copy of the free mazagine can be accessed via the website or PDF as per below: Link to the website here: http://beacon.bcna.org.au/ Link to the PDF file: https://www.bcna.org.au/media/8177/bcna_beacon_august21.pdf Key topics include: re-learning the language of sexuality after a breast cancer diagnosis, preserving fertility and knowing your options, Andrea Smith’s experience of living with metastatic breast cancer and peripheral neuropathy. BCNA NEWS 16 Aug 2021 - Breast Cancer wont pause for COVID – screening is essential The temporary closure of BreastScreen services across NSW is NOT as excuse to ignore symtoms warns Breast Cancer Network Australia (BCNA) – Check out the full article below https://www.bcna.org.au/news/2021/08/breast-cancer-wont-pause-for-covid-screening-is-essential/ BCNA CAMPAIGN Pink Tradie 2021 For the months of August and September, BCNA is putting a call out to tradies across Australia, asking them to pull on a Pink Tradie beanie and a pair of BCNA pink socks to support the 20,030 Australians expected to be diagnosed with breast cancer this year - Check out this campaign raising funds for BCNA https://www.bcna.org.au/news-events/hold-an-event/pink-tradie-2021/ Webcast REGISTER NOW! Don’t miss out on the webcast Managing the cost of breast cancer webcast: tips and resources on the 16th September 2021 07:00 PM – 8:00 PM - Explore managing the costs of breast cancer including informed financial consent, public vs private healthcare, hidden and common out-of-pocket costs, questions to ask your healthcare provider, financial wellbeing, career impacts, issues for those who live in rural and remote areas and the resources and support available to you. Webcasts and conferences you have have missed Integrative Health Webcast – complementary therapies enhancing wellness for people affected by breast cancer Fertility and Breast Cancer - Knowing Your Options Webcast Treatments for Breast Cancer – Options and Considerations If you missed any of the webcasts above, you can still register 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’. Books / Movies/ TV Series/ Documentaries I thought it would be a nice idea to invite you to share recent books, movies, TV series/documentaries that you have enjoyed over the past few weeks. I recently started reading the book ‘The Brain That Changes Itself’. Well that’s all from me this week! I hope to evolve the Friday update and have had great suggestions already, for example introducing my colleagues from the BCNA Member Support Team. 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 ‘Part of being a person is about helping others.’ – Regis MurayiWelcome New Members - 7th March 2025
A very warm welcome to our newest Online Network members: @sapi @rsaracho @Mumof2teenswithMets @Beth5000 @CBS @TATA24 @Michelle444 @Kateus @SmallSteps @Meadow @Callie @Ma72R @mummyof3 @jesst6 @cheese0202 @Savvy @Noni @KateV @Suzy11xyz @Elephant @Buddy2019 @ksia @L57125010 @lauraj @Andrina @netnay14 @sinfantino @SusanR @kymc @chanss1226 @EllieC @paulinagtzr @DJames @kcat @Vanno @charliegirl @FayeBB @SnowQueen @lacit @Squidkid @FightingFit52 @Healthy1 @lizdob @DNCN @CLF @RosaP @PH0378 @sandalwood @June80 @kat1202 @little_cupcake @sharlane @Cerys @Shazza63 @AnnieGrace @Walking4life @Shady @Smorty @FlattenUp @Carolyn9 @Naomi25 @LollyF @Melissa101 @SDolcy246 @JSik @Shar65 @Linda_Z @K8teH @andilee @trudy_F @vchandz @Steph198615 @TinaN @Happyvalley1 @Hayley75 @ChristinaJ @mari82 @nurserach @Aliesha @Cindz @Mandy_79 @coffcb @MonB @CCHL @CBC @Jen4730 @michellechatfield @Donna_B You have found your way to Breast Cancer Network Australia's (BCNA's) Online Network. This is a forum where you are not alone and can engage with generous members who provide meaningful support to each other. You can share as much or as little as you feel comfortable with other members. Please explore our various Groups for members who are looking for greater peer-to-peer support. The following links may also be helpful in getting you started: If you would like to introduce yourself please read How do I post a new Discussion? How do I send a private message? Navigating the online community Community Guidelines My Journey Newly diagnosed? Listen to BCNA's Upfront About Breast Cancer Just Diagnosed - What's Next? and What I Wish I Knew podcasts Metastatic breast cancer diagnosis? Webcast: Just diagnosed with metastatic breast cancer, what’s next? When is your birthday? Head to this discussion thread if you would like to share your birthday (no need to include the year unless you want to). We love an online celebration and on the day you will receive a virtual birthday cake that we can all share! Our long-time members (newbies too!) are a wealth of information regarding the useful discussion topics and information available through BCNA's Online Network, therefore please do not hesitate to post your questions. You have the option to add details about yourself to your 'Profile' (Update your profile image by clicking 'Change My Picture') and if you would like more targeted responses, you may like to add where you live (e.g. Sydney; Melbourne; Regional Victoria). If you need help navigating the Online Network please message myself @Mez_BCNA or one of our other moderators: @Denise_BCNA , @Risha_BCNA , @Pat_BCNA, @Kate_BCNA , @Daina_BCNA , @Astrida_BCNA Please note: the Online Network is not moderated by staff/volunteers on the weekends, however if you need something actioned, the quickest way to resolve your query is to contact the Helpline Team via email helpline@bcna.org.au or phone 1800 500 258 Monday to Friday 9:00am-5:00pm AEDTWelcome New Members - 30th July 2024
