Ok, you've been poked, prodded, and staged. You know whether you're having radiation or chemo. Now what? Well, the info they give you in the "Chemotherapy and You" booklet (available from 1-800-4Cancer) is fabulous, so I won't try to duplicate that. (The nausea stuff they give you is great. Take anything they tell you. I haven't been sick yet.) No, this is different. This is about setting things up to make your life easy.
1) Go to Social Security and Medicaid if you are going to apply for benefits. There are lots of forms to fill out (big surprise there) and you will get tired from the chemo, so this would be a better time to do it.
2) Make a dentist appointment. You need to have a thorough cleaning and have all cavities fixed before you start chemo. Also ask for a good fluoride rinse and non-alcoholic mouthwash to use during your treatment. Your dentist may want to set you up on a cleaning schedule during your treatment to protect your teeth from the chemo as much as possible.
3) Get another blank book. This one is for your caregivers. It's for them to make notes in that will help them to take care of you better. Maybe it will say you get nauseated about 5 hours after chemo so get the warm 7-up ready, or maybe it will say "do the laundry in the basement" or whatever your caregivers find helpful. Mine have exchanged ideas on the best waiting rooms and vending machines as well as information about how I react to things. That book isn't for me it's for them, and they seem to be benefiting from it.
4) Get a book for a journal. You may not think you want one, but sometimes it is nice to have a place to vent your feelings, good and bad.
5) Go hat shopping! Something fun for once. If you are going to get a wig, do it before your hair falls out so they can match the coloring. You should get a haircut because it is less noticeable and more manageable to lose shorter hair than longer, but otherwise have fun! Try a new cut and style, buy scarves and hats that look fun! Enjoy this part of the experience as much as you can. Your hair will come back. It will be ok.
6) Set up a schedule for your treatments so there is always someone with you the day of and after your treatments. You may just need someone to help you with getting food, but that is the most important thing. You may want to get a friend to volunteer to keep track of your scheduling needs. Just be sure to be completely honest what your needs are. I have a friend come help me carry laundry to the car for the Laundromat. I can do the laundry myself, but it's too heavy for me to carry when I'm this tired. Stuff like that. Indulge yourself, you'll be back to normal soon and you'll have to do it all on your own again! =)
7) Be clear what you want and what your needs are. You are in charge. Don't let anyone bully you.
8) Set up your appointments on a day that is convenient for you. Mine are on Fridays because I have class during the week. If I wanted them on Tuesday though, that is my choice.
9) If the person who goes with you to chemo doesn't like needles take something to do or check and see if they have a TV you can watch while the IV drips (painless experience). I watch Oprah myself. Better yet, make a tape of songs that inspire you and listen to it while you take treatment or drive to and from appointments. My tape includes "Alive and Kicking" and "I'm Alive".
10) Get a heating pad. Your vein may be sore after some treatments. Applying heat will make it feel better.
11) Go out to a big meal before the treatment. If you do get sick you want to have something in your tummy, and if you don't you may have food restrictions and you'll want to enjoy a good meal before you do.
12) Remember to ask what drugs you will be given immediately and their side effects. You need to be sure what to expect as normal and what to expect as a problem.
13) Find a support group of some sort. For me, I joined the Hodgkins Mail List, but some of you may want something a little more personal. Your doctor should be able to point you to groups in your area.
14) Remember to schedule alone time. You will want it. It's great to have all the phone calls and visitors, but that can get very tiring. Remember to schedule some time to nap, read, or just think.
If there is anything else that you can suggest from experience or any questions that you may have, please pass them on!
Copyright 1996, 1997. Last updated March 23, 1996.