Ross's Tips:
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MAKING LIFE WITH CANCER EASIER TO
SWALLOW |
My name is Ross Romenesko and I have Burkitt's lymphoma. Since I've been sick
I've figured out some ways to make life with cancer easier to swallow
(see tip #10). I hope that these tips help
you too!!
 Have a nurse come to your school and explain cancer and chemotherapy to your
class.
- Go to "rec" in the hospital as often as possible. My favorite games
are Nintendo, Skip-bo, Uno, Hero Quest and Sequence.
- Bring your special blanket into the gallium scan,
MRI, and CAT scan. It
will keep you warm and help you to keep still. I fell asleep during my MRI.
- Keep
a sense of
humor. When my
hair grows back I'm having "Why me?" shaved into the back of my head!
- Go to the hospital school! The teachers are really nice and help you keep up
with your classes. Best of all is recess (playing Lemmings on the computer).
- Don't trip on the concrete when you only
have 19,000 platelets!
- Read lots of books (or better yet have your parents read to you). I especially
enjoy Roald Dahl. Matilda, Charlie and the Chocolate Factory and The
BFG are some suggestions.
- If you're thirsty in the middle of the
night, use some IV tubing as a straw in a glass of ice water so you don't have
to sit up to drink. Attach the tubing to your pillowcase with a big paper clip.
It works great.
- Write a "newsletter" on the computer to explain how you got sick and
what your treatment will be. Enclose it in your thank you notes so your mom only
needs to write a short thank you for you to sign.
- Learn how to swallow pills. First of all, use a Nerd candy for practice. That
way if you're unsuccessful you can still eat the candy. It helps to drink water
from a bottle instead of a cup as it seems to make the pill go down easier.
Taking pills this way makes life with cancer easier to swallow!
- Keep a diary of the ups and downs. It's also a good way to record drugs used,
reactions and blood counts.
- Use baby oil to get EEG glue out of
your hair or off your scalp.
- Never ride in
the
car without your urinal and a bucket.
- Bring heparin and a blue cap whenever
you go in for a blood draw or transfusion at your doctor's office or another
hospital. They don't always have them.
- Use relaxation for your spinals. Thinking about breathing in and out helps keep
you still and keeps your mind off the poke. It also helps to stare into your
mom's face.
- If your hospital has Nintendo or Sega, bring your games from home (with your
name on them). A Game Genie makes it really fun to play with your friends.
- Go back to school for at least a few hours
whenever you're home. It's really fun to see your friends and helps them to
understand how you're feeling.
- Be your own activity barometer.
Nobody knows
what you're up to doing better than you do, and whenever you do feel good, have
fun!
- After swimming, swab baby oil on your
Hickman Tegaderm and let it soak for about half an hour. It makes the Tegaderm
come off much easier.
- Let your mom and
dad go for walks.
They come back less hyper.
- Eat bananas. Liquid potassium tastes terrible!
- Rinse, gargle and spit after all liquid
medicines. I like to make funny noises too.
- Get at least a 2 hour video when you're getting VP-16. They take your blood
pressure every 15 minutes so you're stuck in bed.
- Tell your mom's age
to
everyone on her birthday. It's fun! (My mom is 36.)
- Get your hair cut short before it starts falling out. Otherwise it goes up your
nose and in your mouth. I slept through my haircut!
- Don't be afraid to get your Hickman out. They give
you
Midazolam and it makes you forget all
about it.
- Take your eyedrops on schedule when you get
Ara-C.
- If you have trouble
doing a medicine (like Fluconazole with chocolate pudding) pick a mantra (a word which
represents a happy memory) and say it over and over to yourself until you're calmed down. Then do
the medicine. My
mantra was "bullfight".
- It's okay to be sad. It's okay to be
mad.
It's okay to cry.
It's okay to laugh.
- THANK GOD FOR WHITE BLOOD CELLS!!!
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