As a Survivor, I Felt Invisible.

Everyone loves a cancer patient. But as a survivor, I felt invisible.

I did not expect remission to be difficult. The day that I got the news, I nervously entered the CT machine, forced myself to stare up at the artificial, fluorescent blue sky above me, which was robin’s egg bright and dotted with cheerfully puffy clouds. It is sweet that the hospital tries to give us something to look at, I thought, as the bulb keeping the “sky” lit flickered. But you cannot look at the sky when you are in a CT machine—not even an artificial one. You can only see the blackness that is the back of your eyelids, as a robotic conveyor belt gently pushes you into the (cramped) unknown.

It took two hours after getting my scan to get the news.  My partner and I were led by a friendly nurse into a clinical room and asked to wait. It took what seemed like days, but, was only a half-hour. Then, it was over. My doctor didn’t wait to tell me the good news—he strode into the room and in the same breath, told me I was clean. I laughed. My partner says he doesn’t remember the conversation after that, he was so shocked. I was too, but I kept it together to hear next steps from my team, to learn about what surveillance would look like, to shake the hand of the man who saved my life, to thank him. Then we left. We wouldn’t return for three months. I was soaring, arms spread wide to embrace the freedom of remission, of knowing, of some sense of security. I could have been Julie Andrews in The Sound of Music, cresting a vibrant hill, singing out to no one, talking to strangers, shouting out: I have confidence in me! I was so proud of myself. I had done the thing I wasn’t sure I could do.

I soared through two weeks before I crashed. I thought it would be a good idea to get involved with a community of young survivors, but upon doing so, I encountered lovely, brave, brilliant people who had different diagnoses, prognoses, and care plans than I did. I was faced with the unknown of relapse. But this had no end date, no clear answer, no clean scan to look forward to like chemotherapy or radiation. I saw a lifetime of question marks ahead of me. I thought I had learned to let go during treatment, but apparently, not enough.

Meanwhile, the world around me had changed. My world, that I had constructed for myself. I realized that there were events and gatherings my friends talked about offhandedly and realized that I hadn’t been invited. Inside jokes were made that I wasn’t in on. People stopped asking me how I was doing as much as they had before. I was afraid if they did, they would not like my answer: “not great. Can we talk?”

Faced with this perpetual unknown, with unexpected body aches and pains as a result of chemotherapy, with throbbing under my arms and in my neck in what I felt to be phantom tumors, with cognitive lapses constantly due to “chemo brain” – I realized that I was different. Not fundamentally—I was the same person, after all—but also, yes, fundamentally. I couldn’t even explain it to myself, so how could I expect anyone else to understand? These friends had already given me so much love, so much time, so much care. I couldn’t burden them more. So, I didn’t offer the information, and they didn’t always ask.. As I pulled away, I took a step back from people I loved. I receded into myself. I was frightened, and so lonely, and in the middle of this, convinced myself that the friendship that had been so generously extended to me from friends new and old during treatment had been a scam. At the same time, I felt like I didn’t fit in. Everyone was so lighthearted, but then also got so stressed about things that used to stress me out too, but now didn’t as much. I felt like my peer group couldn’t understand me and just saw me as cancer girl. I didn’t know how to be young anymore, and so many parts of my identity were shaken to my core. I became obsessed with the idea of dancing because that is what “young” people do. What is a “young” person? My body didn’t want to dance. It wanted to sleep. Everyone loves a cancer patient; I would tell myself.

But as a survivor, I felt invisible.

I fell into a deep depression. My grades slipped. I couldn’t sleep. I procrastinated, became obsessive, was lethargic, made excuses for myself and called them “self-care” and I blamed myself for everything. I felt disconnected from who I was and mourned– so much. I looked at photos of myself on my Fulbright in Spain before I got sick, thinking that “girl had cancer and she didn’t even know it.”  It felt like a sick joke.

I forgot what it was like to feel genuine, roll-on-the-floor, giggling joy. I felt for tumors constantly. I hated myself for not greeting every moment of my new life with joy and gratitude, and for not treating it as a second chance at life! At being the best I could be! I was squandering the opportunity and in doing so, I was dishonoring my cancer experience. I wanted people to see me as brave, but I saw myself as selfish, a coward, ungrateful for having survived when so many wouldn’t, and so self-absorbed and narcissistic with my pain, living in a pool of my own guilt and shame. I saw photos and blog posts of other survivors who seemed to be doing so well. I compared myself to them and thought “I am doing this wrong. Maybe I didn’t deserve to survive this.” Then, I hated myself for thinking I didn’t deserve to beat cancer, because I had fought so hard to beat my disease, and because I did—and still do—love life, so, so passionately.

No one told me this. When I finally shared this information with my therapist though, she was not fazed. This type of cycle is quite common in cancer survivors, especially in young adults, she told me. It was liberating.

This is not to say that this conversation changed my depression entirely. It took a few more months of hard work in therapy, accepting that some friendships would not last, moving on, accepting my new body—constant hip pain, memory lapses, trouble concentrating—and knowing it didn’t mean I was less intelligent, less driven, less deserving of love. Knowing that the friendships weren’t a scam. Recognizing my insecurities. Letting go. It took a long time. It is still taking a long time. I think it will be a forever journey. The difference is, I have become better at learning from the journey. I once read a Lao Tzu quote on a tea bag: Nature takes its time, but still it gets everything done. I scoff at myself for holding that close to my heart, but it is true. So I have chosen to live, and to live, we must learn.

I wrote this poem when very depressed, after a hard therapy session, while looking out a café window over my steaming cup of coffee onto a busy street. I wrote it about looking into the past and feeling stuck in time, grieving for who we once were, and the loss that comes with change. I also wrote it about hope.

Remission, for me, has been much harder than treatment ever was. But it has also helped me grasp more appreciation for life. It has been just over one year since finishing chemotherapy, and I finally feel like I am on the other side. I am still so proud of myself, and perhaps prouder still, that I am surviving the other part of cancer, the part that forces you answer: What now?

* * *

Wherever you are on your journey, you are not alone. 

When this chapter was closed

Of course, it was not closed

It was sunk under a dune

Gathering dust, calcifying

Taking on sand, until it was

Petrified, like prehistoric wooden

Fossils. They showed the rings of growth

And destruction, from a time past

In stops and starts

A life in layers. Time in fragments

Each ring a shield

A new face

Just like me.

 

The tree became something else, precious

To history. Its chapter was not closed.

It started by stretching tall

Toward the light of a more lush forest

This confused and limitless desert

That was once teeming with light and life

Its branches in constant prayer

To the blue beyond, a sacred ritual of joy

That made it a worthy relic

Of a time

Of a life

Long gone.

Just like me.

 

I too can pray, though I doubt

I have an audience.

In Montreal, I lit a candle before

A repentant Mary

And prayed for her to save my life.

And her hard wooden stare made me cry.

She was a relic, a new form for that holy tree

A martyr for her suffering.

Just like me.

 

One day, I will cry more, healing the desert.

I know that day must come

Because I feel the tears

Locked in my eyes.

I too can perform the miracle

Of the weeping relic

If the world would allow me to be still.

 

If I could have a moment, please

To brush the sand away

To kneel down and feel the Earth, to stand up

With my calcified knees.

To sit at my desk with a pen and a sigh.

It starts by giving thanks.

 

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All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://elephantsandtea.org/contact/submissions/.