Friday update Tuesday 26 March 2019
Hello everyone, Welcome to our Friday update (my apologies for not posting on Friday, I was out of the office). We have had quite a few new members join our online community over the last few weeks. As many of you have mentioned, ‘it’s the club that no one wants to join’ but it’s great to see such wonderful peer support being provided to new and existing community members. This is what our online community does best and it’s heartening to read comments from members 'Thank you to everyone that commented it really means a lot ' Newby24 'Again thank you for your thoughts and comments, it is great to know we have somewhere we can talk about things and with people who Get it' GavinCH 'Thanks for the words of encouragement and support' Bris1976 'Well thank you girls for your lovely words of encouragement😊 ' Jackie50 Some housekeeping… Deleting content: We have recently been asked about what the process is for deleting content posted within the online community. If you have posted something and have missed the 15 minute window allowed to edit a post, please contact one of the moderators who will edit or delete the comment that you are concerned about. Additionally, if you are concerned about someone else’s comment or discussion and think it should be deleted, please check the community guidelines first. If you think it breaches the community guidelines, contact the moderators and we will review the post/discussion. Deleting content from the discussion threads is a decision that is not taken lightly by the moderation team. It is disruptive to the flow of conversation and moderators will only remove content if it is in breach of our community guidelines. Sometimes you may not like or agree with a discussion or post. This does not mean it should be removed. A very small number of members have asked to have their content deleted when they decide to leave the community. We will no longer be deleting posted content when someone leaves. If you decide to leave the online community, your posted content will remain. This is not a practice in other similar online forums and as we have previously stated is disruptive to the flow of conversation and community in general. We therefore strongly encourage members to self-moderate and to review content prior to posting. We also would like to remind you that the general discussion forum is not private and that posts may appear in ‘google’ searches. To maintain your privacy we ask that you do not use your real name as your username and avoid posting specific details that may identify you, such as where you live etc. Notifications: We have also been asked about managing online community notifications and have contacted our developers. We have been told if you tick notifications, you will receive notifications for all the threads that you have posted in. There is currently no process to select which threads you would like to have notifications and which you do not want notifications. One way around this is within the users' profile you can edit your preferences to disable 'Notify me when people comment on discussions I've participated in' and enable 'Notify me when people comment on my bookmarked discussions' and then you can choose to bookmark and un-bookmark as you wish. Community Guidelines: We are currently in the process of updating our community guidelines and will have them available online in the next few days. As this is your community, please don’t hesitate to contact @Giovanna_BCNA or @Marianne_BCNA if you have any questions or concerns. The Community Guidelines and Navigating the Online Community can be found in the blue toolbar at the top of your page titled ‘Community Info.’ Latest News Launch of the new My Journey Online Tool 13 March 2019 BCNA were very excited to officially launch the new My Journey Online Tool on Wednesday 13 March 2019. As you know, the tool provides you with information that relates to your own breast cancer diagnosis (be that DCIS, early breast cancer or metastatic breast cancer) and personal circumstances, so you’re empowered to make decision that are right for you. For more information click here to see the video starring some our fabulous BCNA members. If you know someone that has been affected by breast cancer, they can access the My Journey online tool at bcna.org.au/myjourney. BCNA welcomes the TGAs approval of Nerlynx (neratinib) BCNA welcomes the Therapeutic Goods Administration’s (TGA) approval of the drug Nerlynx (neratinib) as a new treatment option or Australians diagnosed with HER2-postive, hormone receptor positive (HR-positive) early breast cancer. For more information click here New AIHW reports highlights more needs to be done for Australians diagnosed with Metastatic Breast Cancer BCNA is calling for more to be done for Australians diagnosed with metastatic breast cancer following the release of new statistics that show the five year survival rate for metastatic breast cancer is 32 per cent. For more information click here Community highlights 1. Menopause belly Great thread commenced by @Kiwi Angel with an interesting article posted discussing menopause belly, what causes it and how to fix it. Loved the comment by @Zoffiel ‘my belly lies next to me on the bed’ 2. Newly diagnosed and overwhelmed commenced by @Penny001 who has been provided with a treatment plan and feeling quite overwhelmed by it all. It all seems so insurmountable to begin with and best advice is to take it day by day. 3. Sewing...does anyone sew? Great thread commenced by @jan61 about sewing for some downtime. What great photos of some of your sewing projects! Community news Common Survivorship Issues Directory There has been lots of discussion recently within our online community regarding cancer survivorship issues. The Common Survivorship Issues Directory from the Australian Cancer Survivorship Centre, is a directory that provides evidence based information for health professionals and people who have experienced cancer to best manage the following issues Anxiety and depression Cancer related fatigue Fear of cancer recurrence or progression Fertility Issues with thinking and memory Menopause Pain Returning to work or study Sleep issues To access the directory, click Common Survivorship Issues Directory Reminders Understanding lymphoedema following breast cancer treatment Thursday 28 March 2019 click here to register Dubbo Forum Thursday 4 April 20-19 to register click here To help evaluate a new menopause study click here This week’s reflective quote 'Give the ones you love wings to fly, roots to come back and reasons to stay'. Dalai Lama Hoping you have a good week everyone, take care of you Regards GiovannaFriday update 24 April 2020
Hello everyone, Welcome to our Friday update! We have had more than 90 new members join our online community this month! Welcome everyone, see our guidelines for navigating the online community which will help you get started online. Community Highlights 1 Getting ready for chemo, any advice? All the best with your upcoming treatment @Sabina33, you got this. 2 Friday update from the roller coaster! @LoisLois thinking of you and hope that roller coaster is slowing down. 3 Friday Funnies check out @arpie post, every time I look there is something else to find! This is a great article that I came across from BeyondBlue and something we all need to do for ourselves on a daily basis. Why you should do something for yourself every day BCNA news and events BCNA is pleased to hear some elective surgery restrictions have now been lifted Breast reconstruction and IVF to resume Cancer Community unites! Since the outbreak of the pandemic, BCNA has been working with government, Cancer Australia, Cancer Council Australia and our clinical advisers (breast cancer clinicians) to make sure we have helpful, relevant and up-to-date information available to help our members through this challenging time. View message here Cancer Community unites for patients in face of Covid-19 Thrivor APP Thrivor is a patien t- centric platform that provides clinical trial networks a better way to manage appointments, communications, and payments. Thrivor can be accessed via a portal or app read more April Beacon out now! BCNA’s annual fundraising appeal has just been launched to support our extended Helpline hours and new online resources. We want to ensure that no one affected by breast cancer feels alone. If you can, please consider making a donation. Every little bit helps! We have a special invite for BCNA supporters only. If you purchase a $10 ticket on 1 May and nominate BCNA as your chosen charity you will have a chance to win a $250 Wish gift card on the day in addition to going into the draw to win the Raffle’s first prize: $250,000 in gold bullion plus hundreds of other great prizes. It’s a great way to support BCNA from the comfort of your own home and have the chance to win yourself a fabulous prize. Remember, buy a ticket on the 1 May! Click here! This week’s reflective quote "There are only two days in the year that nothing can be done. One is called yesterday and the other is called tomorrow, so today is the right day to love, believe, do and mostly live." - Dalai Lama Take care and enjoy your weekend, the mod team Giovanna, Riki. Laura, Michelle, Rosie, Sandra & PatFriday update 16 November 2018
Hello everyone, welcome to Fridays update. Wow, where has 2018 gone! Can you believe it’s only 5 weeks till Christmas… I will be hosting my second Christmas lunch this year at my place for about 15 people. I must have done a good job last year as they are all coming back for seconds!! The business of this year at BCNA seems to be subsiding slowly. The My Journey online tool has been extremely well received by health professionals and by women newly diagnosed with breast cancer. Work continues to ensure that health professionals are confident in making referrals to the online tool and content continues to be added as the resources become available. The information regarding Ductal Carcinoma In situ (DCIS) will be available by the end of the year. BCNA held the last in a series of information forums this Wednesday 14 November in Whyalla South Australia. The forums provide practical information to help manage the physical and emotional effects of a breast cancer diagnosis. The forum was really well received and plans are now underway on the forum schedule for next year. Community Highlights 1. Feeling very overwhelmed Thread commenced by @Kate62 about her experience of having lumpectomy and hearing the news that she needs further surgery. 