Instagram account
Hello all. So im thinking of starting an instagram account just to document some of the ups and downs i have with metastatic , being young, dysphagia, and everything in between but for the last few weeks i am struggling to come up with a name. I thought about living with metastatic breast cancer but i think its a bit long. Any suggestions or does anyone have an account i can look at aswell? I was 27 when first diagnosed in 2009 and found it extremely hard to talk to people my age as everyone was so much older and now being diagnosed with dysphagia i am finding it hard to find people to get advice from. So i thought maybe if i can help people then it would help me along the way. Thank you
Advance notice: Bellarine MBC Support Group
A new support group is being established for women with MBC living on the Bellarine Peninsula. The group will offer support, information and resources, meeting monthly in Drysdale. It will be registered with BCNA and Cancer Council Victoria. If you’d like to be involved in the planning process, please contact me through the online network. Looking forward to hearing from you.
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.
"Living with metastatic breast cancer" has a new group leader
Although this part of the forum is open to anyone affected by metastatic breast cancer, including diagnosed women and men as well as family and friends of those diagnosed, we also have a private group for people living metastatic breast cancer. The group was led by that wonderful turtle-heart @Pink66 who passed away in January. This week @pacwood volunteered to lead the group. Many thanks to @pacwood. Let's give her a warm welcome.
Women living with advanced breast cancer
This is an on-line forum for women living with advanced breast cancer (secondary breast cancer) Somewhere to blog aiming to create a network of likewise people who can support each other through online blogging. Not to discuss treatments and what does and doesn't work, but to support each other through the ups and downs of every day life with advanced disease. My motto is to enjoy each day and the simple pleasures in life. Look forward to many more likewise women joining. We have 6 members at present and looking to grow this number. Cheers Linda Edit: Just adding a link to the group for everyone's convenience. You can find the group here: Women living with advanced breast cancer. (added by Di)
The new normal
This is my first post. My name is Heli. I was diagnosed with metastatic disease 4 years ago and have been living very well until earlier this year. I started chemotherapy in June, had major side effects and stopped the treatment but am still very unwell 3 months on. The Drs describe my condition as extreme fatigue, I was in hospital for days and feel I have come home weaker. I need help every day, I try to walk a bit every day but can't go out on my own. This is a huge adjustment and I miss my old life, walking my dog, doing yoga, driving my car....all things I took for granted. Now it is an effort to get dressed, takes me hours. I have come home under a palliative care team. This feels very scary and hard to accept. I have never been an anxious person but some times find this overwhelming and find the days very long even though I have someone popping in most days. I live with husband and he is very supportive but he is struggling too. I think I am going to have adjust to living this new life without energy. I find it very hard to ask for help but am getting there with that one. My oncologist hopes I will improve but it hasn't happened yet and I think I need to come to terms with living this way. I try to stay in the moment and not let my mind go into the uncertainty about the future. Sometimes I feel my heart will beat right out of my chest! The cancer has come back in my small intestine. It has never showed on a scan an was diagnosed after surgery. Apart from the weakness and fatigue I have very uncomfortable symptoms that make life difficult. I am on quite a restricted diet but have no interest in food. Am am going on and on here and I feel a bit chaotic in my thinking so I will sign off now. It is really draining to write too much. I wanted to post to a 'depression and anxiety' group but am un familiar with how this works so not sure where this post will end up. Thanks for listening helena
Sad Day
Hi There Ladies, its been a very long time since I have posted, I even stopped visiting the site as I find it difficult to navigate my way around. When I was going through my treatment I joined a support group through this network, we meet for lunch about once a month and are there supporting each other as best we can. I have loved this group, the women are just awesome and I hope I have given as much as I have been supported. Last week we lost one of our ladies, to say the group is gutted is an understatement, I find I have trouble even talking about it. Tomorrow we will attend Rita's funeral and continue to show our support as best we can. Losing one of our own forces us to face our own mortality, it has also helped us forge together even more. So ladies Thursday say a little pray for one of our own, another angel was given her wings. Donna
Advanced Breast Cancer support
BreaCan (Victoria) has a peer support group called 'Making Connections' for people experiencing advanced breast & gynaecological cancer. As groups for people with advanced breast cancer are few and far between, I hope this will be of use to some people. Peer support is offered via Skye. Check out http:// breacan.org.au 'Advanced Cancer Support' tab.
Feeling scared and uncertain
3 years ago I was diagnosed with stage 3 breast cancer and underwent a right mastectomy, chemo radiotherapy and then started on tamoxifen. Whilst always living in the shadow of it returning, I got on with life, saw my stepson marry, my son become a father and my daughter is just completing year 12. I thought I was ok. Then 5 weeks ago my world crumbled around me when I discovered the cancer had returned in my scar tissue and I have now been told I have advanced breast cancer. I consider myself lucky it hasn't spread to my bones or organs but I am terrified that it will. My oncologist is putting me on levistol along with a new clinical trial which she says has amazing results in the USA. She sounds very optimistic and assures me that if my cancer doesn't respond to these drugs there are plenty of others. So why do I feel so scared this time round? I guess I am now facing my own mortality and that scares me. I am only 52 and have so much more living to do. I understand that many women live with secondaries for years, I would love to hear from you and how you coped with this news. I am a positive person, I have to keep fighting as I don't fancy the alternative, but realistically I feel I have just been handed a death sentence. I am sorry if this sounds blunt, but this is how I am feeling right now. Any guidance or words of support would be greatly appreciated. Also, I live in Perth so if anyone can recommend any good support groups that may be a help to me. Thank you xx
secondary cancer
hi all some if u may remember me i started this group in 2011 when i was diagnosed with breast cancer i m glad to c the group has taken off good on u all. i had to resign from the group as my husband became unwell and passed away in august. during that time i was feeling stressed tired and a bit unwell around a month ago i was told mt breast cancer has spread to my liver . i will start some chemo next week. i was wondering if any of u girls have had a secondary cancer and if u would mind me tagging along on some of your meetups or is tbe group for newly diagnosed breast cancer.best wishes to u all
