Mandamoo's legacy
 

This is a bit round about but it is a blog post by one of Amanda's friends which explains a few things and then there is a link to an article written by the CEO of National Breast Cancer Foundation(NBCF), one of our main research places. The first link is the important one.
Amanda did make a difference. Also it was good to be surrounded by red at her funeral, instead of pink.


Blog post by Merylee Punchard:

Wanted to share this with you all.... Xxx We can make a difference!
Just got an email from National Breast Cancer Foundation. Too long to copy and paste. But it made me so happy - even tho yesterday we said goodbye to a YPS - Amanda Rynne - she is not forgotten.
Besides her family and friends she has left behind a legacy.
Amanda would speak frequently and openly about having stage 4 breast cancer. She really hated the breast cancer language. Like Fighter, Survivor, or just as simple as she lost the fight. A few weeks ago she posted on NBCF facebook page this :- Amanda Rynne
October is so hard. Even harder this year as I am, at 41, just 31 months after my 'caught early' diagnosis receiving palliative care. I read these posts and all I can do is cry - all this talk of fighting and winning and beating cancer. I've fought bloody hard - do people realize this is an unwinnable fight for anyone diagnosed with advanced disease? Do they realize this imagery and wording implies those who die weren't up to the fight? That we are losers and failures? When will we focus on this as a hideous and fatal disease it is that still kills 7 Australians everyday instead of prettying it up with a pink ribbon?

Today I get an email from NBCF trying to get in contact with Amanda. Sadly I had to break the bad news she had passed away. They then informed me of how much Amanda's post changed the way they thought and worded things. They have changed the language on their website and now planning on changing their promotional stuff too and their CEO also wrote this:
http://bit.ly/1d0agAM
Amanda is the lady the CEO writes about.
Amanda changed a major company like NBCF - We can do anything!
Editorial Comment – A Darker Shade of Pink
www.nbcf.org.au
It’s time to remember that pink has many shades, some lighter, some darker, and not all stories will have a happy ending, but they all deserve to be told.

Re: Mandamoo's legacy
 

Chris,
Thank you so much for sharing this.
I already knew that Amanda had made a huge difference in my life...
it's heartening to know that some "more influential" people were listening too.
Denise

Re: Mandamoo's legacy
 

Thank you for sharing. I read this thru tears. Amanda was a fighter and an inspiration.

Re: Mandamoo's legacy
 

Thank you for sharing this. How inspiring that she was able to effect an important change of attitude.
sarah

Re: Mandamoo's legacy
 

Thanks for sharing this.

I think I have been one of the more vocal ones about "The Stink of Pink". I think breast cancer ribbons and the color pink has been exploited for financial gain. Some have their hearts in the right place and mean well. And many just want to help and this is the only way they can find - is the pink campaigns. I applaud them, but lets direct them to a better cause like Vanguard for functional profiling clinical trials.

I, like many, would like a more serious representation for the fight against metastatic breast cancer. We have thrown out numbers and how many progress? 20 - 33%? Crap, that number doesn't make me feel warm & fuzzy about The Pink. And this is why I am always pushing clinical trials - we need to change the Standard of Care. And ladies, when I say "we" I mean you too. We need more treatments, more testing, better testing, to abolish the wait & see and let 1/5 to 1/3 of patients progress form of surveillance. Amanda started change, we can keep it going.

I'm right up there with Mandamoo with the lingo of "fighting cancer". Really? If the cancer has the survival advantage so that diet, exercise, meditation, treatments, surgery, radiation and targeted therapy cannot stop it - all one can do is wave the white flag. and die. GAME OVER.

Amanda did not fail treatment. Current cancer treatments failed her.

She was young, active, positive, determined until she could barely breathe and the pain was terrible.

She was still looking for her miracle with this comment to Nancy: We've lost Amanda, but we can take up the cause to identify the causes of MBC and prevent recurrence. We have to - because we have NEDenise, Penny, CoolBreeze, MtnGirl and many others who are still "in the search" to find their miracle.

