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
Creative Corner!
CREATIVE CORNER: Because art is good for you Inspire and be inspired Creative Corner group is gone but that doesn't mean we should mute that creativity! Time to get inspired by each other. This thread is just for fun and expression, be it craft or drawing or photography, from a snap of your colouring-in to your take on a Degas painting, a wild exploration of your soul or just a stick figure you drew on the bus, you can share it here. Your work as well as your tips, tricks, tutorials, tasks, fun little DIY's, and anything that fuels your creative side are all welcome! Bookmark this thread (click the little star at the top right) to find it easily.
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.
Bouncing forward - can we do this?
There is this expectation that after treatment, we will bounce back and be our old selves again. Of course, anyone who has been affected by cancer or knows someone who has been affected, realises it's not that easy. There is a lot of emphasis on learning to accept the "new me". Tiffiny Hall, personal trainer, ex-Biggest Loser trainer, has come up with this concept of bouncing forward. She has related it to pregnancy and accepting that her body after childbirth will never be the same. So instead of pressuring herself to "bounce back" and have the same body she did before pregnancy, she advocates bouncing forward and accepting her new body and becoming the best "new me" that she can. Obviously, she was super fit before pregnancy and will always look 100 times better than the average person. However, I was wondering if it was an idea we could adopt or adapt to cancer survivors? Can we bounce forward and move into the space of acceptance of our new way of living? Can we find a similar phrase to "bounce forward" that has more meaning to survivors? Let's get creative :)
Convoy!
Was just checking some posts. I was chuckling and admiring some of your network names - they are funny, cute, warrior, mysterious, powerful. And I imagined a movie like the old 'Convoy' movie. All of us network members are driving trucks or riding shot gun and talking on the two way radios using our network names - and we beat the bad guys after many hilarious and scary episodes!
A time capsule for my nauseated friends
I just had a shower. It’s been 18 months since my last chemo cycle date. And I had this shocking thought as I stared at the bathroom floor tiles: I can hardly remember the feeling of being constantly nauseated. The shower was my safe haven from sickness. I used to sit on the shower floor, crumpled up, too weak to stand to wash myself, sick as hell. Vomiting was just a way of life. I wholeheartedly believed it would NEVER END. And now I find it’s a memory, it’s so in the past. Never thought I’d live to see the day. So my message to you, the ones in the absolute midst of chemo nausea hell right now feeling like it will never stop, is this: One day you will have no idea when the last time you threw up was. You’ll be so far past nausea, you won’t even notice it’s gone. Hang on for that time. x
Lego! Feel like a kid again
Well, I’m 5 months in to my BC journey & am going to be off for at least another 5-6 more months (2 surgeries & 2 x rounds of AC chemo down, 14 rounds of chemo left, then radiation, then hormone therapy). I kept stocking up my spotlight online cart, but then I thought with my track record of not completing much craft, I turned my idea to Lego. I bought the kit of ‘The Office’ & I think this is something I’ll actually finish! The kids are sad because I told them they could only play with it if they were in character 😂 I’ve let them build the characters & help pass me pieces, but the structure is all mine. I’ve done Michael & Pam’s work areas. I’m trying to pace myself though. We’ve got to treat ourselves right, this is a crap thing to live through. Any other Lego kits anyone has completed or can recommend?
Diagnosed on 1 May 2017
I am 58 and have a lifetime habit of healthy living. Therefore,when I was first diagnosed with breast cancer in 2014, like everyone else I'm sure, I couldn't believe it. It never occurred to me I would get cancer. After I competed treatment I did everything I could think of to ensure I would be healthy and cancer free. Early this year I started to experience inexplicable back pain. I also didn't feel myself - hard to explain. After many visits to the doctor trying to figure out what was wrong, I ended up in Emergency at 4am with unbearable pain. I was diagnosed later that morning with metastatic breast cancer - Monday 1 May. Within a week I was receiving chemo and had my first radiotherapy treatment. I am blessed to have a highly skilled, caring and compassionate medical team that I have complete faith in. The resources on this site have been informative & helped me a lot, especially during the first few terrible weeks after I was diagnosed - I'm sure I took advantage of every scan and test available at North Coast Radiology during those weeks. The scans show I have extensive metastasis in my spine, hips and a few areas on my scull; and spots in my liver. The liver is already showing a lot of improvement. Fortunately my brain and other organs are clear. The scans of my spine and hips are VERY scary and the associated pain is no fun. Mindfulness meditation, eating healthily and exercise certainly help. I'd love any advice or suggestions you have in helping to live with bone pain. I read messages of hope and inspiration on this site during that first scary week. I can't find words to express how much those stories helped - I latched onto the hope and advice to live every day well and to set goals. Kitty's message that, "in a strange way, those of us with advanced disease are lucky – we know that the important thing is to enjoy today and to live as well as we can" is forefront in my mind. So ... thanks to Kitty, one week to the day after I was diagnosed I ordered my dream campervan (over the phone on my way to Lismore for more scanning). Since I was a child I have always wanted to own a two tone Kombi campervan (my god parents, who I adored, had one) My partner and I are had saved and planned to buy a modern version in a couple of years but we brought our plans forward. We do have a basic 20 years old campervan we love but is doesn't have aircon. Not so comfortable driving in summer since we moved north! Thank you all for being here. I look forward to 'meeting' at least some of you.
