Building a Mets Community Worldwide

This week, the great folks from Living Beyond Breast Cancer are running a campaign called #stage4lifer and they asked me to write a bit about taking action to combat metastatic breast cancer. I’m a proud graduate of LBBC’s Hear My Voice program and I urge anyone who wants to be an advocate for our community to apply to their 2017 program as soon as it opens! So I’m delighted to contribute to their campaign with this blog post–and I’d love to see all of you getting on social media to help share things with the #stage4lifer hashtag!

I’ve recently taken some time off from MET UP to deal with both the good (#EpicCaldwellVacay) and the bad (treatment). It’s not something I wanted to do, because for me, cancer activism is one of the few things that has made this experience, this life, make any kind of sense. I watch my friends dying, I watch my family suffering, and I just can’t sit idly by and NOT try to do something to change the landscape of metastatic cancer. But sometimes life and cancer get in the way of that work, and it’s frustrating for me to step away from it.

Which is why I was so excited to meet with the members of METUP UK when I was in London in August. That’s right, METUP has gone international! We met up (pun intended) at the lobby bar of my hotel and talked for hours like old friends–which I suppose we are, since we’ve been chatting on Twitter for a long time. 

The thing about metastatic cancer is that even though we live thousands of miles apart, our experiences of living with this disease are so similar. We’re struggling through treatments that make us bald or in pain or sick; we’re thinking about how to plan for our deaths that will come to soon; and we’re gutted every time one of our friends dies in this godawful plague we’re living through. No matter where I go, I see that metsters–that PEOPLE–have the same hearts inside. And we all desperately want to live.

Of course, there are some differences in other parts of the world. In Africa, the picture is much more dire. Patients in Nigeria, for example, often have to wait a year to get into treatment because of lack of cancer resources, and by then, many have developed metastatic disease. The primary treatment for them is mastectomy and radiation, which of course, isn’t effective for the systemic disease that is metastatic cancer. In addition, the cost of health care is too high for many people to afford, so they take out loans to pay for their radiation, then sleep on the side of the road by the hospital (because there’s only a couple of hospitals that do radiation in the entire country) because they don’t have any money for a hotel. Just imagine going through non-curative radiation treatment while sleeping by the side of the road.

I think it’s easy to think of people far away as The Other, as Not Like Us. But they ARE just like us. And they’re suffering. This is why building a metastatic community worldwide is so important–so we can lift each other up, and fight for each others’ lives. Once you meet another person with metastatic cancer, it changes you. Advocacy for metastatic cancer is no longer about you–it no longer feels selfish. It feels completely selfless and vitally important. We’re all going to have to be in this together, or we’ll die alone.