Welcome to everyone who has joined the Online Network recently: @NatG @lmiller @Rheezy @ingar @mhackwill1 @LunasMum @Denhamia @Janeo70 @sarahgee @Jilly2324 @CeeGee @Camilla @khany @pt20 @Chez79 @JackieJ @2Thrive @Calm2thrive @Agent14516 @MelCBusby @DinaC @Ned01 @KerryA @Vista @ValerieC @KyleS_1 @Dobbo @EmanZiada @3716758 @82lexoss @BC_47 @Bri @duiroak52 @granVe @madamhonk @Dee8855 @cancer_warrior62 @SunnyM @Catrina @Jojosaint116 @kiki_m @juliemcdonald220 @Lynnym @maryo @Meg1112 @Mssme765 @thisisrachel @thisisrachel101 @emt1980 @Fluffysocks @helen54 @GG57 @Hiroshima @NannieB @deekay77 @Alli @SusanY @krytal @PSP @Formulakas @lorrainelayton @Rellee @emmadaggers @curry @Stelzy @marburgkate @JLumb @annmaree872 @LJS @GillianR @kids06 @mim @Esjay @April2024 @louiedub @Lobular_BC @Pebbles @Madeit @Jlom @GoatLady @Tuckwell @Barbm @Stillstanding @jaynie_000 @jMan @Carobloss @Lea24 @AnnieC @Zoey @Riley You have found your way to Breast Cancer Network Australia's (BCNA's) Online Network. This is a forum where you are not alone and can engage with generous members who provide meaningful support to each other. You can share as much or as little as you feel comfortable with other members. Please explore our various Groups for members who are looking for greater peer-to-peer support. The following links may also be helpful in getting you started: If you would like to introduce yourself please read How do I post a new Discussion? How do I send a private message? Navigating the online community Community Guidelines My Journey Newly diagnosed? Listen to BCNA's Upfront About Breast Cancer Just Diagnosed - What's Next? and What I Wish I Knew podcasts Metastatic breast cancer diagnosis? Webcast: Just diagnosed with metastatic breast cancer, what’s next? When is your birthday? Head to this discussion thread if you would like to share your birthday (no need to include the year unless you want to). We love an online celebration and on the day you will receive a virtual birthday cake that we can all share! Our long-time members (newbies too!) are a wealth of information regarding the useful discussion topics and information available through BCNA's Online Network, therefore please do not hesitate to post your questions. You have the option to add details about yourself to your 'Profile' (Update your profile image by clicking 'Change My Picture') and if you would like more targeted responses, you may like to add where you live (e.g. Sydney; Melbourne; Regional Victoria). If you need help navigating the Online Network please message myself @Mez_BCNA or one of our other moderators: @Denise_BCNA , @Risha_BCNA , @Pat_BCNA, @Kate_BCNA , @Daina_BCNA Please note: the Online Network is not moderated by staff/volunteers on the weekends, however if you need something actioned, the quickest way to resolve your query is to contact the Helpline Team via email helpline@bcna.org.au or phone 1800 500 258 Monday to Friday 9:00am-5:00pm AEST
March content round-up
Hi members, My name is Amelia and I work in the Member Content and Engagement team at BCNA. At the end of each month, I will do a round-up of all the podcasts, events and resources we have launched so you all have them in the one place. If you have any feedback on the content or have any ideas of topics you’d like covered, please feel free to always send me an email acox@bcna.org.au. Enjoy! Thank you, Amelia Podcast: In conversation with Shannane and Kate: Under 40 and living with breast cancer Joining us for this In Conversation episode is Shananne and Kate. Kate was diagnosed with stage 3 triple negative breast cancer when she was 26 years old and 28 weeks pregnant. Shananne was diagnosed with hormone receptor positive breast cancer in 2018 when she was 37 years old and pregnant with her third child. During this candid conversation between Shananne and Kate we’ll hear about their reaction on being told they had breast cancer, the treatment they received, the challenges they faced and continue to face, coping strategies they used and advice they have for other young women. Listen here. LGBTIQ+ experiences of cancer and cancer care: Joining us for this episode of Upfront is Jane Ussher and Natalie Halse. Jane is a Professor of Women’s Health Psychology in the Translations Health Research Institute at Western Sydney University and is the lead researcher in the recent ‘Out with Cancer’ Study. Natalie is a registered nurse and a BCNA consumer representative with lived breast cancer experience of a LGBTIQ+ person. We hear