Mark is now the skinniest he’s ever been and it’s freaking me out. He’s not interested in eating or drinking and has to force himself to do both. Because of fibrosis, swallowing is difficult and because so much of his tongue has been removed, chewing is a burdensome process. He’s tired and disinterested in any sort of exercise. His cough, brought on by the paralyzed vocal cord, is as frequent and as harsh as ever.
One of the (many) problems of dealing with the psychological effects of cancer is the day to day frustration. For the patient, the frustrations are obvious and numerous. For the spouse they’re a secret constant companion. The spouse with cancer must feel free to voice their pain (both mental and physical) at any time and as often as they want. The healthy spouse listens, absorbs, consoles… and all the while he or she feels completely helpless. Because, aside from just being present, there isn’t a damn thing we can do to bring about an immediate cure. This feeling of impotence renders me more frustrated than I can even express. And that’s key too- not expressing my own frustration and rage at the unfairness of it all to Mark because HE IS THE ONE DEALING WITH CANCER. It’s all happening to HIS body, not mine. My emotions, while real and vivid and always on the surface, are not part of the bigger picture; not that they don’t matter, but they can’t matter when all of the focus is on his healing. The most important objective is keeping Mark positive. Especially right now while he is cancer-free. Giving voice to my frustrations would only serve to bring both of us down.
That being said, there is a time and place for real communication, and I realize it’s imperative for Mark to know what’s going on in my head. However it wouldn’t be good for him to know EVERY thought in my head. It would only distress and depress him. And, thank God, I am blessed enough to be able to go to therapy sessions with Rosamunde where I can yell and cry and curse if I want to. But yesterday I had a meltdown and, unfortunately, Mark got an earful as I unleashed a lot of pent-up exasperation on him.
The thing is… with Mark not getting enough calories during the day my normal frustrations are shifting into overdrive. I cannot force feed him. I can only suggest he eat so many times before I am a nag. And after too much nagging Mark has had about enough of me. “It’s hard to swallow!” he says. “It’s difficult to chew!” The message is usually loud and clear: “I know what I have to do! Leave me alone!”
In which case FINE! I’m only trying to help! Sheesh!
Maybe I give a grunt of anger. Maybe I stomp off. Maybe I decide to give up and he can just be malnourished.
Except you know how those thoughts end. There’s no way I can stand by and watch him continue to fade. I can see his spine, his shoulder blades, his clavicles… his neck is so skinny, his legs are toothpicks and when I hug him it’s like embracing a fragile child. He weighs less now than he did after chemo treatments.
So the cycle starts again and I can feel the tension building between us as I encourage him to eat, to drink Ensures, to call his swallow doctor for an appointment.
“Did you call the swallow doctor today?”
“No, I haven’t had time.”
The next day. “Did you call the swallow doctor?”
“No, not yet.”
Day after day I try not to pester or badger, just try to be helpful. But when Mark says, after I ask him to eat something, “I don’t want to. It’s hard to swallow,” and I say for the eleventh time in two weeks, “Did you call the swallow doctor?” and he says, “No,” I WANT TO SCREAM IN HIS FACE.
What is my role? How much of Mark’s health is my responsibility? What do I do when my frustrations turn to rage turn to tears turn to fear turn to self-loathing? How am I supposed to navigate “caregiving” when it seems I am a nuisance rather than a helper? Mark is perfectly self-sufficient. And he’s a grown man capable of making his own health decisions. But…
Do you see where I’m going with this?
A normal marriage is hard enough. But a marriage involving recurring cancer?
I feel like a bad guy if I vent.
I like a bad guy if I nag.
I feel like a bad guy if I sit by and do nothing.
I CANNOT WIN.
I cannot win in this weird role I’ve been handed because none of our journey ever came with an instruction manual.
When I told Mark I wanted to do a blog picture choking him, he thought it was funny and was all for it. Probably because he doesn’t think I REALLY want to choke him.
That is, until after he reads this blog. MWA-HAHA-HAHAHA!!!
Oh Chelly.. I feel every word you wrote. I get the same from Jim.
I am a nag
I am a bitch
I’m a pain in the ass
I’m not his mother
And I tell him you are correct, I’m not any of these I am your wife who loves you. We have to work as a team. So I’ll call the doctor if you don’t want to. He will then call.
I’m sorry you are both going through this.
You are a team, and it takes both of you to make it work.
Please keep writing.
Alice, I feel for you SO much! You are wonderful and Jim is LUCKY to have you. You’re right about being a team- I like that. Big hugs and lots of love coming your way. Hang in there, my friend. ❤
I love that you’re speaking from the heart. I know that many will appreciate that they are not alone. I don’t know what you are going through on a personal level, but caring for someone who is sick, is a lot. I took care of my dad when he was ill, and now my mom. I always felt/feel like it’s never enough. We do what we can. I know that we do it out of love, and that helps to get through me through it all. Much love and appreciation to you!❤️
Thank you so much for your sweet words, Martha. You are so strong and I can’t imagine all you have been through with your mom and dad. You are a blessing and your message is so inspirational. Love and hugs to you and your family… xoxoxo