Diaries of a First Time Caregiver: Learning About Self-Love

There’s supposed to be a cycle with chemo. Our nurses told us that after a round or two of chemo you know what to expect. Day one: stomach upset, constipation, fatigue. Day two: stomach upset, major fatigue, vomiting, ect.. After a while, you think you know what to expect and you can prepare for it.

I’m not so smug to believe that I know what to expect, ever. I don’t. So just in case, there’s always a barf bag and a CBD oil vaporizer in my purse for Joey to manage his nausea. 

I want to talk about self love. Mostly because this is something everyone wants to shake your shoulders about when you’re a caregiver. “Take care of yourself so you can take care of them.” Yeah, you should brush your teeth and get at least four hours of sleep a day (If you can) but you’ll soon discover that you’re going to need to redefine what you imagine is “self-love”. Prior to all of this “self-love” to me was not hating myself just enough to believe I deserved to be loved by someone who didn’t act like they also hated me. It was also something people hashtagged on instagram when they were drinking alone. Taking care of yourself doesn’t always mean making a one hour appointment for a massage every week. It doesn’t mean you have to go for a walk or have some sort of weekly routine. Life doesn’t always allow such luxuries and that’s ok. It’s occurred to me that self-love is something that’s going to change for me everyday. There has to be something to look forward to. There has to be one thing to make you smile, even when it seems like you can’t.

Yesterday, taking care of myself meant making sure that the man I love was as comfortable as humanly possible, after round four of chemotherapy. I made sure he was in a captain america onesie, as well-medicated as he could possibly be, with baked squash in his stomach, the fireplace on, the scents of cinnamon and cloves in the air, and friends all around (I know, sounds like Christmas…but really, it’s almost Halloween). I made sure that when he was having a panic attack that I was surrounded by the kinds of friends that wouldn’t think twice about making dinner while I dried his tears for an hour until he calmed down. And when he finally did, he slept peacefully beside us on the couch while our friends and I watched Hocus Pocus and carved pumpkins into Star War’s characters and Kanye West. Today, self-love is the simple realization that I’ve never known what to expect but I’ve always done the best that I could with what I had to work with. It’s just a pat on the back and back to work we go.

More Stories about Love in the Rare Disease Community

About Sammy Witness

Sammy is a Florida native living in Seattle with fiancé and rare pancreatic cancer patient, Joey. She is experiencing being a rare patient caregiver for the first time and wanted to document her experience after attending the Global Genes Rare Patient Advocacy Summit this past September. She works as a social media and online marketing consultant.