It has been a few weeks since I have grabbed my computer and captured a few notes from the Cancer Navigator. These aren’t the earth-shattering big deal decisions that have to be made. These aren’t things that medical researchers are particularly interested in. But these little tidbits of things that made life easier (or harder) for me, might be of help to others. Feel free to add more bits of experience in the comments—perhaps you have the piece of info that someone else needs right now!
Set aside some extra money. Yes, we need to be careful with money with so many bills looming. But it is also important to occasionally treat ourselves to that bouquet, or this puzzle book, or the other piece of bling jewelry. This is especially important as a way to celebrate little moments of feeling well or to make oneself smile when feeling down. Somehow, having a little treat money makes this spending feel less thoughtless and more indulgent. (And it helps prevent the mega expensive impulse buy, as well!)
Remember that “being” IS a form of “doing.” When I am lounging and doing “nothing,” I need to take time to consider what else I am really doing. I might be resting. I might be pondering. I might be allowing myself to be loved. I might be setting an example to others who believe their value is tied to their productivity. I might be praying in whatever form that takes for me. I might be healing, in oh so many different ways!
Make yourself comfortable! Get PJs that double as hang-out clothes. Get comfy clothes that work as PJs. We have a huge benefit right now, folks! With so many changes in daily life due to this pandemic, there are more options than ever before for functional, comfortable, and CUTE clothes. (Just make sure to change clothes regularly, okay?!) Whether you are typing up notes from the Cancer Navigator or you are grieving the death of a dream or taking a nice long mental health break, there’s no need to wear anything uncomfortable ever again. When life goes back to “normal,” let’s rebel and choose to keep some of the better parts of daily life under covid… **This also applies to choosing comfort in your personal space, your calendar, and your relationships**
Where’s MY regular pattern, it always works this way, new normality of life? Please, tell me truthfully, do you REALLY know what to expect from day to day and week to week of your cycles of chemotherapy… or is that just a myth from cancer professionals? When hated foods taste yummy and beloved foods make you nauseous, does it stay that way from here forward? Or do you never know from one moment to the next what will taste good this time? When everyone says you will need a hat to keep your newly bald head warm, but you get sweaty if you wear a bed cap, are you the weird one? Or are they the unusual ones who everyone hears because they shout advice louder than others? (True confessions: I love the soft caps I’ve been given—they keep me comfortable throughout the day, keep my scalp hidden from the sun, and are a fun fashion statement. I just can’t wear them to bed!)
As I try to write notes from the Cancer Navigator, I am exhausted by all the new things I must figure out. As long as it is within doctor’s orders, it is okay to throw your arms in the air and refuse to make unnecessary decisions for a day (or two or five). For example, this week I was feeling good because I have finally figured out a pain prevention pattern that is working well for me. But then, I had bad diarrhea for a few days which I did not know how to handle. I couldn’t find clear info in any of the papers I’ve been handed over the past few months which freaked me out. So… to lessen the stress of too many unknowns leading to too many decisions to be made, I took my pain plan back to a strict schedule and dosage, as originally set by my team and I eliminated the “as needed” part of the plan. One less thing to think about and decide every 3-4 hours. That gave me emotional space to handle the decisions about GI upset and dehydration risks that were critically important for me to deal with. (Yes, I cleared this with my team—they agreed it was a reasonable change for now.)
Ask for tips to make things easier—from your nurse, from fellow patients in the waiting area, and from anyone else who might have practical experience about the cancer journey. I want my doctor to be brainy. I want him to communicate clearly. I want him to pay attention to the latest research which might benefit me. But I don’t expect him to also keep track of little things. I’ve been told to use a numbing cream on my port about 30 min before it will be used to lessen the “bite” of the needle going through the skin. A pharmacist suggested dry-mouth-mints might be helpful in addition to dry-mouth spray. I couldn’t figure out what to do with the cute little “port pillow” until on my way home from the procedure when the seat belt in the car was rubbing on the new tender area on my chest. Another tip—have duplicates of things like port-pillows so that you don’t have to remember to move it from car to car. Another patient shared that she always has the next dose of pain meds AND a snack with her—since everything always seems to run longer than expected. And after much searching online, I finally found some suggestions for shaving my head when clumps began to fall out. A hairdresser suggested that using a #2 blade ( ¼” ) would give me emotional time to get used to the change and give my scalp time to adjust to the different physical sensation of having little hair.
Since I am an active cancer patient yet again, I decided to add a “health adventures” tab to my website. You can follow my current cancer journey in a couple of ways:
- click HERE to see frequent mini updates plus links to the pages below.
- click HERE to see a compilation of all the mini updates archived in one place: and
- click HERE to see photos and read blog stories about the ups and downs of this stressful journey plus posts from past health challenges.
- Feel free to poke around the site and check out other Big Epic Adventures I have documented in the past—backpacking and other outdoor fun, becoming a certified Nature and Forest Guide, trip reports, and other daily activities.
If you hate to miss the latest reports from my Cancer Journey, you can bookmark this intro page to read frequent mini-updates (which will not be emailed directly to you) OR you can scroll to the bottom of any page and sign up to receive an email notification whenever I make a new full-length blog post (not just an update to the intro page) which will include stories, photos, explanations, and a somewhat weekly summary of mini updates.
(THANK YOU for following with me on this cancer journey! I appreciate every comment, encouragement, prayer, good wishes, little gifties and other types of support. I can’t imagine doing this alone…)