Is the 'My Journey' app (and the restricted availability of printed resources) a success or failure?
A few years ago BCNA promoted the fact that the 'My Journey' kit reached about 12,000 out of approx. 14,000+ newly diagnosed BC people. Then BCNA moved away from printed resources to an app, also called 'My Journey'. I read somewhere in the past 6-9 months that in its first year, the app was downloaded about 6,000-7,000 times. Cancer Australia (https://breast-cancer.canceraustralia.gov.au/statistics) suggests that BC diagnoses in 2020 will exceed 19,800, indicating BCNA's 'My Journey' app may reach far fewer than 50% of newly-diagnosed people. What is the current reach of the 'My Journey' app for newly diagnosed people and the associated time-frame? How many newly-diagnosed people are, instead, requesting printed resources? A forum member recently noted the absence of annual or financial reports on the BCNA website, in view of BCNA's abundant fundraising activities. Greater transparency with the public in relation to your operations would be welcome.
Were you diagnosed with early breast cancer in October/November 2018? We need your assistance
Hi everyone, As most of you will be aware, BCNA's My Journey online tool was launched in October 2018. It was developed to help people diagnosed with breast cancer access the most up-to-date breast cancer information specific to their needs. BCNA is really keen to understand the tool’s usefulness for people who have only recently been diagnosed so TH?NK Global is helping BCNA run user testing for the tool. We will be running focus groups in February but to help us prepare for these focus groups we will be running an individual interview with someone who meets the following criteria: · was diagnosed with early breast cancer in October/November 2018 · has signed up to use My Journey online tool · can participate in an hour long interview at TH?NK GLOBAL’s South Melbourne office on 25 January (TH?NK Global is flexible about time of day). During the interview, you’ll be asked about what information and support is of key importance when newly diagnosed and for feedback about the My Journey online tool so that we can make sure it’s as relevant and helpful as possible. The session will be audiotaped, but feedback will be kept confidential. We appreciate that the first month following diagnosis can be particularly busy and overwhelming but if any of you who have been recently diagnosed feel this is something you could assist us with please private message me. Whilst we only need one person for the interview we will need further participants for the focus group so it would be great to hear from you if you are interested in participating in the group. This will be held in the week starting 11th February, again in South Melbourne.
My Journey Online Tool - looking for help
Hi everyone We're currently after some volunteers to provide their feedback about certain aspects of the My Journey Online Tool. If you haven’t heard about this tool, you can learn about it here. The task involves reading articles on the tool and making your comments in an Excel spreadsheet. All you need is a login to the My Journey Online Tool and if you don’t have one, we can help you set one up. This task can be done from home. If you’re interested, please let me know and I will provide you with more information. Feel free to private message me, email cmcqualter@bcna.org.au or call our Helpline on 1800 500 258. Thank you CarissaWelcome New Members - 5th October 2022
A very warm welcome to our newest members: @KathyG1971 @Haitch @happywombat @Atlantic @Liana_Fas @Capricorn68 @Jodez @TraceK @rickiticate @TJ254 @Seok @LouiseW @Mary73 @jess_b @Jenn_Sim1 @Stacey_ @Kelgore @MrsPicks @laurie123 @Dazzle @IWMarie @idrathernot @Spring @Nashp @Tomobun @Jen_B @sixofnine @Selkie @Bluew @fraggle009 @Naomi7_ @MBK @Ella08 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 to 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 Listen to BCNA's Upfront About Breast Cancer Just Diagnosed - What's Next? and What I Wish I Knew podcasts 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 member responses, you may like to add where you live ( eg. Sydney, Melbourne, regional Victoria etc). If you need help navigating the Online Network please message myself @Mez_BCNA or one of our other moderators @Jenny_BCNA @Carissa_BCNA @Pat_BCNA @Kate_BCNA . Please note: The online network is not moderated by staff/volunteers on Sundays, however if you need something actioned the quickest way to resolve your query is to contact the Member Support Team via email contact@bcna.org.au or phone 1800 500 258 Monday to Friday 9 am - 5 pm AEST.My Journey 'The Library'
Hi members, I thought you may be interested in the below My Journey article: https://myjourney.org.au/article/3497 The Library provides names of some books you might find helpful or interesting to read. Books in the 'about breast cancer and DCIS' and 'live well' sections have been reviewed by BCNA staff and are recommended as reliable information. Personal stories have not always been reviewed by BCNA, but may have been recommended to us by others diagnosed with breast cancer or sent to us by the author (often a BCNA member). If there is a book you would like to suggest for this list, please email us at contact@bcna.org.au or post here in the discussion and I will pass on.
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.Welcome New Members - 16th September 2022
A very warm welcome to our newest members of the past week: @Trooper @Ivyjewel @Frankie73 @FarmGirl @AmandaJane @Esther1972 @Jodster456 @DeeG @Dulilli @Penny @Cheryln38 @Tory @mummalum @Seagull @AJL26 @Jayz123 @Ruthie70 @Njs @Jojosie @Clare83 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 to 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 Listen to BCNA's Upfront About Breast Cancer Just Diagnosed - What's Next? and What I Wish I Knew podcasts 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 member responses, you may like to add where you live ( eg. Sydney, Melbourne, regional Victoria etc). If you need help navigating the Online Network please message myself @Mez_BCNA or one of our other moderators @Jenny_BCNA @Carissa_BCNA @Pat_BCNA @Kate_BCNA . Please note: The online network is not moderated by staff/volunteers on Sundays, however if you need something actioned the quickest way to resolve your query is to contact the Member Support Team via email contact@bcna.org.au or phone 1800 500 258 Monday to Friday 9 am - 5 pm AEST.Friday 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 ProverbAre you recently diagnosed and using BCNA's My Journey online tool? We'd like to have a chat
Hi everyone, We are wanting to do an article in the next Beacon on our new My Journey online tool. If you have recently been diagnosed with breast cancer (since October) and have been using the online tool, we would like to interview you for th next edition of the Beacon. It can be done over the phone so you can live anywhere in Australia and we will fit in with a time that suits you. If you're interested, you can either post here or private message me. Thanks in advance!My Journey - (new) article 'Managing Stress & Mindfulness'
Hi members, My Journey has a new article you may be interested to read and share (I admit I have a very keen interest and passion in the management of stress, particularly to empower people to develop their own toolkit of strategies). BCNA are looking at diving into this topic further next year so watch this space. https://myjourney.org.au/article/3518
