Not enough for a full chronicle right now, but some notes. We’ll start with an older thing that I forgot to mention way back, in the category of corporations going too far with the silly shit. After my port had been installed, mail pick-up included this stuff:
Yeah, I’m not going to become a cheerleader for your products. The most I want from your product is to no longer need it, in any way, shape, or form. I’m certainly not going to carry a card, put your little widget on my keychain, or wear a cheap bracelet. No rah! rah! here.
Side effects:
If one day you find that your fingertips feel calloused, and appear badly pruned, that’s the 5-fluouracil making your little fat pads disappear. Use a lot of good cream, which will help a bit, but not over much. The redness is cancerland normal too. They can get painful, so have a care if you can.
Okay, this next bit is sort of side effect too, I guess. If you’re an odd one like me, and end up with chemo induced constipation, old fashioned Milk of Magnesia is your friend. Your best friend. Works without inducing diarrhea, but it can take a while, especially if you end up with a blocked ostomy. Took one dose every day for 7 days with me.
In the category of things no one ever tells you about: projectile diarrhea, it’s a thing. When you have an ostomy, this can happen, and it’s a bad damn day when it happens while you’re unbagged. Happened to me right before I was going to apply a new bag. Your impulse is to jump away, stifle it, you’ll just spread the shit even further. If you have a towel to waste, you can grab one, hold it against yourself until you can get into the tub or shower, buuuuut, this happens remarkably fast, and you’ll be tempted to not believe your own eyes at just how much shit can come pouring out at a high velocity. There really isn’t any good way to prepare for such a thing, but it’s best to be aware that yes, this can happen. I can pretty much guarantee that when it does happen, you’ll be fresh out of a shower. And probably running late for an appointment.
That’s it for me today. Didn’t have chemo today, white count is too low, so I’ll be back next Wednesday for chemo, and I’ll be started on Neulasta injections to keep the cycles uninterrupted. I did get happy talk from my oncologist over being well hydrated; got the serious lecture about having no body fat at all. “If you dropped a knife on your abdomen, it would go straight through your intestines!” Good thing I’m not planning on dropping a knife on myself. Even so, the serious lecture means “stuff yourself silly” so I’m gonna go work on that.
WTF? A card, a bracelet and something to put on your keychain? I mean, it’s silly enough that they think you would want stuff with their company’s name on it, but at lest they could go for something that is not totally and completely useless. A pen, a notebook, sticky notes, a bag…? It would still be silly but at least it could be useful.
That said… do stuff yourself and I hope you can resume treatment as soon as possible. The sooner you go through it the sooner it will be over, and I can only imagine how bad you want it to be over. ♥
I’m with Nightjar.
If they sent you a jar of hand-cream, a box of wipes, a box of disposable gloves, etc. with their corporate logo, you’d probably use them.
Your description of the projectile ostomy had me imagining you flying around a room, making a thbbbbb noise like a balloon.
Marcus Ranum #3
You are a very strange person.
In a good way.
(maybe)
I love your rings.
I totally get not wanting the stupid rubber bracelet, but it is a good idea to carry the card. It identifies the type of device and whether or not it’s compatible with an auto-injector and/or MRI. Sometimes the medical people caring for you will need to know that information. (I’m glad they placed a PowerPort.) The fingertips look good. You’ve been caring for them well. I like Bag Balm (http://www.bagbalm.com/) for hand and foot care. It has a mild bacteriostatic activity due to the preservative in it. It may help reduce the redness and severity of hand foot syndrome over the long run. Twice a day on hands and feet, and as needed. Really nice heavy barrier protection.
And thanks for sharing the projectile story. That was … hrrmm … swell?
Marcus:
:snort: It was everything short of that!
Raucous Indignation:
Here’s the thing though -- when you have an ostomy, no one ever tells you about all the stuff which can happen. No one mentions the shit volcanoes or blockages or projectile diarrhea. No one tells you about stomas shrinking down and popping back out. No one tells you about all the fucking bleeding a stoma can do, or why that happens. No one ever says a damn thing, and that all goes back to the stigma, which everyone pays heed to, including medical: “oh, well, it’s not nice to talk about such things, so here’s your bag, bye.” It’s pointless to say a person can always ask questions, because they don’t know what questions to ask, and a lot of medical people are seriously uninformed about ostomies. Nurses on the surgical ward are best, but you can hardly waltz in and ask all the nurses to hang out and tell you all their ostomy stories. When you first get an ostomy, you don’t even know that fucking much.
I’m gonna tell ya all a little secret. I’m not an expert about ostomies or their care. Medicine is vast and expertise in one or two areas only goes so far. I did a twelve week surgery rotation in med school and that’s pretty much it for “formal” training. My regional medical center has a team of nurses who see new ostomy patients one on one for education. The surgeons who place them do most of the care once they are placed. Gastroenterologists in my community usually are next in line when care and support are needed. Most of my friends and relatives who have had them were reluctant to share much or accept help when I offered. Most patients also don’t share much. My mom had a colostomy for a few years. She went through much the same experience you are having, and she was nurse for more than 30 years. Her nursing experience didn’t fully prepare her, as if anything could. No stories of volcanos though. Your ostomy seems to be a bit more willful than most. Although I believe “thbbbbbb” is universal.
Raucous Indignation:
Yeah, STIGMA. Your mom wouldn’t have told you shit stories, that stuff is embarrassing. It’s embarrassing to write about it, but stigma has to be broken one way or the other. No one ever talks about ostomies.
“I respect my knives more than that. I’d never *accidentally* sully their beauty with gut contents and blood.”
BTW, I find Neulasta an amusing name for an injectable drug, since in Finnish it could mean “from needle”.
Lumipuna:
Me too. I also don’t need additional holes.
Hahahahahha, oh my. That’s fun.
My mom actually told me quite a bit and was more accepting of help from me and my siblings than I though she’d be. I think years of nursing made her less stigmatized. And also she cleaned up our poop when we were little, so there’s that too.
Neulasta is the long acting form of Neupogen. Some marketing dude probably named in that because, you know, it LASTa longer than Neupogen. Some trade names are so silly. I hope they send you home with the Onpro device so you don’t have to go back into Bismark. Common side effect is aching in the bones which can be avoided or alleviated by the use of Claritin (loratidine). Also keeps you on schedule. We use with every cycle on FOLFOX as primary prophylaxis of neotropenia.
Also, please please please PUH-leaaZZZe do not drop knives.
OMFG, when you mentioned Milk of Magnesia, I could see my granny (my dad’s mother) taking a big swig of it right out of the bottle every night before going to bed. She also had a habit of drinking a beer every night after supper because it helped her kidneys (as good an excuse as any).
Johnson catman:
:Snort: Sounds like one of my great-grans, she had the same reasoning on the beer. :D MoM was always in the houses (grandparents, both great-grands), but I’ve never once taken it, until this situation. Remarkably effective stuff.