Figuring out how to talk about your cancer is a fraught issue. Once you’ve told the people important to you about your illness and prognosis, the cat is out of the bag. Word will spread, whether it’s because of word of mouth or running in to people when you’re bald. Then again, you may not be out and about frequently during treatment. Still, there’s Facebook. As people hear about your illness, some unexpected “old friends” may reach out to you – random people from high school and college. They may write stupid things as the healthy often don’t know what to say.
Still, I’m in favor of being open about your cancer. I realize this is not for everyone. But if you do decide to be open about it, you want to be careful not to make cancer your identity. Don’t let it define you. Keep your interests in perspective even if you can’t fully partake of them during treatment.
No, you won’t be able to do all the things you normally do while you’re ill and in treatment. If you’re a highly active person, you’re going to have to get used to slowing down. Think about trading hiking and hardcore cardio for gentle yoga or swimming. And make sure to clear any exercise with your doctors beforehand.
Even if you’re more sedentary, you may have to adjust your habits. For instance, I’m a big reader, but my cancer treatment made it very hard to focus on text, so I switched to audiobooks and podcasts. This worked well for me because I think that being read to is even better than reading on your own.
Maybe you’re more of a TV and movie person. Subscriptions to Netflix and HuluPlus are great source of portable entertainment, provided you can get Internet at the hospital and have a laptop. If not, you can watch at home while you convalesce between treatments. I found watching television series I’d missed, like The Sopranos and Arrested Development, was very entertaining and were welcome distractions.
If you’re a knitter, you may find it difficult to knit if you have neuropathy in your hands. This can manifest as a “pins and needles” feeling, burning sensations, or other uncomfortable sensations, making fine finger work difficult and painful. Browse craft books to find something that will fulfill your D.I.Y. desires in a way that’s gentler on your hands.
Journaling or blogging can be very cathartic, but as with knitting, neuropathy can make writing by hand or typing impossible. If you’re not camera shy and you have a laptop or smart phone with video capabilities (and who doesn’t these days?), you can create short videos to share with friends and family. There’s always iChat and Skype for live communication, but making videos allows you to do it on your own time when you’re feeling well enough to communicate. Make a vlog or video blog in lieu of a written blog, or simply video journal for yourself. Make your own podcasts.
The point is, trying to keep up with your habits even if that means modifying them or trying new things. Do things you can talk about with your friends. Ask for movie and podcast suggestions. Invite a friend to yoga with you. Your doctors will tell you to avoid crowds because of the immune suppression brought on by treatment that makes you more susceptible to germs. Which is all to say, you probably can’t go to the movies or a bar. So invite a friend or two over to watch a movie and share a bottle of wine when you’re feeling up to it. (And if the doctors allow you to have wine.) If you’re feeling really good, throw a small dance party in your home.
And, of course, you don’t have to downplay your cancer. Be honest with your friends and family as you see fit. I used to joke that I looked like Uncle Junior from The Sopranos with my glasses and bald head. I’d brag about my ghetto fabulous head wraps, and how I stole my look from the neighborhood girls in Brooklyn. I’d complain about how the three tubes of the temporary Broviac in my chest (that provided access to my central venous line for chemo and fluids) made it look like I had three extra nipples on my right breast.
When people asked me how I was doing, I wouldn’t pull my punches but I wouldn’t go in to great detail either. If it was a bad day, I might say (misquoting Lucinda Williams) “I feel like I got shot but didn’t fall down.” Not a full blow by blow of how much I threw up or that the chemo made my pee blood-red. I wouldn’t complain about my hemorrhoids or mouth sores. But if I was feeling particularly good, I might say I was up for dinner out and who’s buying?
That last question is, of course, an example of playing the Cancer Card. There is a time and place for this. Moderation is the key here as well. When you get that huge cell phone bill after you get out of the hospital for the first time, tell the customer service representative at Sprint or AT&T or Verizon or whoever your cell phone provider how young you are, that you’ve just been diagnosed with cancer and about all the calls you had to make and take to tell people about your illness as well as having to take care of the business of cancer by dealing with endless insurance company pre-authorizations and clearances. I played the Cancer Card in that exact situation and got my cell phone bill cut in half.
I also played the Cancer Card on a flight back from London six months after I’d completed treatment. My GI system had been considerably affected by the pelvic radiation I received and I needed an aisle seat to have easy access to the bathroom. Though I had requested and been assigned aisle seats for the outbound and return flights, on the way home I was reassigned to a middle seat.
I quietly pulled aside a flight attendant and explained that I had just finished cancer treatment and why I needed an aisle seat. She told me she’d see what she could do but to keep it on the down low. Coach was sold out but there was an aisle seat in Business Class, which she snuck me in to with the understanding that I wouldn’t say anything about the upgrade to the other passengers. My lips were sealed. Thanks, British Airways!
Don’t use the Cancer Card for frequent or petty things. You’ll become the boy or girl who cried cancer and lose your privileges. (I don’t mean some official will come and take your Cancer Card away, just that it will lose its power and you will start to piss people off.) Wield your power with wisdom.
Remember that cancer will change some things, but not everything. It’s unlikely to change your intrinsic personality, though your outlook on life will probably evolve. Be true to yourself. Be kind to yourself. Take a gentle approach. And remember that you are still you.
A New York-based writer, Su Ciampa has written about everything from losing her virginity by way of an unconventional medical procedure for Jane to turning the World Trade Center site into a buffalo paddock for Salon.com. Su has also written essays about arts and culture for ARTNews, Budget Living, Bust, Edible Brooklyn, Seventeen, and Time Out New York, as well as Nerve.com. She recently completed work on No Clowns Please, a memoir about being an adult patient in a pediatric ward.