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[cancer] And the humiliation continues (whinge alert) - Lakeshore — LiveJournal
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Jay Lake
Date: 2011-11-10 05:43
Subject: [cancer] And the humiliation continues (whinge alert)
Security: Public
Tags:cancer, child, food, health, personal, writing
Last night I went to sleep around 8:45. Woke up around 10:30 with a series of pretty violent lower GI events that kept me out of bed for about 30 minutes. Woke up around 1:30 am ditto. And never could go back to sleep.

That marks four nights in a row that the GI has interrupted my sleep pretty consistently. And this is with me doubling up on the Lomatil per instructions from my clinic. I'm trying to shake this ragtail edge of a cold, which is pretty damned hard to do when you can't sleep or take nutrition. (I don't think I got 1,000 calories yesterday — this experience is producing a pretty deep food aversion.) I'm trying to sleep, just for the sake of my overall health, and the chemotherapy session I'm suppose to start on tomorrow. I can't even take Lorazepam to help me sleep, because the GI events are so abrupt that I'd wind up waking up in a pool of my own shit. As it is, I've had some version of that problem three times in the last three days, even when fully conscious and prepared for a 10-second bathroom sprint at any moment. I'm so worn this morning that I skipped exercising, which I never do without a damned good reason.

Thanks to the bowel control issues, I'm going to have to pick up some pads today and start wearing them. This feels like a profound abrogation of both my dignity and my adulthood. I debated even mentioning it here, but my policy on narrating my cancer experiences is to be as honest as possible. Being honest about the difficult stuff is where the most work needs to be done.

I've never in my life had this problem. I mean, the odd blowout two or three times over the years due to a critical misjudgment, or the classic gambled-and-lost fart, but not consistently. Not every day for three days. I made it through colon surgery without having to wear diapers.

I hate this disease. I hate it. I hate it. I hate it. I hate what it does to me, how it makes me feel emotionally, how it tears down the people around me, how it poisons my daughter's childhood, how it impairs my writing career. But this business with the pads? This is an exquisite, deeply personal humiliation that somehow feels worse than all the others.

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cathshaffer
User: cathshaffer
Date: 2011-11-10 13:47 (UTC)
Subject: (no subject)
My mother had this experience, too, and felt very humiliated by it. One thing that helped for her after several years of incidents, was going dairy free. It turned out that she was lactose intolerant, and dairy was aggravating her irritable bowel. I know you've already been working on diet, but I thought I would toss that out in case it might be useful. I hope this problem, er...passes...soon. :-)
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Jay Lake
User: jaylake
Date: 2011-11-10 13:51 (UTC)
Subject: (no subject)
Yeah. I'm episodically lactose-intolerant on both FOLFOX and FOLFIRI, so I mostly avoid dairy except for a little bit (normally) late in the "good" week. Ie, now. Except not now. Other than the yogurt in my BRAT(y) dietary prescription, which I've also been avoiding the last few days.

At this point, I'm pretty much down to soft white carbs. Which is how I was the last 6-8 weeks of last year's chemo.
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cathshaffer
User: cathshaffer
Date: 2011-11-10 14:03 (UTC)
Subject: (no subject)
Soft white carbs...usually I enjoy eating those, but I can definitely see where you'd crave SOMETHING else after a while, even a shot of sriracha.
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Dichroic
User: dichroic
Date: 2011-11-10 16:20 (UTC)
Subject: (no subject)
Apparently (I just learned yesterday from an article you linked) there is such a thing as lactose-free yogurt. If this is something that you already knew and that won't help, then all I can offer is much sympathy.
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adelheid_p
User: adelheid_p
Date: 2011-11-10 14:57 (UTC)
Subject: (no subject)
When you first wrote about this earlier this week, I had thought about mentioning at least using the diapers to sleep in but I didn't because I'm pretty sure you were aware that they existed. I understand that you feel humiliated by having to use them, but it is a temporary thing and not long term. I have had two colonoscopies and I did get the diapers to use for the day before prep for the second one, but miscalculated the size and they were too small for me to use. I view it more as a liberating technology and not really as a humiliation.
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W. Lotus: pink lotus
User: wlotus
Date: 2011-11-10 15:30 (UTC)
Subject: (no subject)
Keyword:pink lotus
I hate it, too, on your behalf!!!!
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zyzyly
User: zyzyly
Date: 2011-11-10 15:40 (UTC)
Subject: (no subject)
I hope you get relief from this soon!

Do you know that you can put lorazepam under your tongue and it will absorb without having to swallow it? There's even a special sublingual tablet--it's also good for nausea.
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Jay Lake
User: jaylake
Date: 2011-11-10 15:44 (UTC)
Subject: (no subject)
It's not the swallowing it that's the problem. I can take it just fine. But when I'm asleep on Lorazepam, I don't wake very easily, so the rapid, violent cramping from my GI, which gives me as little as 5-10 seconds warning that I'm going to cut loose, isn't going to push me awake in time.
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zyzyly
User: zyzyly
Date: 2011-11-10 15:48 (UTC)
Subject: (no subject)
Yes--I see what you mean now. I'm hoping the day that this is nothing more than a bad memory for you comes sooner rather than later.
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Kari Sperring
User: la_marquise_de_
Date: 2011-11-10 15:55 (UTC)
Subject: (no subject)
Nothing constructive to say, apart from fuck cancer sideways with an extra sharp brick.
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Karen
User: klwilliams
Date: 2011-11-10 16:50 (UTC)
Subject: (no subject)
Yes, I find the bowel/bladder issues the most humiliating. I have (lovely, lovely) pills that control things a lot, but for the rest of my life I'm going to have to be very careful of where I go so that there's always a bathroom nearby when I need it. I have lots and lots of sympathy. This sucks mightily.
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shelly_rae
User: shelly_rae
Date: 2011-11-10 17:53 (UTC)
Subject: (no subject)

Me too. The pills work well, except on chemo when nothing works right.

You can do this Jay. If I can, you can. You have far better reasons than I ever did. So very close. Wear the damn things at night, take the sleeping pill and let it all go.
Be well.
Anon

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When life gives you lemmings...
User: danjite
Date: 2011-11-10 18:11 (UTC)
Subject: (no subject)
Nothing to say, nothing to add, reading and not flinching, accepting your whinging as your right and unfortunate necessity.

This all sucks.

We'll be here for all of it.

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desperance
User: desperance
Date: 2011-11-11 06:09 (UTC)
Subject: (no subject)
This, yes. However close, however far away: right here.
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Eposia
User: eposia
Date: 2011-11-10 22:05 (UTC)
Subject: (no subject)
I am right there with you as my arms are too swollen to reach behind myself to wipe, so I have to get assistance with that. the only thing I'm bound (but haven;'t had a chance to get and try yet) is a set of weirdly angled tongs that supposedly give the proper angle and reach needed. But in the meantime I get the embarrassment of being at the same level as my 7 month old daughter and having other people wipe my ass.

Horrible, horrible disease.
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anghara
User: anghara
Date: 2011-11-10 22:58 (UTC)
Subject: (no subject)
I'm with many of the others on the thread - nothing much I can constructively DO other than swear at the horrible sickness that has you in its grip right now and send you good thoughts and a fervent hope that everything settles down in sufficient measure for at least a good night's sleep to take the edge off of everything that you are having to endure...
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That Which Fights Entropy: flash kitty
User: amberite
Date: 2011-11-11 10:09 (UTC)
Subject: (no subject)
Keyword:flash kitty
*hugs*

I'm sorry you're going through this, and I'm glad you're holding to your honesty, because, as you say, that is where you can do the most good. And I hope things go better for you soon.
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