Dr. Wendy Harpham is a doctor of internal medicine, cancer survivor, and award-winning and best-selling author of books about cancer: Healthy Survivorship, recovery and late effects, and raising children when a parent has cancer. She is also a public speaker, patient advocate, and mother of three.
Not all patients embrace the idea of patient empowerment. In particular, some patients don't want to be actively involved in their treatment decisions. Others don't want to hear lists of things they should be doing to optimize their outcome. Why?
Making the best medical decision for you is vital to Healthy Survivorship, and not only because doing so optimizes your chance of the best outcome. If you end up with a disappointing treatment result, your prior decisions affect--and may determine--your happiness.
The National Breast Cancer Foundation just published my guest post on self-advocacy, in which I explained how "The first time I heard that term in a medical context it conjured images of clench-fisted activists picketing in front of hospitals, demanding better care. Actually, self-advocacy is simply the act of representing yourself—your views, needs, desires and interests."
After someone has been through cancer treatment and recovery, a new mild symptom is no big deal, right? Well, maybe. In the next few posts, we'll explore the difficulty of reporting minor symptoms in long-term survivors (LTS) who want to be Healthy Survivors.
Melanie Di Stante shares the power of a selfie to help patients and their caregivers see their own strength, courage and accomplishments. Her essay "Selfie," published in the online magazine, PULSE, describes the experience of making a video for her local Gilda's Club.
Don't be misled by the splashy headlines about the US Preventive Services Task Force statement that there's not enough evidence to justify annual skin cancer screening by a clinician. Or by the response of the American Cancer Society (ACS), which does not recommend such screening and has in the past recommended against self-screening.
Colonoscopy naturally makes you think of all the inconvenience and yuck. Here’s the problem: If you compare the colonoscopy experience to your normal routine, you might be tempted to delay (or decline) the cancer screening test.
"Doctor, will my illness return?" If the answer is "maybe," the uncertainty can cause suffering in patients who are doing well now. Since you can't live as fully as possible (the second criteria of Healthy Survivorship) if you are overly anxious, let's talk about how to accept the uncertainty, both intellectually and emotionally.
An essential step is to get good medical care. Receiving accurate information and making wise decisions with your physicians helps calm anxiety, even if the facts are upsetting. Knowing that you are doing the best you can brings calm and confidence. After all, "best" is the best possible.
"Illness doesn't make life uncertain; it merely exposes the uncertainty of life."
"Uncertainty is unsettling."
"More than I want the comfort of certainty, I want the reality of being as healthy as possible, even if it means living with greater uncertainty."
"I can enjoy today, even when tomorrow feels uncertain."
"I will enjoy today because tomorrow is uncertain."
Pursue activities that occupy your attention.
Find some small way to celebrate today.
Get some exercise (doctor-approved).
Do something to help someone else.
Use meditation, yoga, prayer.
Talk with someone who understands and can help (e.g.,a co-survivor, support group, counselor)
If anxiety persists, notify your physicians, because your medical condition and/or medications may be causing or exacerbating anxiety. And they may be able to adjust your therapies without compromising your recovery-- and maybe even enhancing it.
Esther Levy, a mother who describes her family as “the luckiest of the unluckiest people in the world” offers an inside view of her struggle to balance hope and fear. Her story may lead to new insights about the challenge of figuring out what to hope for when the outcome you want most is not likely.
To be an exceptional responder, you must maintain hope that treatment will work for you, even if it rarely works in patients like you. My concern about success stories like mine and Ella Remmings' is that some people draw the wrong conclusion from stories of exceptional responders.
If your treatment options offer only a small chance of improvement, how do you know if you should proceed with hope of being an exceptional responder? It's a question Ella Remmings addressed in her email message mentioned in my last post.
Perhaps the greatest challenge for Healthy Survivors is deciding when it is time to let go of hope that treatment will help. "If I believed the statistics," Ella Remmings emailed me, "I would have been gone a long time ago. My chance of surviving Stage IV gallbladder cancer for five years was a whopping 5%. My oncologist said it would be more like six months. I was only 45."
Why does When Breath Becomes Air succeed where so many other books fail or, at best, only come close? Using memoir format to offer useful lessons on life, author Dr. Paul Kalanithi had the exceedingly rare combination of all the following: