Guest post by Trisha Torrey
Every Patient’s Advocate
As a breast cancer patient, you probably feel like you spend far more time with your doctor, or being tested or treated, than anything else you do. It can be overwhelming, scary, and exhausting, and can make you feel totally out of control of your life and your health.
If that’s true for you, then it’s time to take back some of that control. Here are a few tips to help you weather your journey.
Before you go:
Prepare ahead of time. Preparation tasks will depend on what the visit is for. If you’ll be seeing your doctor, write down your questions ahead of time, then pare them down to the most important three or four. If you need a test or procedure, go online to learn about it so you know what to expect. Will you need to make a co-pay while you’re there? Have your cash or credit card ready. You might even prepare home-related needs ahead of time. For example, if you know you’ll want to lay low for the next several days, be sure your laundry is done, the pantry stocked, and a few meals are already prepared and in the freezer.
Ask yourself: What can I do before I go to make me feel well-prepared – and more in control – of the experience?
While you’re there:
Manage your own expectations to help yourself relieve some of your anxiety and stress. When you check in, ask the receptionist if appointments are running on time or behind. That knowledge by itself will help you feel more in control! From there, your constant question should be ‘what’s next?’ That helps everyone else manage your expectations.
Here are some examples: If you are deposited in the exam room, ask who you will see next (It may not be the doctor; it may be a medical assistant or a nurse.) If your provider begins to leave the room, ask “what’s next” to find out if he or she will be returning to answer more questions. If you go for treatment and aren’t sure of the routine, help relieve your own anxiety by knowing at each step what the next one will be. If you are sent for a test or procedure, then ask when the results will be delivered to you.
Consider recording any Q&A to be sure you’ll remember the answers later, too. Tell (don’t ask!) the doctor that you want to record your conversation so you can be sure to follow any instructions accurately. (Doctors call this adherence – and they like adherence!)
Important: Whenever possible, take someone with you. A second set of ears will ensure you not only get your questions answered, but that any follow up will happen the way it should. Further, having someone by your side can help prevent mistakes in identity or treatment. If you don’t have a loved one who is a skilled advocate, consider hiring a private, independent advocate to go with you. Find one at AdvoConnection.
Ask yourself: how can I manage my own expectations to make me feel more in control of the experience?
After you get home:
Track your progress by keeping a journal. If you were able to record your session, then listen to the recording and write down any important, supplemental information you’ll need. If you had an advocate with you, ask her to help you remember what you learned. Ask her also to help you with follow-up, like filling drug prescriptions or adding new appointments to your calendar. There are apps that can help you, or just write by hand in a notebook. Your choice – after all – you are in control!
Were any new drugs prescribed for you? Make sure you get your prescriptions filled in a timely manner, and adhere to your drug regimen as closely as possible. Go online to learn what to expect from your drugs: their intended use, possible side effects, and when to notify your doctor if it appears they are causing a problem for you.
Then, as time goes on, record anything that makes sense to prepare for your next appointment. Track new or unsettling symptoms or side effects including time and date, what you were doing when they appeared or any triggers you think may have caused them, any anything else you think is important.
Stay organized! It will help you feel more in control, too. Keep phone numbers, email addresses, great tips, links to good articles, or other important information in one place.
A bonus: a year or more after your treatment is complete, you’ll get a boost from reading the notes you made during this difficult time. You’ll realize how much progress you’ve made and how important taking control meant to your progress.
The more in-control you feel about your journey, the less you will feel like it controls you. You’ll help to relieve your own anxiety, stress and exhaustion. It’s not only a healthier approach, but you may find your attitudes, emotions, and outcomes improve, too.
In 2004, Trisha Torrey was diagnosed with a rare, fatal lymphoma and told she had only a few months to live. But her intuition told her there was something wrong with the diagnosis. In search of alternatives to both the diagnosis and chemo, Trisha did some homework, empowered herself, and eventually proved that in fact, she had been misdiagnosed. She had no cancer.
Based on her belief that everything happens for a reason, Trisha, a former teacher and marketing consultant, changed careers to begin teaching others to improve their chances for better medical outcomes, too.
Today Trisha is known as Every Patient’s Advocate. She is an author, a blogger, and a national speaker who teaches patients how to navigate the unwieldy and dysfunctional health care system.
In 2009, she developed an online directory of private, independent patient advocates called AdvoConnection.com. Its advocates are all members of the Alliance of Professional Health Advocates, a membership organization she founded that provides business support to independent, professional patient advocates and connects them to the patients who need their services.
Trisha is the author of five books. Her first one, for patients, is called You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Health Care You Deserve) was updated and republished in 2013. Her others are business handbooks written to help private advocates choose advocacy as a career, then start and grow their practices.
She has been quoted by the Wall Street Journal, Forbes, CNN, NPR, USA Today, Fox News, MSNBC, O Magazine, US News and World Report and other media.
Learn more about Trisha’s expertise