NO ONE should ever ask a metastatic patient if they are “dying” as they are in the process of pursuing treatments, or if they project an “attitude of dying” to their family as they get those treatments.
NO ONE has that right.
The context of the conversation was in light of the idea that mindset makes a difference in how we deal with this disease. That to have a “dying mindset” was to have a “victim mentality” and that is what kills us. Not cancer … but the victim mentality that “steals our happiness and joy.”
I had hoped we were past this bullshit.
This “champion” group apparently has no distinction between early stage patients and metastatic patients. No “discrimination” of any kind. They’ll soon find out that this isn’t really a good mix because we Stage IV gals tend to scare the shit out of the early stagers.
We NEED the early stage patients to take up our cry. You know why? Because we have the unfortunate habit of DYING. Our voices get silenced and we need those who do not have metastatic disease to carry the banner. We need to be heard and we need to be heard NOW! We need early stagers to face the fear headon and learn what they can about what it means to be metastatic.
Admitting the seriousness of metastatic breast cancer is NOT adopting a “victim mentality.” Admitting that one is dying of metastatic disease is not projecting a “victim mentality” to family. To suggest such a thing is a slap in the face to every mets patient who goes day after day after day; week after week after week; month after month after month; treatment after treatment after treatment -- doing everything possible to stay alive for the people at the very core of our hearts. To put it bluntly, yes, we are dying as we undergo these treatments and to suggest that a certain mindset will change that outcome is to truly illustrate the absolute ignorance of the reality of Stage IV metastatic breast cancer.
This entire debacle started when an early stage patient indicated that taking a hormone inhibitor wasn’t worth the side effects because now that the early stage patient had no breast tissue (double mastectomy) that she was at very low risk of recurrence.
Yes, early stage patients are still being taught the lie that early detection means a cure. It doesn’t. There are simply too many women who had early stage disease who become metastatic and DIE. Until research is able to determine which tumors will become metastatic or not, then every early diagnosed patient would be better to assume they would become metastatic than not.
I serve as a volunteer cancer mentor. Last week, I had a phone conversation with my newest patient. She had Stage 1 disease six years ago with a tiny 6mm tumor. That’s less than a quarter inch. That’s about the size of a square on standard graph paper. That’s about the size of a pencil eraser. She, too, had a double mastectomy and now, to put it bluntly, the cancer is fucking everywhere. So much for early detection being a cure for her.
Remember Holley Kitchen’s video? She admitted that as an early stage breast cancer patient that she believed that “no breasts meant no more breast cancer.”
I have breast cancer all throughout my body. It’s in every single vertebrae, in both sides of my hips, in one hip socket, in several ribs, in my sternum and in my liver. I still have both my breasts and they are both cancer free. Neither the presence nor absence of breasts have any impact on whether or not a patient experiences distant metastasis. It's a matter of whether or not the cancer is already in the blood stream or lymph system.
The thing is, most Stage IV patients have been early stage patients before. Most of us know what it’s like to walk in those shoes. Only 4 – 6% of Stage IV diagnoses are made at the beginning of treatment.
However, early stage patients, as shown in this conversation, don’t know what it’s like to be Stage IV. We do have champions who take up the cause (i.e. Nancy from Nancy’s Point) but overall, the early stage folks are hesitant to become too involved in the metastatic world because it’s a scary place. It’s not a fun place to be.
Even those of us who have been exposed to the deadly impact of metastatic breast cancer are hard pressed to know what the patient actually is experiencing. I thought I knew a lot about breast cancer due to my mother dying of the disease, but I found out that I didn’t really know anything until I got it myself.
I can’t play by the rules of politeness and niceness when my life is on the line. While I intellectually know it’s too late for me, I emotionally hope that something miraculous will happen in the world of research while I’m still alive. If not, then I can’t play by the rules when my daughter’s life is on the line. It’s not too late for her. My time is too short to stop standing up to the wall of pink. I will keep knocking that pink wall, brick by brick, until it starts to crumble. I will not be silenced simply because I make some people (early stagers) uncomfortable.
So am I dying every time I take a treatment? Am I dying every night when I swallow the two pills that are hoped to keep the cancer from spreading further than it already has? Am I dying when I go to the lab every month to track my blood counts and tumor markers? Am I dying when I go to my oncologist’s office every month for a clinical checkup? Am I dying when I go to the radiation clinic every day for a month to zap a tumor in my hip socket, hoping to kill it off before it fractures? Am I dying when I go to the radiology department for scans every three months to monitor what’s happening inside my body?
Yes, I am dying.
In spite of the words of the administrator who wants to claim that “some of us are dying. Not all of us. Some of us are living.” those of us with metastatic disease are acutely aware of our impending deaths.
I live my days with purpose and I live my days with joy. Every single one of those steps I outlined above are because I value my life and because I want to live. I am nowhere near the point of stopping treatment. I want to live as long as possible. I want to see my children graduate from high school. I want to see my children go to college and graduate from college. I want to see my children get married, should they choose to do so. I want to see my husband retire. I want to travel more with my husband. I want to see my grandchildren, should my children have them. I want to live to an older age.
To insinuate that because I recognize that many of these goals are not likely to happen and to insinuate that such an admission is a projection of an attitude of dying to those I love, is an absolute picture of epic cluelessness.
It’s time for the clueless to sit down and shut up when it comes to telling patients with a terminal disease how they should be living their lives. If they wish to speak up for the metastatic community, then they need to listen to the metastatic community. Hear us roar.