Doing my best!
Doing my best!
Can you tell by the snuggles that I'm glad you're here? I just loves the snuggles. Life is just better when you know you have other folks cheering for you to succeed.
Only 7 business days after today and I'll be done with radiation. It's doing a number on my neck; my skin is burned and peeling (I do have stuff to put on it) and it's something new to me because... I've never been sunburned - and I was told that this phase of treatment is like getting a bad sunburn. My former first poly wife used to peel something fierce when we'd vacation at the beach and she'd say that it hurt like a bitch but I never had a point of reference for it... but I do now. So much going on with my mouth and throat that I don't know if it's getting "worse" or it's starting to heal some; I've been hitting the magic mouthwash I was prescribed and it does numb my mouth for maybe a half an hour - but that's a half an hour that I can swallow without my throat hurting and it's funny: If I'm lying down, it doesn't hurt to swallow but when I'm sitting up?
The fatigue hasn't been that bad; it affects me more on the mornings where I have to get up to wake the chickens up and that makes for a long day for me. Needless to say, I want these next 7 days to pass quickly so I can start to heal and I've been told that it could take months before I'm fully recovered from all of this...
Good to read about your journey.
Please hang in there kdaddy (hugs)
Four days left after today. My neck has been badly burned so I'm not only peeling but there's an area of my throat that looks like someone tried to cut it with a dull knife; the skin is raw and cracked and very damned painful once whatever I put on it to keep it moist gets absorbed or just dries out. My throat is still very sore but now, only on the left side and I don't know what to make of that when it was a fully blown sore throat times seven and so bad that nothing they've suggested and/or have prescribed has helped; the magic mouthwash they prescribed me has lidocaine in it and it does a great job of numbing my mouth and lips... but ain't helping the sore places in my throat.
My RO gave me a tube of silver sulfadiazine cream to put on the raw, open parts and said to keep using the super steroid on the rest of my neck (and at night) and it seems to me that they can't seem to make up their minds what stuff is going to consistently work on my radiation induced sunburn, from good old Vaseline to the jar of Aquaphor they told me to get yesterday. I still have my CeraVe and Eucerin lotions that, up to this point in things, were both working well to keep my skin hydrated... and I feel like my skin is very confused at this point.
The team is already making their follow-up appointments for once I'm officially done with radiation; I was supposed to have my last chemo adjunct on Monday but a key blood value was .02 too low for me to be infused and I was told that if they infused me, it would totally wipe out my immune system and leave me wide open to only God know what; there was no make-up date scheduled so I'm officially done with that.
With my throat feeling like it's being ripped out, the wisdom of keeping my feeding tube becomes quite apparent - and my lady and I figured the team would say it has to stay before they said it has to stay; I think she gets a mad doctor kick out of pouring the nutritional stuff into the syringe, but she won't admit it. I can't wait for my last day so I can ring the bell; I can't wait for my throat to heal up enough so I can get back to eating real food - and I can't wait for my sense of taste to return so I can taste the real food I seriously want to get back to eating. It sucks being able to smell whatever my lady's is having to eat... and knowing that I can't taste it; this is similar to having a bad head cold and one that messes with your nose and, in turn, messes with your ability to taste stuff... without the bad head cold and stuffy nose.
I'm glad you're almost through with it, that's great to hear!
Lost my voice to tumor that surrounded my larynx. They took my voice and thyroid 16 years ago. With determination and damn good Dr.s you'll come through. I think I'm doing OK for being over 70. Sometimes strangers offer the best without looking for recognition. Be well.
I had much the same experience and tried like hell to avoid the feeding tube. Now I am glad I got it. As for the neck burns, you using about everything under the sun but I'd still recommend split Aloe Vera leaf rubbed directly on the burns a couple of times a day. Your sense of taste will return and pretty quickly but you may develop a taste for thing you once didn't care for. Prior to treatment I really didn't like spicy hot foods but afterward I love them. Hang tough buddy! The finish line is in sight!
You're right Neo, lost the taste for spicy foods. I think the feeding tube irritated the lining of my stomach. Still like most everything else though.
The silver sulfadiazine cream did the job they said it would and healed the skin around my neck. I rang the shit out of the bell and kept my mask, too! Four days later, I can't say that I'm feeling any better - and not that I expected to. Got tube fed last night and... threw it all up, hacking and coughing for almost an hour before things calmed down enough for me to get my ass into bed. Not long after the feeding was done, I felt a little queasy - nothing to be concerned about and the feeling didn't get worse - but I coughed and that got the vomit train off and running.
I think it's odd that my throat seems to be irritated in a very similar way to when I had my trach in; I'm coughing in a way I remember all too well when I had the trach in and I'm guessing that the radiation has burned my throat in almost the same place; I'll have to drop my RO a note on the portal to find out if I'm right or not. Otherwise, it does feel good to not have to get up and drag my ass tol radiation every day while putting up with being stuck in the back of my hand once a week although I maintain that I tolerated chemo way better than radiation...
