Friday Update 1 June 2018
Hello everyone and welcome to Friday’s update. National Volunteer Week 21 – 28 May 2018 It was National Volunteer week last week and I wanted take this opportunity to say thank you to all of the BCNA volunteers! We are thrilled to have such a dedicated and enthusiastic team of volunteers who provide support in so many ways for our organisation and women and men who have been diagnosed with breast cancer. A big thank you to all of you!! A particularly big thank you to those on our network who lead our private groups and those who keep an eye out for new members to the network to ensure they are welcomed. We greatly value your support. Actually a big thank you to all of you for supporting each other and creating such a welcoming environment. Resilience project Last week I had the opportunity to attend a presentation at my children’s primary school about the Resilience Project. The presentation provided ‘practical evidence based, positive mental health strategies to build resilience and happiness’. It was a great presentation and I left thinking that it not only applies to my children but that adults would also benefit from lots of the information provided so I thought I would share it with you The presenter, Hugh van Cuylenburg, had three main messages to help build resilience - practice gratitude, empathy and mindfulness. One of his suggestions included keeping a ‘gratitude’ diary and every day for 21 days documenting 3 things that went well for you. So far I’m up to day 3 of my diary! See the link below. https://theresilienceproject.com.au/ Community highlights Every week we have so much variety in the posts being shared in the online network. These can include questions about treatments, updates on how things are going, and celebrating milestones. Here are some popular conversations you might have missed: Who else can’t sleep? (2681 views) This has been an amazing thread that has provided a real insight into the problems associated with sleep while undergoing breast cancer treatment. Online members sharing their experiences of how to best manage this issue. One of our helpline nurses, Riki, attended a workshop on sleep at Peter Mac and we hope to have some resources to share with you soon. Here Goes (1947 Views) Commenced by TabooGal who said that she had tried posting a couple of times in the online forum but had ‘backed out’. This is quite normal as many of our members spend time reading prior to posting. Having been diagnosed with breast cancer, she had lots of unanswered questions. It was great to see the peer support offered to her by our community members. Community News Plan B Conference & Field of Women Bursary spots still available! We have a limited number of Plan B Conference and Field of Women Bursary spots still available! If you live in a rural or remote location around Australia and are a breast cancer survivor then you could be eligible. We are offering a $250 bursary which includes a ticket to the Plan B Conference and a ticket to the Field of Women. You can find out more information here: https://www.bcna.org.au/news-events/events/plan-b-conference/ Should you wish to apply please send your name, address and phone number to Renee Gani – conference@bcna.org.au Bosom Buddies ACT Bosom Buddies ACT are running the following three information sessions that you may be interested in: · Tuesday 19 June 10 am – 11.30 am Financial Considerations and Practical advice · Tuesday 14 August 10 am – 11.30 am Wills and End of Life Care Plan · Tuesday 28 August 6 pm – 7.30 pm Breast Reconstruction –“ to do or not to do” with Dr Farhadieh Location - Pearce Community Centre, 1 Collett Place, Pearce ACT The sessions are free and open to everyone, however you will need to RSVP for catering purposes. If you are unable to attend but are interested in any of these topics please let let Kareen Tait know and she will send you session notes. Kareen Tait, Executive Officer 0406 376 500 RSVP: email admin@bosombuddies.org.au In Danger Josepha Dietrich will be joining Kenmore Library, Kenmore QLD on the 7 June at 6.30 pm- 7.30 pm to discuss her new book In Danger. In Danger is one woman’s powerful story of how her mother’s death saved her life. When Josepha Dietrich was 21, her mother was diagnosed with breast cancer. Four years after her mother’s death, the disease reared up in Josie’s own cells, this time more aggressively. She was 34, and her high-needs baby son was not yet one. In Danger is Josie’s journey through life with breast cancer from inside the experience, capturing her energy and force-of-nature personality. She reflects on the literary works that inspired her, from cancer literature to other medical memoirs, works that helped her to explore disease and the human condition, and shed light on its darker aspects. At its heart, this moving memoir delves deep into how it feels when everything you love is in danger. Books will be available for purchase on the night, or bring your copy from home for Josie to sign. Presented as part of the Lord Mayor’s Writers in Residence series. Bookings for the event can be done online through https://www.eventbrite.com.au/e/author-talk-meet-josepha-dietrich-kenmore-library-tickets-44970628360 . YWCA Perth Programs YWCA Perth are asking for expressions of interest in