Ode to the Caregivers

This is Thursday of an extra long week. I’m finally getting my radiation treatments, and that’s going well. I’m making friends with my fellow travel companions on the cancer journey; with radiation oncology, you tend to see the same people everyday, so you may as well have a party while you’re there. The doc thinks I’m going to have quite the sunburn, but the chest was already red and angry; I think there’s an improvement over no treatment.

The reason the week is extra long isn’t because of radiation, however. It’s because my caregiver -- my husband -- is taking a week to get things in order down with our RV. He was worried about leaving it alone, and he was right to do so: we ended up having to have repairs done and things that needed attention right at that moment.

But my hubby has been my constant companion since I retired. He has been right by my side. Things really stepped up when the Kadcyla made me so sick. Suddenly, I was a bit helpless, and even now, I tend toward reclusiveness. He’s doing my dishes (doc orders), cleaning a bit, and even shopping sometimes for me. On the long trips, he has to do most of the driving now; I get fatigued too fast, so three or four hours is all I can do. I sleep a lot now. (Those who know me know that this is a big thing, not being able to drive. I love to drive.)

It was tough to say goodbye. He took the train down, in order to leave me the car. It was fun sharing the trip by maps and geopositioning apps. But I miss him, and there’s just no denying that. We are cuddlers (sorry hun) and we are physically close often. I cook for him, but I have much less interest in cooking for just me. I’ve been trying to comfort myself by having the foods he’s not crazy about while he’s gone. I keep busy. I can handle this just fine. He deserves to be free of responsibility -- at least, this one -- for a time. He needs respite, too.

Our caregivers are amazing people. I am lucky to have mine, and don't I know it! But I also see the toll this whole misadventure has had on him and my daughter. It’s almost as hard to be the caregiver as it is to be the patient. Yeah, I have awful days and big problems, but he has the weight of the world on his shoulders and I can see it in his eyes. The same for the kinder, although she swears she’s fine. I still know that she’s thinking about things a woman her age shouldn’t have to contemplate.

My friends (if I may) on Imgur have had a discussion about this and it really got me thinking. Someone posted, “Be strong” to a newly minted caregiver. I know every caregiver wants to be. But I posted a somewhat contrary (though not entirely) opinion, that said, to this effect: “Nah, be you. Tell me what you’re going through. I already know anyway, and I don’t want some “positivity” barrier between us. Don’t worry about talking about death and dying; about how you hate the yucky things or how frustrated you are; you don’t have to put a happy spin on things. I’d rather share the real journey, whatever it is.”


Don’t misunderstand: I don’t think anything is to that point yet. Yes, the liver is now involved (liver biopsy next week.) As I mentioned, this is a met that can lead to...well, eventually, yes, to death. But I still think something is going to work; I know many people on my forums have liver mets and brain mets and they’re “not dead yet” as Monty Python would say. But, as some say, “sh*t’s gettin’ real.”

So every opportunity I get, I push that hubby of mine out the door. Go golfing, go to band practice, go have fun. Without me; without worrying about me. I’m fine. We’ll still have plenty to do together; there’s plenty of fun and adventure to work toward. It’s just more challenging, and you deserve a break from that.

Fellow travelers, love your caregivers today, but see if you can give them the day off. They deserve it. Caregivers, don’t treat us like china; we already know you’re suffering, too. We love you for that.

In fact, we could not love you more.