People are always giving advice to cancer patients. Whether it is nutritional advice or doctor recommendations or tips on how to quell the nausea that accompanies chemotherapy, just as soon as people hear you are sick they usually want to find a way to help. Most of the advice is welcome and encouraging, though in some cases you’re just not in the mood to hear what someone has learned because you’re too busy treading water.
That’s one reason I hesitate to lend any advice at all. I’m only 24. I’ve had cancer for 16 months now. It feels like forever to me, but it’s a short period of time compared with people I know who are going on 5 or 7 or 10 years living with cancer. But I’ve received some heartfelt advice and solidarity along the way from fellow cancer patients, doctors, friends – even from strangers – and it has meant a lot to me. It’s been 16 months since my diagnosis and four months since my bone marrow transplant, and now I want to share what I’ve learned along the way.
Here are six strategies that have helped me to cope with cancer.
Find Your Community
At first, I bristled at the idea of a cancer community. It was enough to have cancer; did I also have to share my experience with a group of strangers? It felt like extra homework. I hesitated for several months before going to my first cancer support group meeting. It was overwhelming to imagine hearing a dozen other stories as bad as, or worse than, mine.
But something surprising happened. I started going to a young adult cancer support group at a Gilda’s Club in upstate New York. For the first time since my diagnosis, I became aware of the fact that I was not alone in my fears and anxieties. Instead of feeling isolated in my experience with cancer, I began to realize there was an amazing community of people out there who were going through the same thing and could help me make sense of what was happening because they had been there themselves. Rather than feeling overwhelmed by the stories of the other cancer patients, I felt empowered and inspired by their strength and bravery.
I’ve also found a surprisingly vibrant cancer network in virtual space — on Twitter, Facebook and elsewhere. But in my experience, nothing can replace face-to-face interaction – even if no words are exchanged – with someone else who understands what you’re going through. Two of my closest friends are people around my age whom I met at the hospital. We don’t talk about cancer all the time. But knowing we can go there if we need to is invaluable.
Cancer feels messy inside and out, whether it’s the disease itself, invading my body, or the material clutter that comes with disease: heaps of laundry piling up, stacks of unopened bills, orange prescription medication bottles crowding the bedside table, unanswered phone calls and e-mails, and more. I’ve found it helpful to try to control the chaos in small ways. Thoreau may not have been talking about cancer when he urged us to declutter, but the words “simplify, simplify” are always swirling in my head.
I’ve gotten rid of unnecessary clutter in my room. I do regular mini-spring cleanings. What do I need? What can I put away in storage? It makes me feel better, even when cleaning tires me out. The way my surroundings look and feel has a big effect on my mind-set, especially when I am spending a lot of time resting in bed. I like to feel light.
Prioritize Your Relationships
Cancer also forced me to declutter my social life. When I found out I had leukemia, I was a recent college graduate. I had dozens of friends and acquaintances who formed a frenzied around-the-clock social network, talking and texting all day, every day. I was tied to my phone like any other 22-year-old. (Actually, I carried around two BlackBerries, one for work and one for personal use.)
After my diagnosis, I tried to keep up my old ways, but there was less time. And I had much less energy. At first I felt guilty about not being able to maintain the same frequency of communication with my friends. But having cancer forced me to adopt a simpler schedule. I got a new phone — an entry-level model with no e-mail, no Facebook, no keyboard for convenient typing. It has made me more aware of my time. I interact with a smaller group of people now. I’m less scattered and more present. And my relationships are stronger for it.
Be Kind to Yourself
Instead of feeling mad at my body for failing me, I’m trying to give myself permission to take it easy. Easier said than done — I almost didn’t include this point because I’m still struggling with being kind to myself. I can’t help but feel frustrated with myself when my body is overly tired, or when my mind is fuzzy. (They call it “chemo brain.”) Sometimes I beat myself up over sleeping late into the afternoon. Or when I can’t eat more than a few bites of any meal. Or when my muscles are too weak to pick up the pitcher of water on the counter. It’s a daily struggle not to view these setbacks as failures or weakness. But I’m trying not to punish myself for the things I can’t change. In the time we should be the easiest on ourselves, I’ve found that we can often be the most judgmental and harsh.
Do Something for Someone Else
The experience of being sick for an extended time means that you become the center of attention. Someone has to be taking care of you, people are always worried about you, and as the patient you spend a lot of time focusing on, well, you. That’s a lot of yous. Cancer confers a certain kind of myopia. You’re always thinking about your own health above all else. That doesn’t leave a lot of time to think about other people. For the first time since my diagnosis, I’ve begun to send letters and care packages to other cancer patients and friends of mine going through a difficult time. By reaching out, I’m paying it forward for all the help and care I have received. I have found that small acts of gratitude or connectedness to other people who are suffering rescues me from my own self-pity and makes me feel like I’m capable of helping, and not just of being helped.
Set Goals Unrelated to Cancer
From the earliest days of my diagnosis, one of the casualties of cancer was the feeling that I had to shelve my dreams and goals. These paused plans — dreams, interrupted — weighed on me every day. I was constantly thinking of everything I could be doing – everything but lying in a hospital bed or sitting in an infusion suite. Right before I got sick, I was working on my dreams. Relying on research about Tunisian politics that I presented in my senior thesis in college the year before, I planned to travel to Tunisia, my father’s homeland, to report on the revolution taking place there. Those were the early days of the Arab Spring. There was something big happening, and I was ready to cover it. But with my diagnosis came chemo and new plans. It was devastating to miss this opportunity.
But I decided that I didn’t want to let cancer put my life entirely on hold. It had always been my goal to be a writer of some kind. So now I’m going after that goal again. This time, however, I’m trying to write about a different kind of revolution.
The New York Times WELL
August 23, 2012
Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 24-year-old writer who lives in New York City. Her column, “Life, Interrupted,” chronicling her experiences as a young adult with cancer, appears weekly on Well. Follow @suleikajaouad on Twitter.