attending the following programs in Term 3 for 2018. Perth Metro area Riverton Leisureplex- Corner High Road and Riley Road Riverton Friday 27 July – Friday 14 September 12-2 pm Balga Leisurepark- Corner Princess Road and Balga Avenue Balga Thursday 26 July - Thursday 13 September 12.30-2.30 pm Being winter, they only run the 2 programs, however term 4 will see 3 metro programs. They are not confirmed as yet, however they do run a north, south and central program in Term 4. Enrolment is by returning the completed enrolment forms. To obtain your pack or make an enquiry contact the YWCA of Perth, 9440 3501 or FREECALL 1800 305 150. Email: programs@ywcaperth.com.au More details are available at www.ywcaencore.org.au The moderation team and I have enjoyed reading your posts regarding your favorite quotes, here is another one I came across the other day “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face” Eleanor Roosevelt. Hoping you all have a good weekend and stay warm! GiovannaFriday update 14 December 2018
Hello everyone, Welcome to our last Friday update for 2018! With only 11 sleeps to go until Christmas it looks like lunch at my place is almost set! See my checklist below @socoda will be bringing cake @Annie C Christmas pudding (with traditional sixpences) @kmakm trifle & roast potatoes @SoldierCrab good alcohol @arpie Ukulele’s @Blossom1961 truffles @Giovanna_ BCNA Christmas roast and vegies and provide the afternoon entertainment game of Tombola (Italian bingo) @wendy55 – Pavlova and Christmas bon bons @FYONA1 potato salad & baklava. Its not too late to turn up on the day if you would like to attend, the more the merrier! So looking forward to our virtual Christmas lunch everyone! BCNA services over the Xmas period: BCNA will be closed from COB Friday 21st December and will reopen at 9 am Monday 7th January 2019. The Helpline will also be closed during this period. The online network will be moderated as per weekend moderation hours i.e. a couple of hours per day (morning and evening). During this time Rosie and Giovanna will be taking a break from moderating. Riki will be doing some shifts along with 2 other BCNAs staff, Carissa and Jenny so you will see their names popping up over this period. We understand that Christmas can be a particularly tough time. Emotions can run high and we can react to things that we would normally brush off. The online network has proven to be a fabulous place of support over the Xmas period and can be a great place to vent about some of the challenges of the holidays. Please be mindful of everyone’s need for a little extra support during this time and the importance of the community as a reprieve from day to day life. This may mean sometimes having to bite your tongue and letting some things go. This can be hard at times but important in protecting this space as a bit of a sanctuary. If anyone needs additional help during this time, the following services will be open over the holiday period. Dont forget to check in with existing supports like family or friends, your general practitioner, medical team including breast care nurse, breast surgeon, medical oncologist, radiation oncologist or chemotherapy day unit. Your treating hospitals will also have services available. Beyondblue Call 1300 22 4636 24 hours 7 days a week Trained mental health professional are available 24/7 either via phone or their website. https://www.beyondblue.org.au/ Beyondblue also have a list of national helplines and websites https://www.beyondblue.org.au/get-support/national-help-lines-and-websites Cancer Council Helpline 13 11 20 Open 9 am till 5 pm during Christmas & New Year, closed only on public holidays https://www.cancer.org.au/about-us/state-and-territory-councils/ Life line Australia 13 11 14 24 hours 7 days a week Telephone crisis support https://www.lifeline.org.au/ Coping with cancer and the holidays While the festive season is a happy time for many people, we know that it can also be one of the most stressful times of the year. For those that celebrate Christmas, the day may be different in many ways this year. You may be coping with decision-making, treatments and the general uncertainty associated with this journey. Some of our online network members having been sharing how they’re approaching the festive season this year in the conversation ‘This Christmas I will be’. Inspirational quote Peace Lies Within We are trying to get peace or happiness from outside, from money or power. But real peace, tranquility should come from within. Dalai Lama Wishing you and your loved ones a very merry Christmas and prosperous New Year. Hoping you have a wonderful day, doing what you enjoy the most with the people you love to be with. Look forward to bringing in the New Year with all of you! Kind regards Your mod team Giovanna, Marianne, Rosie and Riki.Friday update 13 July 2018
