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Making
Life with Cancer Easier to Swallow
Written by Ross Romenesko at age seven
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!!
1. Have a nurse
come to your school and explain cancer and chemotherapy to your class.
2. Go to 'rec' as often as possible. My favorite games are Nintendo,
Skip-bo, Uno, Hero Quest and Sequence.
3. 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.
4. Keep a sense of humor. When my hair grows, I'm having "Why Me?"
shaved into the back of my head! . . .
5. Go to school! The teachers are really nice and help you keep
up with your classes. Best of all is recess (playing Lemmings on the computer).
6. Don't trip on the concrete when you only have 19,000 platelets!
7. 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 Charlie and the Glass Elevator are some suggestions.
8. 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.
9. 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.
10. 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!
11. Keep a diary of the ups and downs. It's also a good way to
record drugs used, reactions and blood counts.
12. Use baby oil to get EEG glue out of your hair or off your scalp.
13. Never ride in the car without your urinal and a bucket.
14. 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.
15. Use relaxation for your spinals. Think about breathing in and
out, it helps keep you still and keeps your mind off the poke. It also
helps to stare into your mom's face.
16. If your hospital has Nintendo or Sega, bring your games from
home (with your name on them).
17. 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.
18. 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!
19. 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.
20. Let your mom and dad go for walks. They come back less hyper.
21. Eat bananas. Liquid potassium tastes terrible!
22. Rinse, gargle, and spit after all liquid medicines. I like
to make funny noises, too.
23. 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.
24. Tell your mom's age to everyone on her birthday. It's fun!
25. Get your hair cut short before it starts falling out. Otherwise
it goes up your nose and in your mouth. I slept through my hair-cut!
26. Don't be afraid to get your Hickman [or Broviac] out. They
give you Midazolam and it makes you forget all about it.
27. Take your eye drops on schedule when you get Ara-C.
28. 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."
29. It's okay to be sad. It's okay to be mad. It's okay to cry.
It's okay to laugh.
30. THANK GOD FOR WHITE BLOOD CELLS!!!
Reprinted from
the book "Kids with Courage" with permission from University of Wisconsin
Comprehensive Cancer Center, K4/666 Clinical Science Center, 600 Highland
Avenue, Madison, WI 53792. "Kids with Courage" may be obtained by calling
Wisconsin Clearinghouse at 1-200-322-1468.
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