The day after my final radiation treatment, a dear friend said, “Now cancer is in the rear-view mirror.” She meant well, and having been through a (different) cancer of her own a few years earlier, she was drawing from her experience. A pragmatic soul, when her treatment was over, she simply put it all behind her. But I remember feeling my whole body clench at her words and something a bit like anger well up inside me. “Not yet,” I replied.
“But it’s done now,” she said. “You’re a surv….”
“No,” I cut her off. “Don’t say it. Don’t say I’m a survivor. I’m not there yet.”
There is a tendency to fast-forward those of us with cancer to the other side, to race us from the afflicted to the well again. On some level I get it – cancer is such a scary illness with so many possible outcomes that loved ones want us to return as quickly as possible to “healthy.” They want that “happily ever after.” Trouble is, for those of us with cancer, the scars are more than physical.
I’ll be honest – and I’m sure this will both resonate with and annoy some folks – for me, the hardest part of cancer was what it did to my psyche. When I got the diagnosis, I went numb. I handled the treatment process methodically, almost robotically – meet with the surgeon, discuss treatment options, have the surgery, wait for the biopsy and oncotype dx results, go for radiation. All very mechanical for me. I kept working (actually, took on more work than ever) and fought hard to “power through”, not panic about the unknowns (which was especially difficult in the weeks of waiting for the oncotype dx to reveal treatment and possible prognosis), and live as normally as possible in the meantime. Even I thought that once my radiation ended, I would “get my life back.” I couldn’t have been more wrong.
When the treatment finished, I crashed. That’s when the reality of cancer hit me. I could barely pull myself through the days; for the first time in my life, I was in a full blown depression. I couldn’t shake the feeling of betrayal and injustice, the terror that more cancer might be lurking inside me, the sense that life itself seemed pointless. It took counseling (thank you, LiveStrong Foundation) for me to start to feel more like me again. Even now, nearly a year later, though I have more good days than bad, sometimes it’s still an effort to get motivated, sometimes I still feel vulnerable and “unsafe” or confused about why this happened to me, and I still cannot tell you what in my life brings me joy.
I don’t know what it takes to feel like a survivor. I know that I am one by virtue of the fact that I have (or so the doctors say) survived the medical aspects of cancer, and for that I am grateful. But I am also dubious. Have I really survived? Is there more coming? How much life do I really have left? These questions haunt me.
I have both reverence and disdain for the word “survivor.” People who have battled the worst cases of any illness and the horrendous treatment that goes with it – to me, they deserve the honor of a label like “survivor.” But in our society, the word “survivor” is applied too quickly in a way that seems dismissive of how hard we work emotionally and physically to get back to ourselves. Cancer is a psychological journey, not just a medical diagnosis. I may never use the word “survivor” to describe myself – but definitely not until my psyche has at last fully healed.
Share:
Follow:
I totally agree. Everyone celebrated “the end,” on my last day of chemo. To me, it felt like the beginning. Finally, I had a little more time to reflect on what I had just been through. It was traumatic and depressing, plus I still had surgeries and lots of follow ups to go. People called me strong and inspirational for powering through, as you say. The psychological part of this is what’s requiring strength. I think we’re all survivors, in some way, for facing cancer. The word may not be ideal, but it is hard to some up this journey with a single word. I applaud you for sharing your story!
My new word choice is “cancer warrior” rather than “survivor.” Something about warrior that feels highlights how hard we work to beat cancer. (Survivor makes it seem like it happens to us.) You are so right about the strength this takes. Keep on keepin’ on! You’re already a winner.
It is hard to sum up this journey in a single word!
This post resonated so much with me that I printed it out. I was so confused after treatment was over. Why did I feel worse than during treatment??? I finally found a thread on the breast cancer forums about a bunch of women feeling this way. How you lose your warrior and are lost after fighting the battle. It made so much sense. I was caught up in the fight and just getting through the surgeries and treatments and suddenly I was supposed to be all done and overjoyed. Instead, I was bald and miserable. I am 1.5 years past my last chemo treatment and I still struggle. I am working with a therapist and we are starting to talk about PTSD, which I do think I have. I don’t jump out of bed like I used to. I’m not sure I ever will. And I never use the term survivor because I don’t think this “journey” has been 100% survived yet or ever will be.
It absolutely is PTSD only no one labels it that way (and I wish they would.) I wish my surgeon and oncologist and all the other folks I saw and spoke with (including a therapist) would have said those four letters to me. It’s actually liberating (on some level) to know what these feelings are. I also once leaped out of bed, eager to see what the new day would bring. Now, I just open my eyes, lumber out of bed, and feel numb, neutral.
Wow, so spot on!
Feeling like you are a robot going through the treatments, being frequently poked and prodded, running from on appointment to the next, then all of a sudden you’re cured (thank God!!) and now you’re supposed to celebrate. Instead, that’s when I first started breathing again and started to mourn and give and sleep – a LOT. You’re right, we’re bald and lost and like we just got kicked off this rollercoaster, all dizzy and wondering where to take the next step!
Labeling ourselves is perhaps one of the most challenging aspects of our journey because language is so personal and our own journeys are personal as well. What exactly are we now? There are some who like the “war” metaphors with Cancer. I, personally, do not. Nor do I like walking in Survivor parades either! The way we struggle for words is in a way, a struggle for the meaning. It will be interesting to watch this word change in our language. I’m doing an unofficial survey in other cultures and languages to see if it is referenced differently.
It’s so true about how hard it is to find the “right” word. I’d love to see what you find about other cultures and if they struggle with language the way we do.
This entry resonated with me. I walked out of my breast surgeon’s office, after my follow-up from my mastectomy, with a “survivor” friend who said “Now you can say you ‘had’ cancer!” That sounded joyous to me! But it took me a while to settle in with that. Others in my life have said the same, “Yay, you’re healed, no more cancer!” The pathology report after my surgery revealed no cancerous tissue in both my breast and nodes. Great news indeed! So I can relate to not feeling rushed into survivor, celebratory mode. I still feel wounded, and I’m trying to settle into this new skin I have..the one where my body betrayed me, where chemicals shed me of my beautiful mane, and where the surgeon sliced me up and sewed me back together. I agree, when I was going through the steps, it was all mechanical – I kept showing up to the next appointment and felt an odd sense of security because I was always under doctor’s supervision. Now that I’m on “the other side” I feel like I’m fumbling, trying to find my footing, as a “survivor.” Lastly, I agree, it does make our friends and family members comfortable by labeling us “cured” (for now), this way they don’ have to deal with the emotions that come with the C word. I’m still waiting to have my prophylactic surgery, in a couple of months, so we’ll see what THAT “other side” looks and feels like. Thanks for bringing up this sensitive topic!
Interesting piece and I can really resonate with the need for family to get to an ‘end’ point and see that as done, when I’m guessing we simply move into a different aspect of this new landscape. I am just about to start radiation and so this is such relevant sharing for me. Thank you x