For this post, we asked the Make-A-Wish Facebook community what tips they would offer someone who is starting treatment or caring for a loved one in the initial stages of chemotherapy. After scrolling through the advice, we found a couple of common themes, from dealing with nausea to communicating with doctors.
Chemotherapy Is Exhausting and Unpredictable - Rest When You Can
One of the aspects of chemo that many contributors brought up was the overwhelming exhaustion and discomfort of both the patient and their caregivers.
“When your child is sleeping, try to sleep as well (especially if inpatient and in the beginning). Nights aren’t always guaranteed to be a sleeping time. After getting chemo during the day, the night time is for sickness that comes with chemo. And those machines will continue to beep the most during the night! And keep you awake!” –Samantha W.
Find Creative Distractions from Treatment
Though there are many different medications and foods for dealing with the nausea of chemotherapy, one method that many commenters suggest is to come up with fun distractions.
“Zofran is a must but also find a distraction for them to help cope with the pain and nausea. I would write words on my son’s back and have him try to guess what I wrote. He loved it!” –Dawn S.N.
“My niece went through chemo, I think being distracted with projects helped. She worked on a dollhouse every time she went. When she finished chemo she was able to take the dollhouse home.” –Shannon B.C.
Record Important Details
To avoid confusion over the excess of medical information combined with side effects, one consistent suggestion is to utilize a journal and build a knowledge base.
“I kept a journal & wrote down all my daughters Meds & dosages & her reactions. I also wrote down her blood counts & I know when they would be dropping & going back up.” –Kristen G.C.
“My advice would be to learn everything. Learn their medications/dosages, their chemo names/protocol, do research on your own, get that second opinion, pay attention to what your nurses and doctors do to/with your child (they’re human too and this is how I caught mistakes) ... ” –Kristin H.
Speak up About Your Individual Feelings and What’s Right for You
There is a personal element to chemotherapy treatment which determines that each patient has their own individual reaction and needs. Some try to get ahead of the downsides and others simply want to be heard.
“After my daughter’s first round, she shaved her head before her hair would start falling out in clumps! It made it a lot easier! Also, some medical insurances cover cranial prosthesis (wigs)! Recommend also, reaching out to Hair Club for kids, they provide a new free fitted wig every 3 months!!” –Jeff B.
“Be your child’s advocate. Speak up! You know your child better than any doctor. You know if something isn’t right. They have only known your child a short while, and they only spend minimal time with them. If you don’t think something’s right, tell them!” –Melissa B.
Making memories even in the midst of difficult treatments can be one of the many indirect struggles of illness. Read more about the realities of the hospital and what you can do to encourage empathy in your community.
Header Image Credit: "Questioned Proposal" by Ethan Lofton is licensed under CC BY 2.0 / cropped and resized