Fear, Part I
I've been talking to quite a few men and women who have recently received a diagnosis of breast cancer (BC) or metastatic breast cancer (MBC) lately. That isn't a complaint, far from it. I really enjoy talking to someone at the beginning, to get them on the right track, and to ensure that they don't feel as alone as I did in the beginning. The needs of those in the first six (6) to twelve (12) months after diagnosis truly are very different from those of us who have amassed a few months or years of living with this disease.
Newly diagnosed with MBC
I've noticed a trend in some of the things that these newly diagnosed individuals communicate. Universally, they are scared to death. Universally, they have read something awful online. Universally, someone has said an awful thing to them. Universally, they are desperate for hope. Universally, they are worried and anxious, and overwhelmed. Universally, they are struggling to assimilate large amounts of foreign information in a very short time span in order to make HUGE decisions that will affect their life and health for the rest of their life.
I think back to those early days of learning that I have MBC and I was feeling all of those things. I didn't know what to do with those feelings and few around me knew what was going on or how to help me navigate them. Now, I do my best to communicate hope and concrete ways of learning to find a way to navigate the physical, emotional, mental, and spiritual effects of MBC.
In the midst of thinking about what I could say to others, I have also been thinking a lot about fear and what I am afraid of because how I can I offer hope or a way of dealing with all these fears unless I've been able to work through that myself in some way.
In the beginning, back in 2017, I had the fears that most people have. I was afraid of the truncated life expectancy. I was afraid of what I didn't know. I was afraid of the things others were saying. I was afraid of the experiences of others and what could happen. I was afraid of the possibility of mets to specific organs, especially the brain. I was afraid of "what if." I was generally terrified and anxious overall.
Once I gained information and got rather immersed in the MBC community, I realized that underneath the specific fears I've delineated above is the fear of losing myself. MBC takes so much from each of us and I'm no exception in that. MBC took my fertility, took my career, took my physical abilities, took my energy, took my skin, took my nails, took my vaginal health, took my optimism, took my cognitive abilities, took my emotional capabilities ... MBC took my trust in my body and in the medical profession ... and so much more.
I've experienced this sense of losing myself a few other times in my life to a lesser degree and each time I dealt with this fear and opened myself up to the possibility of the changes actually creating something better, I've grown in many ways. The clearest example of this struggle before MBC was when I had children. Don't get me wrong, I love my boys with a deep and abiding love; at the same time, I struggled with losing my identity as an individual to the all-consuming role of motherhood. All of a sudden, the people around me didn't even bother to learn my name, I was simply "Mom" to the teachers and pediatrician and coaches, etc.
It took me some time to embrace that I can be both myself and a mother. I can be both myself and a wife. I can be both myself and be in a profession. I can hold myself separate and apart from these roles, from these labels, from these titles. It took some time each time I moved into a new role or put on a different "hat," but I figured it out after a time each time.
The impact of stage 4 breast cancer
I'm sure no one with MBC will be surprised to read that, for me, MBC is a much bigger deal than these other times of fearing that I'd lost myself. MBC is not a role or a hat or a new label and it's certainly not a category that can be left behind or changed, no matter how hard I and others try.
I'm used to exerting my will and shaping my corner of the world into what I want it to be. I'm used to being able to influence others and circumstances and to producing a solution that will solve the issues at hand, or at least get closer to a solution. I'm used to being in control. I'm used to being smarter than the problems that I'm facing or at least knowing someone who is smarter or who has had experience in what I'm facing. I'm used to seeing a clear path through a crisis.
MBC doesn't fit into what I'm used to and what I've used to handle the times that I've felt consumed by something new to the point of losing myself, doesn't work the same way.
Sharing and talking about fear and anxiety
So, there's the problem. Stay tuned for the way I've learned to handle this fear so that it does not become crippling and take over my life. In the meantime, would you share your fears? I suspect you may find that those of us in this community share many of the same fears, many of the same stressors, many of the same anxieties; after all, the value of community is that we can be assured that we are not alone, that others feel similarly.
Caregivers: Do you practice self-care?