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Awesome: 'Hospitals and Long Term Treatment: Chronic illness thread for the r...' by Stale

StaleStale Registered User regular
There is this collective image of what cancer treatment is, what it does, and what the result is. It's all bullshit.

Commonly held belief/myth 1: You lose all your hair.

You don't, at least not with all treatments. It can however, discolor, thin, or become brittle. And in some cases, most commonly with radiation, fall out, prompting the patient to shave the remaining just so you don't look ridiculous. Personally I hoped mine would, I already shave my head, and frankly I could stand to have less hair on my shoulders and back. No such luck, mine only thinned meaning that I give myself a regular close trimming of my facial hair and even out my chest hair. I let my arms thin naturally, and you'd never even know I was in treatment.

Commonly held belief/myth 2: You are puking all the time.

Not always, and especially with the advances in anti-nausea medicine in the past few years. I currently take 2 medications with my infusions that, for the most part, keep me pretty functional. I still get sick, I still throw up spontaneously, and I am still more fatigued than any one person should ever be. But it's a far cry better than it was even 10 years ago, and magnitudes better than it was in my youth.

Commonly held belief/myth 3: You have to stay in the hospital.

Bullshit. Pure and simple. Everyone is different, everyone reacts differently. Plenty of people go on with their daily lives during treatment, especially with a good oncologist and care team. I've spent most of the past year in treatment, and I think I've been out of work for a grand total of 5 days. 3 of those I was in the hospital. This isn't to say that everyone can, sometimes, especially with radiation treatment, it just isn't feasible.

Commonly held belief/myth 4: Cancer treatment is medicine.

It isn't. Modern medicine has no real strategy for cancer. The only way, and I do mean The Only WAY they "treat" patients is to slowly kill them. They enter the patient in a race with the cancer, first to die loses. Every infusion is a roll of the dice, and everyone who walks into that clinic and sits in those fucking chairs is gambling with their lives. Chemo and radiation are nothing more than poison. The doctors are just there to make sure you don't die too quickly. If that happens they don't get paid as much. Otherwise it's completely up to you, and chance.

Here's a few things they don't put in the "So You Want To Die of Cancer?" brochure:

All your joints inflame and every movement hurts. This is difficult to explain to people as they imagine something like a sprained ankle. No. EVERY joint. So a sprained ankle, and toes, and foot, and knee, and hip, and.... you get the point. It's still a difficult thing for most people to fathom, and honestly Thank God for that. I wouldn't wish this on anyone.

Your bones ache. They ache from the marrow to the skin. It's a deep cold ache. It is the kind of thing that drains energy and sanity. I am not even remotely ashamed to admit that this more than anything else has driven me to very dark thoughts of simply ending it all. It's a feeling that you don't ever forget.

You can lose your sense of smell and taste. Chemo does weird shit to your body, and this is one of the more cruel. Everything takes on the taste of ash. Even things you know you hate, or things you know you love. The worst part? You can remember what they should taste like, but they won't. This is driving me to still season all my stocks and broths. I can't tell the difference, but I'm trying to force my body to work by sheer willpower. It is not working so far.

You learn a new definition of "exhaustion". People like to kid about being "too tired to sleep", but that is a very real thing. You lay there so sick, and so exhausted all you can do is cry, and still sleep won't come. I have spent many nights over the past year weeping in pain and exhaustion. Not ashamed one bit.

You will not come out of chemo the same as when you went in. It fundamentally breaks you down before you can build yourself back up. Very, very few people ever regain full health again, it's possible, but it is the exception, not the rule. It takes a huge toll on your systems, and if the cancer doesn't shorten your life, the treatment will.

I think the one thing that is so hard for most people to understand about cancer is that this is not something you can beat. You don't just finish treatment and SHAZAM, you're cancer-free. You simply delay it. Once you're done they give you "the number", this is your odds. The odds you will survive the next 5-10-20-n years. But you can't beat it, not totally, it's always with you. All of us have cancer to one degree or another, it's just a matter of whether or not it's actively killing you.

So if you have a 40% survival number for 10 years, it means that the odds are 60% you'll relapse and probably die. That's actually pretty good believe it or not. XKCD did a comic about this with a nice little infographic that was suitably depressing.

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