Everything Changes - The Guide to Young Adult Cancer

Soon into my cancer care, I somewhat unintentionally started developing small, mundane rituals around my house.

After my first surgery, I had a daily pattern.  When I could muster up the energy, I would sit in a warm bath and listen to Patsy Cline.  The bathroom was a world away from the rest of my studio apartment where my mom and I were living side by side.  Getting into the tub felt like a vacation, and a major accomplishment.  My world had become so small, so boring, so comparatively unproductive that taking my Patsy Cline bath everyday felt like a tangible accomplishment.

I typically despise routine, schedules, and predictability.  But so many things that I could formerly count on, like having a social life, working, paying bills, were thrown out the window when I became a young adult cancer patient.   I wanted just a shred of something I knew I could count on;  I needed to become a tame control freak.

During my second treatment, I instituted four hours of alone time each day.  I sent my mom packing, unplugged the phone, powered down my computer, and sat on the couch looking out the window.  I simply stared at the bare tree branches for four hours each day.  My mom probably thought I was totally depressed.  But I just needed time to myself.  It was my anchor.  Everyone around me had places to be at certain times – work, class, dates.  I needed a schedule to my day so I wasn’t just floating through the murkiness of unmarked time.

A lot of people I interviewed in Everything Changes had ways that they needed to spend time during and after their cancer.  Greg spent long stretches of time alone just working on his boat.  HollyAnna loved to go up to the mountains, sit, and watch the water flow down stream over rocks and stones.  When Wafa’a lived with her parents, she’d retreat to her room, lit candles, listened to Nina Simone, and read Milan Kundera.

Do you have any little rituals that get you through the hard times?  Have you ever felt compulsive about them?  Do you do them even during times when you are well?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how I coped with staying sane during cancer care.

Some people feel their body doesn’t belong to them anymore during illness; it belongs to the doctors.  With cancer, I didn’t just surrender my body,  I also relinquished the privacy of my home.

During surgery and treatments, my mom traveled to San Francisco and moved into my studio apartment.  My kitchen was in a separate room and she retreated there to read, quilt, and write letters, trying to give us each a shred of privacy.  I never asked her for this seven feet of privacy.  She probably needed an escape from caregiving as much as I needed to feel like a grownup with an ounce of independence.

I’m not a clean freak.  Some days it looks like a tornado tore through my home.  But during cancer treatment, I wanted everything in its place.  I suddenly liked things tidy, wanted the floor swept, and my bed made.  I wanted control over my domain.  At 27, I was suddenly roomies with my mom who I had not lived with for 10 years. It was a tug of war.  I needed and wanted her there providing household help and emotional comfort. But I also wanted to feel like an adult with a life and a home of my own.  I wanted to cry alone sometimes and to eat cereal for dinner without being questioned.

Lots of patients in my book Everything Changes adapted to new living situations during treatment.  Some had a revolving door of friends with keys to their house dropping by to help with errands.  Others had to make a hospital room their home, and some moved in with parents or cousins.  We all found ways to stake out territory in our less than private shelter.  During my second treatment, when friends stopped by with food, I got good at telling them when I wasn’t well enough for them to stay and chat.  Dana’s mom posted a large sign on the door of her hospital room instructing nurses when they could and could not enter.  When Wafa’a moved in with her folks she lit candles and listened to Nina Simone making her bedroom a retreat from the rest of the house.

In a life or death situation it’s easy to say that all we want is to be healthy.  But I think there’s a whole lot more that we can want too.  Privacy was at the top of my list.

Did you lose your private space when you became ill?  How did you cope with it?

For more strategies on coping with cancer and privacy, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.