2. On Our Walks Great thread that continues to highlight some of nature’s beautiful scenery! 3. Our gardens Great thread commenced by @Annie C, with beautiful photographs! Community news Standard for Informed Financial Consent Many of you may have heard about the Standard for Informed Financial Consent which has been put forward by Cancer Council Australia, Prostate Cancer Foundation of Australia, CanTeen and BCNA and proposes a standard for informed financial consent as a key component of delivering quality care. The standard supports doctors and practices to engage in activities that enable greater transparency around fees charged to enable patients to better consider the likely financial impact to them. A draft of the standard is available online for public feedback till 15 February 2019. Click here for more information from Cancer Council Australia. Here is a recent Article in the New Daily which talks about the new Standard, as well as the high financial costs of cancer more generally. Article Campaign by the Advanced Breast Cancer (ABC) Global Alliance BCNA is proud to be part of the Advanced Breast Care Global Alliance that aims to improve and extend the lives of men and women worldwide. Parliamentarians in the European Union are being called on to support those returning to work by offering flexible work arrangements. BCNA has a suite of resources for Australians facing workplace challenges and continues to campaign for improvements. Click here for link to work and breast cancer Campaigners call for stronger rights to work for people living with breast cancer article Jean Hailes for Womens Health You may like to review the November newsletter from Jean Hailes, there are some great articles including one called ‘Hormonal health – clues made clear’ Carmen’s women’s fun run Sunday 2 December St Kilda Melbourne Walk, Run or Just Have Fun The Carman’s Women’s Fun Run is proudly supporting Breast Cancer Network Australia (BCNA). Whether you walk, run or just have fun, it’s all about getting together with friends and family and having a great day full laughter and good times. Help us turn St Kilda pink on Sunday 2nd December and don’t forget to start your fundraising page when you register and share it with your support crew. Paying it forward… BCNA member and Intensive Care Nurse Natt McGregor is paying forward the care she received during her breast cancer treatment by trekking 124 km across Scotland. She and seven friends will take off in April 2019 in celebration of survival and in memory of Natt’s best friend who wasn’t so lucky. Take a look at their trek in training and lend your support. https://www.facebook.com/Tartan-About-Rob-Roy-Way-Walk-for-Cancer-164408394209161/?ref=bookmarks Hoping you have a good weekend everyone Regards GiovannaCommunity Update 3 May 2021
Hello everyone, Welcome to our community update. Breast Cancer Network Australia recently held the ‘Living the best life you can with breast cancer’, virtual conference. We would like to thank those who joined the online event. The on-demand video is now available for viewing. Please register or login to view the webcast here. Community highlights Every week we have lots of great discussions within the online network, here are some that you may have missed. 1. One year since the diagnosis feeling strong and well commenced by @Cath62 great to hear you are feeling strong and well. 2. Is my chemo working? Commenced by @heathfield so good to hear you are feeling part of this amazing community. 3. What pets do you have? Love those pooches @Halla! Community News My Journey Symptom Tracker & APP Since we launched the My Journey online tool in 2018, we’ve heard from many members who have told us that a symptom tracker, as well as the ability to download the resource as an app, would add real value to My Journey. We’re delighted to announce that we’ve responded to your feedback, and have introduced to My Journey both an in-built symptom tracker and downloadable app. Read more To all our community members, I wanted to take this opportunity to let you all know that I will be leaving BCNA in the next couple of weeks. It has been an amazing 3 and half years and I thank you all for allowing me to be part of such an amazing community and to share in your experiences. Wishing you well, take care of you, kind regards Giovanna. If you have any concerns while online, please contact one of the moderators - @Jenny_BCNA, @Carissa_BCNA, @Sandra_BCNA, or @Anna_BCNA. If you need to speak with someone regarding your concern, please call 1800 500 258 Monday to Friday 9 am till 5 pm. Alternatively you can email contact@bcna.org.au This week’s reflective quote ‘There can be no greater gift than that of giving one’s time and energy to help others without expecting anything in return.’ - Nelson Mandela Have a great week everyone, The mod team Carissa, Jenny, Sandra, Anna, Pat & MichelleFortnightly update