about some of the key findings of the ‘Out with Cancer’ study and its key learnings, discuss disclosure including how to do it safely, the positive benefits, and why some people are reluctant and discover what to do if you experience a negative reaction from a health care professional and the support available. Listen here. Through a rainbow lens – Navigating breast cancer as an LGBTIQ+ couple: Joining us for this episode is Mel Krollig and her partner Riki Owens-Bennett. Mel was diagnosed with breast cancer in 2016 at the age of 36 and has had fertility treatment, a single mastectomy, chemotherapy, and radiotherapy. Riki works as a community worker for the LGBTIQ+ communities in South Australia and has been by Mel’s side during her breast cancer journey. Riki and Mel have been together for 19 years, and despite a few COVID-19 related delays, married in 2021 in a celebration surrounded by family and friends. We’ll hear about Mel’s experience of breast cancer, how Riki supported her, the challenges the couple faced together and how they navigated the system as a LGBTIQ+ couple. Listen here. Webcast: Just diagnosed in 2022, what’s next? In this webcast, we heard from specialist breast cancer surgeon Mr Sunil (Sunny) Jassal, breast care nurse Meg McDonald and BCNA Consumer Faye Louey. Sunny is a director and founding member of Melbourne Breast and Endocrine Surgeons and works with leading radiologists, pathologists, oncologists and plastic surgeons. Meg works at Melbourne Breast and Endocrine Surgeons where she is an integral part of the breast cancer care team. Faye was diagnosed with early breast cancer in 2019 and discussed how she took control of her diagnosis after the initial shock. Watch here. New resources: BCNA is thrilled to have launched new content to support First Peoples women and people from LGBTIQ+ communities who are diagnosed with breast cancer. These two projects, undertaken with support from Cancer Australia, have enabled BCNA to expand our resources for people from these marginalised groups to help them feel empowered to make decisions about their treatment and care and to help them through their breast cancer journey. The information was developed with significant input from consumers through BCNA’s First Peoples Advisory Group and LGBTIQ+ Advisory Group. Read more about the new LGBTIQ+ and First Peoples resources via the BCNA website.BCNA Webcast - Breaking Barriers: Global Insights and Local Voices on Metastatic Breast Cancer
Join us for BCNA’s latest webcast Breaking Barriers: Global Insights and Local Voices on Metastatic Breast Cancer. The webcast will feature special guests Dr Hope Rugo, a renowned expert in breast cancer research, and BCNA Consumer Representative Laura Yannouni, who is living with metastatic breast cancer. Don't miss this unique opportunity to gain valuable insights, learn from leading experts, and be part of a conversation that aims to drive change and foster hope. Date: Tuesday, 13 August 2024 Time: 3.30pm to 4.30pm AEST Register hereWelcome New Members - 14th September 2023
Welcome to our new members to join the Online Network recently: @Daria @M_Cooper @LouLou_67 @Mirium17au @Cheri @Lizzee_O @73Nard @Readybluedragon @emmajuliet @CAS_33 @roxywaffle @Somsaysam @CISFJ @bigfoot @rachel_bayleaf You have found your way to Breast Cancer Network Australia's (BCNA's) Online Network. This is a forum where you are not alone and can engage with generous members who provide meaningful support to each other. You can share as much or as little as you feel comfortable with other members. Please explore our various Groups for members who are looking for greater peer-to-peer support. The following links may also be helpful in getting you started: If you would like to introduce yourself please read How do I post a new Discussion? How do I send a private message? Navigating the online community Community Guidelines My Journey Online Tool Newly diagnosed? Listen to BCNA's Upfront About Breast Cancer Just Diagnosed - What's Next? and What I Wish I Knew podcasts Metastatic breast cancer diagnosis? Webcast: Just diagnosed with metastatic breast cancer, what’s next? When is your birthday? Head to this discussion thread if you would like to share your birthday (no need to include the year unless you want to). We love an online celebration and on the day you will receive a virtual birthday cake that we can all share! Our long-time members (newbies too!) are a wealth of information regarding the useful discussion topics and information available through BCNA's Online Network, therefore please do not hesitate to post your questions. You have the option to add details about yourself to your 'Profile' and if you would like more targeted responses, you may like to add where you live (e.g. Sydney; Melbourne; Regional Victoria). If you need help navigating the Online Network please message myself @Mez_BCNA or one of our other moderators: @Denise_BCNA , @Risha_BCNA , @Pat_BCNA, @Kate_BCNA , @Daina-BCNA Please note: the Online Network is not moderated by staff/volunteers on the weekends, however if you need something actioned, the quickest way to resolve your query is to contact the Helpline Team via email helpline@bcna.org.au or phone 1800 500 258 Monday to Friday 9:00am-5:00pm AEST.Friday Update 10th February 2023
