Do y'all remember the Barney Bag? I always find myself singing that song when packing up our bag for infusion days...a.k.a. Gen Pop.
From week to week, I'm tossing in gidgets, gadgets, odds and ends...and even, occasionally, some old string.
This week, I'm working with some basics...but feel free to roll up in there with whatever you want. Seriously, take a suitcase with you. There is no such thing as "too much," if you have what you need to be comfortable on these days:
Blanket. Most hospitals will provide you with a warm blanket (maybe all, I'm saying, "most" for legal purposes, allegedly.). But to be honest? They sometimes smell kind of vinegary, might not fit you properly...and wouldn't you just rather have a cozy blanket from home that smells like your fresh, clean laundry? Also, infusion days are like, the most dressed down you'll ever see me in public. Dress in layers, hoodies, comfy shoes, etc.
Meds. Patients get some basics at time of infusion...nausea meds, maybe some steroids, maybe something to help counteract any symptoms like cramping, diarrhea, etc. But I always pack extra nausea meds, SH's daily supplements, and MY meds. Because chemo is stressful for everyone.
List of Questions/Recent Notes. So, I keep an ongoing note in my phone of questions to ask our doctors and our PAs for the infusion days that we see them. It helps me to keep my thoughts organized, support my husband, and be there in the moment without having to mentally scramble. A notebook may work better for some folks but I always have my phone on me so *shrug*. Also helps to have a list of your current meds and any refills you may need.
Lotion. SH is still dealing with neuropathy in his feet and lower legs from his first round of chemo drugs. This time, we're getting some super dry and cracking skin on his hands and feet. So, infusion days, he counts on foot massages. Stick with non-perfume stuff, for two reasons. First, perfumey stuff just serves to further irritate already angry skin. Second, you never know what could irritate or agitate anyone around you when it comes to smells. Which leads me to my next topic...
Snacks. Pack snacks. Especially with all this Covid mess, a lot of hospitals have limited cafe stuff and you can't guarantee what will be in the vending machines. Plus, I know that our infusion center will restrict DoorDash/UberEats deliveries at times. Again, stick with non-smelly stuff. Nothing hot, no popcorn or tuna fish. I like to pack some fruit, nuts or granola bars, chips or crackers, and cookies or something baked. Cover all your bases on crunchy, chewy, sweet, savory, etc. If you're trying to "be good," with your diet, let infusion days be the day that you just eat whatever the hell you want. (This isn't medical advice...so listen to your doctor if they tell you otherwise. I'm just speaking from experience and on behalf of exasperated caregivers everywhere who just DON'T KNOW WHAT TO FEED THEIR HUSBAND SOMETIMES XOXO <3) There are sometimes snacks offered (actually, the only place I have been able to find Lorna Doone shortbread is at our infusion center) but it helps to have options.
Drinks. Hospital coffee sucks and vending machines are expensive. Invest in a good size Yeti for water, one for coffee, and pack sodas or juice or whatever. Again, they will have some stuff on hand but if there's something you RELY on to get you by...green tea or Dr. Pepper or that VERY SPECIFIC brand of kombucha or whatever...bring it.
Entertainment. Books, phones, iPads, laptops, coloring books, knitting, that goat you keep meaning to milk...whatever you can think of to keep you occupied and distract you from the beeping of machines and cacophony of voices and just SOUND all around you. And chargers. Unless you bring the knitting needles or goat.
Noise Cancelling Headphones. Invest in them. Two pairs. Gen pop is noisy and I cannot emphasize that enough.
Eye mask and neck pillow. Gen Pop is bright and the chairs suck. Getchu a nap.
Tissues and Toilet Paper. We always keep a pack of tissues and a roll of Cottonelle on hand. Because insurance would cost even more if hospitals had a budget for the good stuff.
Cash Again, in case the vending machines only take cash. Or for tipping a hospital valet when you're running late and coming in hot on two wheels...again...
Patience and an Open Heart. OH SHIT. Y'all DID NOT see that one coming. Ok, but, seriously...no one wants to be in the infusion center. The patients are miserable, the caretakers feel helpless, and the nurses are a very special breed of people who are able to do this every day and keep coming back. Sometimes the pharmacy is going to be running late and sometimes the lab is backed up and sometimes this poor nurse has too many patients. Just be as chill as you can.
Also, and this is going to sound SO hippie dippy touchy feely but if you can try to do something good for someone else on infusion days, it REALLY helps change the tone of your day. Our first round of chemo those days were ALL ABOUT THE C WORD. Which is fine. We had no clue what we were doing and were literally just struggling to keep our heads above water. And we got through.
This time, our lives are less ALL ABOUT the cancer and more about doing all the good we can with the time we have. Trying to look outside of ourselves. In that spirit, we've made acquaintances with a man named Barry who camps out at the intersection of the exit for our hospital. So now, every infusion day, we take him breakfast and a tote bag of supplies (non-perishable food, snacks, gift cards/cash, Hot Hands hand warmers, Marlboro Reds. The basics.). It isn't much in the grand scheme of things but making that early-morning drive in about something other than chemo has made a big difference in how we mentally prepare ourselves for those days. We see Barry, we ask him what he needs, we give him the most recent package, find out a little more about him, then tell him we'll see him in two weeks. In a strange way, it's something to look forward to now.
Just seeing Barry though. Chemo still sucks, even if I do get to spend the whole day with SH. Would much rather us drive the hour in every other Friday to just go see Barry.