Hello everyone, Welcome to our Fortnightly update. Hoping that this newsletter finds you travelling well, looking after yourself and staying cool in what has proven to be a very hot summer! Thank you to everyone who responded to our request for a possible interview for our next Beacon newsletter. Your details have been forwarded to our communications team who will be in touch. Tagging new discussions A gentle reminder to tag any new discussion you commence in the online network. Adding tags to your new discussion will enable the thread of conversation to come up in searches within our online community. When starting a new discussion, select a category and give the discussion a title. Then type your message. Underneath your message you will notice a text box titled ‘Tags'. For example if your post is regarding hormone therapy, just type ‘h’ in the box and a list of tags will appear. You can then click on the correct tag which will then be added to the tag box. You can add more than one tag. If you have any concerns don’t hesitate to contact me @Giovanna_BCNA. Community highlights 1. Dealing with emotions Great thread commenced by SharonP which highlights the time after treatment has completed. How best to manage anxiety about returning back to work. 2. Music to soothe your soul…or pump you up….or let out the rage… Great thread commenced by KarynJ which highlights the power of music to help with managing emotions or soothing the soul. 3. Aromasin and weight gain, now I know I’m not going mad… Great thread commenced by melclarity regarding Aromasin and weight gain. Community news World Cancer Day 4 February 2019 World cancer day was held on 4 February and the theme for this year was ‘I Am and I Will’. The aim of world cancer day is to raise global awareness of cancer, by highlighting cancer and raising our collective voices to empower individuals and governments to take action. Click here for more information. Host a Pink Sports Day to Play for BCNA. A Pink Sports Day is a great way to show support to everyone in your community affected by breast cancer and offers a fun and easy way to raise funds for Breast Cancer Network Australia (BCNA). BCNA provide a free support kit with posters, pink lady silhouettes, tattoo transfers, balloons and donation tins as well as pink socks and shoe laces available to purchase to help “pink up” players on the field, ground or court! To find out more or register your Pink Sports Day to Play for BCNA go to: www.bcna.org.au/pinksportsday Counterpart – Women supporting women with cancer. The recent Counterpart newsletter highlighted some great upcoming events which included some webinars that you may be interested in viewing. There has been many a discussion in our online community regarding peripheral neuropathy, a very distressing side effect of the ‘Taxane’ chemotherapy agents. Consultant Medical Oncologist Shirley Wong will talk about this condition and what can be done to help manage this distressing side effect. In light of the recent online discussion regarding cannabis therapy, you may like to view the ‘Medicinal cannabis’ webinar and hear from Dr Becky Chapman, Staff Specialist in Palliative Medicine and Medical Oncology at Bendigo Health. For more information and to register click here Advance Care Planning Week 1 – 5 April 2019 I was recently asked about advance care planning by a caller to the BCNA helpline. The query was about taking some control over future health care wishes and appointing a medical or enduring power of attorney who could speak on your behalf should you be unable to do so yourself. For some this can be a very challenging topic to think about, who do you appoint to speak on your behalf and how do I complete an advance care directive? Advance Care Planning Australia is a national program that provides information and resources for individuals, care workers and health professionals. To find out more about advance care planning in your state or territory click here Keep Shane Crawford in the Jungle! Wow Shane Crawford is still in the Jungle! I watched last weeks episode and he has survived another night. We really need your help to keep Crawf in the jungle in support of BCNA! If you can, please vote by texting SHANE to 1995 1010 as soon as you can, and as much as you can. The prize money is a HUGE $100,000 so we really don’t want Crawf leaving the jungle because of lack of votes - especially given he's such popular celeb for the win! We’re almost at the end of the road - this is where your votes REALLY count...! Vote here This week’s reflective quote Inner visions create outer reality If we want a beautiful garden, we must first have a blueprint in the imagination, a vision. Then that idea can be implemented and the external garden can be materialised. Dalai Lama Hoping you have a good week. Regards GiovannaFridays update on Monday 3 December 2018