Hello members and welcome to the latest Friday update, In this update I share several topics and insights into the upcoming March edition of The Beacon. I also share information about the Carman's Fun Run, as this date is coming up fast and I wouldn't want you to miss out if you live in the Melbourne area. Enjoy! Community highlights January activity In January the Online Network had 85 new discussions; 548 new comments and 15,293 visits to the community Popular forum discussions You may have missed some of Online Network discussions that have been most active in January: Single mastectomy with immediate DIEP reconstruction Mastectomy Decisions on surgery Bone Scan along with 3yr mammogram and ultrasound 5 years today since my surgery .... Posts by 'Category Name' January 2023 Community News BCNA My Journey Updates This week we had three articles related to COVID-19 which have been significantly reviewed and updated. Reflecting the recent government announcement regarding access to booster shot from February 20th 2023. Refer to below links COVID-19 Information COVID-19 vaccinations COVID-19 oral antiviral treatments BCNA - Improve access to breast cancer care and support in NSW More than 6,400 people in NSW are expected to be diagnosed with breast cancer in 2023. BCNA is calling on all those contesting the NSW state election to show their commitment to cancer care and support for people affected by breast cancer. Waitlists for elective surgeries have blown out across Australia. In our 2022 federal Election Manifesto we called for greater transparency of waiting times, especially for those waiting for a breast reconstruction following breast cancer. In NSW, the 2023 state election is further opportunity to state governments to commit to invest to clear the current elective surgery backlog, especially in rural and regional areas. Read BCNA's federal election manifesto via the link https://www.bcna.org.au/media/8473/bcna_election_manifesto_fy22_v3.pdf BCNA - Latest information regarding Perjeta (pertuzumab) We have had a few enquiries to the Helpline team regarding access to Perjeta for early breast cancer diagnosis, therefore the below information may be helpful to assist those who are unsure of the most current information (As at February 2023). BCNA understands that Perjeta (pertuzumab) is currently subsidised on the Pharmaceutical Benefits Scheme (PBS) for metastatic breast cancer only. It was submitted for consideration by the Pharmaceutical Benefits Advisory Committee (PBAC) for early breast cancer twice, in 2018 and 2020, however was unsuccessful in both instances. BCNA submitted a consumer comment to the PBAC in 2020 in support of subsidising Perjeta (pertuzumab) in combination with trasutuzumab and chemotherapy for the adjuvant (post-surgery) treatment of the Human epidermal growth factor receptor-2 positive (HER2-positive), lymph node positive early breast cancer. We also noted in this submission the emerging clinical evidence of the effectiveness of neo-adjuvant (pre-surgery) Perjeta (pertuzumub) for HER2-positive early breast cancer and advocated for it to be considered for subsidy in this setting as well. BCNA understand that Roche currently runs a Patient Access Program for Perjeta (pertuzumab) in the neo-adjuvant setting in which the out-of-pocket costs are shared by the patient and Roche whilst this treatment is not subsidised on the PBS. BCNA continues to advocate to both the pharmaceutical industry and to the government for improved access to subsidised treatments to alleviate the financial burden of a breast cancer diagnosis and to improve equity to access to optimal care for all Australians. Speak with your medical oncologist if you would like further clarification about the program. You can also read further details via BCNA's My Journey article https://myjourney.org.au/article/2201 The Beacon - March Edition Here is a sneak peak into the upcoming topics and information in the latest Beacon edition: Ask the expert: Support needs after a diagnosis - Dr. Charlotte Tottman answers questions including: What is support? What does it look like in a breast cancer experience? Why is support different for everyone? What can be helpful if you feel disappointed about the support you've received? What helps when you don't have much support - Three members share their real experiences of having not much support during and beyond their breast cancer diagnosis. Then and now: How support has changed - Member Glenda shares her story, showing a comparison of her first breast cancer diagnosis in the 90's and her recurrence in 2022. Touching on elements such as access to information, breast care nurses, financial support and ongoing support Breast cancer researchers embracing the voice of BCNA Consumer Representatives - The story looks into 'Project: Finding My Way - Advanced study - randomised control trial (RCT)' and 'Project: EMPOWER-SMS Study'. Carman's Fun Run Join us for the Carman's Fun Run on the 19th February 2023. Held at the picturesque Elsternwick Park (located at the doorstep of the popular Elwood shops), be part of our inclusive and supportive community to inspire participants along their journey to a half-marathon, 10k or 5k. With a family friendly event site Carman's Fun Run will be an enjoyable day out for all participants. Click the link for more details on how to register https://www.bcna.org.au/events/2023/carmans-fun-run-2023/ or if you would like to volunteer https://bcna.live/CarmansFunRun-Volunteering Forums / Webcasts WEBCAST Managing Stress and Improving Wellbeing with Mindfulness and Meditation - Wed 15 February 7:00-8:00pm AEDT Join mindfulness expert Prof. Craig Hassed OAM; Medical Practitioner and Associate Prof. Dr Emma Warnecke and BCNA member and mindfulness meditation teacher Iris Bar, as they discuss the benefits of mindfulness and meditation to help reduce stress during and beyond a breast cancer experience. Click on the link to register https://bcna.live/MindfulnessWebcast Port Lincoln Information Forum - Tues 7 March 9:00am - 3:00pm ACDT Join us at Port Lincoln hotel to hear a range of topics and connect with those in your local community. Guest speakers will include clinical psychologist Dr Charlotte Tottman; McGrath Breast Care Nurse Michelle Lydeamore and Lymphoedema Physiotherapist Kristy Roeger. Click on the link to register https://bcna.live/PortLincolnForum Books / TV Series / Movies / Documentaries I shared this YouTube video in the 'Living with metastatic breast cancer' private group and thought I would share with the wider forum community. You may have already seen the interview last week with MP Peta Murphy, who shared her breast cancer journey https://youtu.be/97RyknJv5FU Hope you have found this update useful. Please feel free to share your ideas for content that you would like to see in future updates. If you have any concerns while using the Online Network, please direct message (How do I send a private message?) one of the moderators below - @Carissa_BCNA @Jenny_BCNA @Pat_BCNA @Mez_BCNA If you need to speak with one of our friendly Helpline staff over the phone, please call 1800 500 258 (Mon-Fri 9:00am-5:00pm AEDT) or email helpline@bcna.org.au Warm regards, The mod team - Mez, Carissa, Jenny, & Pat "A kind gesture can reach a wound that only compassion can heal." - Steve MaraboliFriday Update - 2nd December 2022
Friday update 2nd December 2022 Hello members, Welcome to December! I look forward to sharing some of the activity at BCNA and also important news about some upcoming changes to the online network. Given we are heading into the holiday season very soon, it is a good idea to remind everyone that this time of year can be difficult for many people. Our Helpline will be closed for a short period (23 December to 3 January 2022), however the unique part of the online network is that it keeps ticking over no matter the time of the year. I encourage you to seek support for yourself and connect with others over the closure period. Moderators will be on a reduced roster over the closure period, though they will still monitor the discussions/activity. Community highlights November Online Network activity In November the online network had 14,096 visits to the community; 72 new discussions and 362 new comments. Popular forum discussions Members new and old may have missed some of the forum discussions that have been most active in November: 1. Newly diagnosed 2. Airport X-ray machines and a prosthesis 3. Hair loss 4. When can I start eating salads, soft cheese and the like? 5. Update on Doxorubicin/Caelyx Posts by ‘Category’ Name’ November 2022 Community News Online network – exciting changes Launched in 2010, BCNA's online network is an online peer to peer support community, providing people affected by breast cancer with a safe space to connect with others, share stories or ask for advice. Twelve years later BCNA’s Online Network is getting a much-needed new look, making it modern, inviting and user-friendly. On the 15th of December 2022 when you login you will notice an updated template to the online network. The platform provider remains the same, therefore the key functions you are familiar with remain. We will have new category icons for quick access to breast cancer topics and discussions; BCNA announcements and peer-to-peer discussions will be separated; and the search function will have a much-improved upgrade (These are just some of the new features). I have shared some screenshots below of the staging (draft) site to give you an idea of what to expect. Keep in mind we are still refining some aspects, including the category icons. SCREENSHOT 1 - HOMEPAGE BANNER AND CATEGORIES CAROSEL SCREENSHOT 2 - HOMEPAGE DISUCCSION LAYOUT AND HELPLINE INFORMATION SCREENSHOT 3 - SEARCH FUNCTION There will be a transition period where the ‘Navigating the online community’ information has to be updated; however, this has