I had no idea this is a thing, but it is! Before I was diagnosed with Stage IV Metastatic Breast Cancer, I honestly looked at breast cancer as one illness. Now, I understand that it is so much more complicated than that and the more I learn, the more I am amazed at how much I didn’t know. Yes, my mother is a 16 year survivor of early stage breast cancer, but we definitely supported her through that experience and didn’t look back all that much.
My first introduction to the division between metastatic patients and those with early stage breast cancer was when I was asked by a social worker not to come to the regular breast cancer support group. I hadn’t actually tried it yet, but I had inquired about it when we thought I was Stage II initially and I followed up with her once I knew I was metastatic. She did direct me to a metastatic group, but that was so off putting that I never went to either group.
Her explanation as to why I shouldn’t attend the regular support group was that I might scare the other participants. Yes, I suppose being reminded of your own mortality might be scary. However, the longer I’ve lived with metastatic breast cancer, the more I think I should’ve shown up to that support group so that those other ladies could see what they might face. You see, I’ve become very well aware that early stage breast cancer patients are often told they are “cured,” and not told that each of them has a 30% chance of becoming metastatic at some point. While some may feel that being told this is scary, I do feel a responsibility to ensure that others are not living under an incorrect misapprehension that their breast cancer “journey” is completed when it might not be.
I recently attended a planning meeting for a local organization that puts on an event each year for breast cancer survivors. I consented to be a model for the event in 2019 because when I attended in 2018, I was astonished at how little there was available for Stage IV patients. I spoke up and asked why. My medical oncologist is very involved with the planning and she immediately asked me to fill that gap.
So, I agreed. I’m a model and I’m working to get stage IV organizations to participate, but going to that planning meeting was HARD. The women went around the room, celebrating how long each has been a survivor. There was a table FULL of pink paraphernalia to purchase with all proceeds going towards the event.
I honestly felt sick to my stomach. I will never be a survivor and so I have no idea how hard it is to be one. I do understand that sometimes the best way to cope with something scary is to compartmentalize it and move on with your life. I have to do that every day.
Each of the women in that room has a 30% chance of becoming metastatic. When it came time for me to introduce myself, the room was very quiet and then the next person quickly jumped in. I wasn’t looking for applause or a pat on the back, but I could tell that my impending mortality was not welcome.
When it came time to draft my bio for the fashion show, the person helping me with the formatting told me that I needed to conform to the script, which included an announcement at the end as to how long I’ve been a “survivor.” When I objected and shared that I will never be a survivor, she had to get board approval to allow me to change the script from “survivor” to “thriver.” Board approval to change the script?! Now they approved it, but it is only more clear to me that this group caters to early stagers and those of us at Stage IV are an anomaly. I’m not afraid to be the token anomaly, but it surprises me how little they know.
I attended another fashion show where I was permitted to speak about being a thriver rather than a survivor. One of the organizers of the event posted pictures of the models afterwards, labeling all of us survivors. When I sent her a private message pointing out that I will never be a survivor and simply asking her to change the caption to survivors AND thrivers or just a thriver, she didn’t respond. When I then posted a comment on the post pointing out that the caption didn’t actually describe me, she blocked me.
SHE BLOCKED ME FOR POINTING OUT THAT THE LABEL SHE GAVE ME WAS WRONG.
I do object to being labeled a survivor, since I will never be done with treatment and my cancer will never be behind me, and in response, she talked to friends of mine about me being negative and then blocked me on all social media platforms.
So, why is there such a divide? Why can’t we all fight for the same thing? Why don’t early stagers understand that finding a cure for those of us who are dying will ensure that they will not also die? Why can we not join forces?
I wish I had the answers to these questions. All I can say for myself is that being the elephant in the room, being the outsider, being told I am negative or scary for telling my own story is simply heartbreaking. I am not looking for a medal or a pat on the back. I am not looking for recognition, all I want is to be included. To be recognized and to be given a chance to educate.
To those people who think I’m being negative for speaking the truth, sure go ahead and block me. Keeping your head in the sand will only hurt you. I’ll continue to advocate for research, research and more research. When the results of that research helps those who didn’t listen to me, I won’t even ask for a thank you; at the same time, it might be nice.