Hello everyone and welcome to Fridays update. It’s been a busy couple of weeks within the online network with lots of activity. The online conversations have been many and varied and the highs and lows have been reflective of the reality of living with a diagnosis of breast cancer. Some of the events of the last few weeks has prompted Marianne to include a few timely reminders and clarify a few things in today’s update. Our Community Guidelines clearly state that members of the community should always treat each other with respect and never attack other members of the community or the BCNA team. Whilst you are part of this community because you have a breast cancer diagnosis, that is pretty much where the similarities stop. You are an extremely diverse group in terms of the type of diagnosis you have, the stage you are at, the treatment you have had/are having and the impact of all of this on you. There is also a diverse range of backgrounds and personalities. This diversity means you are going to have a different range of experiences and opinions. You are not always going to agree. That is perfectly fine, and in fact it is what makes this community so special, but everyone needs to take responsibility for how you express and respond to these differences. Please always remember that unless you are commenting in a private group, your comments are not private and can be seen by anyone and can in fact show up in a google search. Our community guidelines state that the BCNA moderators reserve the right to edit, move, close, and delete discussions. Members who seriously, persistently, or wilfully ignore the community guidelines may be placed on pre-moderation, temporarily suspended, or banned from the online network. Decisions taken by our moderators are final and will not be discussed within the online network or privately with anyone other than the member affected. We don’t take this role lightly and always prefer the community to self-moderate and manage any issues that arise. This after all is your community. We will and do step in however when needed. To respect individual privacy we will usually manage issues privately rather than publicly but when necessary we will close or delete comments or whole discussions and will explain publicly what we have done and why. We only have minimal moderator coverage after hours or weekends so sometimes discussions will take a turn without us knowing. Please private message us to alert us to an issue if you have concerns and have not seen us respond. And please treat BCNA staff with respect. We are open to feedback and acknowledge that we may not always get everything right but we will always have the best intentions and give careful thought to how we respond to best meet the needs of the individual and the community. The community is here to provide a safe environment for people to share their experiences and receive support and understanding. It is not for receiving medical information. Our moderators are nurses and we do endeavour to correct inaccurate or misleading information but any concerns or need for individual information should be discussed with your medical team. There can always be times where something touches a raw nerve with you so if you find that you have posted something that you feel may have been a little over the top or disrespectful, you can always acknowledge your reaction, apologise and move on. You can also contact us and we can discuss your options re editing or deleting the post. We are always happy to assist. If you are offended by something someone has said, try not to fire back as this only escalates the situation. You can calmly let the other member know how this has impacted you either via a post or privately. Remember, the aim here is to resolve the issue not inflame it. Most importantly though, enjoy the online network. You are an amazing community who 99.9% of the time provide the most beautiful and thoughtful responses and support for each other during difficult and challenging times. The online community is an important part of BCNA and you experiences help shape the work that we do. COMMUNITY HIGHLIGHTS Every week we have so much variety in the posts being shared online. See three of my favourite recent conversations that you may have missed! 1. Your day in three songs Great thread started by @kezmusc, which highlights her playlist of 3 songs which are reflective of her day! 2. Beach Therapy Great thread started by @Sister which shows some beautiful photos of her morning beach walk! There is such beauty in nature, what a beautiful photo. 3. Inspiration for the week Great thread commenced by @Tracey_B with some great reflective quotes. COMMUNITY NEWS Book – This Present Moment by Meg Welchman Meg Welchman has just self-published the second edition of her book titled This Present Moment. Meg is a BCNA member who is living with advanced breast cancer. In her words, the book ‘charts how I cope with adversity as a psychologist and cancer survivor. This is the book I wish I read when I was first diagnosed- to know that almost 8 years on there is both surviving and thriving despite having secondary cancer....It would have helped me immensely.’ A review of Meg’s first book - This Present Moment: an art therapy journal by Meg Welchman is available via the link below https://www.bcna.org.au/news-events/book-reviews/#presentmoment. The Past, Present and Future of Breast Cancer Research – Public Session As part of activities to recognise their 40th anniversary in 2018 and on the eve of their Annual Scientific Meeting for researchers, Breast Cancer Trials will be hosting a Q&A event at The Art Gallery of NSW, to discuss The Past, Present and Future of Breast Cancer Research. Moderated by Journalist and Channel 10 presenter Sandra Sully, the Q&A will feature a panel of breast cancer experts and trial participants, to discuss and answer questions about the history of Breast Cancer Trials research group, key milestones in breast cancer research and clinical trials, current research trends and developments, and what can we expect in breast cancer research in the future. Panellists Professor Alan Coates AM Professor Fran Boyle AM Ms Leslie Gilham Associate Professor Nicholas Wilcken Associate Professor Prue Francis Professor Cristin Print The Past, Present and Future of Breast Cancer Research is being held in Sydney on Tuesday, 24 July from 6.30pm to 8pm at the Art Gallery of New South Wales. It’s free to attend, but you will need to register. (https://www.eventbrite.com.au/e/qa-the-past-present-and-future-of-breast-cancer-research-tickets-46059786060). The event will be broadcast live on Facebook. Q&A Event – The Past, Present and Future of Breast Cancer Research STAND WITH ME AT THE 'G Join team BCNA and volunteer at our iconic Field of Women which only occurs every 4 years. We’re looking for 300 passionate volunteers to create this event. The volunteer shift is 9am – 5pm, with shorter shifts and sedentary roles available. Please contact Chloe to register to volunteer at specialevents@bcna.org.au or (03) 9805 2529. Hoping you all have a great weekend, stay warm and have fun, Regards Giovanna
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 MurayiFriday Update 2 October 2020
Hello everyone, Welcome to our Friday update and a very warm welcome to all our new members who have joined us in the last month. We hope you are settling in and finding your way around. Don’t forget to have a look at the Groups section in the online network. We have some private and public groups that you may be interested in joining. Community News Each fortnight we have lots of great posts within our online network, here are some that you may have missed… 1. Im not ok…looking for book recommendations that will chase the blues away Commenced by @Nadi, sincere condolences on the passing of your father Nadi, look after you. 2. Does tamoxifen get easier? Commenced by @Maggs44 3. Our Gardens What a gorgeous photo @iserbrown Community update Drug company pulls pin on PBS listing of Faslodex BCNA was very disappointed to learn in September that drug company AstraZeneca has pulled out of discussions with the Australian Department of Health to have Faslodex (fulvestrant) listed on the Pharmaceutical Benefits Scheme (PBS). Read more National Carers Week 11 – 17 October 2020 National Carers week is a time to recognise the 2.65 million Australians who provide care and support to a family member or friend with disability, mental health condition, chronic condition, terminal illness, an alcohol or other drug issue or who are frail aged. Read more Fundraising update Pink Bun starts 8 October 2020 Less than one week to go until Pink Bun 2020 goes live! Just a reminder that next Thursday 8 October is the launch of Bakers Delight’s Pink Bun campaign. There are lots of great ways you can show your support: 1. Visit your local Bakers Delight to buy a 6-pack of Pink Fun-Buns. 2. If you can’t get into store, you can buy a virtual 6-pack of Pink Buns online and send a message of support to family or friends 3. Host a Pink Bun party online or in person click here to find out more and register 4. Give a shout out to your local Bakers Delight franchisee and staff either in person or on social with a photo of their bakery and #PinkBunsForBCNA. Find your local bakery here. 5. Like, comment and share BCNA and Bakers Delight Pink Bun posts on social This year, more than ever BCNA needs your support. Click here to find out more. Inspirational quote Enjoy your weekend everyone The mod team, Giovanna, Laura, Riki, Michelle & PatFriday update 2 March 2018
Hello everyone and welcome to Fridays update. How fast have the last couple of weeks gone, we are already in early March! There is lots happening at BCNA with work underway for BCNA’s 20th Anniversary celebrations. A great article was posted in the online forum titled “Breaking taboos: talking about the sexual side effects of breast cancer treatment”. It featured interviews with BCNA’s Director of Programs and Services, Kirsten Pilatti and our very own @SoldierCrab. New online network members We have had 96 new members join our online forum in the last 2 weeks. Welcome everyone! Here’s some information to get you going. Community guidelines The what and how thread Don’t forget, you can always direct message one of the BCNA moderators if you have any questions or need any support at @Giovanna_BCNA, @Marianne_BCNA, @Rosie_BCNA, @Tracey_BCNA or @Riki_BCNA or call our Helpline on 1800 500258. In the news As discussed in the last update, we will be introducing our online network moderators and other BCNA staff in each Friday update. This week its Rosie’s turn. @Rosie_BCNA Thank you for this opportunity to introduce myself to the online community. My name is Rosie and I joined BCNA in March 2017 with my first day being at Summit on the Sunshine Coast – lucky me! This was a wonderful introduction to BCNA and I was able to meet many women and men who are actively engaged with the organisation. My role is Program Coordinator of the Helpline where I work with a team of cancer nurses and Helpline officers. I am a Registered nurse with extensive experience in community nursing, research, and cancer care, including working in a Chemotherapy Day Unit, a community palliative care service, psychosocial research unit and the Cancer Council Victoria – Information and Support Service. Prior to joining BCNA, I worked with the Royal District Nursing Service but I really missed working within the cancer sector. Outside work I love catching up with my friends, doing yoga, travelling if I get a chance, and spending time with Andrew, my husband, and our miniature schnauzer, Mr. Chompolicious AKA Chompo. 