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Jay Lake
Date: 2010-02-28 18:08
Subject: [chemo] The burning continues, much like Nero's Rome
Security: Public
Tags:books, cancer, endurance, health, personal, shellyrae, writing
My side effects have been degrading my quality of life today in some pretty significant ways. The mouth issues are now up to a continuous, low-grade burning sensation. I've developed a whopping headache. The "tennis ball" effect is back at the chest surgery site, while the chemo port is aching as well. It's a bunch of cumulative irritation and stress, all of which I can do nothing about.

And that's the frustrating part. I've learned how to manage the GI symptoms, though I don't always succeed. I know how to handle the fatigue. This stuff, though, I mostly must endure. If the mouth issues continue tomorrow, I'll call into the oncology clinic. shelly_rae says her dentist has a recommendation for easing the pain, which is also worth investigating.

Mostly, I hate this mouth stuff because it seems to get in the way of everything else.

In other news, I got in about three hours of writing today, revising Endurance, revising some short fiction, and doing some actual story marketing and send-outs for the first time since the surgery last November. Go, me! Chemo can batter me, but it cannot beat me. Or deep fry me. Or something.

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User: iontas
Date: 2010-03-01 02:18 (UTC)
Subject: (no subject)
Go you! I hope things ease up.
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Karen, aka Ana Lake, ska Aine inghean Cathal
User: summers_place
Date: 2010-03-01 03:19 (UTC)
Subject: (no subject)
For you: a *gentle hug* and a hearty "Keep on kicking ass!" Apply as needed.
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User: shaolingrrl
Date: 2010-03-01 03:41 (UTC)
Subject: (no subject)
I bet it could dip you in chocolate but it won't, because it's just that pissy.

Fuck cancer!
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Jay Lake: graffiti-smiling
User: jaylake
Date: 2010-03-01 14:26 (UTC)
Subject: (no subject)
Mmm. Dipped in chocolate...
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The Empress of Ice Cream
User: icecreamempress
Date: 2010-03-01 05:34 (UTC)
Subject: (no subject)
Something that worked for my mother-in-law when she had mouth pain from chemo was frequent swishing with a solution that was equal parts Biotene mouthwash (or another alcohol-free xylitol-based mouthwash, but Biotene is the easiest to find) and Mylanta (or another liquid antacid, but Mylanta was the easiest to find).

This was a suggestion from the truly awesome home nurse, and it really helped her; I have no idea if it would be helpful to you, but it has the advantage of being relatively easy and cheap to try.
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User: obadiah
Date: 2010-03-01 10:35 (UTC)
Subject: (no subject)
I got in about three hours of writing today, revising Endurance, revising some short fiction, and doing some actual story marketing and send-outs....

You. Are. Awesome.
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Kari Sperring
User: la_marquise_de_
Date: 2010-03-01 14:18 (UTC)
Subject: (no subject)
I am so sorry. May it pass very soon.
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User: ebonypearl
Date: 2010-03-02 01:36 (UTC)
Subject: (no subject)
The mouth stuff was pretty awful. Do call your doctor on it as soon as possible.

Back when I had cancer, these are the things I did for mucositis: rinsed with 1/2 tsp sea salt in warm sage tea, brushed teeth with cotton swabs (my gums bled easily), I couldn't floss because of the bleeding, but a waterpik did a decent job, rinsed with equal parts viscous xylocaine and Mylanta (2 teaspoons every 2-4 hours - except I turned out to be allergic to xylcaine, lidocaine, and so on), and avoided alohol anything with citric acid (lemons, tomatoes, lemon glycerin swabs..), temperature extremes, and sharp foods (chips, crusty bread, apples not cut into small pieces..). Looking back, I think the mouth stuff was the worst of chemo, although, at the time, there were other things that hurt and annoyed me more - probably because the mouth stuff was so bad and I didn't want to admit it.

Your doctor may have different suggestions, and they may have better, more modern solutions than what I had available back then.

Best of luck on coping with this. Fixing the mouth stuff, as trivial as it may seem in the Big Picture, really will make a tremendous difference.
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Jay Lake
User: jaylake
Date: 2010-03-02 01:39 (UTC)
Subject: (no subject)
You are absolutely right about the overall disruption of the mouth stuff. This bothers me more than everything else. Sigh.

Thank you for all the suggestions and advice.
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