Hello everyone, Welcome to our fortnightly update. Hoping you all had a good weekend. My apologies for not posting on Friday but I had an annual leave day. So here is our fortnightly update. With only 3 weeks to go until Christmas it looks like lunch at my place is getting bigger by the day! Thanks to everyone that has replied, see my checklist below to see that we are on track for our virtual Christmas lunch! @socoda will be bringing cake, @Annie C Christmas pudding (with traditional sixpences), @kmakm trifle, @SoldierCrab good alcohol, @arpie Ukulele’s, @Blossom1961 truffles. I will be bringing the Christmas roast and vegies and provide the afternoon entertainment game of Tombola (Italian bingo)! Thought we could have a game or two while we listen the Ukuleles! Oh almost forgot, BYO virtual chair! For anyone who has not rsvpd there is still time! Marianne and I held our second teleconference this year with our online major contributors and group leaders last week. This was a great opportunity to hear your thoughts and ideas on how we can best support new members to the online forum and our plans for moving ahead in 2019. The last Friday update for this year (I promise it will be posted on a Friday!) will be 14 December. I’m planning to include information regarding moderation of the online network over the Christmas New Year break and information regarding available support services over the holiday period. Community highlights 1.Trying not to feel resentful Great thread commenced by @Milly21. Having completed her cancer treatment over 18 months ago, Milly21 is feeling resentful about the lack of support she has received from family and friends. 2.The new me Great thread commenced by @kitkatb. The ‘new me’ describes how things have changed and how hard it can be to reengage with social activities and connections after a breast cancer diagnosis. 3. Friday funnies Great thread commenced by @kmakm, happy reading! Community news Carman’s Fun Run Sunday 2 December St Kilda Melbourne What an amazing day was had this Sunday with the Carman’s Women’s fun run. The event was a fabulous success with a total of 5,800 participants and over $200,000 raised so far and counting! Webcast – Just diagnosed what’s next? I have noticed that there have been quite a few new online members’ registrations recently including members who have recently been diagnosed with breast cancer looking for support and guidance regarding treatment options. I wanted to highlight the following BCNA resource that you may not have seen on our website. The webcast titled ‘Just diagnosed what next?’ In this webcast leading experts provide important information to assist with decision-making and coping in the early days after initial diagnosis. You will also hear from a breast cancer survivor, who will share tips on what she wishes she’d known when first diagnosed and trying to make treatment decisions. Caroline Baker, breast surgeon Kathryn Wallace, breast care nurse Renee Gani, breast cancer survivor You can view the webcast here Grateful Remembrance Jar: A Quick and Easy Thanksgiving Activity Rosie came across this great article that we thought would be great to share with our online members. We are fast approaching the holiday season and for some people this can be a very challenging time of the year. Some of us may be grieving the loss of a loved one and wishing they could be with us. This article talks about an easy thanksgiving activity that may help you to acknowledge them during this difficult time, see here International Day of People with a Disability Today is International Day of People with a Disability and the theme for this year is empowering persons with a disability and ensuring inclusiveness and equality. Coping with breast cancer can be difficult. If you are also living with a disability, you may face additional challenges. The needs of people with disabilities diagnosed with breast cancer may vary depending on individual circumstances, type of disability, financial situation, support networks, culture and many other factors. Appropriate information and support can help you to feel more in control and able to participate in decisions about your treatment and care. BCNA has resources designed specifically for people with a disability. These include fact sheets in Easy English and audio, as well as video resources here BCNA charity Christmas card pack Check out these striking, beautiful and unusual art cards, greeting cards, calendars, stationery, wrapping paper & selected gifts showcasing Aboriginal / Indigenous art, Australian artists, illustrators and designers. 10% of sales of selected cards go to BCNA. You can view the cards and order here Inspirational quote Just one small positive thought in the morning can change your whole day. Dalai Lama Have a great week everyone, take care and look after yourselves. Kind regards GiovannaFriday update 28 June 2019
Hello everyone, Welcome to our community update. It has been a very busy time at BCNA so an update has not been posted for a few weeks. It’s great to touch base with you all today and a warm welcome to all of our new members who have joined the online community over the last month. There have been some great online discussions during this time. A gentle reminder, make sure you pop into some of the other online groups to see what discussions are happening and to see if you are able to make a contribution. See link to groups here During May BCNA launched our national Pink Bun Campaign in collaboration with our ‘Breast Friends’ Bakers Delight. This has been an amazing partnership and BCNA would like to thank Bakers Delight for all their support over the last 19 years! BCNA