Podcasts are awesome!
Hi there Gail here. This is my first post. I was diagnosed on 24 May (7 weeks ago today) and had surgery 2 weeks later on 7 June. I start radiotherapy on 29 July. After that, on to hormone blockers, which I am most definitely not looking forward to. The past 7 weeks have been a whirlwind and it is only this week that I have felt up to starting to access some of the resources on BCNA's amazing website. I have been listening to the Upfront podcast series 'What You Don't Know Until You Do' and am up to episode 7 of season 1. Based on the first 6 episodes, I cannot recommend highly enough. So insightful, engaging and comforting. I find myself constantly nodding my head because much of the discussion resonates so strongly with my cancer experience to date. It's nice to be able to make some sense of it all and to know I'm not alone. Cheers, Gail 🥳
Welcome New Members - 5th October 2023
Welcome to our new members joining the Online Network recently: @MadeleineD @Robin_D @Gloria62 @Tess7 @Jnet @Moomus @Bronwyn_S @An13 @Ineke @TJC @pompeygirl75 @CMJ @Ead @lookingupwardsalways @LKeogh @leita @Mhizyelh @Brabo @HelenlovesSnoopy @Nadia @michelle79 @lekirk @sbtacey @Angpabo @Isabella16 @Swanie @smerdot @sagregor2 @SamL890 @Beccy @mel_bell @Skye_Lea @kj1974 @QuiltyGirl63 @Clancy @Lou23 @galley @Amyfan @lucygoose @christine_m @Dashi @mjacks03 @Raa @philcarly @AngeB2471 @anniesax @RiRi @annmareeh @CSS @quinny @mdfleet @Ronda @Paulsy @Cindi @RoseO @Missey @becp @Kwokker @FVI @Flossie57 @Tanval10 @TAG @Bevchild @desstep @Brookeside @Pamelac @aipac1 @caitjenbenmum @Charliwillow @MalleeMiss251 @Kebel @Pot @paghona @swerks @JaneMarie @Jes @Marly100 @Sunflower2023 @AmyUppy @maim_nigel @Jemma @Sandramd333 @K_Boulton @BMM @kherri02 @fgeange @cece @r_j151 @Kaypl @BC1958 @jess15 @clarereo @Sharon_Maxsted @Brianna @DebPearson @smillsbcna @Witch @Jenmus @Jewelz @Sarah_WA @Forkcancer @Margie5712 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
June Content Round-Up
Hi members, I hope you have all had a great month! Please find the content round-up below for June. Do you have any feedback or have any ideas of what you want the team to cover? Please send me an email acox@bcna.org.au – I’d love to hear from you 😊 Enjoy! Amelia Podcast: Episode 44: Work after breast cancer: Tackling the difficult conversations Joining us for this episode of Upfront are Greg Smith and Lisa Edgar. Greg has more than 20 years’ experience in executive coaching, mentoring and human resources consulting and has successfully led major organisational change programs in large organisations. Lisa is a BCNA member and had been working as an HR manager for three years when she was diagnosed with breast cancer in 2012 and stopped work to focus on her recovery. Unfortunately, Lisa did not receive the support she needed from her employer. We hear about how best to approach your employer to discuss your diagnosis and treatment and the impact it may have on your ability to work, what support you should expect from your workplace, challenges you may face when working after a diagnosis and what you can do if your employer is not supportive of you. Listen here. Ask the Expert: Managing side effects of hormone blocking treatment with Dr Michelle White We heard from medical oncologist Dr Michelle White and BCNA Consumer Representative Kym Berchtenbreiter. Michelle specialises in treating women diagnosed with breast cancer and is the lead investigator for several local research studies and the development and conduct of clinical trials. Kym was diagnosed with early breast cancer in 2009 and will discuss the side effects she experienced from hormone-blocking treatment, her strategies to manage them and her advice for others. This session addressed what you need to know about hormone-blocking treatment, including common side effects and how you can manage them, and how to ensure a good balance between quality of life, risk of recurrence and control of disease progression. The on-demand link will be available next week via the BCNA website. Information Forum: This month we hosted an Information Forum in Launceston. Thank you to those who joined us. We will have on-demand videos of the presentations on the BCNA website in the coming weeks so keep an eye out. You can view the on-demand videos from the Ballarat Information Forum via the BCNA YouTube channel. The Beacon: The Beacon launched this month and you can view it via the BCNA website. In this edition of The Beacon, you’ll hear about a woman’s experience with meditation and mindfulness following a breast cancer diagnosis, discover the benefits of mindfulness from our expert, discover the power of a conversation with someone going through a similar experience and learn about why exercise is the wellbeing wonder drug and how you can get into it. Plus, much more!May Content Round-Up
