'Mandamoo' R.I.P
I just got an email from the National Breast Cancer Foundation. Too long to copy and paste but it made me so happy - even tho yesterday we said goodbye to a BCNA member - Amanda Rynne (aka Mandamoo) - 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 [Facebook post] -- "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 got 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 are now planning on changing their promotional stuff too and their CEO also wrote this article in today 'Sydney Morning Herald' -- http://bit.ly/1d0agAM
Amanda is the lady that the CEO writes about.
Amanda changed a major company like NBCF - We can do anything!
Comments
-
On reading this article it all rang so true. I remember saying to my husband when someone told him I was strong and would fight this "How do you fight something you cannot see and have no control over" . I purchased for the girls in my family the pink lady support pin, because they had shown me so much support and they wear it with pride. I ordered for myself the survivors pin - but on reading the inscription on the card I cannot bring myself to wear it. Am I a survivor? Not until I get to 80years old and cancer free, at the moment I feel like a ticking time bomb, cancer has been treated., get on with your life until you have your next check up in 6 months. This pin should be in recognition that I have had breast cancer treatment., then I will feel that instant bond when I see another lady wearing it.
Viv
0 -
RIP to Mandamoo and all who this awful disease has taken way too soon
Paula0 -
So sad to read about Amanda, I enjoyed reading her blogs they were thought provoking and was saddened to read her blog about decline.
I agree with the use of words, I cannot bring myself to use journey, survivor, fighting, being strong, staying positive. Instead if anyone asks I have early breast cancer and I'm receiving treatment for this disease and getting on with life as best I can. I don't want to be all about the disease.
Cheryle
0 -
Amanda voiced her opinion that the current image of breast cancer and the language used to communicate about it excludes those with advanced disease. Not only that but it made her feel she had failed in some way because she had not been able to 'beat' cancer or 'win the fight'.
The article acknowledges that this is a valid criticism and that the current image needs an overhaul. Surely if the aim is to support those who are diagnosed with breast cancer then those with advanced disease should be the priority not shunned because we do not want to be confronted with the reality that this disease is still incurable at Stage 4.
Deanne0 -
Amanda voiced her opinion that the current image of breast cancer and the language used to communicate about it excludes those with advanced disease. Not only that but it made her feel she had failed in some way because she had not been able to 'beat' cancer or 'win the fight'.
The article acknowledges that this is a valid criticism and that the current image needs an overhaul. Surely if the aim is to support those who are diagnosed with breast cancer then those with advanced disease should be the priority not shunned because we do not want to be confronted with the reality that this disease is still incurable at Stage 4.
Deanne0 -
I agree that the word "fight" should have no place in describing a person who is ill with a disease over which they have no control. Unfortunately, it is the people who haven't had BC who are the ones who use words like that in the belief that it inspires an ill person to be positive. Sometimes, it doesn't matter what type of mindset a patient has - the disease takes over.
It is, indeed time, to change the way people talk about how we manage and control this disease and, hopefully, how we cure it.0 -
I agree that the word "fight" should have no place in describing a person who is ill with a disease over which they have no control. Unfortunately, it is the people who haven't had BC who are the ones who use words like that in the belief that it inspires an ill person to be positive. Sometimes, it doesn't matter what type of mindset a patient has - the disease takes over.
It is, indeed time, to change the way people talk about how we manage and control this disease and, hopefully, how we cure it.0 -
Thanks for posting this article. I feel at long last our plight of living with metastatic disease is being talked about honestly and openly. I too enjoyed Mandamoos posts and was moved by her courage and eloquence in articulating what it is to live with this horrible disease and that there is no cure and that we will die from it, some sooner than others. I often used to think how Amanda and other young mothers living with ABC and parenting young children coped. True heroines. I find it hard enough with a 20 and 23 year old. I'm not against pink and like the author, consider that there are many different shades. I'm also grateful that breast cancer, compared to many other forms of cancer gets a fair degree of research funding. However, much more of that needs to go to metastic cancer. Sue0
-
We started our journey together. I found you on BCNA.
You shared your children, your life. I recall when you climbed the Sydney Harbour Bridge,when you finished your treatment. I thought OMG how on earth does she have the energy for that. I was so proud and excited for you.
Then the sad news that hit me like a tonne of bricks I followed your path and your words of wisdom.( I am sure hit you like a mac truck). How can this be, how is it that you had secondaries, why you, when you have so much to live for. Its just not fair. I sit here and cry and cry and feel ashamed that so many times i wanted to hold out my hand and say something that may have made it a little easier. Maybe in some way I may have.
I met so many lovely ladies at my support group here in Sydney, now also gone from secondaries. I had to withdraw with my grieving. Many times I read your posts that gave me courage not to listen to the time bomb and to live life with a smile.
Now no more tick tick, now be at peace :-) with the angels.
Love you Mandamoo
Maria333
0
