Let’s move on and remember why we are here
hi there everyone. Firstly thanks to all of you so much for all your support I have mentioned this in my other comments so won’t rave on too much about it here. I would like to now move on as I have resolved the issues I caused with those involved and would just love to start fresh with positivity. It’s pretty obvious now that no one wants anyone to stop contributing to this forum which I found very overwhelming but we all need each other so let’s re group take a breath and start over. It’s shitty enough that any of us have to be on here in the first place so let’s make it a place to laugh, vent, advise, and just support and respect each others feelings and opinions. Margie xx
THANK YOU, BREAST CANCER NETWORK AUSTRALIA NETWORK
T My name is Karen Cowley and I have been living with Advanced Breast Cancer for 12 years. I am also a very proud BCNA Consumer Representative. On Thursday 5th April, 2018 I was privileged to be invited to a very auspicious occasion at Victorian Government House hosted by The Honourable Linda Dessau AC to mark the 20th Anniversary of Breast Cancer Network Australia. I came away from this function just wanting to write down what Breast Cancer Australia Network means to me. Today I see a very modern organisation that has become the envy of many health organisations as it’s been the trail blazer not only for breast cancer survivors in Australia but by example, is the benchmark on what can be achieved by charity organisations whose existence is to give a voice through advocacy and community liaison for our most vulnerable people suffering from chronic or terminal disease. BCNA is truly the peak organisation for Australians affected by breast cancer by providing the very best support, information, treatment and care. Personally, I found out about BCNA by receiving “My Journey Kit” following my surgery in 2006. This was an invaluable practical and informative tool. I thought “wow” a lot of research and thought has gone into this resource. From then on, I was hooked, BCNA has not only provided me with support and information, but what is impressive, is that the “heart” of the organisation is its members who are encouraged to play a role. For me this has allowed me to express my challenges and triumphs without judgement or pity; pivotal in my mental health. Today, a fantastic BCNA initiative is the Online Community which allows members to connect and help and support each other and is also a portal for the BCNA organisation to keep up with member issues. From time to time I have become quite the blogger for this forum especially in the Metastatic Cancer category. Everyone is gracious and always respectful of everyone’s opinions. My personal involvement with BCNA started in 2012. What got me started with BCNA was an Information Forum in 2012 which covered a range of topics, but for me I was passionate about new technologies. Living with advanced breast cancer you are always aware of your mortality. Prof. Fran Boyle talked about T-DM1 (Kadcyla) technology. I thought it would be treatment for me so took this information back to discuss with my Oncologist. I was running out of options, so I became very active in supporting BCNA as a Consumer Representative to get Kadcyla approved by the TGA and then onto the PBS. This process took 4 years, but we got there. It was a privilege to have the opportunity availed to me by BCNA as their Consumer Representative to have the opportunity to address a Senate Committee looking into “Availability of New, Innovative and Specialist Cancer Drugs in Australia” in March 2015. Today BCNA are advocating again to get CDK Inhibitors Ribociclib and Palbocicib on the PBS. BCNA have valued my skills and have given me much needed self-esteem, and in turn BCNA have and continue to involve me in many of their initiatives. BCNA is a dynamic organisation constantly identifying ways they can affect improving outcomes for people diagnosed with breast cancer. You never know what curve balls life is going to throw at you, and it's how you deal with them that defines who you are. For now, I am living with cancer. It is my hope that we obliterate it, but I am not wasting time worrying about it. Anyone that has cancer knows that life goes on and it’s up to you to go with it. I find it very comforting to know that I am not alone and know that I can rely on BCNA to support me. Thank you. As part of the 20th Anniversary BCNA “Field of Women” Stand with Me at the “G” on 12th August. My family and I will be there. What a wonderful way to celebrate this fantastic milestone for BCNA, an organisation that has my interests and needs at heart.
'About Me'
Just a suggestion to many. If possible could members of this Online forum, include a little more information about their diagnosis and type of Breast Cancer. In the 'About Me' part of their profile. I don't know if others have trouble. But sometimes I have trouble understanding a problem and or giving advice. Especially if pieces of information appear separately in different Discussions. Only a suggestion.
I just wanted to share
Good Morning lovely ladies.. I hope you don't mind but I remembered a poem my Dad (passed) wrote many many years ago, he used to write a lot of little poems about life... well this one I found again after my recent diagnosis. and thought you all might like to read and have a little giggle.. Just on me I go up to Wollongong on Thursday to meet the Medical Oncologist and find out everything that is coming next... hoping you all had a good a weekend. much love x
Reclaim Your Curves - Choosing Breast Reconstruction - Sydney Support Lunch Sunday 24 June 2018
Dragonfly Cafe, Eden Gardens, Macquarie Park 12noon to 3pm Come along and join us over lunch – a relaxed and informal setting in which you can ask any questions you may have, share any gems of information you may have gathered, and meet up with other women who understand and share a similar experience to yours. Look forward to meeting you. Annmaree and Rosemary
Counterpart
I attended a Cancer and Wellbeing day run by Counterpart this week. We did Feldenkrais, some light aerobics and theraband work, Qi Gong and a fantastic deep meditation. There was a very good lunch and lots of time to chat and connect with the other participants. For Melbourne and Victorian folks (they're running a wellness day in Gippsland later this month), if you haven't heard of Counterpart check them out. They do all sorts of workshops and seminars. The events I've attended have always been very well run and they are free. Their new calender is coming out soon but there are also several events on in the rest of April. https://www.counterpart.org.auGrammar
Morning - As some of you may know from my last post, I have put myself on a break from the forum as I take stock of where I am at and be in the background for my baby sister who has just been diagnosed with cervical cancer. However, over the weekend I did some selective reading and found a couple of threads that were perhaps not hitting the mark. Hence I've come on and offered a couple of comments and offer this, some of you may have seen it previously, but it reminds us that sometimes what we are trying to say gets muddled: Please take care, life is too short
Popping into groups
Hi everyone just a reminder that all groups get new members and it is great if you can pop into the group and check on new posts and reply if you can help with the private groups you are members of... Lets talk about Vaginas Christians Diagnosed with BC Choosing Breast Reconstruction Etc