Ambassador, Stuart Diver visited our office, flying in for the afternoon to record a Podcast for us about caring for someone with cancer. It was great to have the opportunity to hear him speak about his recent experiences. Click here to review current podcasts available. We will be adding more podcasts to this list as they become available so make sure you check in every now and then. Marianne, Rosie and I attended the Cancer Nurses Society 21st Annual conference in Melbourne last week. This was a great opportunity to connect with other cancer nurses and breast care nurses about the My Journey Online Tool. The new online tool has been very well received and we had some great feedback at the conference. We were ready with our iPads and mobile phones and were able to spend time with health professionals showing them how to navigate the tool for information and resources. Community highlights 1 Invasive Lobular Cancer (ILC) This thread was commenced by @berry and started a very interesting discussion regarding invasive lobular carcinoma and the differences in comparison to invasive ductal carcinoma. Berry has asked if we can commence a private group for women with lobular carcinoma. We are very happy to go ahead with this request but need to give the group a name before we get going. Any suggestions? In searching for some information about lobular carcinoma, I came across the following Cancer Australia publication titled ‘Clinical guidance for the management of lobular carcinoma in situ’ July 2016. Click here to view document. 2 Hormone therapy, is it worth it webcast Thread commenced by @Artferret who commented ‘Way to go, Kate! You were awesome! And thanks for having my drug holiday question featured too. I am doing a diary for it but had not contemplated continuing it after resuming the drug but now I shall, good idea. There was so much info that I will have to watch it again if I can figure out how to do it!’ What a great webcast, well done Kate! The webcast was facilitated by BCNA CEO Kirsten Pilatti who was joined by BCNA member Kate, Medical Oncologist, Dr Richard de Boer and Professor of Obstetrics and Gynaecology, Martha Hickey. There was a lot of information provided on the night and the webcast went over time. This was just the tip of the iceberg however and we are looking at having another one to answer more of the questions that we weren’t able to get to on the night. I also have forwarded on your feedback to our webcast team and will keep the online community posted regarding any updates. For those who would like to view the webcast, you can view it here. Hormone blocking therapy is it worth it? You will need to register to view the webcast if you have not already registered. 3 8 year clearance this week after triple neg recurrence Great thread commenced by @mum2jj and absolutely wonderful news! Congratulations Paula, I hope you celebrated that milestone! Awesome that it provides so much hope and encouragement to others within our online community. I loved the response by @Onemargie! @At mum2jj posted ‘Just thought I’d share this happy snap to give hope to some of you ladies full of fear and recently diagnosed. It’s good to know that it’s not always the worst news. When I had my recurrence 6 months after all my treatment completed I could not believe it. However here I am 8 years down the track. I know there are others who have not been as fortunate as me and my heart goes out to them. Treasure ever day girls. Much love to you all. Paula xxx’ @Onemargie ‘@mum2jj. I’ve just gone 3 years cancer free. I had TNBC as you know slightly different to you no lymph node involvement had 8 removed though along with a double mastectomy (my choice) no rads but 8 rounds of chemo negative for the gene. I love reading these stories. You look beautiful for a loo shot 💕. You gave me heaps of support when I was first diagnosed which I was grateful for. Big hug. Margie.’ Community news Susan G. Komen and Cancer Australia announce partnership on Metastatic Breast Cancer Research It was announced on 30 May 2019, that Susan G. Komen, the world’s leading breast cancer organisation has partnered with Cancer Australia to co fund research on metastatic breast cancer. The International Collaborative Research Partnership between Cancer Australia and Susan G. Komen will provide $450,000 over three years to fund the research of Dr Delphine Merino at Latrobe University in Australia through a Career Catalyst Research Grant. For more information click here University of Sydney research study – Online survey exploring anxiety and depression In the context of cancer Researchers at the University of Sydney are interested in your views about depression and anxiety in the context of cancer and finding out what you know about where people diagnosed with cancer can go for help and support with their emotional concerns. The study involves an anonymous online survey and may be suitable for you if you: - Are over 18 years old - Have been diagnosed with cancer in the last 5 years. To find out more click here NPS MedicineWise Most of you would be aware of NPS MedicineWise which was established in 1998 as the National Prescribing Service. The service remains committed to supporting