I read an article yesterday on surviving suvivorship, and it struck a chord in me…several actually. The title grabbed me because of the notion that survivorship might not be the walk in the park that it seems to have the reputation for. The article is a short interview with a woman, a mental health counselor, that has fought cancer and her perspective navigating life after cancer.
I’ve thought about what it means to be a survivor so many days since diagnosis, and wondered if I would ever forget about cancer. The short answer is “no” but it’s way more complicated than a simple no. I’ve thought about if I even wanted to be labeled a “survivor.” Maybe I just wanted to be Valerie, or maybe I just wanted to live like normal. But the facts are different. When you have cancer and you make it past the moment they confirm your diagnosis, the label “survivor” gets smacked to your forehead with superglue. Can’t. Take. It off.
Cancer never leaves you. It comes unwelcomed, it’s treated (cured in some cases) and then you spend the rest of your days and years thinking about it. It never leaves. It never goes home. Never goes back where it came from. It settles in, and it’s content to invade the privacy of your mind each day.
I think the perception that once you hit that sought after stage of “remission” or once you finish treatment that people assume you’re good. The expectation is often that you’ll bounce back to whatever normal used to be and keep going like nothing ever happened. So in an effort to change the perspective and echo and add on to what Ms. Barbara Abernathy stated so well, here are a few things I wish I could tell you.
1) The “Chronic disease” Barbara refers to is fear and residual symptoms
It’s not unusual for folks diagnosed with cancer to come out on the “cured” side with more symptoms than they had going into treatment. Don’t for a minute think that the vices used to straight-up kill cancer aren’t going to affect the rest of you, too. I will be the first to tell you that surgery and radiation cured me, but at 9 months out I’m facing daily symptoms that may be with me forever because of those treatments I chose to have. And I would do it all over again.
Barbara talks about the 80 lb backpack she puts on each day in her article, and I envision that backpack filled to the brim with symptoms, thoughts, emotions, burdens we feel like we’re placing on others, and just the weight of knowing what we have to do mentally and physically to get through the day. Some people’s backpacks weigh more than others and some days we get to put the backpack down a few times during the day, but it goes home with us regardless.
So be gracious when some days seem harder than others and you try to remind us we’re survivors. We may have survived all the days before, but today we’re still working on it. I can be fine one day, and really need to talk out my thoughts and feelings the next day (or even hour). And it’s not all bad, but it is indeed a pilgrimage, a journey, and adventure, and a process.
2) Listen and ask questions.
We know you don’t want to. We know it’s hard to hear about what your loved one or friend is dealing with. And we know it’s hard to think about the day we might not survive anymore. We get it. But we need to talk about those things too.
Cancer has blown the doors wide open in medical research and treatment options, but in social and personal situations it still seems somewhat taboo. The conversations rarely get past, “How ya doing? Ya good?” and from our side of the fence, there’s a decent chance that we need to talk but don’t know how much you can handle or even care to hear about. And we certainly don’t want to burden you with our issues so we smile and say we’re good and talk about how blessed we are to still be alive and well despite the struggles.
We typically know our people we can talk to but sometimes it’s nice for someone to surprise us and say “How are you really feeling? Are you dealing with anything in particular right now? What’s your scariest thought you live with?” Those moments mean so much. Promise. And the answers will surely be something you don’t expect. But just as we’re learning a new life after cancer, it gives you the opportunity to peer deeper into our lives and maybe shed some light, prayer, or a simple truth with us about what we’re dealing with. Just don’t give us the “oh, but you’re a survivor” talk. Surviving is still hard!
3) Cancer makes you grow up…FAST!
This is a heavy one (if cancer isn’t heavy enough already). I will never forget the moment I realized I was, in fact, mortal after they told me Glanda had cancer in her. As silly as that sounds, the thought never crossed my mind before then and up until that point I was living life with no expectation of death, harm, disease, health concerns, etc. Nothing. I was fat, dumb, and happy for lack of a better saying. But when I started processing what it meant that my body had produced cancer cells, all I could focus on for a while was that I was going to die and it very well could be from cancer. Reality hadn’t changed from the moment before. Not to be too morbid, but dying was always a possibility, but it was never one I ever seriously considered. I was always going to (and probably still will) live until I’m old and wrinkly with my grandkiddos running circles around me.
Cancer matured me. It made me think about reality in a different and uncomfortable way, but let me tell you, I enjoy the simple, dumb stuff so much more these days. I have no shame in acting ridiculous in public, dancing when the groove hits me, singing out of tune, sharing what makes me happy, writing whats on my heart, and loving my people hard as heck even when it’s annoying. Don’t care. Because life is temporary folks, and this is the only one I’ve got.
So don’t shame people who have walked this journey for being bold. Don’t be embarrassed by my shenanigans (unless they’re offensive, and then please tell me). But join in sometime. Share in the crazy. Let loose a little. It’s actually kind of fun. You only live once. Yeah, I said it.
Cancer is truly just one of those things that you don’t understand unless you’ve walked it yourself and even then, each person has a different experience. But I so want to bridge the gap and start to eliminate the social awkwardness that seemingly surrounds us “survivors” as we’re named. I cant help but believe that it would help us live and not just survive our survivorship.