Mixing it up

When I was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in 2017, I slowly turned to support groups and social media in general to connect with other patients after I was told not to come to an in person local support group because I would scare the participants (you can read more about that experience here). At the beginning, I joined a bunch of groups focused on breast cancer generally and gradually migrated to those groups that were specific to those of us with MBC for a variety of reasons. Recently, I was in some virtual rooms with those who had an early stage diagnosis and was struck by an epiphany or two.

In the beginning of my experience with MBC, I spoke up a lot when I was around those with early stage disease and those of us with MBC weren’t included or acknowledged. I know I was on the lookout for this behavior and probably noticed it more than others because I was so triggered. It took a lot of energy and my pushing for inclusion wasn’t always well received; to be fair, I wasn’t always good about packaging my angst. Over time, I discovered that I didn’t always have the energy to push for inclusion and took a step back, finding those places where I wasn’t the pink elephant in the room and sticking with those who get it.

But back to my recent experiences — while there was some of that angst still lingering and I did speak up a few times to address the needs of the MBC Community where there were differences, there was also a really interesting sense that I had something significant to offer.

I do think part of how well these encounters went was that I’ve learned a little about packaging my message(s) and toning down some of that “in your face” advocacy when it’s not necessary. Oh it’s still there, percolating beneath my skin, but maybe I’ve learned a little perspective in the last six (6) years about how to adjust to the audience in front of me and now I can speak with the authority of experience. What I saw in these recent encounters was that the things that are “normal” for me, the discussions that happen around me all the time, the work I’ve done to adjust my life, attending conferences and becoming more educated on trials and research and overall information, all of this was useful information that the people I encountered weren’t receiving.

In the discussions I participated in, we covered bisphosphonates and the relatively rate side effect of medication/bisphosphonate induced osteonecrosis of the jaw (BIONJ or MIONJ), side effects of medication, the new HER2 low designation, estate planning, risk reduction and evaluating risk as well as the best scans for monitoring, communicating with healthcare providers, seeking second opinions, managing communication with healthy people who don’t “get it,” recent studies on fertility, hereditary cancer, among other burning questions/issues. See a pattern here? All of these topics are things that I encounter nearly every day.

For the people in these discussions who aren’t living with MBC, many of these topics are simply not discussed or they aren’t around people who are interested or probably other challenges that I’m not thinking about. It was a bit of a surprise and also a bit of a wake up call to me that there are strengths in the MBC Community that could be helpful elsewhere, that we can package this information in a way that doesn’t scare those with early stage cancer or a risk of cancer and give them some necessary perspective.

And so, while I won’t be forsaking the safe spaces within the MBC Community, I’m also cautiously optimistic that perhaps the information and messages I can bring to the table because of my experiences might be more palatable to others than I’ve thought/experienced in the past. And I’m dipping my toe in these spaces — stay tuned!!