Glad you all finished. Sounds like you've had a little set back. That's to be expected. You've had your ass kicked so hard you're in the deepest part of the ditch. Takes a while to climb back out and you'll slip a time or two. It's all good my friend.Originally Posted by KDaddy23
Last edited by DD788Snipe; Mar 3, 2024 at 8:31 PM.
You are turning the corner. I'd expect you to see much improvement in 7 to 10 days. If allowed and you can swallow, you might try small sips of cold fluids to sooth your throat. Have they done a swallowing test on your yet?
I've had several of them since I was released from the hospital and "passed" all of them. I can swallow but it can be painful from the radiation burning my throat inside and out. I got the external damage 'under control' but now it's wait and see how long it's going to take my interior throat to get to healing so I can really get to eating the way they want me to eat.
Interior healing took me about 2 months if memory serves. Before then, all nutrition and meds went down the feeding tube. By the time I was just about ready to start trying to eat again my feeding tube broke! One thing to watch out for: severe constipation related to the large intake of opioids. The first time I tried to pass stool, it was impacted and getting it out took several enemas and sticking a handful of glycerin suppositories up me. Fortunately, as a medical guy, I have dug impactions out of patients in the past. I was finally able to pass a log as big around as my forearm! That's the closest I have ever come to being self-fisted!
My personal motto is "If you can't laugh; you're dead!". Fortunately, I still can laugh about that. Stay strong and don't hesitate to reach out to me for any advice I may offer. You're getting there and the finish line is approaching!
I havent been on the site much in the last few months and am just discovering this thread. So sorry for your plight KD, but happy to see you have the upper hand and positive outcomes. Keep swinging!
Yeah, opioid constipation ain't fun and I know that I have to avoid it having had experienced it many years ago. My tube isn't broken but it's being replaced on Thursday, a bit of a surprise since we've been asking this group - since I got out of the hospital - when should I come in so they could check it and they were like, "Oh, sometime next year should be fine!" but didn't want to make an appointment when we called going into 2024. Come to find out, it should have been replaced back in February so now a rush to get it replaced.
Some people...
I did not know that was a thing
What, opioid constipation? Yeah, it is a thing and, often, it's not pretty...
Tube feeding provide little or no fiber and that, coupled with the Opioids slowing down your GI mobility, you have a serious risk of impacted feces building up. My wife has the same problem when she has to use them for her steel knee acting up.
I lucked out any had my tube in for a month or so. Went up to the VA hospital the pulled it out snd put on a clear blow out patch to monitor the healing process. As for the other stuff didn't have a problem was back on solids within a month even with no teeth. Stopped at Arby's on the way back from the tube removal and had roast beef , curly fries and a soda. My late wife looked at me and said, "Really?" I only smiled and gummed everything into mush. Stay tough brother we're on you side.
Now that's dining in style! LOL When I was recovering and prior to the extensive dental work (3 years worth!) everyone kept telling me to put my food in a blender. I love to cook and what came out of that blender was an unholy mess that may have once been food! I think that drove me forward on learning to eat again!
The oxycodone is on an as-needed basis - and I don't need it all that often so I'm not concerned with constipation; I might take 5mg once a week and if that, but my palliative doctor wanted me to have something on hand that's stronger than Tylenol for those moments when the neuropathic pain in my hands and feet becomes a bother.
Oh, I remember them telling me that I could put food in the blender and drink it and I 86'd that idea right away; I didn't doubt that it would be nourishing but I knew what it was going to look and smell like and, oh, hell, no. I'll suffer through pissing my throat off eating regular food before I go the blender route...
I'd have to be very desperate to put my food in a blender.
I know it's only been about a week. I didn't have to have my tube changed out. It sure motivated me to get some solid food down my scorched throat. Hated that thing hanging outta my belly. I think I begged my ENT OC to get it outta me about 6 weeks after my last treatment. I'm pretty sure I was eating mashed potatoes and gravy by 8 weeks and drinking Ensure.
Last edited by DD788Snipe; Mar 9, 2024 at 3:48 AM.
I'm pushing things as much as I can to get real food down the hatch and, no, I do not like the tube hanging out of me although, most of the time, I tend to forget it's there until it gets hung up in my T-shirt. Drinking Ensure, well, I'm pretty sick of drinking it... because I can't taste it and, just my luck, it irritates my throat just enough to kickstart a coughing fit - it doesn't take much. Just like everything else, I have to suck it up, hang in there, and do the best I can while waiting for things to heal...I'd have to be very desperate to put my food in a blender.
I know it's only been about a week. I didn't have to have my tube changed out. It sure motivated me to get some solid food down my scorched throat. Hated that thing hanging outta my belly. I think I begged my ENT OC to get it outta me about 6 weeks after my last treatment. I'm pretty sure I was eating mashed potatoes and gravy by 8 weeks and drinking Ensure.
Patients my friend, Patients. You will get there.
My tube used to come apart while I was sleeping and I'd wake up in a puddle of feeding solution. It was a real pain in the ass!
I never had that happen. When the gastro Dr. Installed mine he put a stitch in that kept it from coming apart. Wow that sucks. The new one should be better.
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