to wait until the new upgrade goes live. If you need any assistance, you can always message the moderators or contact the Helpline 1800 500 258. Thankyou for all the feedback you have provided since I took on the online network management role in August 2021. Several of the key updates are a direct result of the feedback by our valued members. We look forward to hearing your thoughts on the new look when it goes live! Issue 93, December 2022 – The Beacon The final edition for 2022 has been emailed to your inbox and can be found via the link https://www.bcna.org.au/news-events/the-beacon-magazine/issue-93-december-2022/ There are so many great articles this month: · Genetics and the risk of breast cancer · Breast cancer inspired lifestyle changes · Regional breast care nurse in regional Australia · Issues paper: Making metastatic breast cancer count · Transitioning back to work after breast cancer · A young mum’s breast cancer experience In the September edition we had over 8,000 views which is a wonderful result and we hope December is just as strong. Rockhampton Information Forum – watch on demand BCNA hosted an Information Forum in Rockhampton for people living with breast cancer and their supporters. The Information Forum covered a range of topics including the latest in breast cancer treatment, managing your emotional wellbeing after a breast cancer diagnosis, and how you can live well during treatment and beyond. You can now watch the on-demand videos of each presentation please click here. My personal favourite part of the forum recordings is the ‘Lived experience panel’ you can view below: https://www.youtube.com/watch?v=9-hJ5Z-tCJ8&list=PLpvVCfUeAqMBD-xVnHuRqaVk0GF3AizLn&index=1 12 Gifts of Christmas If you are looking for gifts this Christmas and also would like to support people affected by breast cancer, head to BCNA’s 12 Gifts of Christmas website page where you will find wonderful organisations involved in the campaign. My Journey - COVID-19 Information If you or someone you know has breast cancer it's important you continue to reduce your risk of getting COVID-19. Some states and territories are entering a new wave of COVID-19. Choose to stay safe by wearing a mask in indoor settings, getting together with others in well ventilated spaces and staying up to date with vaccinations. Check your state or territory’s Department of Health website for more information on how to stay safe. BCNA has continued to update a suite of content about COVID-19 and breast cancer on MyJourney - see link: https://myjourney.org.au/article/3154 Breast cancer protein helps identify ways to target cells resistant to chemotherapy Interesting article highlighted by the Policy & Advocacy team in relation to new ways to target cells that resist chemotherapy. CLICK HERE to read full article at the Newcastle Herald. Webcasts/Podcasts Did you miss the webcast: Food and Movement When Living with Metastatic Breast Cancer? Although those who are diagnosed with metastatic breast cancer don’t require a specific diet, a healthy, nutritionally balanced diet and regular exercise can help maintain a sense of physical and mental wellbeing and can improve your quality of life. You will hear from exercise physiologist Dr Eva Zopf, dietitian Erynn Sotirelis, BCNA member Laura Yammouni and BCNA Consumer Representative Lisa Tobin. Watch on-demand via the link: https://kapara.rdbk.com.au/landers/f0bdf1.html Books / TV Shows / Movies/ Documentaries A little gem of a documentary series on Netflix right now is Season 2 of Down to Earth with Zac Efron. Where he takes his exploration of healthy, sustainable ways to live to Australia I admit I can sometimes be sceptical of actor types embarking on these projects, however I was pleasantly surprised. Take care and if you have feedback or any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Pat_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, & Pat “We are all visitors to this time, this place. We are just passing through. Our purpose here is to observe, to learn, to grow, to love… and then return home”. – Australian Aboriginal ProverbFriday Update 3rd Dec 2021
Friday update 3rd December 2021 Welcome to December members! A very warm welcome to all our new members who have joined us in November and to our existing members who continue to provide support to others navigating their breast cancer diagnosis or who are seeking support for family/friends. A reminder for newbies: please check out Charlotte Tottman’s Podcast mini-series ‘What you don’t know until you do’ https://www.bcna.org.au/understanding-breast-cancer/resources/podcasts/ Dr. Charlotte lays out her lived experience, provide explanations of psychological triggers and responses, and practical strategies that may help someone on their own cancer journey. Community highlights November Online Network activity November saw the Online Network receive a total number of 14,485 visitors to the community: 93 discussions and 875 comments. Popular forum discussions Members new and old may have missed some of the forum discussions that have received the most comments: 1. Friday Funnies credit @arpie 2. Christmas Funnies ....... put them up here for a laugh! 