2018 Pink Lady Luncheons We’re thrilled to announce the 2018 Pink Lady Luncheons in Sydney and Brisbane. You can be part of our events team and assist in the following ways: volunteer at the luncheon, source prizes or help sell tables by promoting to corporates and social media. Above all,your help to raise awareness of the luncheons is invaluable. For more information please see our website or contact BCNA at specialevents@bcna.org.au. BCNA 20th Anniversary Field of Women We are thrilled to announce that we will celebrate our 20th anniversary in 2018 with our fifth Field of Women. In 2018, it is estimated that 18,235 Australians will be diagnosed with breast cancer. Our aim is to have this number represented by women, men and children in the shape of BCNA’s Pink Lady. The Field of Women will take place on Sunday 12 August at the MCG during Round 21 of the AFL match between Melbourne and the Sydney Swans. The event will also coincide with the Plan B Survivorship conference that will take place on Saturday 11 August at The Glass House, Melbourne. https://www.bcna.org.au/news-events/events/field-of-women-2018/ Upcoming forums BCNA has a number of information forums being held across Australia over the coming months. Go to our website for further information about upcoming forums. Our next forum is the Financial Information Forum on Thursday 15th March in Melbourne. Expert guest speakers will provide you with information and practical tools to help manage challenges such as: private health insurance work supannuation Centrelink For further information and to register for the forum go to our website Ribociclib and Palbociclib Campaign: BCNA is calling on its members and their supporters to write to their local federal Member of Parliament and state or territory Senators to urge them to support the listing of ribociclib and palbociclib on the PBS. Information regarding the campaign including letter templates and a list of federal members and senators can be accessed via this link. A number of our online members have already written to their local members and some have posted their letters online. You can look at the posts here Please take a look and encourage your family and friends to do so too. Join our campaign to have ribociclib and palbociclib subsidised in Australia BCNA Helpline Have you had a good experience with the BCNA Helpline? We want to hear from you. Share your experience as a comment on this post or email Essie at ebohan@bnca.org.au If you have any feedback regarding the Friday update please contact @Giovanna_BCNA Safe travels everyone, hoping you have a restful weekend GiovannaFriday update 16/2/2018
Hello everyone and welcome to Fridays update. It’s been a busy couple of week at BCNA. You may have read that the results are in from the Beacon name survey. Thank you to everyone for your feedback, the newsletter will remain as The Beacon. I have attached the link and response from Christine Nolan, CEO of BCNA Results of the Beacon name survey Online Network Teleconference On Tuesday evening this week we held a teleconference with some of our online community group leaders and major contributors. We had seven members of our online community participate along with Marianne, Kirsten and myself. We also had another eight members email us their thoughts. We had a very productive discussion about the roles and expectations of the BCNA moderators, our group leaders and those who provide a major contribution to the online community. It was a great opportunity to chat with some of our fabulous members and the discussion was very fruitful. I’m in the process of writing a summary of the meeting and outcomes which we will post on the network soon. We are hoping to have a teleconference like this every six months and will invite different members of the community along to ensure we get a good representation. Confidentiality in the online space I wanted to raise the issue of confidentiality in the online space and remind everyone that the online network is a public space. Whilst the private groups are private, the general network areas are public and can be viewed by anyone and can also show up in Google searches. Therefore, please remember not to reveal personal or private information about others and only reveal as much about yourself as you feel comfortable sharing. If you are concerned about any information you have posted contact @Marianne_BCNA or myself and we can edit this for you. Personal Identifiable Information I have noticed lately that members are sharing personally identifiable information. That is, information that can be used on its own or with other