quality use of medicines to improve health decisions and health and economic outcomes in Australia. In light of recent online discussions regarding hormone therapies and 'fillers' I accessed the website for further information and found out that they have an information line for consumers. If you would like more information on any of your prescription medicines, you can talk to a professional on 1300 633 424. For more information click here. Adelaide Survivorship Conference – Together Towards Tomorrow We're excited to announce our next Survivorship Conference will be held in Adelaide on Saturday 27 and Sunday 28 July 2019. Join us to learn about the latest in treatment and living well after a breast cancer diagnosis at the BCNA 'Together Towards Tomorrow' Survivorship Conference. Attendees will have the opportunity to attend three events over the weekend and hear from leading experts. To register click here Saturday 27 July: Two sessions will run concurrently; one session for people diagnosed with early breast cancer, and a separate session for people living with metastatic (secondary, advanced, stage 4) breast cancer. The early breast cancer session will include topics such as the future of breast cancer treatments, exercise, lymphoedema, emotional wellbeing, and behaviour change. We will also be joined by Olympian and breast cancer survivor Raelene Boyle who will share her personal breast cancer story. The metastatic breast cancer session will include topics such as the future of metastatic breast cancer treatments, exercise, emotional wellbeing, behaviour change, guided meditation and a facilitated discussion 'You look so well, when does your treatment finish?'. Saturday's conference program will be followed by a twilight Pink Lady Tribute Field Ceremony and social drinks and canapes. Sunday 28 July: Sunday's program will focus on body image and breast reconstruction. Click here to view the Conference Program This week’s reflective quote “When the mind is calm, there’s clarity; with clarity there’s contentment; with contentment, there’s compassion” Headspace Have a great weekend everyone, take care Regards Giovanna and the moderation teamFriday 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 (Oops its Monday!)
Hello everyone and welcome to Fridays update (or should I say Mondays update!) Wow what a busy month was had in October! There were lots of Breast Cancer Awareness Month activities taking place all around Australia. As you all know, we launched the new My Journey online tool and have been thrilled that the transition to the new tool has been reasonably smooth. In the first week of the launch, more than 50% of women newly diagnosed with breast cancer used the tool. For women who do not have access to the internet or a mobile phone, they will receive the hard copy My Journey Guide. You can use the link below if you would like to view the new My Journey online tool. https://www.bcna.org.au/understanding-breast-cancer/resources/my-journey-online-tool/ During the week I had an email from a colleague with the following 'Before you speak: THINK'. You may have already seen this but it really resonated with me and how we relate with others and interact in the online space. It’s good for all of us to be reminded from time to time about the power of the written word and how our words can be interpreted by others reading them. We encourage you to self-moderate and to have a think about what you have written prior to posting online. I loved this THINK before you speak (or write) and wanted to share it with you. Community Highlights 1. What do I do now? Great thread commenced by Bettyboo seeking some guidance with making some life transitions. 2. Active treatment now what? Great thread commenced by Spillsy who has finished treatment and wondering about what comes next? 3. Karma Great thread commenced by Fletch, highlighting some random acts of kindness! Community news Work and breast cancer webinar Thank you to all of you who have responded to the work and breast cancer webinar thread. For those of you who have not seen the thread, you may like to have a look and provide your input. As part of the new workplace supports BCNA launched earlier this year, we're planning a 'Work and breast cancer' webinar in November (TBC) and would appreciate your input. What topics would you like to see covered in this webinar about work? What practical advice / tips would you give someone who is currently making decisions about work following their diagnosis e.g. to work through treatment, take extended time off? What practical advice / tips would you give someone who is returning to work? What do you wish you had known? What did your employer / work colleagues do to support you through this time? Do you see this webinar being for people who have been diagnosed or would you think it could benefit employers and colleagues? https://onlinenetwork.bcna.org.au/discussion/19877/work-and-breast-cancer-webinar-seeking-your-input#latest Whyalla information forum South Australia We will be hosting a free information forum in Whyalla on Wednesday, November 14 Hear from experts on key topics such as: · Breast surgery update and how to navigate your follow-up care · Emotional impact of breast cancer · Lymphoedema management · Exercise and breast cancer, what why and how · Raelene Boyle – her personal story · Connect with others who are living with breast cancer You are welcome to bring along your partner, family members or friend. Date: Wednesday 14 November Time: Registration and refreshments from 9:30am onwards.(Forum from 9.45am – 3pm) Venue: Westland Hotel, 100 McDouall Stuart Avenue, Whyalla Norrie, 5608 Refreshments: Lunch provided. Tea and coffee available on arrival. Parking: On-site parking available. Hoping you had a good weekend everyone, enjoy the Melbourne cup tomorrow! regards GiovannaFriday update 21 September 2018