3. Chemo or not chemo 4. 4th Melanoma found after skin check Community News BCNA NEWS 22 Nov 2021 - IMPORTANT- Beware. Suspicious fundraising Over the last several weeks we have received queries from people within our network across SA, WA and NT regarding this issue. CLICK HERE for full details. BCNA’s Symptom Tracker If you haven’t explored the My Journey Symptom tracker, this tool can help you keep a record of the physical and emotional symptoms and side effects from your treatment so that you can feel confident to accurately share the ups and downs of your experience with your treating team and people close to you. Remember, to chat with your treating team if you notice new symptoms, or if your symptoms get too much for you. You can find out more about BCNA’s Symptom Tracker or use it by downloading BCNA’s My Journey app. For more information visit https://buff.ly/3CnfWTb Have you ordered the all new BCNA Christmas Baubles? This year decorate your tree with our 2 pack handcrafted Christmas baubles in support, in celebration or in memory of someone you love. (Even just for you) Our new 2021 design features a series of Pink Ladies, Blue Man and White Lady to represent the women and men affected by breast cancer and those that we have lost to the disease. For only $15 the 2 pack of baubles is packaged in an opaque gift box and each unique order on the BCNA online store will receive a free gift tag and sheet of A3 Christmas wrap, while stocks last. A perfect gift to show you care, or simply to adorn your own tree or the trees of your family. Order your baubles today at: https://pinksportsday.bcna.org.au Cancer Council – Your Guide to best cancer care Cancer Council have finalised the second edition of the consumer guides for the Optimal Care Pathway suite of resources. The guides are designed to help newly diagnosed patients to make sense of what should happen; helping with what questions to ask your medical team to ensure you receive the best care (Cancer Council 2021). Please find the breast cancer consumer guide (available in seven languages) via the link Guides to best cancer care | Cancer Council Podcast Upfront About Breast Cancer Podcast ‘Advanced Care Planning’ – Taking Control of Your Future Living with metastatic breast cancer often means you need to make decisions about your treatment and care. As well as working with your treating team to work out decisions surrounding your current care, it’s also good to think ahead and talk about the care you may want in the future, if you are unable to communicate your preferences for care yourself. In this episode we’re joined by Dr Sonia Fullerton. Sonia is a consultant in palliative medicine who assists in patient centred decision-making and advance care plans. Listen via this link or wherever you get your podcasts: https://buff.ly/3FGumQs As some of our Online Network members have pointed out: Advanced Care Planning is an important consideration not just reserved for someone with an illness, as it is the process of thinking about who would speak on your behalf in the event that you are unable to make those decisions in the future. Webcast The Role of Radiotherapy in the Treatment of DCIS and Early Breast Cancer -REGISTER NOW! BCNA are holding this webcast on Thursday 9 December, 7:00 pm – 8:00 pm AEDT. The webcast will explore the use for radiotherapy including the benefits for the treatment of DCIS and early breast cancer, current and emerging techniques of radiotherapy delivery, the planning process and the factors that influence delivery, side effects and ways to manage them, follow up care and the costs associated with treatment. Register now via the link below and comment below the questions you would like answered on radiotherapy. https://bit.ly/3p8edwn Books / Movies/ TV Series/ Documentaries Well its time to break out the Christmas movies (If you are a fan like me). One of the all-time classics with James Stewart and Donna Reed ‘It’s a Wonderful Life’ is a must watch every year. Hope you enjoyed the content this week and 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 “You are the first time you’ve ever happened; YOU and NOW are a unique occurrence of which you are the most reliable measure of all the possibilities.” – Will SmithFriday Update 20th January 2022
