I’m Not Cancer but Cancer is a Part of Me
I have been living with cancer now for nearly 10 years. It would be stupid of me to say that cancer has not changed me over the years. My illness is terminal but treatable and I still have a very goo...
Forum Discussion
Sorry - not sure what happened with the above post - it deleted my link.
I shared this on dr elaine george linked in:
AND THEN THIS MORNING ON another site but in the US, I shared this after a vigorous discussion on how research $$$ are divided up between MBC and early breast cancer.....but best of all a post that took me to the ABC (advanced breast cancer) site - it is amazing and you can actually watch highlights from the 3rd international conference in Jan this year!
Hi ladies - thanks for sharing the data, comments and opinions - it is SO interesting to review, and thanks so much for the link to the ABC - it is well worth looking at the video from the conference this year in Jan - one mth before being diagnosed with MBC (only one wk after stage 2 - so initial treatment started - which may be a "good" thing in terms of what treatments I'm eligible for.....
I do agree with some of the comments re research being ploughed into immunology etc makes it difficult to ascertain exactly what % is going into MBC....BUT on the BACK OF 13 OCTOBER HERE IN AUST - I could not help but feel incredibly disillusioned that we have been pinked-out as has the media - with NO INTEREST to do a story on MBC despite my willingness to be the 'talent' they always seek for those kind of stories.
Having been living with this diagnosis just under one year, I'm relatively new to the MBC "landscape" but am frustrated with the term "survivor" versus metavivor or thriving with cancer..... OK each of us may differ with our preference for semantics but the basic point of education that is needed here is that research in MBC is NOT FOR CURE but to prolong the mean time before the progression of disease - this is the end pt for all studies in MBC now.
We are moving into another generation of research post the AIs and now with the CDK's and ones coming thru the pipeline - this is where resources are needed and ADVOCACY.
Again thanks for sharing - I love this site!
Best wishes, Elaine
I shared this on dr elaine george linked in:
So...one week ago, I was told to be bold and brave... when I received my doctorate!
Oh how I wish we could (sometimes) be more proactive like the US without the Trump factor.
However despite the Hillary and Donald duo and their hogging of media attention, some brave women in the US have gathered in BLACK - yes black, to shun the sickening candy pink we see all throughout October and are doing a march in Washington DC to raise further attention about MBC Awareness day - yes, you may say, "What! - another awareness day!" - but this is MBC - and no-one gets out of this alive...
OMG - the no. of times I have heard (in 8 months) variations of:
Oh well, you're strong - you'll fight it/beat it...
You'll conquer it...
You're so positive - you will survive it.
Oh, by the way, when is your treatment over?
So, are you in remission?
Why are you not having chemo? I love my stock response - because I'm too far gone - people at this point generally retreat fast or look just a little more puzzled or confused.
Having cancer is like being pregnant - you are absolutely flooded with information - some better than others and much of it unsolicited. The fundamental difference however is that one is regarding the arrival of a new bundle of joy versus the other having an ending that is not quite so joyous.
Much of this you have to navigate and sift through yourself - more on this later as I embark on an exciting blog to come...
But back to MBC - how exciting that Malcolm Turnbull actually did give it some credence in Parliament this afternoon - but we still have such a long way to go.
A few brave ladies gathered for a one day seminar today in Sydney to hear the launch of BCNA new "hope and hurdles" package. Much of their activities have previously focused on early breast cancer and as a MBC nurse judiciously explained, 10 years ago a MBC diagnosis meant one foot in the grave - now not necessarily so - yet we need more research, more clinical trials, more media attention and far more public awareness and social support - especially for young mums like me with young children!
Hi ladies - thanks for sharing the data, comments and opinions - it is SO interesting to review, and thanks so much for the link to the ABC - it is well worth looking at the video from the conference this year in Jan - one mth before being diagnosed with MBC (only one wk after stage 2 - so initial treatment started - which may be a "good" thing in terms of what treatments I'm eligible for.....
I do agree with some of the comments re research being ploughed into immunology etc makes it difficult to ascertain exactly what % is going into MBC....BUT on the BACK OF 13 OCTOBER HERE IN AUST - I could not help but feel incredibly disillusioned that we have been pinked-out as has the media - with NO INTEREST to do a story on MBC despite my willingness to be the 'talent' they always seek for those kind of stories.
Having been living with this diagnosis just under one year, I'm relatively new to the MBC "landscape" but am frustrated with the term "survivor" versus metavivor or thriving with cancer..... OK each of us may differ with our preference for semantics but the basic point of education that is needed here is that research in MBC is NOT FOR CURE but to prolong the mean time before the progression of disease - this is the end pt for all studies in MBC now.
We are moving into another generation of research post the AIs and now with the CDK's and ones coming thru the pipeline - this is where resources are needed and ADVOCACY.
Again thanks for sharing - I love this site!
Best wishes, Elaine