Tips from the Trenches When Facing Chemotherapy
When Roxanne Brown was undergoing treatment for breast cancer, she often found herself wading through piles of information and endless online resources in an attempt to find answers to questions about her treatment and the related side effects. When she completed treatment, she decided to create a simple one-stop resource for other patients that would offer, in a single book, clear information about managing life after a cancer diagnosis—from tips for managing side effects, to a list of financial resources, to guidance for patients who want to know how best to communicate with their children about cancer.
The result of Roxanne’s efforts is Chemo: Secrets to Thriving, which she co-wrote with Barbara Mastej and John S. Link, MD. Here we offer a few excerpts from the book, which provides valuable insight for anyone undergoing cancer treatment.
Make a List of What Helps You Rise out of a Downer Day—and Then Do Those Things
For me the list looked like this:
- Laughter, whether through friends, entertainment, the Internet, TV, movies, books, or magazines.
- Doing something meaningful. Write or call someone you haven’t talked to for a while. Give a gesture gift to neighbors who are giving you rides or cooking you meals. Something as small as a cupcake can be meaningful.
- Getting together with friends.
- Getting outside the house, whether that meant a walk outside or a trip to the coffee shop
- Attending my support group at the Cancer Support Community.
- Attending an easy exercise class at the Cancer Support Community.
- Making my gratitude list.
Plan Ahead and Get Organized
- Record and/or take notes (or bring a friend who can do that for you) when meeting with your medical people. Why? Because it’s hard to remember what people say when you get the “C” diagnosis. Doing this prevents misunderstanding and phone calls back and forth. You may want a second and even a third opinion.
- Be discreet with whom you share the news. You may not want to be bombarded with phone calls, pitiful looks, and tales of who else had cancer and who survived and who died. If people start telling you this, you can say, “Stop, I don’t want to hear it.”
- Get a calendar. Keep track of all of your medical appointments or highlight them on your regular calendar. Why? Because when the insurance company and/or medical people ask why and when such and such procedure took place, you will know. Knowing what happened, and when, makes it easier to decipher medical bills.
- Don’t panic; don’t pay. Clarify your insurance coverage before having procedures done. Ask your insurance company to assign you a case manager so that you’ll have one person to deal with on a regular basis. Don’t panic when you get a bill, and do not pay immediately. Call the insurance company and wrangle with them about payment. Worst case—call your state insurance commissioner or contact the local media.
- Go shopping. Get the supplements and the supplies—such as wigs, calendar, and notebook—before your first chemo. Then you know you have them, which will help relieve anxiety.
- Keep a notebook or journal. Record how you feel, both physically and emotionally, once you start your first chemo cycle. This will most likely be your pattern throughout treatment. These notes will help you plan your life accordingly. For example, I was hyper and got a lot done the day before and after chemo, due to steroids. The day of chemo, I was out of it. Five days after chemo, I needed two days of rest. In between I needed a few naps during the day.
- Ask your oncologist about support groups. These exist one on one, in group settings, online, on the phone, and more. People who’ve gone through this experience can provide a wealth of information.
- Create a laughter stash made up of funny DVDs, books, CDs, and even a list of people who make you laugh. This is a great way to get away from it all and out of yourself. Laughter can be great medicine.
Ask the Right Person the Right Question at the Right Time
At one point during my treatment when I began to feel stiff, I called my medical office and asked the receptionist, “Is this normal? I feel stiff, and it doesn’t feel good, but I suppose everyone feels that way.” She answered, “A lot of people feel that way, but let me transfer you to the nurse practitioner.” I said, “No, that’s okay.” When she insisted, I once again said, “No, I’m sure it’s normal for chemo.” Then I hung up. Am I a doctor? No! That evening I experienced severe pain, yet it was completely avoidable. I should have asked the right person—in my case the nurse practitioner.
- I needed to ask the right person the right question. “This bone pain is increasing. What can I do?” The nurse had remedies for me, based on my particular medical history. Instead I wound up in severe pain, calling my doctor in the middle of the night to get his advice for my particular case. Then I got relief.
- I needed to ask the right person the right question at the right time. In my instance this should have occurred when I first began to feel weird. Relief was available. I didn’t need to suffer.
- We know when something is wrong. Listen to your inner voice. Don’t be shy. Don’t think you’re being a baby. Don’t be afraid of imposing. Don’t take the wrong person’s advice. Your medical team’s job is to help you. They want to help you. They are paid to help you. It is easier for them, for you, and for everyone if you nip things in the bud.
Women Magazine Inspired This Book!
Roxanne Brown was inspired in part to write Chemo: Secrets to Thriving after discovering a practical tip in an issue of Women. As she browsed through the magazine in her doctor’s waiting room, she read an article by a breast cancer patient who had found that placing a paper towel between her scalp and her wig provided salvation from the irritation and the perspiration that can be a challenge for patients who choose to wear wigs after experiencing treatment-related hair loss. Roxanne tried the trick herself and found it very helpful, though she noticed that very few patients she questioned had heard about the technique. The experience led her to begin compiling other similarly helpful tips, and in this way Chemo: Secrets to Thriving was born—created to offer patients simple, inexpensive advice that make a real difference to those undergoing chemotherapy.
Tip: Clarify your insurance coverage before having procedures done. Ask your insurance company to assign you a case manager so that you’ll have one person to deal with on a regular basis.