Why I Don't Want to Be Asked If I'm OK Now That I've Survived Cancer
A week ago I ended up having to get myself back to the hospital. For the third time in three months, I spiked a major fever, had chills and was in all kinds of pain. I didn’t want to go. In fact, I debated just trying to muscle through it and hope the Advil would finally start working.
But I went because I knew it was the right thing to do.
I went through the ER and put my head down with guilt as the EMTs called the code for a neutropenic alert thanks to my cancer patient status. And off I was sent to a quarantine room.
I already knew what was wrong. Even the doctors knew without anything but the blood tests: I had another major infection, and my kidneys were struggling to work because the stents were failing.
So the next day I had stent surgery, then spent two days recovering in the hospital from it as things kept going wrong, as temperatures kept spiking, as my skin was ripped off with bandaging, and everything else you could think of.
I finally got home and climbed into bed. Exhausted. Defeated. And paranoid.
I’ve been living in my bed for a week. I have no appetite from all the medicines. When I have eaten, I’ve become physical ill. I’ve drank everything I can. But mostly I lay in bed, worried about every feeling, every tinge and every pain. Is it coming back?
I’m pretty sure I can’t handle another one of these infections. Mentally I’m so broken it’s not even remotely amusing. My is PTSD so bad that I carry a thermometer around with me in the house. I even repacked my hospital bag.
I was laying in bed talking to someone on the phone about how things were, and I explained I was still recovering from the surgery and all from over the weekend.
The person’s response: “You’re OK, though?”
It bothered me. Until I realized this has become a common statement made to me the last few hospital trips.
Variations of it have included:
“Aren’t you done with all that yet?”
“You look fine though.”
“I’d never guess you were sick form how you look.”
“Well, they fixed it. Stop thinking so negatively.”
I feel like a burden and like suddenly I’m being seen as a drama queen.
I do post about my hospital visits on social media, but it’s so everyone is notified, and I do get people berating me about why I didn’t specifically tell them I’m in the hospital. It covers all my bases.
I’m not doing it because I want attention. There is no way I want people around when I’m carrying a piss bag from my catheter so I can move around. I sure as hell don’t want people seeing how badly I shake with chills. It’s all so embarrassing, and I hate it.
But I think my medical issues are becoming a burden on people and they’re really tired of hearing about it.
It makes me want to scream and yell while also wanting to go hide under a rock.
Two years ago my life was ripped apart by my cancer diagnosis, and it’s never been OK since. These last three months of kidney failure and infections have been a living nightmare I wish I could wake up from.
This is the life I am condemned to. It’s not a life of my choosing. It’s not one anyone would ever dream of.
But it’s my life. And shouldn’t I get to share my life?
Please stop asking if I’m finally OK or saying that I look fine. Stop telling me to be positive, that this won’t ever happen again, that I’ve beaten everything.
Life for a cancer survivor never goes back to normal. That was a lie someone fabricated so people can feel better when they walk away once someone is done treatment. But you’re never really OK.
Regardless of the infections, I still have issues with my teeth from all the chemo, I have all sorts of PTSD where I panic the second I go near a hospital. Depression is a constant fight and the isolation. I’m one of the unfortunate ones who has had a total loss of appetite from treatments, so I’m constantly struggling to eat again and not drop too much weight.
I go to labs, oncologists appointments, urologists appointments, nephrologists appointments, hematology appointments, stand in CVS more than I’m at home, and spend my nights recording everything happening while trying to make magic to pay off medical bills.
I will never be OK again. Please stop asking if I’m OK.
Because I just can’t put on the brave smile anymore and lie to make someone feel good and not worry.
No, I’m not OK. I’m petrified of getting sick again and going back to the hospital. I dread feeling like I’m bathing in the Antarctic ice waters when my fevers hit because that’s how it feels each and every time I get the chills. I’m not OK.
And I don’t think I’ll ever be OK.
And that’s OK. I just need to survive.
I just wish people understood more that survival isn’t just six months and then it’s done. I just wish they understood, this is forever.
Getty image by nd3000.