There seems to be a special kind of terror associated with recurrence. I see it in the faces of patients I work with, hear it in the stories people have shared. It’s sort of like thinking about getting back together after a bad break up. If I couldn’t trust you with my heart the last time, how can I trust you now? Patients ask, if the last round of treatment didn’t work, how can I have confidence that this one will? And how in the world can I trust my body to heal when it has betrayed me twice already?
Of course, part of the problem is that many folks wrestling with a recurrence haven’t had a chance to recover, physically or emotionally, from the first go around. It took me a couple of years to feel like I was on solid ground again after my doctor had assured me I was well. A recurrence at any time would be devastating, but during that period of vulnerability would have been especially shattering.
Some people are naturally optimistic. They are able to toss off phrases like, “They cured me once, I am sure they will cure me again,” and actually mean it. They are confident in their medical teams, the evolution and discovery of new treatments and the healing ability of their bodies. But I think they are not the norm.
I spoke with a woman in the infusion suite the other day whose response is more typical. She’s being treated for a recurrence of ovarian cancer, which, for many women, has a nasty habit of coming back. She’s older, and fearful her age makes her more vulnerable. She also was alone, and that makes her more emotionally defenseless. The dread in her voice was palpable. What could I possibly say to ease her distress?
We live with uncertainty every day. It’s not just the proverbial bus we need to worry about, but threats to our safety and wellbeing are everywhere. Climate change. Pollution in our food supply. The health consequences of aging. Bad actors. Accidents. How do you keep the anxiety at bay? Thanks to technology I can check to see that my husband and kids are where they should be, or at least, their phones are. (Full disclosure, my kids are adults, and yes, they know I spy on them!) But are they safe and well? You never stop worrying about the ones you love, and you never stop thinking about the possibility of a recurrence. Unfortunately, cancer cells don’t come with GPS trackers.
The patient didn’t want to talk, didn’t want to share. But she was accepting of the company. So, I sat. And, as I chatted away about why I volunteer, what a peer mentor is, support services available to her, even about the weather, I could see her face relax. The tiniest hint of a smile emerged. Before long, the infusion pump started beeping, announcing that her treatment was complete. A nurse emerged and disconnected her. And she was off, with a blasé wave and a cheery, “See you next time.”
I’m not sure I will know any better what to say next time I see her, but I hope that my presence, maybe a hug, and even my chatter can help ease her terror, if only for a moment. As a wise patient once told me, “Sometimes you just need to hold space, to be there.” I know that it’s not enough, but it’s a start, and sometimes that’s all you can do.