“But now, lying in the dark, she could feel nothing but fear. In ten days, she had become used to the rhythm of life in hospital.
She had become used to three meals a day; to the friendly chatter of the midwives; to the cups of tea which appeared on trolleys at four o’clock. She had become used to the feeling of security; the knowledge that, if disaster struck, there was always a button to press, a nurse to summon.”
-Cocktails for Three by Madeleine Wickham
Last week, I stopped by the cancer center to drop off business cards. As I drove past the hospital, I wanted to go inside. To be honest, I found myself missing it...missing treatment. My treatment was in-patient. I would go in for five days at a time for a constant 96-hour infusion.
Every time, it was like I was preparing for war.
I had a hospital box that had everything I would need or want in it (and then some!). It included my chemo blanket for comfort, electric candles for ambiance, my heating pad for pain, 3x5 cards with Bible verses for encouragement, baby wipes for a shower substitute, our Roku for entertainment, essential oils for sleep, fake flowers for aesthetic, my own clothes for familiarity (no, thanks to the hospital gowns!)…that’s just a few of the many things I brought with me to make my room feel like home. I even brought my own towels! It was a whole ordeal.
I am 0% ashamed of my “high maintenance” routine because it made my thirty total days in the hospital so much more tolerable.
The day before each round of chemo began, I would pack my box and get ready to go back to the hospital. Five days in, then two weeks at home. While I was in, it often felt like jail. No outdoor privileges, no fresh air...
It wasn’t until Round 2 (about 130 hours into the whole chemo experience) that I learned about a tiny stairwell on my floor with a chain-link fence. Once I got Xena (my chemo pump) wheeled over the base of the door, I could get “outside” and look out over highway 163 through that chain-link fence. My sister and I sat out there one day and she painted my toenails as trash was littered at our feet. Sounds like a dream, right??
So, it doesn’t make a whole lot of sense to miss that kind of imprisonment, but I often do.
I miss the way that I always knew what to expect.
I miss Gerry (my favorite night shift CNA) and the way he would always offer Mike and me the most unhealthy snacks for a cancer fighter. I miss David and how sweet of a nurse he was. I miss hearing Naomi’s stories at night about traveling the world when she would come in and get Xena to stop beeping. I miss ordering lots of bacon for breakfast. I miss telling the story of my miraculous diagnosis. I miss taking my daily walks around the floor and saying hi to all the non-oncology nurses.
I miss celebrating the little victories like a solid hemoglobin count with science nerds like me that cared.
I miss being a source of light and joy on an otherwise dreary floor. I miss the camaraderie with the hematology/oncology fellows--the way they were so excited to meet me because I was “the one with Grey Zone Lymphoma.” I miss doing yoga with Xena at sunset in my favorite nook by the elevator. I miss the feeling of freedom when I got discharged and felt fresh air on my face for the first time in five days. To be honest, I miss the loving attention.
It may seem like a strange thing to miss getting toxic poison pumped into my body. The thing is, though, once you’re done, all of the certainty that was once there goes away. Absolutely nothing feels certain anymore. People fade away since you’re (supposedly, but never really) back to “normal life.” Financial support disappears entirely despite the journey to healing being far from over (and significantly more expensive after treatment when it’s time for real and natural healing to take place).
People have expectations of you--they expect you to be overjoyed and back to your old self in no time.
For several days after I got out of the hospital for the last time, I sobbed in a ball on the couch. I cried my eyes out--shaking, gasping for air...the whole thing. What in the world would life hold now? When would I feel better? When would I have my energy back? When would I look healthy again? Would it come back? How would I know?
In the aftermath, there are more questions than answers and it’s scary as hell. Don’t get me wrong, there are a lot of beautiful things as well, but you already know that.
What you probably don’t know is how hard survivorship is. No one guides you through it and very few people are talking about its difficult twists and turns.
So, I’m here to tell you that sometimes I miss chemo.
And that if you find yourself missing a scary, dark time in your life, I get it. You’re normal. Soldiers miss the war all the time. We have fought hard. We are allowed to miss the war even while we celebrate having won and that it’s over.
Let yourself feel all those feelings. Better yet, find a group of people who you can connect with (virtually or in-person) that have experienced similar things. We need each other!
If you’re a young adult cancer survivor, you might consider Stupid Cancer or an outdoor program like First Descents. Even if it’s just through social media, get connected! We’re not alone, so there’s no reason we need to feel alone.
Many times, I talk with other survivors that want to just leave cancer in the past and forget it ever happened.
I’m not in that camp.
There is too much beauty to miss out on if we do that. Let’s not completely leave behind the hard seasons of life no matter what they hold. I’d encourage you to write down the things that were good--the things you loved or that you miss. Let yourself miss them.
Don’t go back for too long, but choose to celebrate the things that were beautiful and good, even amidst difficult seasons. We can change the way we think about our tragedies and trauma. We can choose to see them as beautiful seasons in which we grew and flourished and became stronger in ways we didn’t even know were possible...in ways that would have been, otherwise, impossible without the tragedy and trauma.
We are who we are because of the battles we have fought.