Aside from a jacked up thyroid gland and a stomach that was sometimes a bit disagreeable, I was a fairly healthy individual before my desmoid tumor diagnosis in 2012. I had no clue what it was like to be seriously ill, nor how to deal the physical, emotional, and financial fallout that inevitably follows. That must have been why, when he said I’d be right as rain after my surgery, I bought my first oncologist’s spiel hook, line, and sinker. I was so naive. I really would have benefitted from some sound advice back then. I could have used an instruction manual of sorts. So, I’ve decided to create my own, in ABC order, of course, because everyone loves a gimmick.
- Accept help when you want it and you need it, and when you don’t want it and you don’t need it. Take it in the form of laughs, hugs, housework, food, booze, empathy, books, smutty gossip magazines, small gifts from gumball machines, and righteous indignation.
- Benefit from what you’re about to learn. It seems absurd that anything beneficial will happen while your ill, but there are gems hidden in that steaming turd you’ve just been served. It’s like getting to the end of a box of Lucky Charms. Just when you think there’s only oaty bits left, you come across a marshmallow piece and it’s fucking heaven.
- Commit to taking care of yourself first. For some of us this feels as natural as writing with our non-dominant hand. It’s necessary, though, and not a lesson you want to learn when it’s too late.
- Doctors that take their time to listen, that treat side effects, that see you beyond your illness, and that are willing to work with a team to create a plan of care that works best for you are out there and you deserve to be their patient. Find them. They make all the difference.
- Emotions will get the best of you at times and that’s ok. You’re human. Those that love you will understand.
- Finances are going to be an issue if you’re in the United States and not independently wealthy. Consider selling one of your kidneys unless kidney problems are the reason why you’re ill in the first place. In that case, you’re just going to have to stop buying all those damn iPhones. Or, you might want to run for Congress. I hear they have great insurance.
- Get off your ass when you can. Take a walk, soak in the sun, meet a friend for a cup of coffee, go for a drive. Do something. Shake the cobwebs loose. It helps.
- Have a laugh at the absurdity of the whole thing because, when you think about it, it is pretty damned ridiculous, isn’t it?
- Insist that you absolve yourself from all the guilt you place upon your shoulders each day. Close your eyes, take a deep breath, and remind yourself every day or every minute, if necessary, that it’s not your fault. It really isn’t.
- Joy is there. I promise. Seek it. Receive it. Spread it. Repeat.
- Kick ass. There are times when you will doubt your ability to do so, but you can and you will because you are stronger than you could ever realize.
- Love your people and let them love you. It might be the most vital lesson I’ve learned in all of this horrid mess.
- Meds can work miracles. They can also give you side effects like hot flashes, chronic diarrhea, or they can make your hair fall out. According to that one commercial I saw, they could even give you an erection that lasts for more than four hours. Thankfully, I never had to be on that one, mostly because I don’t have a penis. I’m pretty happy about that. I’m so clumsy I’d probably end up getting it stuck in my zipper or something horrific like that.
- No needs to become an unapologetic part of your vocabulary immediately.
- Onion rings. Have you tried those things? Damn, they are scrumptious little deep-fried pieces of heaven. Eat them or any other comfort food that you care to stuff in your piehole when you’re depressed and need a lift. I strongly believe in the healing properties of an occasional junk food session.
- Pleasing everyone when you’re sick just isn’t going to happen, so stop trying. And, just for you healthy people that might be reading, pleasing everyone when you’re not sick just isn’t going to happen either, so stop trying.
- Quiet your mind as best you can as often as you can.
- Robe, that thing that covers your ass. Your ass is the thing that is definitely going to be hanging out of the back of your hospital gown if you don’t pack a robe when you have to be admitted.
- Second opinions are always a good idea.
- Talk it out. Write it out. Paint it out. Express it, somehow. Whatever thoughts or feelings you’re having, you need to get them out.
- Utilize social media to connect with friends far and wide (or meet new ones) when you’re not well enough to get out. Or, use it to access cat videos, whichever one is going to make you smile.
- Vocalize your thoughts, your fears, your questions, and your concerns to your doctor. If they don’t want to listen then you need to find a new one.
- Waffles are another really great comfort food. Just wanted to let you know, in case you’re the kind of freak that doesn’t like onion rings.
- X-rays, PET scans, MRIs, and CT scans are a way of life. They don’t always have to be scary, though. For instance, I have learned that my left thigh looks like a ham from certain angles on an MRI image. I try to remember that and laugh when I’m in the tube. Helps to pass the time.
- You matter. You do.
- Zeppelins are a type of dirigible. I know it has nothing to do with being sick, but cut me some slack. There are only so many Z words in the English language.
Wonderful! R could easily be “Read something by somone going through something similar to you that is enlightening yet still refreshingly light.”
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I happen to love both onion rings and waffles!
Great post, Christine.
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My kind of gal!
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Hilarious list! I will keep a copy for myself during my treatments.
Btw, I am also very grateful I do not have a penis.
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Aren’t you, though? LOL
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Yes they’re weird. I guess my husband’s is okay but not writing home about it. 😀
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That’s a great post. I’m in for the onion rings but leaving when you ship out the waffles.
If only I had thought about the gown 5 years ago when my ass was hanging out of a blue gown lol
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So much YES to this!
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This is such a good post! I’m impressed you managed to fit in so much sense into those 26 letters…I mean apart from Z. 😉
Surely everyone likes onions and waffles…unless the reason someone is sick due to celiac disease.
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I know for a fact there are gluten free options for both those things, my husband and son are celiacs. So, no excuses!
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Yaaaaaay! So everyone can eat the onion-y waffle-y goodness!
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Great post! ❤️
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First: Bravo for pulling off the complete alphabet without straying from the topic. (I’m giving you full credit for zeppelin’s btw. because the Hindenburg was sick if anything ever was)
And I take so much of what you offered as advice that I need in my “regular” life.
“there are hidden gems in that steering turd you’ve been served”
Church
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Best alphabet ever!!!!
I’d like to add one ‘m’ to the list.
Move here – to Canada. Then you can remain financially solvent AND buy an iPhone!! 😉
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We’ve considered it many times. If this tumor comes back I may get have to!
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Ok. Well gee u should come up here anyway. Not Quebec, unless u have French cuz it helps. Toronto and Vancouver too expensive. All east coast provinces good. And prairies. Do u have a snowblower? 😂😂😂😂😂😂
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This is an amazing list Christine and like Gabe said there is so much to in health as well as in sickness!
You’re ace Hun! 😍
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Aw, shucks. Thanks, Ritu!
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😚
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