information to identify, contact, or locate a person. This includes information such as first and last name, suburb you live in and phone numbers. As moderators, we try very hard to protect your personally identifiable information for your safety and security. To ensure your privacy we will edit out full names, phone numbers and other information that may identify you. When signing off on posts, we encourage you to use your username and not your real name. I’m in the process of updating our community guidelines and will share these shortly. Tagging conversations A gentle reminder, when commencing a new conversation online, please remember to add a tag. You will notice on the right hand side of the screen some popular tags. This will help identify conversations and will assist our online community when searching for specific topics. New online network members We have had 42 new members join our online network in the last two weeks. Welcome everyone! Here’s some information to get you going. Community guidelines The what and how thread Don’t forget, you can always direct message one of the BCNA moderators if you have any questions or need any support @Giovanna_BCNA, @Marianne_BCNA, @Rosie_BCNA, @Tracey_BCNA or @Riki_BCNA or call our Helpline on 1800 500 258. Community highlights BCNA is calling on its members to write to their local federal Member of Parliament and state or territory Senators urging them to support the listing of ribociclib and palbociclib on the PBS. Thank you to those of you that have already written a letter. The link below will take you to the online discussion where you can read a couple of letters that have already been submitted by our members. Join our campaign to have ribociclib and palbociclib subsidised in Australia I wanted to highlight the post below as it really shows how supportive, welcoming and responsive our online community is in supporting new members to the site. A recent member asked for some inspiration from others experiences as she had just been diagnosed. Could really use some inspiration from a positive experience Another post from one of our members expressed how scared she was about having her port removed and asking the online community to share their experiences. There were messages of support, encouragement and acknowledgement regarding her fears and concerns. So scared about surgery tomorrow Discussions with most comments Disappointed in The Beacons name change Radiation after lumpectomy To Port or not to Port Over the next few Friday updates we will be introducing our online network moderators. I thought I would start with myself Giovanna_BCNA Hi everyone, I started working at BCNA in late September 2017 as one of the Senior Helpline Officers and one of the moderators of the online network My background is nursing and I have specialized and worked as a cancer nurse for over 20 years. My experience is varied and I have worked in some of the major public hospitals within Melbourne. From there I moved into the community and spent a long period of time working at Cancer Council Victoria, within their cancer information and support service. Prior to commencing at BCNA I worked within the Wellness and Supportive Care team at the Olivia Newton John Cancer Wellness & Research Centre. I enjoy working in the community setting and look forward to learning more about the advocacy and policy work conducted by BCNA. I am passionate about providing cancer information and supportive cancer care to Australians affected by breast cancer. Links to relevant information on BCNA Website BCNA Latest news https://www.bcna.org.au/news/ Latest forums https://www.bcna.org.au/news-events/events/information-forums/ The financial impact of breast cancer https://www.bcna.org.au/about-us/advocacy/research-reports/the-financial-impact-of-breast-cancer/ We want to ensure that the Friday update is relevant and interesting to our members so please give us any feedback or ideas you may have about what to include. Please contact @Giovanna_BCNA Have a great weekend everyone GiovannaFriday update 18 December 2020
Hello everyone, Welcome to our last Friday update for 2020. A very warm welcome to all our new members who have joined us in the last few weeks. I hope you are settling in and finding your way around. You may like to view the following links Community Guidelines and Navigating the online community which will assist you when posting online. What a year it has been, I want to take this opportunity to thank all our online community members who continue to provide peer support to our new members and each other. I am very grateful for all the amazing work you voluntarily do for BCNA to ensure that new members feel welcomed. Providing support, guidance, wisdom and a listening ear when needed. You give of your time and energy to help others at a time of great need and I really do thank you all from the bottom of my heart. Sending one very big ‘Cyber HUG’!!! This year BCNA will close at 5 pm on Wednesday 23 December 2020 and will reopen at 9 am on Wednesday 6 January 2021. Community News Each week we have so many great posts, here are some that you may have missed… 1. First appt by @CarrieP, I hope that all went well with your first oncology appointment and that you have more information and a clear treatment plan, all the best. 2. This Christmas I will be… Absolutely great thread, love the Christmas puddings! 