If you could tell the world one thing about MBC...what would it be?
Community members from our instagram shared the following:
"Remind them that we don't have a cure. That we are living our lives to the fullest and helps us when we need it."
"We are here, please help us so that we can grow old!"
"Show us the money. Stage4 needs more."
"We with MBC are more than our disease. We are moms, sisters, etc! We deserve better from our govts we want a chance to live."
"We need support from friends and family."
"Changes your whole world and perspective."
"Every day is different for us. Not much is predictable. And please don't respond with the statement: "It's like that for everyone...anyone can get hit by a bus." We are living in the busy freeway and dodging buses every day. Underneath the surface of us trying our best to live our lives to the fullest, to appreciate and take advantage of slices of those good days, of feeling the blessings in our lives, is the ugly fact that the light-switch can flip seemingly instantly and we are out of time."
"It's really painful."
"My husband says that wearing pink doesn't do a damn thing to save our lives #pinkwashing."
"I'm still here right now and I COUNT!"
"More research for more life."
"There is no cure 😔
"Don't ignore stage four!"
What else would you add to our list above?
Stop saying... you beat cancer before, you’ll kick its ass again!!
No dumbass, stage 4 is treatable until it isn’t then I die.
I’m tired of candy coating my reality to people who say stupid things to make themselves feel better.
Stage 4 is stage 4 no matter they type you put after it..
You don’t hear people telling any other stage 4 cancer patient similar.
I guess it’s to make themselves feel better or they didn’t know what to say.
This may not be the same thing as you survived one cancer, you can survive another. Although I am constantly hearing, "you are the strongest person I know. You are going to kick this cancer thing in the butt."
I wish I could, but it's murdering me from the inside. I don't think street smarts will help me.
Community members from our Facebook shared the following:
"There is no cure."
"You might think I look fine, but what you don’t know is that every day I am fighting for more days. My fight will end only when I have no more fight left in me."
"That you are forever in treatment! It is for now an incurable cancer."
"Even when you have no evidence of active disease it is like someone is holding a gun to your head saying “I am coming for you” because it will show up again someday and you don’t know when. So live your BEST LIFE EVERY DAY!!"
"It doesn't define the person that has the disease. The person defines how the disease affects them."
"Enjoy everyday! If you can.? I struggle, All THE time, but know what is the most important to me. Making time for what I want is so important. I work now, full time and physically, and it’s exhausting.? But if I do t have some joy, what’s the point?"
"That I live each day to the fullest and pray for more time. And that good scans are not a victory for me, they are a temporary reprieve for a life sentence."
"t takes your life away while trying to cure you! Im thankful for advances in treatment and pray for a cure and comfort every single day💗"
"We are NEVER in REMISSION or CURED!
YOU will NEVER understand what its like to have this disease. It CANNOT be compared to ANYTHING else! 😒"
Some more comments sharing from our Facebook community:
"Its not a death sentence !! But there is no cure !! Advocate for yourself !!"
"The unknown and constant worry about progression can be torture sometimes."
"Educate yourself, read, understand that this disease is so difficult to navigate. Just when you think you're taking one step forward it will knock you 2 steps back."
"That it can make you feel like you are a living ticking time bomb. People see you looking relatively healthy and don’t grasp that you are walking around with a deadly disease. It’s very scary, but you still have to live your life day to day for yourself and your loved ones"
"You don't get it by something you did and you don't reverse it by something you saw on YouTube. I appreciate the care but not the suggestions."
"It is a never-ending challenge."
"You are not healed and in the clear just because your hair is back and you are done with chemo. It is a new "normal" forever!"
"No they keep changing when they stop working😷"
"Be an advocate
for more research funding because clinical trials find treatment successes. Be part of a support group to assist and learn from other MBC patients. I’m a member of METAvivor. The women and men of this support group have given me so much confidence and knowledge about living with MBC."
"It's not breast cancer AGAIN, and in my case (2 spots on my spine), it's not bone cancer!"
"Make the best of it. What else can you do"
"Please find a cure! If not for me, a grandmother, but for the young women and the young motherless children!"
"You're in treatment FOREVER"
"Enjoying your life and not worrying"
"It's a constant stay of execution from the warden. 🤦♀️"
What would you add?