Hi members, I hope you have all had a great month! Please find the content round-up below for May. Do you have any feedback or have any ideas of what you want the team to cover? Please send me an email acox@bcna.org.au – I’d love to hear from you 😊 Enjoy! Amelia Ask the Expert: Managing cognitive changes related to breast cancer treatments with Jo Lewis We heard from occupational therapist Jo Lewis and BCNA member Kate Keogh Murray. Jo has over 20 years’ clinical experience as an occupational therapist and her clinical work specialises in workplace rehabilitation and work health and safety. She is currently completing her PhD, investigating how cognitive changes experienced by women with breast cancer impact on return to work. Kate was diagnosed with early breast cancer in 2017 and is currently experiencing cognitive changes due to her breast cancer treatment and prescription medication. This session addressed what you need to know about cognitive impairment following breast cancer treatment, including key causes and symptoms you may experience, effective strategies and practical tips to help you manage symptoms, and where you can find help. Watch here. Webcast: Managing long-term side effects of breast cancer treatment In this webcast we heard from medical oncologist Professor Bogda Koczwara and BCNA Consumer Representative Naveena Nekkalapudi. Bodga is a senior staff specialist at the Flinders Centre for Innovation in Cancer where she developed a Survivorship Program and is the Cancer Council SA’s Clinical Investigator for chronic disease management after cancer. Naveena was diagnosed with early breast cancer in 2014 and discussed the long-term side effects she experiences, her strategies to manage them, and her advice for others. This webcast addressed common long-term side effects of breast cancer treatment and how you can manage them, explained why ongoing support and follow-up care is important, explored the role of survivorship care plans and why you might need one, and let you know about support and resources available to you. Watch here. Information Forum: This month we hosted our first Information Forum in Ballarat. Thank you to those who joined us. We will have on-demand videos of the presentations on the BCNA website in the coming weeks so keep an eye out. On Wednesday 22 June we will be coming to Launceston. For more information or to register, visit the BCNA website. The Beacon: The June edition of The Beacon launches tomorrow! You will be able to view it on the BCNA website. In this edition of The Beacon, you’ll hear about a woman’s experience with meditation and mindfulness following a breast cancer diagnosis, discover the benefits of mindfulness from our expert, discover the power of a conversation with someone going through a similar experience and learn about why exercise is the wellbeing wonder drug and how you can get into it. Plus, much more!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.Podcast Survey Upfront About Breast Cancer What You Don’t Know Until You Do (Dr Charlotte Tottman)
Hi everyone, We hope you all have been enjoying our 10-part podcast series, Upfront About Breast Cancer - What You Don’t Know Until You Do, with Dr Charlotte Tottman! BCNA values your feedback, and we want to ensure we continue to develop podcasts that are relevant to you, our members, and your breast cancer diagnosis. To be able to do this, we have created a survey which explores how the podcast series has currently helped you, and what you’d like to see more of. Please note, the survey is completely anonymous. https://limesurvey.mq.edu.au/index.php/157549?lang=en
Podcast Survey: Upfront About Breast Cancer - What You Don’t Know Until You Do, with Dr Charlotte To
We hope you all have been enjoying our 10-part podcast series, Upfront About Breast Cancer - What You Don’t Know Until You Do, with Dr Charlotte Tottman! BCNA values your feedback, and we want to ensure we continue to develop podcasts that are relevant to you, our members, and your breast cancer diagnosis. To be able to do this, we have created a survey which explores how the podcast series has currently helped you, and what you’d like to see more of. Please note, the survey is completely anonymous. https://limesurvey.mq.edu.au/index.php/157549?lang=en
Podcast for the medical fraternity
There are two other discussions about BCNA creating podcasts for patients, but what I'd really like to see is a podcast aimed specifically at the young medical students, interns and registrars. They seem to stumble around, trying to develop a bedside manner with little guidance as to how to behave. Unfortunately, they seem to be emulating the senior doctors, only picking up the worst traits of haste, indifference and disregard. Here's my top five pointers: 1. Please learn my name. Please ask me whether I prefer Jacqueline or Jacqui. Don't assume that the name on the file is how you should address someone. 2. Please don't tell me how busy (and important) you are. I'm here because I have a life-threatening disease and I'm feeling vulnerable. Telling me how over-worked you are just diminishes my significance in the situation. 3. Listen. Stop and listen. Stop, listen and explain. Instead of asking me "any questions?", ask me "what is your biggest concern right now". 4. Your opinion is not the most important in the room. You are here to give me guidance and options, not to dictate the course of action YOU want. 5. Don't belittle my source of information. When I tell you that the lived experience of BCNA members differs from your textbook, believe me. What other messages would you like medical staff to learn?