Hello everyone and welcome to our Friday update. 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, phone numbers and photos. Keep in mind that 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. 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. If you have any concerns don’t hesitate to contact me @Giovanna_BCNA. Categories Under Categories, on the right hand side of the forum screen, you will notice a tab titled Online Community Info. If you click on this tab you will find our updated Community Guidelines and a Navigating the online community guide. It would be great if you could review the updated guides and be familiar with them. See link below Online Community Info Community Highlights 1. On Our Walks Great thread that highlights some beautiful pictures of daily walks and outings. 2. Positive thought for the day xx 3. Friday Funnies Community news SO BRAVE So brave is Australia’s Young Women’s Breast Cancer charity, dedicated to empowering, educating and improving breast cancer outcomes for young women through their activities and funding research. The So Brave Breast Cancer Fundraiser Calendar is their major fundraiser and is a colourful representation of the changes that each one of the women have gone through during their breast cancer experience. It includes some key tips and information for women including each individual woman’s story. Have a look at this great website and resource. The 2019 calendar is now available for sale. https://sobrave.com.au/ WE NEED YOUR HELP! Volunteer with BCNA. Breast Cancer Network Australia (BCNA) is seeking volunteers to assist with our final 3 events for 2018. If you would like to register to volunteer to help at any / all of the events below please email the BCNA team at specialevents@bcna.org.au or call 1800 500 258. Pink Lady Night Racing at Moonee Valley Friday 5th October Moonee Valley Racing Club is partnering with BCNA for the first time in 2018 to hold a pink lady racing night which will grow over the years. Our long term vision is to grow this event to eventually include a breast cancer survivor’s walk down the straight prior to any racing. Exciting times ahead! For our first year though we’re starting small by pinking up the racing track and surrounding gardens, selling merchandise and selling raffle tickets. Location: Moonee Valley Racing Club Shift Time: 4pm – 8pm LT2.0 Fundraising Dinner Wednesday 28th November This is a cocktail event to celebrate “Leanne Taylor 2.0”. Leanne is a single mum of 2 kids who was diagnosed in March 2018. She wanted to host a party to thank everyone that is continuously supporting her and her family through her journey, while raising money for breast cancer. Her company are very engaged to help her and agreed to pay for the venue and The Big Group kindly put her in touch with us as her breast cancer charity of choice. It is expected to be a VERY fun night! As a team we’ll be pinking up the space, selling raffle tickets, silent auction items and assisting with the live auction. Location: Luminaire, South Melbourne Shift Time: 5pm – 9pm Carman’s Women’s Fun Run Sunday 2nd December Carman’s Women’s Fun Run is proudly supporting Breast Cancer Network Australia (BCNA) for the 3rd year. Whether you walk, run or just have fun, it’s all about getting together with friends and family and having a great day full laughter and good times. The BCNA volunteer team will be pinking up Catani Gardens, selling merchandise and raffle tickets Location: Catani Gardens, St Kilda Shift Time: 7am – 12pm Lymphoedema Support Group of SA (LSGSA) The LSGSA has received advice that the Member for Mt Gambier, the Hon. Troy Bell raised a Motion in the House of Assembly on Wednesday 19 September 2018. The issue raised was the lack of Garment subsidies and public services for Lymphoedema patients to the Members of the lower house. The event has passed, but you can still show your support by contacting your local MP requesting they support Mr Bell's Motion OR you can like and comment on our post about this on our Facebook page. Let's show that SA Lymphoedema patients matter too! Warm Regards, Monique Bareham President Email: lsgsa.adelaide@gmail.com Upcoming BCNA forums Saturday 13 October 2018 - Melbourne, VIC - Metastatic Breast Cancer forum Sunday 14 October 2018 - Richmond, VIC - Young Women's Conference Wednesday 17 October 2018 - Canberra, ACT Thursday 25 October 2018 - Geelong, VIC Wednesday 14 November 2018 - Whyalla, SA Hoping you have a great weekend everyone, go the TIGERS!!! Regards Giovanna
