2 posts tagged “patient discussion”

Discussing your health condition with kids? 5 handy resources

Posted 4 months ago by

With Father’s Day coming up this weekend, parenting is on our minds. Do you talk about your health with your kids, and how do you go about it? Read on to see where to get pointers as a parent living with cancer, a mental health condition or chronic illness.

5 sites or articles to bookmark

Every situation and child is different, but the following resources may come in handy before your heart-to-heart.

  • Wonders & Worries’ Illness Discussion Tips – “Honesty is your best asset,” explains Wonders & Worries, an organization that provides support to children whose parents are facing chronic or serious illnesses. Their detailed guide recommends providing “accurate information that is appropriate for your child’s developmental level related to the illness and its treatment.” For example, say the name of your disease when talking with your child (who’s likely to overhear it eventually) and keep kids (and their school) informed about your current medical status and what it’ll mean for your routine, such as: “Nana will pick you up from school this week.”
  • Michigan Health’s “What Kids of Different Ages Understand” – This article is specifically geared toward parents with cancer, but it has some tips that can be helpful for people with various health conditions. The “Children’s perspectives” section explains what children typically understand at different ages. Babies and toddlers may not comprehend a serious illness like cancer, but can pick up on worries or sadness and changes in routine. School-age children (5-11 years) may have heard untrue information (like “cancer is contagious”) or experience “magical thinking” (e.g. – “Mom’s cancer is because of something I did.”). Tweens and teens may be tempted to turn to “Dr. Google” and get misinformation if you don’t fill them in.
  • Dana-Farber Cancer Institute’s “Talking with Children About Cancer” – This guide offers more information about sharing a cancer diagnosis with your kids. Some of the main takeaways? Take a bit of time to prepare yourself for the discussion but don’t wait too long or follow a script. It’s healthy to acknowledge your own feelings, like: “This is all new to me, too, and I feel worried and sad right now. But we will get through this together, and I will feel better sometime soon.” Also, don’t expect perfection. “There is no ‘perfect’ way to have this conversation. You may burst into tears before saying a word, or snap at your partner for telling your kids to ‘behave,’ or cringe when your son makes light of the whole conversation. Forgive quickly. This is a tough time for everyone.”
  • AACAP’s “Talking to Kids About Mental Illnesses” – The American Academy of Child and Adolescent Psychiatry says that parents (with or without mental health conditions) can help prevent stigma and stereotypes by discussing these conditions. “When explaining to a child about how a mental illness affects a person, it may be helpful to make a comparison to a physical illness. For example, many people get sick with a cold or the flu, but only a few get really sick with something serious like pneumonia. People who have a cold are usually able to do their normal activities. However, if they get pneumonia, they will have to take medicine and may have to go to the hospital. Similarly, feelings of sadness, anxiety, worry, irritability, or sleep problems are common for most people. However, when these feelings get very strong, last for a long period of time, and begin to interfere with school, work, and relationships, it may be a sign of a mental illness that requires treatment.” PsychCentral and The Mighty also have helpful ideas for informing and supporting kids.
  • PBS Parents’ Kid-Friendly Medical Dictionary – This glossary covers only some health-related lingo (mostly related to illnesses kids might encounter themselves). But it gives a sense of how to explain complex terms to curious kids. “Kids think about their bodies in very visual, literal ways. Therefore, experts recommend parents answer medical questions using age-appropriate, simple, easy-to-visualize terms. Be brief and only tell your child what she needs to know, as too much information may overwhelm her. At the same time, respect your child’s intelligence and try not to dumb ideas down. It is useful to explain both what a condition or illness is and how it’s treated.” You can also look for children’s books that can help explain cancermental health conditions, the human body and more.

On PatientsLikeMe, nearly 17,000 members include “parenting” as an interest on their profile. Join the community today to connect with fellow moms and dads, and log in to explore thousands of forum posts about parenting and topics tagged with “parenting.”

Have you talked about your diagnosis or condition with your kid(s) (or grandkids)? Any pointers or resources to add? Make a comment below or in the forum discussion!

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What’s in your “chemo bag”? Gearing up for lung cancer treatment

Posted 5 months ago by

Chemotherapy is one of the most common treatments for lung cancer, so the community on PatientsLikeMe is chatting about what’s helpful to pack in a bag for chemo appointments (join PatientsLikeMe to take part in this lung cancer forum discussion).

Everyone’s experiences, side effects and preferences are different, but here are some items that people who’ve had chemotherapy say they’ve brought with them:

  • Sweatshirt and other comfy layers, in case it’s cold in the clinic (tip: a v-neck shirt and a hoodie with a zipper can offer easier access, if you have a central line or port
  • Fuzzy socks and/or close-toed shoes
  • A favorite blanket and pillow from home — although the clinic probably has these on hand, it can be nice to have your own
  • Toothbrush and toothpaste, in case you get a bad taste in your mouth (sometimes called “metal mouth”)
  • Anti-nausea aids, like ginger candy or “pregnancy lollipops”
  • Bottled water or whatever you like to drink (some people say iced green tea settles their stomach) — to help you stay hydrated and prevent dry mouth
  • Hard candy to suck on (fruity, minty or whatever you like)
  • Snacks to graze on (some clinics provide snacks, while others just provide water and coffee)… food is fine, as long as your care team hasn’t told you to fast for some reason, such as a CT scan
  • Lip balm to prevent chapped lips and mouth sores
  • Laptop, tablet or other mobile device, complete with earbuds and some entertainment (shows, movies, music, apps, or podcasts) downloaded in advance, just in case there’s not a good Wi-Fi connection available
  • A book or magazine (some people don’t feel well while looking at screens, so it’s nice to have printed copies on hand)
  • Adult coloring books and colored pencils for relaxation/entertainment
  • A journal, to help you write out some of your feelings (bonus tip: Michigan Medicine offers free guided-imagery/meditation MP3s to help people manage the emotions that come with cancer treatment)
  • A close friend or family member — someone you feel very comfortable with (and who can drive you when you’re tired after your treatments)

Learn more from these resources:

Have any ideas to add? Or just getting started with treatment? Become a member to connect with 9,000+ people with lung cancer and talk about topics like this.

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