Reading matters! It matters a whole lot to me and as a former library director, I had a newsletter called “Reading Matters”! Read important documents, great novels, and non-fiction that impassions you. Speak your language(s) ardently and with effervescence. Compose silly soliloquies, sing a pretty ditty, and be sure to take time to rhyme with that four-year old in your life!
Cancer patients and caregivers have a lot of serious information in our day, in our lives. Reading about the clinical trial that you may be eligible for, signing off on radiation side effects (with no idea what this means for you), filling out medical forms, and searching online for information about your cancer diagnosis…
Uh-oh, online research can be a killer, in itself. Wondering what the life expectancy is for Stage III melanoma? Or who is most likely to get this deadly skin cancer? Or information about how other patients are adjusting to life with cancer? What about the details about the drug that is being suggested? And who is this doctor, anyway?
Let’s face it! There’s a lot of digital misinformation. We’ve all learned how to ignore, choose, and create online data. What’s real? What’s not? Often information is gleaned from different sites and snowballs, taking on a life of its own, albeit false. Finding real data is tricky when oft times there is no verification. Don’t we already have enough mortality concerns, without drowning in medical untruths?
The Real Deal
Get back to the basics and be wary of just googling your health concerns. Go for the legitimate, avoid the questionable. Here are a few cancer resources that I find useful and why:
American Cancer Society – basic cancer information and resources
Dana-Farber Cancer Institute – my hospital and melanoma team
Mayo Clinic – a good overall health site for answering health questions or looking up symptoms
National Cancer Institute – a department of U.S. Health and Human services, there’s a lot of data and resources here
Skin Cancer Foundation – international organization seeking to educate and prevent skin cancers
U.S. Food and Drug Administration (FDA) – useful resources and up to the minute data for health, nutrition, medication, and regulation
Obviously, each of us need to find the online data that best represents our cancer diagnosis. Ask your professionals what they recommend as you learn about your disease.
Screen Shot…or Is It Shot Screen?
So yeah, connect those dots using valid information. Seek information integrity and beware of the less scrupulous websites. Just a few more thoughts about seeking medical information:
- Ask your oncologist and medical team-they’re the experts
- Step away from the screen
- Don’t believe everything you read
- Use sources that you know to be reputable such as Mayo Clinic
- Online information is general information and may not pertain to you
- Step away from the screen
- Learn how to use your medical facility’s website and individual patient information platform
- If something you read concerns you, write it down and ask your medical professional
- Uncertainty with validity of information is counter productive
- Did I mention step away from the screen?!!!
Be sensible. Use your digital time wisely. Look up metastatic for the umpteenth time if you still find it hard to believe that this is part of your diagnosis. Then, remember that your medical team knows you and your cancer diagnosis. Reading matters but so does living your life. Close out the screen, breathe, and enjoy the view. #melanoma #melanomatheskinwerein #cancer
We can-cer vive!