Dear Joan,
I recently read an interview in which you stated you'd been attacked on social media for being "positive" mostly by people whose cancer had metastasized, you went on to say that if people would be positive their remaining time would be more rewarding and that they would heal and recover better.
First I don't believe the reaction you often get here on Twitter is intended as an attack. I can see how it can feel that way. The intention is to have you stop and hear, really hear what people are saying. Additionally, the reactions you see are intended to explain to you, that although unwittingly, you help to spread the myth that everything is all pink and rosy here in Cancer Land. For you and for me it might be, but it is not for many many women and men. Somewhere between 130 and 140 die each day from Breast Cancer. Also it's important that you understand that until you and I die from something else, we live daily with the possibility of our cancer metastasizing. That is not negative thinking, that is reality. That is a fact. Facts are not positive nor are they negative, they are what they are. What you choose to do with facts can be positive or negative. In my mind, ignoring facts is negative.
Q: You often call yourself a “glass-half-full kind of girl.” But certainly this diagnosis must have been an incredible challenge to maintaining that attitude. Was there a point where you asked, “Why me?” A: Never. It didn’t even occur to me. I’ve been taken to task on social media for talking about how important it is to have a positive attitude. And it’s usually people who have metastatic breast cancer, and they know they’re going to die, and you know, “Positive attitude isn’t going to cure us.” But a positive attitude will certainly make the time you’re here on Earth more palatable and will certainly keep the fight in you to keep fighting to live until maybe we even find a better treatment for you. It will keep that fight stronger. There have been studies that show that patients who have a positive attitude and are optimistic have a better immune system, and they heal better, they recover better.
Your statement above is hurtful and dismissive of the message these ladies and men have attempted to get across to you. Additionally, it is a misrepresentation of these people who "know they're going to die". A positive attitude is not a cure, these people would be delusional if they were under the impression that all they have to do is to have a "positive attitude" and all would be fine. These people who you depict as negative are true Warriors who do research, advocate, travel spread their message, despite often feeling awful. They do this not just for themselves, as they are well aware their efforts may not bring results in time for themselves, they do it for you and I. They advocate and holler and write letters for all of us "survivors" 30% of whose cancer will metastasize.
These ladies and men are not negative, they are not spiteful as implied in your remarks. They have always been encouraging and supportive to those of us diagnosed with early stage cancer. I have been given advice and I always get cheers when I get positive results from a follow up. They are not envious, they want the facts out there. They want research so that you and I maybe won't be faced with what they face. They don't contribute their time on social media, conventions, writing letters, selfishly, of course they want to live however as stated above they do it for us as well. Maybe those with Mets are pissed. I'm pissed. My view of BC was much different before I came to Cancer land. I feel betrayed by the lack of information, the idea that mammograms and early detection are a cure, the idea that one goes into Cancer land and emerges happy and disease free with a wardrobe of pink.
Your statement above is hurtful and dismissive of the message these ladies and men have attempted to get across to you. Additionally, it is a misrepresentation of these people who "know they're going to die". A positive attitude is not a cure, these people would be delusional if they were under the impression that all they have to do is to have a "positive attitude" and all would be fine. These people who you depict as negative are true Warriors who do research, advocate, travel spread their message, despite often feeling awful. They do this not just for themselves, as they are well aware their efforts may not bring results in time for themselves, they do it for you and I. They advocate and holler and write letters for all of us "survivors" 30% of whose cancer will metastasize.
These ladies and men are not negative, they are not spiteful as implied in your remarks. They have always been encouraging and supportive to those of us diagnosed with early stage cancer. I have been given advice and I always get cheers when I get positive results from a follow up. They are not envious, they want the facts out there. They want research so that you and I maybe won't be faced with what they face. They don't contribute their time on social media, conventions, writing letters, selfishly, of course they want to live however as stated above they do it for us as well. Maybe those with Mets are pissed. I'm pissed. My view of BC was much different before I came to Cancer land. I feel betrayed by the lack of information, the idea that mammograms and early detection are a cure, the idea that one goes into Cancer land and emerges happy and disease free with a wardrobe of pink.
While it is wonderful to be encouraging to women who are now facing what we faced at diagnosis and going through treatment, it is not wonderful to skirt the issues, the entire truth. Granted the way you are approaching this is your way of processing your experience. Maybe it's difficult for you to face the entire truth. You are entitled to your feelings. However, putting yourself out there as a highly visible public Breast Cancer advocate a "Warrior", makes what you say fair game for correction, and contradiction. More than fair game, as what you say and do goes out to millions of people. If you are going to portray yourself as a BC advocate, then it's your responsibility to attempt to drive change. It's your responsibility to learn the facts, to humble yourself to learn from those who have been "Warriors" in this battle much longer than you. If you truly want to serve those who are Breast Cancer survivors you must spread the message that research is our only hope to drive change, to find a "cure".
Wishing you all the best,
Fellow Survivor, Cynthia Carrera
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