3. Friday Funnies my favourite this fortnight by @arpie Community Update Practical and financial assistance Help with transport, accommodation and financial costs and legal issues. Cancer Council can assist with transport and accommodation costs and in some cases can provide accommodation for regional patients and their carers travelling a long distance for treatment. Click here to see what support is available in your state or territory. Men Get Breast Cancer Too Let’s be Upfront about the fact that men get breast cancer too. 63-year-old Tasmanian Phil Purnell had no idea that men could get breast cancer when he found a lump in his breast and was diagnosed with invasive ductal carcinoma (stage 2 breast cancer) in March. In this episode, Phil shares a candid insight into his breast cancer journey as a man, which was further complicated by the COVID-19 pandemic. Also joining us is breast cancer specialist, radiation oncologist and author, Professor John Boyages, who has written booklets on the subject of male breast cancer. To listen to podcast. Vulnerability and strength. Peta Murphy on breast cancer In this special episode of Upfront About Breast Cancer, we’re joined by federal parliamentarian Peta Murphy MP. Peta was first diagnosed with early breast cancer at age 37, and found out she had metastatic breast cancer nine years later, just two days after she was sworn into parliament. We invited Peta to put a rear-view lens on her life with breast cancer and write a letter to herself. In this podcast, you’ll hear that letter as well as Peta’s story in her own words. We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting. To listen to podcast The 2020 San Antonio Breast Cancer Symposium Summary The San Antonio Breast Cancer Symposium 2020 (SABCS 2020) is one of the most important breast cancer conferences in the world and brings together the world’s leading breast cancer researchers, including those from Breast Cancer Trials. Click here to read the conference summary. Inspirational quote ‘What counts in life is not the mere fact that we have lived. It is what difference we have made to the lives of others that will determine the significance of the life we lead.’ - Nelson Mandela The mod team, Giovanna, Laura, Michelle, Pat & RikiFriday update 7 August 2020
Hello everyone, Welcome to our Friday update. A very warm welcome to all of our new members who have joined our community over the last few weeks. I hope you are finding your way around and settling in. With the Covid 19 situation worsening in some states around Australia it is hard not to feel unsettled, worried or anxious. BCNA encourage you to look after yourself, stay connected with family, friends and your medical team. If you are worried about any part of your treatment or care, please speak with one of your health care team. You can also call our helpline to speak with one of our cancer nurses for information and support. I recently attended a professional debriefing session for nurses and was reminded that it’s OK to be feeling stressed, worried and anxious at this time. That it’s a time of great change and uncertainty. That we need to be able to stop, take a breath and regroup if feeling overwhelmed. That it’s helpful to share how you are feeling with others and that showing vulnerably is not a sign of weakness, but instead what connects us all to each other. If you feel like you need some extra support, don’t hesitate to reach out or start a conversation online and connect with others. I recently re posted this article which you may find helpful that discomfort you are feeling… Community news 1. Tips for chemo and radiation Thanks @shs14 for your great tips! 2. Help on Mepitel film Great thread commenced by @FLClover. 3. Creative Corner Great post by @Blossom1961! Community updates Look Good Feel Better Virtual Workshops Free, virtual, interactive Look Good Feel Better Workshop, helping you face cancer with confidence. Look Good Feel Better are celebrating 30 years since there first workshop! They have dates set for the August and September virtual workshops. Once registered, you will be sent a link for accessing the Virtual Workshop, to register click here Cancer Council Queensland WEBINAR - Coping with the fear of cancer recurrence Tuesday 18 August 2020 2 pm – 3 pm Free webinar for women affected by cancer, their families and friends. Feeling anxious about cancer recurrence is a common challenge and a significant concern for cancer survivors. This information session will provide women and their families with helpful strategies to cope with fear of recurrence and reduce its impact on quality of life. The session will be presented by Professor Jane Turner who has more than 20 years’ experience supporting people with cancer and their families. RSVP by 16 August 2020 click here Counterparts Emotional load of living with metastatic breast cancer This is a Making Connections session for women with advanced cancer. If you are living with metastatic cancer that requires ongoing treatment and monitoring, you are also managing a complex range of concerns and stresses. Presented by Dani Bullen, Clinical Psychologist at Peter MacCallum Cancer Centre. Dani has a particular