I’m Not Cancer but Cancer is a Part of Me

ElaineG

Oh and Karen and other interested ladies - before I forget and October is over, I posted this last wk - so please comment if you like - as this g

ElaineG

Sorry - not sure what happened with the above post - it deleted my link.

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!

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

Share

Hi Elaine -count me in for Friday Oct 13 2017 in Martin Place. I live in Sydney and at the moment work in the city - am determined that it will still be the case in 50 weeks time ! Thanks for your tip about the book also in response to my discussion - I firmly believe that we all need to be informed and aware. After all, it is in our best interests !   

ElaineG

Oh and Karen and other interested ladies - before I forget and October is over, I posted this last wk - so please comment if you like - as this goes out to the "real" world!
https://www.linkedin.com/pulse/alive-well-mbc-dr-elaine-george?articleId=8926635239764652041&deepLinkCommentId=6197600388707799040&anchorTime=1477623078523&trk=pulse_spock-people#comments-8926635239764652041

regards, Elaine

ElaineG

Brilliant share - well we have 11.5 months to plan it!!

ElaineG

Hi Sheryl - sorry, still navigating my way around this site....

Is it just me, or others that get frustrated when I get absorbed reading another post - and realise it is the "other group" - the one which we DON'T belong to.....

The more the merrier for Martin Place - it is SO needed!

brightspace

Hi ElaineG
lots of research since diagnosed in july ..seems its the long haul for me...yes lots happening in US re funding research and some states have super mets groups upping the agenda. Agree we need to be more pro active for funding researchfor Mets in aust. Also pink needs to be reworkedfor me ! What about red and pink  

sunandsaltwater

Hi Elaine
This will be my new aim: to be there on October 13th, 2017.
I've had cancer for more than 5 years now, and am still feeling well and being active.

I wish I could offer to help organise the day next year, but I'm currently feeling overwhelmed with all I want to get done.
Maybe in the new year, I'll feel I have some spare time so please keep me in the loop.
I'd LOVE to see some colour other than pink!! I've always disliked that colour and won't wear it.

I feel busy with ocean swimming, regular gym visits, writing, reading, time with family and friends, getting all my photos organised, movies, downtime .... all while feeling tired from my medications (Fulvestrant injections plus palbociclib at great expense from overseas) Also medical appointments of course.
It's great to find women here in the same situation as me - I'm at Stage 4, and ignoring it whenever possible. There are happier things to talk about with friends and family, and the political situation both here and overseas is depressing enough!

But I'd like to talk online with people with MBC as we are in the same boat.
So thanks for all your advocacy, Keep It Up!
And keep feeling as well as possible
Caro (SunAndSaltWater)

ElaineG

Hi Ladies - FINALLY..... have got it off the ground with BCNA and McGrath approval/support etc!!!
There have been some hurdles!!
I had 2 x total hip replacements in May (then lots of rehab) and pending bilateral masectomy in early Sept - 5wks before this inaugural event planned for MBC day - YAY!!!  Hopefully national next year and am hoping it goes viral.
So will post more shortly this week.

Romla

I'd like to add - it's a part of life - I'd like cancer to be talked about openly and normalise it rather than feel I'm part of a secret society.I don't mean I want to talk constantly about it nor do I want to feel a leper to be sidestepped or to be spoken about in hushed terms - i am neither ashamed or embarrassed by my diagnosis and am just getting on with enjoying my life . Cancer is part of me not all of me - it's a part of life not all of it.I think we need to be inclusive with others to remove the stigma and fear the "C" work invokes and maybe show that life goes on and that we are still part of it.Thankyou @ElaineG for what you have written.