When cancer invades your life it changes you. It changes everything. I can only imagine what is is like for a patient, certainly the physical aspect alone is overwhelming and painful, and the psychological aspect must be beyond frightening. My son is too young to communicate any of this to me, and that is assuming that on some level he understands what has happened to him. I can only tell you what it is like for a parent caregiver, particularly me, and my own experience. It has been earth shattering. It has changed me so much that I am not quite sure who I am anymore. By training (and some would argue by nature) I am a sociologist. As such I tend to analyze how my experiences fit into the the overall culture. Are they generalizable, at least within a particular subculture? Can I take what I have felt and use it to reach out to others, and possibly find patterns that can be used to help us all deal with this? Sometimes I wonder if my tendency to to this is actually a way of coping; distancing myself from the experience by making it more clinical. I guess you'd have to talk to a psychologist about that. Ha.
Anyway, one sociological concept that has been on my mind is master status. One's master status is the title by which they tend to define themselves, such as mother, member of a particular race, or ethic group, student, son, poor, physicist, or lawyer. We have many roles, some ascribed (given to us) and others achieved (earned or chosen by us), but one overarching role generally defines who we feel we are at different points in our lives--this is your master status.
Cancer has definitely changed my master status, and from my conversations with others, I think this is generalizable to the subculture of oncoparents. I don't know what you want to call this role, it has a lot of names: oncomom, momcologist, or simply parent of a cancer patient. It has consumed my life, everything else comes second to this role. When my son was diagnosed at six months old, I was still getting accustomed to my new role of mother, which was hard enough, and suddenly I was thrust into the world of cancer. Cancer overtakes your life, not just the worrying and grieving your child's health, but the daily tasks of it. Changing bandages. Giving shots. Managing chemo protocols. Finding food your child can stomach. Soothing their aches and fears. Doctor appointments. Blood work. It is constant and everything else takes a backseat. It becomes the center of your thoughts, after all these things are keeping your child alive. It also changes the way people view and treat you. Some days people's voices drip with pity, it can be very hard to deal with. Other days you are the super-parent, "You are so strong!" This is also hard, since most of us feel we are simply doing what we must. It is hard to be aware that in someway you represent what they fear becoming, the parent of a sick kid.
Make no mistake, being the parent of a child with cancer is an ascribed status. It is thrust upon you and it changes the way people see you. No one wants to have a child with cancer, we want our children to be healthy. But, I would argue that there is a component that is achieved, and that comes with an acceptance of the role rather fighting it.
I fought it at first. Part of it was fear. Part denial. I didn't want to have a child with cancer. I wanted this to end quickly, they'd get the tumor and he'd have a couple chemo treatments and, poof, it would be gone forever. I quickly learned that that isn't how cancer works. Once it touches you it is with you forever. Diagnosis, treatment, post-treatment and survivorship--it is never gone from your mind and you will always see it lurking in the shadows. That is the best case scenario.
Please do not think that the bluntness with which I discuss my fears and the realities of my son's cancer means that I am overly dour, bitter, or angry. Certainly, I am all of those things at times, but I am also hopeful, joyful, grateful, and accepting (although sometimes slowly) of what life throws our way. Our family has come to the conclusion that things are not nearly as scary when you accept them as a possible or current reality, so we try to be honest with ourselves about how we feel and what may be coming our way. I think this is how I came to claim the onocomom status, by facing the fears it represents.
I am a firm believer in acceptance and facing those things that frighten you, despite the pain and discomfort it usually entails. However, that does not mean I am judging other parents. One thing this journey has taught me is that you never know another's struggles. Pushing aside the thoughts I openly discuss, may be the only way some parents can get through the day. I understand that. This is simply my path, but one I feel is also tread by many other oncoparents.
The takeaway of this rambling post is that, ascribed or achieved, as an oncoparent you have most likely found yourself dealing with a new and unwieldy part of your identity. It exists not only aside your new fears and responsibilities, but is hopelessly intertwined with them. It is hard to accept change, and even harder to accept when it occurs within ourselves.
Be kind to yourself.