Updated: Feb 5, 2022
Did you know there are at least a dozen locations where you get free apps or drinks if you or a loved one flashes a port? It's basically Mardi Gras for a very specific population.
Participating partners in this program: ok, actually, none that I know of.
Although I do still feel STRONGLY that there should be a cocktail hour in hospitals where we all agree not to talk or make eye contact. Or maybe just a bar cart that makes rounds after visiting hours are over.
And while this would be totally awesome if it were true, free drinks can only go so far. So, let's talk REAL perks here. These are your *drumroll please*
GET OUT OF JAIL FREE - YOU DON'T HAVE TO FEEL GUILTY - YOU DON'T HAVE TO MAKE EXCUSES - YOU CAN REST EASY BECAUSE YOU ARE DOING PLENTY ALREADY AND CAN'T NOBODY CAN TELL YOU NOTHIN' type P-E-R-K-S.
You are not obligated to attend any type of social function. Having cancer is exhausting. It weakens your immune system, the chemo and meds cause ridiculous and usually uncomfortable side effects, and the best part? None of this is actually predictable because all of the effects compound as treatment progresses. Whether you are the patient or the caregiver: You are busy, you are tired, you do not need to go to a four-year-old's birthday party. They do not love you as much as they love that bouncy house. People will understand and if they don't...Amazon a REALLY loud present to that birthday party.
Don't stress too much about punctuality. This is kind of hilarious because SH's family is perpetually 10-15 minutes behind schedule. So, this really works out well for us. Being late used to stress me out to no end but really, I mean, control what you can control. If my husband sleeps in by 30 minutes, it's because he needs it. He also then needs to eat something so he can take his meds. And obviously coffee. I'm not advocating for rudeness...call or text if you're going to be tardy, understand that it may shift you a little on the call list at a doctor or hospital appointment...but it's fine. Your doctor appointments are generally parties that don't start until you walk in, anyways.
You don't have to take anyone's advice. Per my above, don't be rude about it but let's be honest here...If eating more carrots or whatever it is your neighbor suggests actually cured cancer, we would have heard about it by now. (Don't "Big Pharma, Big Money" me about this. Unless your neighbor actually IS an oncologist and they have discovered that carrots cure cancer. In which case, DM me.) The fact is you and your doctors know what you're doing. As long as you are being communicative with your medical care team and they are being attentive to you and your concerns, you're probably doing the right things. Every cancer patient is a Special Snowflake. You can have the same stage of the same kind of cancer as your neighbor in the infusion center and have two completely different experiences. People will REALLY want to tell you what helped their veterinarian's front desk girl's aunt with her leukemia. Because they want to relate to you, and they want you to feel their care and desire to help. Bless their hearts for that, genuinely. But Aunt Ethel's Leek and Lentil Leukemia Cure will probably have little to no bearing on your treatment for colon cancer. Feel free to use this line, "Interesting...yeah, we feel like we've got a good treatment plan going with our team, but we'll keep that in mind. Also, I hate leeks so please never suggest that to me again."
Naps. Take them. Getting good rest can be extremely difficult when dealing with discomfort from your disease, the treatments, and the tossing/turning patient next to you. As a patient, your body is an actual battleground right now, so let it rest. Caregivers, no shame in your game either. You cannot pour from an empty bottle. Naps used to really stress me out because shouldn't I be doing something? Isn't there something to fold or vacuum or to get ahead on for next week? Probably. And for two weeks we pulled clothes out of a pile of clean laundry so large that SH had to buy a treadmill to get me to fold them. But I slept like a baby. And now we have a treadmill.
Crying. It isn't really a perk but just like...here's permission to cry and be angry and sad, on bad days and on good days because good days remind you of how shitty the bad days can be. Just have your little teary-eyed moments that you can run to the bathroom for or watch a sad movie and sob through it. I've turned into a total wuss. My family makes fun of me because I cried during live-action Mulan (In my defense, her father was very proud of her and wasn't allowed to show it and if that doesn't hit you in the feels, you're dead inside). I also cannot recommend screaming cuss words in your car enough. The point is, getting it out in small doses when you want to allows you to set your jaw, slow blink, and get shit handled when you want to fall apart.
You Aren't Obligated to be a Press Secretary. Y'all. I love this one. When SH went through his longest surgery, my sister was with me and she was responsible for handling all updates and fielding any requests for information. I just honestly could not function fully at that time and having her there was a lifesaver. On a day-to-day basis, you can call people back late, delay responses to texts, or just say you don't feel like talking. That's all ok. In our family, we have a few different group chats that allow us to update different folks at different times and that's it. Immediate family first, copy and paste to others after.
Let Others Do For You. Once there is a cancer diagnosis, almost everyone in your life is going to ask, "Do you need anything?" or "What can I do?" The instinct is ALWAYS going to be, "No, no! We're fiiiiine!" Because you were raised to be polite and independent and to not impose on people. I understand. I see you and I hear you and let me tell you, we are wrong. Just, terribly misguided little fools.
Here's the deal, y'all: Folks are going to DO for you anyways. And probably not how you would want them to unless you get REALLY SPECIFIC with them. Flash forward to a closet full of "stuff" to donate or give away from well-intentioned people that didn't know what to do because you didn't just say, "Hey, actually yeah, the next time you're at the store? Would you mind to grab some Eucerin because he's almost out and I don't know when I'm going to make it to Kroger this week." Or "You know...I don't always know what she's going to want to eat until the last minute. Could you freeze one of your awesome lasagnas for us the next time you make it?" Or you can be selfish and say, "Hey, it's been a rough week. I would love if you sent me some cookies." Or just be blunt and say, "Amazon and DoorDash gift cards."
PEOPLE WANT TO HELP YOU. DON'T LET THEM WASTE THEIR MONEY ON EUCALYPTUS SPEARMINT LOTION THAT THEIR COUSIN'S BROTHER-IN-LAW LOVED WHEN YOU CAN'T USE THAT BECAUSE YOUR SKIN IS RAW AND CRACKED AND THAT LOTION WOULD BURN LIKE A MOTHER.
THEN, WHEN THEY ASK YOU ABOUT IT LATER, YOU EITHER HAVE TO LIE, RISKING THEM BUYING MORE OF IT FOR YOU. OR YOU CAN TELL THEM THE TRUTH, MAKING THEM FEEL BAD FOR SETTING YOUR SKIN AFLAME.
*Things I would actually suggest*
Amazon gift cards, DoorDash gift cards, InstaCart gift cards, cozy blankets (large enough to cover an adult), cozy socks (preferably with those non-slip bottoms), cozy sweaters, noise-cancelling headphones (hospitals are noisy), eye masks (hospitals are bright), large tote bags for hospital days/stays, gift certificates to a spa whose staff is trained in oncological massage...I could go on. And probably will at a later time.
8. Puppies. Not that you need an excuse, but cancer is the best excuse ever to get a puppy. Especially when you're the best wife ever. Once, before SH went in for a big surgery, I was given clearance to puppy shop online and when he got out, we would get one. Luckily, I didn't find any that day that were within the greater Southeast (although my sister tried really hard to get me to go on a road trip), because we got our sweet little Honey Pup a few months later. That being said, she's a spoiled little puppy brat so this round means she is getting a baby brother to teach her some responsibility.
PS...I probably should have stated this explicitly in my inaugural post but expect a decent balance of humor here when I am talking about serious stuff. We do our best not wallow or linger in the hardships and choose to make light of everything that we can. Understand that this is how we choose to process publicly while addressing in other ways privately. If this troubles you, I'll be posting pics of my kids' lunches on Wednesday.