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You’re On Your Own, Kid

by Quinn FitzgeraldSurvivor, Hodgkin's LymphomaMarch 7, 2024View more posts from Quinn Fitzgerald

Taylor Swift really got it right when she said, “You’re on your own, kid, you always have been.”

Nobody prepares you for what it feels like to be a cancer survivor. If they did, you’d probably get some generic brochure filled with shiny, colorful stock photos of people with smiles on their faces. They’d be doing the things they enjoy because being a survivor means you’ve conquered the beast, and now you get to live your best life, right? Not to mention every photographed person in this brochure would be 30 or 40 years older than you (we don’t get those kinds of luxuries as young adults with cancer), and most of them would be wearing a headscarf (this is a brochure about cancer patients, after all!). There are probably some articles about the importance of a healthy diet, regular exercise, and sleep in your recovery that don’t offer any actionable or practical advice on how to make these lifestyle changes. Your care team would hand you this brochure during your first appointment along with all the other overwhelming informational papers you’re unlikely to read, and they’ll say to you with a well-meaning smile on their face, “See, this is what you have to look forward to when you get through this!”

The reality is that most of us are left to navigate this strange world of survivorship on our own. It’s as if we get dropped off in the middle of the wilderness empty-handed, and we are left to our own devices as we try to find our way back home. In some way, I’m relieved it is this way because I get to write my own story as I take back control of many of the things that were taken from me when I was diagnosed. And I know that I don’t need an informational brochure to accomplish this. However, so much of this new life “beyond” cancer has been unexpected, and I wish I knew where I was going.

One of the more challenging parts since I finished treatment has been trying to figure out where exactly I exist in the realm of survivorship. I’ve started to question what it takes to be a survivor and when that time comes for me to call myself one. Was it when I rang the bell, and my doctor told me that I’m in remission? I always imagined myself proudly wearing this new label of survivor at this point. But now I wonder if it will be once I’ve made it through enough years without a recurrence instead. Or maybe I’ve been a survivor from the very beginning of my diagnosis. After all, I did continue to exist through a lot of hard things since that random Sunday in December when I found a lump on my neck. I even question the difference between saying “I have cancer” and “I had cancer,” and I wonder which, if any, is the most appropriate for me to say at this point. It should be a straightforward answer—I either have cancer or I don’t. Instead, I find myself somewhere in between, in a place I thought couldn’t even be possible. It doesn’t seem right to continue to say, “I have cancer” when I’ve been told that my most recent scans suggest otherwise. But at the same time, I’m not sure that I can refer to something as being in the past when so much of it is still so present in my life.

Another unexpected challenge has been trying to find comfort in having fewer interactions with my care team. As I went through treatment, I couldn’t wait for my life to no longer revolve around such a strict schedule of appointments between seeing my oncologist, getting bloodwork, and going to chemo. I’m now in this place where I no longer have these appointments. I only have to see my oncologist every three months rather than every other week, and I’m supposed to feel relieved. My primary responsibility is no longer to be a “patient” and that should feel good. Don’t get me wrong, I do feel good, but I also feel uneasy. I always felt at ease knowing I’d speak to my oncologist in a couple weeks; I could talk through anything that came up and have my questions answered. Sometimes, I almost find it hard to believe that before my diagnosis, it was normal for me to maybe see a doctor once a year. And now here I am slowly returning to that same normal, feeling relieved but mostly feeling apprehensive and uncertain.

So far, survivorship has certainly been confusing, surprising, and disorienting. But it has also been wonderful in so many ways. I have more energy now than I can remember having in a long time. I have a strong enough immune system again that allows me to agree to plans with my friends without having to decline because I might get sick. I’ve been able to find my purpose again in my job, which has helped to remind me that cancer is only part of my identity. Most importantly, I’ve found so many wonderful communities of people with shared experiences who truly “get it.” They’ve helped to make this wild ride far less isolating as we navigate independently and try to figure out what it all means.

And so, I think Taylor Swift was also right when she said, “You’re on your own, kid, yeah you can face this.”

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