Re: Mandamoo's legacy
 

I thought that editorial might be about Amanda. Good for her for prohibiting pink at her funeral. I have already told my kids I will find a way to come back and punish them if they dare say I "lost a long battle" with breast cancer. It's like saying someone who died after being run over by a truck "lost her battle." Please.

Another story I read about Amanda's funeral said that she requested that people wear red. Good idea too.

I wrote a blog post about "Making friends with cancer" that says, among other things, that I don't think it's helpful to use martial imagery or language in relation to cancer. I have several reasons. I blog at www.durfeewest.com if you're interested. It's not a breast cancer blog, it's just my blog that I started in 2008 when I shut down my law practice and went off to seminary. But I have breast cancer, so sometimes I write about it.

I agree with Denise. Amanda touched and changed my life. I'm glad to know she had an impact on the breast cancer rhetoric.

Re: Mandamoo's legacy
 

Thanks Christine - I posted a link in another thread of this very story from the NBCF that appeared in both the Sydney Morning Herald and The Age newspapers and on their websites on Friday October 18. At the time I wasn't sure, but felt it must have been Amanda to whom the author was referring. So thanks to Amanda, this has had a very wide readership in Australia. The NBCF is influential!

http://www.smh.com.au/comment/one-co...l?rand=1559522

http://www.theage.com.au/comment/one...017-2vpj9.html

Marie x

Re: Mandamoo's legacy
 

I am very interested in what you are saying. I'm only 4 months into my own journey, but have had 24 years of diagnosing breast cancer, primary and metastatic.

It's hard to talk about anything without metaphor - it's how our brains work and it certainly helps if you want to campaign to the public. Are there any metaphors that are more helpful for you? The Age article mentioned "walking the thin edge" and also shades of pink. (At this stage in my journey, battle is a potent image, but the winning/losing aspect sucks).

It seems to me that every Breast cancer organization needs a special working group for metastatic carcinoma that constantly upholds the interests of the women with metastatic disease to the main executive, to be considered in every campaign and ceratinly for pinktober. Are any of you involved at a high level with such an organization?

Aussie Girl

Re: Mandamoo's legacy
 

No, no involvement. But even in the two-plus years I've been "aware" of MBC I sense a shift in attitude and language. I think some prominent bloggers are helping with that.

"Big Pink" seems to actively avoid talking about MBC. In particular, Susan G. Komen has been deceptive (giving five year survival statistics to imply that with early detection breast cancer is 98% curable, for example). This video is powerful: http://www.youtube.com/watch?v=HGV6eOziEY8

The truth gets in the way of the survivorship storyline.

Re: Mandamoo's legacy
 

Ladies,

We tossed the numbers around before and there is reporting that early stage has a 98-99% survival rate from ACS, and likely SEERS. It just doesn't make sense. The board (okay mostly me likely) has discussed a relapse rate of 20-30%. I think the number is based on 5 year survival and that time frame probably gets dropped.

Based on the Spanish study we've been dissecting there was another round of recurrence that peaked after the 5 year window. Thus, my enthusiasm about better tracking of who & when, and considering Herceptin boosters.

I read the article and frankly was offended by the different shades of pink comment.

Ms. Renouf frankly didn't get Amanda's message. Mandamoo wasn't a pink ribbon story. She was an active wife and mother who suffered the misfortune of cancer. Amanda hated The Pink so much that she banned it from her funeral. She was not "a darker shade of pink". That is offensive and belittling. She was a cancer patient who progressed to Metastatic Breast Cancer which caused her death.

Re: Mandamoo's legacy
 

Thank you for sharing this with us. Miss Mandamoo so much. It's nice to see the difference she made, and that these people heard what she had to say and understood.

Re: Mandamoo's legacy
 

Oh dear, some days I get tired of the whole thing - sick of cancer and everything connected. 5 year survival rates make a mockery of the facts of those of us living and dying of ABC. Improved survival rates could easily be a function of earlier diagnosis. Who knows? I feel exceptionally grouchy today!
Pam.