interest in working with women to manage the emotional and existential issues associated with their cancer diagnosis. Click here to view this session SA compression garment scheme Great news! The launch of the South Australian Compression Garment Scheme. This announcement by the Morrison Government and South Australian Marshall Government will mean that South Australians will have access to a Lymphoedema Compression Garment Scheme. This is something that BCNA along with the Lymphoedema Support Group SA, the Australian Lymphology Association and many others have been lobbying for. Well done to all! Reflective quote 'Do not let the behaviour of others destroy our inner peace'. - Dalai Lama What a great picture, snow on Mt Wellington in Hobart 3 days ago! Have a great weekend everyone, take care and stay warm! The mod team Giovanna, Riki, Laura, Michelle & PatFriday update 3 July 2020
Hello everyone, Welcome to our Friday update. A warm welcome to the 71 new online network members who have joined us in the last month. The Community Info tab located in the top blue navigation bar, contains our Community Guidelines and step by step information for navigating the online community. These two documents will help you to get started online. For the month of June we had 102 new discussions commenced with over 1155 comments that have helped to create great conversations and connections online. There were over 97,666 page views so lots of online activity! As many of our members say, ‘it’s the club that no one wants to join’, but once here you will find a welcoming online community with lots of support from fellow travelers. Community news 1. Still struggling with the word pre cancer after DCIS mastectomy by @averi who has been diagnosed with a low grade DCIS. 2. Good news by @Palmbeachprincess, awesome news that your recent scan showed no evidence of disease!! 3. On our walks One of my favourite threads, absolutely loving your photos! Community updates Red Energy Red Energy is proudly helping BCNA to provide resources that empower our members through COVID-19. BCNA’s Online Network is one of those resources, a safe place to discuss how COVID-19 may be impacting you and to draw on the support of BCNA’s online community members. Another resource is our COVID-19 Podcast Series which can be found in BCNA’s My Journey Online Tool. New Category COVID-19 Many of you may have noticed a new Category which has been added to our listing called COVID19. Any new online discussions regarding COVID-19 can be added under this category. Adding TAGS to discussions All new discussions in the online network need to be 'tagged' as this allows our members to search for discussions on related topics. To tag a new discussion, go the 'Tags' box under the Announce section. Type in the first letter of the word you would like to find and a list of words will appear. Choose the topics that relate to your new discussion. You can apply more than one tag to a new discussion. Life Force Cancer Foundation Life force Cancer Foundation has been supporting people living with cancer since 1993, with local support groups and programs in Sydney’s Eastern Suburbs and inner west and more recently across regional New South Wales, all run by qualified professionals. Since Covid-19, the Lifeforce supportive care programs for people living with cancer have switched from face to face sessions and meetings to online delivery via Zoom. There online group meets on a Thursday evening starting at 6 pm and concluding at 7.30 pm. From 6 pm to 7 pm there is group sharing guided by a qualified counsellor. This is followed by a guided meditation at 7 pm to assist participants to manage their stress and anxiety around cancer. Lifeforce have advised BCNA that they will be starting an online carers group shortly for carers of those with cancer including those who have lost a loved one to cancer. They currently have vacancies for new attendees in both of these groups. If you are interested, you will need to call one of the facilitators, Jane on 0412 643 751 or Caro on 0425 296 698. This is so they can introduce themselves, explain the group and answer any questions. For more information visit their website iHeard Heard a story, rumour or fanciful claim about cancer? Not sure if it’s true, get the facts. iheard has been created to dispel the many stories, rumours and fanciful claims about cancer. Ask any cancer-related question and your query will be reviewed by our experts. Learn more Fundraising Update - Pink Call out to Tradies Inspired by 21 year old apprentice plumber Tristan McCullock, the #BCNApinktradie campaign runs until July 12 and encourages tradies to wear BCNA pink socks to work and show their support for Australians affected by breast cancer. Learn more WEBCASTS & PODCASTS Don’t forget to check out BCNA Webcasts for our latest listing of webinars available to view on demand. You will need to register to view the webcast if you have not done so. Once registered, you will be then be able to log in to access the webinar. You may also like to tune into one of BCNA Podcasts, there are over 23 podcasts to choose from! Reflective quote 'I defeat my enemies when I make them my friends.' Dalai Lama Enjoy your weekend everyone, stay safe and warm! The mod team Giovanna, Riki, Laura, Michelle & Pat
