We’ve all heard the saying “it takes a village” when applied to child-rearing. I would submit that this same idea applies to life and, particularly, dealing with a terminal illness. Now, as an introvert, I subscribe to the onion theory of relationships, i.e., the closer anyone gets in a relationship to me, the smaller the circle. When I was diagnosed, I had that onion pretty well established, but I realized very quickly that I needed to create a new category. Reaching out for support to strangers creates a great deal of anxiety internally for me, so that was not easy.
One thing I’ve learned over and over in the two years I’ve been living with Stage IV metastatic breast cancer is that having a group of supportive metastatic men and women to turn to is not just a helpful thing, it’s a necessity. When I encountered issues with women diagnosed with early stage breast cancer, it was the ladies in my metastatic group that helped me sort through how I was feeling. When I run into barriers to seeking medical care or when I’m researching something new or novel, I turn to those metastatic patient advocates that I know and trust.
Finding a supportive group of people hasn’t always been easy. I’m online a lot now and I’ve found that online support groups fit the best into my schedule. Having two little boys means that traditional support groups that meet in the evening just doesn’t work for me right now. Plus going to a meeting to talk about such personal stuff gives me the willies. I can write posts online or lurk in a group until I figure out the lay of the land; that fits my personality better.
Yet, there are so many online groups and not all of them are productive for everyone. For instance, I’m a person of faith, but since that’s always been more of a private part of my life, it is a turn off for me when there are people who are posting lengthy religious comments. Personal quirk of mine. Another example is that I integrate both Western and Eastern medicine in my care. I’m pretty open to try a lot of things, but I pull what makes sense for me from both camps. It seems that most people are in one camp or the other and feel that their way is right. I get that, but I still have to do what makes sense for me. There is no one size fits all with cancer treatment or the cancer experience, yet some people want to make it so. It’s just not.
With all of my quirks and what makes me me, it hasn’t always been easy to find my place and sometimes that place changes, but I think I’ve started to find my tribe, to find the group of men and women who are supportive and get me. What I really do know for sure is that everyone needs that village, everyone needs that tribe. Doing life with a terminal illness is not for the faint of heart and we all need support.