“How was I supposed to know?” “So, what choices do I have?” “What do you mean, I can’t do that?” “Why can’t I go on the class trip this week and get chemo next week?” Ever asked questions like these? Or wondered how to get your point of view to count? Have you ever wanted to talk with the doctor alone, – just to see how things are really going? My Own DecisionsSound familiar? Most teens like you want to have a voice in what happens with their care but often feel they have no spokesperson. Well, this may seem obvious, but the person who speaks best for you is you. Think about it. Who knows what you want better than you do? Be honest. If your mother decided everything about your clothes, how long would it take for you to get really irritated? If your father set down all the rules about chores, dating, curfew, sports, and using the car, how long would it take to get very ticked? If your brother or sister or cousin decided where to go on vacation, how delighted would you be? In your family, some things may not be negotiable (like being able to stay out all night, perhaps) but other things can be worked out (like having your curfew extended for a special occasion). Same with cancer. Unfortunately, there are some things that your doctor is going to tell you that you HAVE to do to get better. That’s the bad part. The good part is that sometimes you can help decide when or where those things are going to happen. Maybe treatments can be delayed a day or a week so you can go on that class trip. Maybe you really can go to college in another state because you can see a great oncologist right there. Maybe you don’t have to take the really bad tasting liquid medicine because they just came out with a tasteless pill. Maybe a port would be better than a Broviac or Hickman. There are a lot of “maybes” in cancer treatment. Sometimes things can work out much better than you think, but they’ll never happen unless you ask. And, the best person to ask – because that person knows best what you want – is you. My Own DecisionsBeing assertive means being bold and confident. Being an advocate means being someone who argues for a particular cause or proposal usually on behalf of someone else. Being an assertive advocate for yourself means arguing boldly and confidently for your own cause. So, how do you argue for you own cause? How do you make yourself clear? How do you get an adult’s attention? Who is the right person to hear your questions, worries, requests? The answer, of course, depends on what you want to know or make a pitch for. Usually, there is more than one person who might be able to help you out. Your doctor, your nurse, and your parents are all important decision-makers. Your doctor is probably the best person to give you information and to decide which medications and other treatments are best for your type of cancer. You might be hesitant to talk with your doctors because they always seem to be busy. Well, they look busy because — they are. However, they can always make time to talk, if you let them know that’s what you want them to do. They like lists of questions. If you make one, they’re usually good about trying to answer your questions, right then and there, if they can. Sometimes they have to think about the answers, particularly if you’re asking to do something special or different from what is usually done. They may need time to decide if what you’re asking for is safe. Sometimes they have to say “no”. But most times, by being an assertive advocate, you can “negotiate” or come to a compromise, even if the doctor’s first reaction was to say “no”. Nurses are important people to go to when you have questions about your treatment or want to make some small changes. Like when you take your meds or what day to receive treatments. Sometimes nurses have to check with the doctor, but many times they can make changes themselves. Remember that the doctors and nurses act as a team. If you have a really big request, you might bounce your idea off the nurses to see if they think the doctors will go for your plan. They might even suggest some good arguments to use if they think the plan might be doable, but is way off the wall. Your parents want you to get better and don’t want to do anything that might jeopardize your health. Sometimes they have very good reasons, based on their own past experiences, for wanting you to do things a certain way. But they may or may not know just how flexible — or not –a particular protocol is. You might want to ask about a change together with them. The earlier you start asking questions and giving your ideas, the more everyone will just expect you to be a part of all discussions about your care. If you didn’t know that you could do this before now, remember – it’s never too late to start. If you’ve been an assertive advocate, tell us how you did it.
- Did it help to write down questions?
- Was it easier to talk to the doctors or nurses?
- How did you choose the best person to talk to?
- How did you get your parents to see your point of view?
- When you were disappointed, or had to compromise, what did you learn?
- Did you do things differently the next time with more success?
You can submit your thoughts and ideas to our TLC editor. Your experiences may be helpful to other kids – and doctors! Thanks for sharing!