Day 25 – LUNG CANCER ADVICE: “Seeking Trusted Information Sources” and “Advice From Well-Meaning Friends”
How do I know if I should trust this information?
You are likely feeling bombarded with medical advice about your lung cancer right now. I’m sure you’ve seen the commercial about the happy family whose grandpa is living longer because of the great new drug the company is offering. You’ve researched webMD and wikipedia to help confirm that your symptoms are ‘normal’ and that your doctor has you on the right treatment plan. You’ve found a podcast created by the patient who was diagnosed 14 years ago who decided to go to Mexico for treatment and now swears that almonds prevent cancer. WHAT INFORMATION WILL YOU TRUST, and WHY?
Studies such as this JMIR report suggest that “website design, clear layout, interactive features, and the authority of the owner have a positive effect on trust or credibility, whereas advertising has a negative effect. With regard to content features, authority of the author, ease of use, and content have a positive effect on trust or credibility formation. Demographic factors influencing trust formation are age, gender, and perceived health status.”
Does our susceptibility to trust a source as ‘credible’ vary by repetition, delivery and perceived ‘authority’? Does this trust (or mistrust) direct the way that you seek information and make subsequent decisions for your care? If so, what questions might you ask differently to help sort through the vast ocean of information available to find the best course of care for yourself?
Advice from Well-Meaning Friends:
Your cancer diagnosis may stir a variety of emotions in your family, friends and coworkers. Giving you advice might be one way they feel they can help you…
Your boss might send a vegetarian recipe which he is sure cured his ailing grandmother with “the exact same disease”, your friend from high school may send links to harrolded stories about the latest “plant medicine”-laced edibles sure to cure your cancer, and your mom might send ‘healing stones” for you to caress to take away your worries. The check-out clerk at your favorite grocery store recommends the latest vitamin she heard about, your pastor wants to organize a fundraiser for you, and your neighbor wants to clean out your pantry and replace every item with “cancer-curing” foods which you are sure will taste like cardboard. Your cousin send a text saying “you’ve gotta read this 400 page book about how peanut butter and nutmeg can cure your cancer!”
As if your diagnosis and treatment plan weren’t already feeling overwhelming enough, sorting through varied, questionable, only sometimes pertinent, and often unsolicited advice can feel daunting. Identifying YOUR goals and needs is important, yet is it now your role to discern and calm your friends’ fears, concerns, sympathies, guilt or regret? You know that they mean well. How can you BOTH get what you need?
- How you can help your friends: Know that YOU are in control of how much you say, to whom, and at what point. Speak openly about what, specifically, will be of help to you, IF you can identify it. Be honest about your needs and emotions with those you trust. Politely and firmly outline your wishes about unsolicited advice. You do not have an obligation to comfort your friends and family, yet knowing that they care and are trying to help in the ways they know how can help soften communication and relationships, however. And no, you will not be failing yourself or your loved one if you can’t read up on the latest 400 page article offered about the latest peanut-butter-and-nutmeg-cure; you are doing all you can to survive and thrive with the time, energy and sources as you see fit at the time. You do you, and have informed and well-placed confidence in yourself, your team, your trusted advisors and your decisions along the way.
- How your friends can help you: Your loved one with lung cancer may not be able to identify his or her needs. Very specific offers to pick up items on her grocery list, vacuum every Tuesday, take her daughter to ballet, driving her to chemo, fold laundry or walk her dog might be appreciated. Explore the city on a drive together, and stop for an ice cream cone at the place you loved when you were kids. Foster her independence ~ allowing her to pull up her own socks instead of doing it more quickly for her, encouraging her to walk at her own pace and to retrieving her own blanket from the closet not only can help her maintain mobility but will help her remain in control of some of her choices. Offer to be there for her family members – take a meal so her husband won’t need to cook after picking up an overtime shift, or support her son at his chess match. Send a card or call to ask if it’s a good day to swing by after work to share a hug, and respect her answer. Text again another day to let her know you still care, and be ready to follow up if she can identify a need that day. Know that sometimes a smile and a hug can improve an entire day, and sometimes she might prefer to be alone in her thoughts. Make the time to listen; truly listen as she shares her thoughts, fears, stories and feelings. Help her laugh! Though you have very real fears, sorrows and needs, in many ways this isn’t about you; it’s about her. She may feel that many things in her world are outside of her control; how might you help her feel in control of a certain choice? Work to remove your guilt or expectations, and BE with your friend in the ways that she needs you. I’d venture a bet that neither of you will look back and regret those moments.
Last, and on a very personal note, I came across this lovely story by Paula Stephans in December 2018, about 6 months after our daughter’s death. It is so hard to articulate what exactly we desire as we experience the throws of grief. This is a lovely expression of just some of the emotions and needs some parents (and I’d venture to say spouses, siblings, grandparents, children!) might experience, and how you might be able to help them. 🙂
RESOURCES: https://www.jmir.org/2017/6/e218/#Body,
https://patientengagementhit.com/news/what-drives-patient-trust-in-online-medical-info-sources, and
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