Choices, Impacts, & Silencing Voices

Back in high school, there were mean girls. If you didn’t dress the same, wear makeup the way they did, have the same interests they did, they let you have it…. Or at least they let ME have it.

Fast-forward 30-some years and it’s still happening. This time, I’m finding it in my own metastatic breast cancer community.

I’m not offended when someone’s obituary says they “lost their battle (fight) with cancer”. Maybe it’s because I’m a veteran. Maybe it’s because I recognize that not all battles (fights) are fair. Maybe it’s because I’ve had SEVERAL days over the past 10 years that cancer has been in my life where I’ve fought through treatment-related side effects, or fought against my body’s limitations. There are days I’ve fought to keep food down. There are days I’ve fought to eat at all. There are days I’ve fought to poop (TMI? Sorry/not sorry). There are times I’ve fought with insurance companies for treatments my doctor has ordered. So, yeah, I can see how someone dies and loses the battle (fight).

I’m not offended when someone goes the “alternative route” for cancer treatments. Maybe because they’ve had enough. They’ve decided that the cure can be found in nature and big pharma is only creating customers. They’ve done their own research and believe in what they’ve chosen. I don’t agree, but that doesn’t make them wrong.

I’m not offended when someone declares themselves “cancer free” after treatment for early stage breast cancer. I sure did after my initial bout with breast cancer. I even got a tattoo that says “survivor” with a pink ribbon.

I AM offended now by the pink EVERYTHING for awareness of breast cancer. If you follow my blog, you’ll see that many of these items don’t notate a specific charity, and usually less than 1% of the price you’re paying for that item actually is sent on in the name of breast cancer awareness. Most importantly, the things you see/buy do not do anything for metastatic breast cancer (MBC) – the ONLY kind of breast cancer that kills. Metastatic means that the cancer has spread beyond the original site and now affects other body systems/organs. This is the kind of breast cancer I have had since 2011.

HOWEVER, being mean / ugly / argumentative / hateful to someone who holds a different view is just not necessary. I was taught to express my ideas without screaming at someone, to be able to defend what I believe and why without name-calling or cursing at them. I was also taught to keep an open mind, and I reserve the right to change my opinions when I learn something new, creating understanding in a different way.

We, as a metastatic community, need to come together as a group. When we start fighting or criticizing each other, we only divide our community and silence voices. I have remained mostly silent through 5 1/2 years of living with metastatic cancer. I say mostly silent because when I do express an opinion that differs from some of our loudest advocates, I’ve been attacked. Now I just don’t express any conflicting opinions. I’d like to be able to hold respectful discourse. But I was just blocked this week on Facebook by someone I considered a friend for asking a question about BitMoji and holidays.

Perhaps it’s a difference in age – many of those who are speaking all day / every day about the need for actual research for metastatic cancer are 10-20 years younger than I am. Their children are younger or cancer has prevented them from having children at all.

Perhaps it’s a difference in personality. Maybe these women were the mean girls in high school and just continue with the criticism they grew up with. I expect I’ll get some push back / blocking / ugly responses for this post.

I’m not saying you can’t be angry about a disease that is killing people. I’m not saying you can’t be angry at a foundation that raised millions of dollars while the numbers of death from metastatic breast cancer haven’t significantly changed in the past 40 years. I’m not saying you shouldn’t point to the fact that HIV/AIDS went from automatic death sentence to manageable disease in under a decade. I’m not saying you can’t be passionate about wanting better treatments or an actual CURE of metastatic cancer.

What the HIV/AIDS community (ACT-UP) had that we don’t have is unity. And until we stop hating on each other and worrying about blaming / shaming, we won’t make progress in finding an actual cure (or at least a medication combo that makes MBC a truly chronic disease like diabetes or HIV/AIDS). Our voices are strongest when they are combined.

One of the pieces of information I try to share with everyone: “No matter how you choose to deal with your cancer, it’s right for YOU!” I choose to push treatments back (with my doctor’s approval) to be able to travel and make memories with my family. You may choose to plow through without taking a break ever. You may choose not to take the poisonous chemo at all and only do alternative treatments. These are different choices; one is not better than the other, simply different. I respect your choices, and ask that you respect mine.

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