Many of my friends and family assume that the further away I get from the mini-mantle irradiation I received in 1992, the more I can relax about my developing any complications of that treatment. Not so.
Patients obtain medical information not only from their healthcare team but also from the Internet. Time Magazine's Bonnie Rochman discusses one potential benefit of this phenomenon in a fascinating article entitled, "When Patients Share Medical Data Online."
On January 26th I blogged about the risk of patients being accidentally injured by overdoses of therapeutic radiation therapy. I brought it up for many reasons, one of which was to lead into a post of mantras for dealing with bad news. Another was to point out that "bad" news can lead to good news.
Problems can arise when people have lengthy and passionate discussions without realizing they are talking about two (or more) different things. So to keep us all on the same page, periodically I will provide a refresher post about the basic tenets of Healthy Survivorship.
What are we talking about when we say "Healthy Survivor" or "Healthy Survivorship"?
Healthy Survivors use language that helps them get good care and live as fully as possible. In the case of challenges, it is usually better to say "very" instead of "too." For example, "This newspaper article is toovery upsetting."
What if a topic really is "too" upsetting? What's a Healthy Survivor to do?
In Sunday's NY Times cover story, "Radiation Offers Powerful New Cures, and Ways to Do Harm," Walt Bogdanich reports on the risk of patients being accidentally injured by overdoses of therapeutic radiation. Computer glitches and inadequate oversight lead to mistakes that cause patients serious harm, including death. How are you supposed to respond to such news reports in the context of Healthy Survivorship?
Imagine a 75-year-old man at a new-patient appointment with a young physician. The patient is meticulously dressed and groomed, and he walks somewhat awkwardly with a cane. His medical history is significant for a fall five months earlier that resulted in two fractures of his pelvis. The fractures are healing nicely, but he now needs help with a problem that developed as a consequence of his treatment.
Imagine being diagnosed with a life-threatening disease. Now imagine being told by consulting physicians that you should not begin any treatment yet. Instead they advise you to "watch and wait." They explain that only if your disease progresses or causes other problems should you consider starting treatment.
You've survived cancer. Now a friend develops the same type of cancer and is making horrible decisions (in your opinion). She's declining conventional therapies for a treatable cancer or deciding against telling her children she is sick. What's a good friend to do?
Soon after penicillin became commercially available (1940s), "bugs" became resistant. It was war: Researchers kept developing new antibiotics. "Bugs" kept developing adaptations to resist the antibiotics and flourish. Today's microbes are gaining the upper hand from one of the hallmarks of our modern age:
Last evening I was interviewed by Betsy de Parry on Lymphomation Live, a weekly webcast sponsored by Patients Against Lymphoma. In this show entitled "The Art of Survivorship," we discuss how knowledge, hope and action help people become Healthy Survivors. The information and advice are addressed to patients dealing with any medical challenge (not just cancer) who want to get good care and live as fully as possible.
The hour-long interview is available online by clicking here. I hope it helps. With hope, Wendy
Right or Wrong? extols the benefits of good communication between doctors and patients. But what if a patient makes the request, "Doctor, if a time comes that I'm dying, please don't tell me I'm dying."
It seems a reasonable request, if knowing "would only increase my anxiety and make it impossible for me to hope for future better days," as described in the post's comments by Bint Alshamsa.