Excerpted from the book Bald or Shaved
by Jarrett Stein
Source: Spring 2005 CCCF Newsletter
Set goals for yourself. Each day I tried to do and accomplish more than the day before, whether it was walking down the hall, eating more protein or beating my Dad at pool. It helped me to continue to move forward when I could see the progress I was making. I also made long term goals. My major goal was being well enough to stay in the same grade as my friends, even though I missed so much school. When I knew I was working toward something, I learned to become more resilient.
Become friends with all of the medical personnel, believe in them, and know that they have your best interest at heart. I’d talk to my oncologist about baseball, my surgeon about U.S. History, my radiologist about cooking, one nurse about dogs, another nurse about stand-up comics, and my anesthesiologist about Star Wars. It felt good to laugh with them and it helped me to relax.
Be an active member of the team that is helping you to get well. Ask questions about procedures, lab results or anything else you want to know. I would even ask about what medication the nurse was adding to my IV, so I could time the dose.
Find ways to make yourself happy. Even on “bad” days, between treatments, it always made me happy to remember that I was in my own bed, rather than a hospital bed. Also, to help keep me smiling in the hospital, I always brought a picture of my dog, music to help me fall asleep, and my own pillow.
If you aren’t eating and the pills taste terrible, ask if they can be put inside an empty gel cap – they go down more easily and it masks the taste.
Realize that you have choices and that you can still make some decisions. I chose whether to be asleep or awake for some procedures, and I chose not to eat hospital food.
Stay as independent as you can. I took care of my own catheter and cooked for myself whenever I could.
I hated the smell of the hospital. To help make my room more enjoyable, I would bring extracts of smells I liked.
Something they don’t tell you before chemo, is that things you eat while you are undergoing therapy and even things you do will for some reason seem terrible after your therapy is over. My first night in the hospital I ate my favorite food—fried chicken, and I haven’t eaten it since. I also won’t eat barbeque sauce anymore. A friend lent me a Playstation 2 to distract me in the hospital and so that I could play with my brother. I haven’t been able to pick up a controller since, even now, two years after treatment (though controllers for other games are fine). So, keep that in mind.
When you are in the hospital, it is easy to get depressed and miss your home and friends. I would make specific plans about what I was going to do once I got out of the hospital, and that made it much easier.
If you are faced with what seems like an unbelievable procedure, relax and think it through. I’d say what sounded horrible about it, convince myself that if it was necessary, I’d better do it, put on my “game” face and resolve to move forward and get it done.
When you are in the hospital, try to make the best out of everything that gets thrown at you. Keep your sense of humor and stay happy; it really makes everything seem better.