Hello members, Welcome to the first 2023 Friday Update! Myself and the Online Network moderators want to thank everyone who kept in touch over the closure period to highlight items that required attention. This was appreciated and helpful. I hope that you are becoming more familiar with the new format of the Online Network and I am continually gathering feedback, which is much appreciated. The 'Navigating the online community' guidelines are slowly being updated in the background and during the year I hope to add more video instruction. Enjoy the update! Community Highlights Let's look back on some of the engagement and activity on the Online Network in 2022: 1071 discussions 6,324 comments 437 contributors 2,886 active users 776,828 page views Top 5 Popular forum discussions in 2022 Members new and old may have missed some of the forum discussions that have received the most comments in 2022: 1. Friday Funnies 2. Wise words .... 3. Creative Corner! 4. Mastectomy this Thursday.. 5. I'm confused New Private Group in 2022 In 2022 we created the new 'Living in Regional, Rural and Remote areas' private group. A place for discussing topics and issues with people who have similar experiences in accessing treatment and support. Welcome to the 36 members who have joined the group so far! Community News BCNA's 25th anniversary year We are very excited about our 25th anniversary year 2023 and will see a number of iconic events return, including Carman's Fun Run next month, the Pink Bun campaign in May, and of course the Field of Women in August, where we will once again take to the field of the MCG to show the power of pink! Policy and advocacy will continue to be a priority this year, as we work to improve equity of access to optimal breast cancer care, and improve experiences of living well with and beyond breast cancer. We will continue to support you with our many helpful resources, including our Helpline, new look Online Network, webcasts, podcasts, My Journey, along with in-person support through our Information Forums. We can't wait! Field of Women registration of interest form and more information: https://bcna.live/FieldOfWomen2023 BCNA's Digital Resources We have had quite a number of new members to the Online Network in December and January that may not be aware of BCNA's full range of digital resources : Our digital conferences share insights from health professionals, trusted advisors, and those with a lived experience. Our one hour on-demand webcasts provide access to helpful, up-to-date information. Our Upfront About Breast Cancer podcast series provides raw, real and honest stories from those who have had their own breast cancer experience, as well as providing access to the latest information from a range of healthcare professionals and experts. Listen or view at your convivence at any time! Check out our large library of free digital resources here: https://buff.ly/3Gdjs7K Carman's Fun Run Carman’s Fun Run which will take place on Sunday 19th February. Get on board now to support Breast Cancer Network Australia while enjoying a fun day out with your family and friends. There are loads of fundraising incentives and prizes to win! Plus, the Top 20 fundraisers will be invited to an exclusive VIP breakfast at Carman’s HQ on Wednesday 15 February! Register via the following link: https://bcna.live/CarmansFunRun BCNA Forums in 2023 Save the dates for BCNA forums for 2023. The event registration form for the forums becomes available closer to the dates: Port Lincoln 7 March 23 Adelaide 8 March HP event (supporting Survivorship conference 9-10 March) Warrnambool 28 March Darwin 16 May Darwin HP event 17 May Yarning Circle 18 May Darwin Hahndorf SA 13 June Bunbury WA 22 June Coffs Harbour HP event 6 September Coffs Harbour 7 September Shepparton 22 November Counterpart Online Workshops Counterpart offer a range of free sessions for women impacted by cancer. You can check out the upcoming events for February via the link Events for women with cancer - Archives - Counterpart There is the session 'Scanxiety for women living with metastatic cancer' workshop on the 28/02/2023 Events for women with cancer - Archives - Counterpart New Helpline Services Staff - Risha We had the lovely Risha join BCNA's Helpline Services team in 2022 and I thought it would be nice to introduce her formally to the Online Network. Risha hails from India, having been born and raised there. She came to Australia for her higher studies, way back in 1997 and has stayed on since then as she met her husband here. Both just fell in love with Australia- its natural beauty, easy-going lifestyle, and super friendly people and they never wanted to leave. Risha has a bachelor’s in business and has had extensive experience in client services within the public service sector, having worked in quite a few key departments spanning over 10 years. Risha took a professional hiatus to be able to raise her two beautiful boys who are now sporty tweens. Back in the workforce in a full-time capacity, she is all settled into her new role in Helpline Services. Risha is very excited to be a part of BCNA as ‘giving back’ is a big part of who she is, and she loves nothing more than helping others. When she is not working for BCNA, she is busy doing the mum thing and discovering new places, foods, and adventures with her three special boys. Take care and if you have feedback or any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Pat_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 Monday-Friday 9:00am - 5:00pm (AEDT) alternatively, you can email contact@bcna.org.au The mod team – Mez, Carissa, Jenny, & Pat “Write in your heart that every day is the best day in the year”. – Ralph Waldo Emerson
