I was having one of my morning talk sessions with my fiancé this past weekend. I was questioning why even some friends seem to look away from cancerland. I mentioned how — just as one small example — when I share a meaningful video that educates about breast cancer on my personal facebook page, hardly any of my friends and family share it or even acknowledge it with a ‘like.’ I assume they don’t even watch it. I can’t deny that it hurts a little — not in a “you didn’t ‘like’ my facebook post” kind of way. It feels more like they are saying, “if you get diagnosed with stage 4, no matter what I do, you’ll die anyway.” It’s not like I am lecturing people everyday. My guy suggested that — as he well knows — maybe it is simply too painful for some people to expose themselves to cancer messages, when they already feel so powerless about it. I can understand that.
Everyone wants me well, except that by looking the other way, the problem will not go away. There’s still a chance I could become metastatic. There is also a chance that the person ignoring this educational information will be diagnosed with breast cancer.
I want to make it clear that I am not judging or blaming anyone for not wanting to be involved with cancer – trust me, I get it. But I feel a responsibility to share what I know as a way to help ALL of US.
I’ve been giving a lot of thought about the way we separate ourselves from situations we want to avoid or don’t want to picture ourselves going through. I am aware this doesn’t apply to everyone. But I’m wondering if there’s also an issue with the way we communicate important facts. That perhaps the way we talk about cancer is contributing to the ‘separation’ between non-cancer society and cancerland. Although I know it is not the intention of the patient to overwhelm or mislead, I wonder if the language we use is part of the problem.
Let me explain.
Holley Kitchen, one of the most effective advocates for breast cancer I‘ve ever read, passed away last week. I couldn’t help noticing the consistency with which people described her contribution — how she did so much for the breast cancer metastatic community. But the truth is her advocacy did a lot for ALL of US — those who have been diagnosed with early-stage, those who haven’t been diagnosed with breast cancer yet, as well as their loved ones and even those who put up with us who are living with cancer.
One reason why I have so much fear today, even after ‘catching my cancer early,’ is because I know if I get hit with a stage 4 diagnosis, my options will be very limited. This is why most of us are nervous and have a hard time with survivorship. People don’t want to hear or talk about this harsh reality, so it makes it difficult for us to interact with each other. Because of these uncertainties and fears, my state of mind isn’t very appealing to those who surround me. I become a blister and we know people don’t like having an exposed blister. This creates separation and isolation. It makes it hard for others to tolerate me because my world is very scary. It’s simply scary that metastatic breast cancer has very limited resources.
We all fear dying from our cancer. I believe that if stage 4 had more treatment options and people could live longer lives with it, I don’t think I would be as anxious today. Survivorship would be easier because I would know I will have options — the way some earlier-stage people do. And in return, people would tolerate me better. Hey, I might not even talk about cancer as much! Imagine that, friends and family.
I am not begging for help here. Most patients don’t like to be a burden to others. I usually just observe and wait for a response from others. But when I don’t get the reaction I want – what I measure as being cared for – I get disappointed. But even then I don’t express my disappointments. I stay quiet.
So, although I might be setting myself up for more trouble, I am going to start having real conversations with people I know. I am going to emphasize the “we/us” aspect of the situation, rather than “me” — because the fact is, I am not just advocating for myself and other patients, I am also doing this for the rest of the population — even if they don’t see it.
I am aware that the options I had when I was first facing cancer were not only thanks to the advancements in research, but also thanks to those who advocated for ALL of US years ago. I have wondered what if I had started to advocate a lot sooner. What if I haven’t waited until my diagnosis? Would that have made a difference with people’s attitudes (including my own)? Maybe I would have avoided some unfortunate interactions I had during my cancer, like having someone tell me my cancer happened to me for a reason.
I often ask myself, what is it going to take for people to listen? For me, it took the death of family members to start getting involved. I understand that people don’t want to deal with cancer until they are forced to. I am not asking people to live in cancerland with me, but if you see an opportunity to learn and share information about something that might contribute to progress, please don’t ignore it.
I shared about a few organizations that contribute to MBC research here. Please learn about them and mention to others. Metavivor is a great start. Please understand that metastatic breast cancer research will impact ALL of US. And every small contribution counts.
I am not asking you to follow me around in cancerland. All I ask is that you don’t look the other way.