Do We Need a Special Day for Secondary Breast Cancer Awareness? Thoughts from a turtle in a cape
Comments
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What an amazing article! I lay here in bed tonight feeling lost and alone! I have many supportive friends and family, but at times it still feels like you are battling this alone!
I have been to some bcna days organised for woman with early stage breast cancer and they were wonderful, but I still believe that we are living a seperate/different story! Could bcna run some of these workshop days for woman with advanced breast cancer only. It is a hell of a lot different when you are facing your own mortality and not ready to read the material on palative care.
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Thanks Sharon, your article is a very clear description of a place nobody living with breast cancer wants to go. I have a stage four friend and he's an inspiration in that he travels and generally gets on with life with hardly a complaint.
Pinkwashing in October is also holding back the diagnosis of males. More on that HERE.
Why not have the whole of October as a focus on secondary bc and have a day set aside for awareness? This way, the message would be stronger and funds raised spent on research for better treatment for those with advanced cancer.
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Thanks for sharing your beautiful words and photos. You nailed it. You raised issues I have thought about myself ie why call it 'early BC'? and not 'primary'?
Funding research is the key to finding a cure, let alone finding the causes that put us in this position in the first place. No one has been able to answer that question for me. What caused this? I was fit, healthy, ate fresh, slim, breast fed my kids. I'm not prepared to cop it on the chin and just accept that it's 'my bad luck' (which has been told to me!). It's early days for me and I still can't get my heard around it (sorry for venting).
Keep on posting your excellent informative posts.
Karen xx
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Vent away.. this place is great for that.. I also understand the burning desire to understand how did this happen.. I have never really asked why me.. It just never really occurred to me as when I saw how many others were sitting in the same situation I knew it was a mega question. I searched for quite a while looking for information that explained things so i could explain it when asked and all I really gained was more questions.. No family history, ate ok, exercised ok. breast fed my son, only had a few xtra kgs. I believe that in time as the cells and genes are cracked open even more perhaps they will find more out but it is the reason that finding how to prevent and the holy grail - a cure is so very hard because BC just will not play by any rules.
Some days I feel as if I had stood on the street, was standing on one leg with my tongue sticking out and right at that moment saw a black cat walk under a ladder which fell and smashed a mirror !!! and yes, that is certainly tongue in cheek. These days I have decided to leave many questions behind as I just cannot find an answer and work on other things.. As I turtle it is my duty now to share my knowledge to anyone who will listen and hopefully spark more discussion and eventually answers to the huge pile of unanswered questions that are sitting in the corner waiting for a friend.
hugs to you. Sharon1 -
Hi Traveltext, I undertake many presentations and always make sure that the men in the room are left with no illusions that they too need to be paying attention to their own breasts. The room is always surprised that I was under 40 at first diagnosis, then surprised that I am living with secondaries (and look so good LOL) and then when I speak about men their jaws always drop!!
I know a few gentlemen who are indeed 'blue men' we always add one to our mini fields and always get asked what is that and it leads nicely into more people knowing. Living with a secondary diagnosis is certainly challenging enough in a sea of pink and rah rah and uplifting 'i beat cancer' stories (and I understand why as a vast majority are able to move beyond a diagnosis and treatment and it is how they deal with it and yay for them - in its pure form it is an amazing thing to participate in) but I can only imagine being a gentleman dealing with not only breast cancer but also secondaries in a month of pink.
I actually like the whole month on secondary and a day for everyone else but I think the pure numbers would prevent that.. (i actually was thinking about that exact thing just yesterday!!!)
sending hugs your way xoxox0 -
Hi Sparker,
I also have times when I am surrounded my many and still feel totally and utterly alone. I am not sure if it is something you would like to communicate with those close to you but I actually wrote a poem about it and then was privileged enough to be able to read it out at the Field of Women last year. I found it helped those around me to understand how I was feeling just a little better. If you think it may help, please feel free to share it
http://wp.me/p3O6YT-4K
Also, any ideas you have about how to assist those living those secondary breast cancer via the information and forums presented by BCNA I have no doubt they would be very happy to hear about.. If you like, message me with all your thoughts, or contact them directly via email.
cheers, Sharon (pink66)
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Make "Awareness" actual education <-- This on repeat until it's a reality please.
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Hi Pink 66 - your post was brilliant - can't believe it's now another one year on...
these pts in particular are great because there's now suggestion that 20-30% of all breast cancer diagnoses will progress to MBC, but the second pt is VERY interesting re 9000 people - where did you get this fig from? and I cannot understand in our current health system why this accurate data is not available???? - that is 9000+ women who could be potentially better managed to maximise their lifespan, quality of life and potential employability - therefore a tax payer too.....- approximately 20% of all breast cancer diagnosis will progress to secondaries
- there are approximately 9,000 people living with
secondary breast cancer in Australia at the moment (estimates as
statistics are NOT kept)
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Sharon thank you for sharing. Wishing you stabikity and many more good times.
Take care sending you a virtual hug from0
