3 days in Radiation
Comments
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Hi, Steph don't let the girls bother you too much, they are just trying to prepare you for the worst possibilities, you may breeze through with limited problems. We don't know because everyone's treatment is a little different and everyone is different so take it one day at a time and deal with problems as they come.
As far as pain meds they always gave me liquid hydrocodone and I did a search and here is a page discussing both and their differences.
What is the difference between oxycodone and hydrocodone?
It seems it won't let me post the page link so here is a link to the search.
Hang in there you are doing good-Take care-God Bless-Russ
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Russ,
I never turned down a feeding tube. They never prescribed one. I have made the doctors aware of the issue. My RAD OC is on vacation for the holidays. I had to see a fill in doc this week, he wouldn't do a thing (until me doctor was back) My PCP literally had to call the script in. There is no one else left to do so. Around the holidays will be like this.
I know you are all gung ho, and a major advocate on feeding tubes. However, I prepared and gained weight for this. I didn't gain weight to the point of being overweight or anything. I just wasn't as slim as I was. Before I was slim enough that quickly losing 10-15 pounds could have caused some issues, but now - not so much.
This pain has escalated in a very short period of time. The last time I saw my RAD OC, I could start feeling a change in my neck. I was in no pain. Two days later the sore throat started, and I sent a message that weekend. As I said, I have made them and my PCP aware of this issue.
Many people go out of town during the holidays. Luckily my PCP is still here. They have to actually "fingerprint" these scripts when they call them in. I don't even know if my RAD OC has signal where he is right now, TBQH.
I am not getting chemo, so those are the only 2 doctors involved currently.
If my throat were to get so bad it would become swollen shut, I don't think a feeding tube would save me from suffocating to death. Food and water would be the least of my worries at that point.
I just don't understand you sometimes. When people don't have feeding tubes, you come off as if everyone turns them down and fights them. I may not want one do to some horror stories, but honestly it was never once brought up to me by any of the doctors or nurses. Perhaps they don't think it's a good idea to immediately just insert one in everyone. Many people actually can make it without and eat through the entire treatment.
Regarding the tennis ball, it was an example. I am aware it does not have to be a tennis ball.
-Steph
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Stephani, dear...,
I am 3 years out from my radiation treatments, and I hope so much this isn't the case for you----- but I have sore throat 24/ 7, yes, for the past 3-4 Years.
I kept hoping something would help it... Maybe getting rid of infections? No. Maybe the Laser Surgery to dampen down that mass by my right vocal cords? No.
Nothing has worked.
I realize that you are going to need pain meds now, while going through treatments.. I was on the PCA Morphine pump while inpatient during treatment, just to get me to keep swallowing.
But I do not take anything for my daily sore throat. Its miserable, though. If I go too long without swallowing liquids, it ( the pain) really magnifies and becomes Worse! Its at that point I have tears in my eyes, face red, my hands gripping something, to do those first swallows when I've waited to long...
My doctors have told me that its NOT going away. Its due to altered/ damaged swallowing from #1 My very large primary tumor #2. Massive surgeries #3 radiation.
Its something I live with Every Single Day.
Right now, just a dry swallow hurts like the devil...
Okay, yesterday in Anesthesia Pre Op Assessment, a PA saw me first. This appointment was well over an hour... She finally listened to my lungs. Very carefully, very intensely... She listened to the lung Bases, even the Sides of the bases. She got up, not saying a word and looking off in the distance. To try and help I asked her " They sound Coarse?"
She said, " way beyond coarse. Its a loud, harsh lung sound...and I'm going out to get the Faculty doctor"
Yeah, I knew it was bad because I myself can Hear it. My breathing, my lung sounds...
Faculty doctor came in... He told me " Pulmonary is treating you for Cystic Fibrosis". I told him I know that. The breathing machines I'm using at home, the inhaled meds, all the same as for CF.
So he listened. He said " your upper fields are not as bad as both lung Bases,.. I here Crackles and rhonchi in both bases, and harsh sounds Throughout both lungs".
I'm not clear at all. And still have infection. My inhaled antibiotic runs out next week. Then what?
He said " Its very risky but I'm going to let you have the dilation ( esophageal ). But they may end up Incubating you / on the ventilator " ... Yeah, yeah, that is fine and I signed the Release forms.
All this, Stephanie, because my Stage III cancer, recurring 5 times.. And the treatments for it damaged my swallow. I aspirate into my lungs, daily. My larynx doesn't lift up/ elevate to cover my windpipe when I swallow, so liquids very easily slip down through my trachea, to my vocal cords then into my lungs.
October pneumonia was #6 for me. I don't know how much more I will be able to take.
He told me No Gathering over the holidaydps, for me. ( in addition to all else, I was born with a Primary ( genetic) immunodeficiency)... He said it Must be MANDATORY that everyone around you, all the time Must wear a Mask, and wash hands and keep distance. Especially in home.
No worries there, because I will see my mother during the holidays. That's all.
My cousin Robin, my age, recently died from COVID. She was one of those uh... Stupid people who refused all COVID vaccines. Damn. I have 2 nephews who are the same.
I have had 2 Pfizer and the Pfizer Booster. But because of my underlying Immunodeficiency, they have huge doubts that I built any immunity. I am completely missing the antibodies responsible for building immunity. Thus, I remain at " very high risk" as the faculty doctor told me yesterday. ( I am at a School of Medicine ).
Steph, maybe your R O can give you something for the Break through pain? Or maybe just Tylenol, between times.
Best, Crystal
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Stephanie,
A temporary feeding tube is really no hardship. And its simply removed when the patient is again able to demonstrate they can eat enough to maintain their weight.
Mind was a necessity from the beginning, because my tumor quickly grew, to block my swallowing....
It allows the patient to be a little less anxious too, in the event they need it. There are survivors here who had one put in, and never had to use it, or not much.... But it was there in case.
The reason they are frequently done Ahead of the start of treatments is so #1 you won't have a potential break in the treatment schedule and #2. The person won't be feeling good snyway, and to put another procedure on top of that, might be a problem.
Lots of people are so Grateful for their feeding tube, at the time, because it does take some stress off, if getting enough in orally becomes a problem. It's just a Tool we can use to get through.
By the way, closing of the esophagus, versus closing of the Airway, are 2 totally different things. For instance, if the Esophagus closes, one can still Breathe just fine. ( mine has Closed/ Obstructed several times)
If the Airway closes, one has to have a Tracheostomy. Like Me and also Randal had to have... Those are 2 totally different functions.
Try to relax over the holiday. Crystal
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I am sorry if I came across the wrong way and was up on my soapbox again.
I was not inferring you turned one down although it came across that way.
I hope you get the care you need and cancer care can not be left go they should have coverage for you and others.
Once again Steph I sincerely apologize for my inappropriate behavior.
Also as Crystal explained about eating and breathing I could not eat but my breathing was fine.
But there was a period of time after getting radiated a while your saliva gets thick and even stringy and gives you a problem and I had such a time that even sleeping in a recliner I would wake up at night sometimes and the thick saliva was blocking my airway and had to gag an cough and work a bit to get it cleared. Not enjoyable to wake up with your air cut off.
Wishing You The Best
Take Care-God Bless-Russ
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Hi Russ,
I have re read your posts, and You have nothing to apologize for. You have said nothing untoward or wrong, so, no apology needed from you.
You are always being the helpful, knowledgable, and experienced man who provides us helpful info, humor, guidance and hope too.
Believe me when I say that I always Respect your suggestions because like mine, they come from very very hard fought learning experiences, in the harshest of ways. Its too bad we have gone through lengthy and brutal cancers over and over to be able to provide real life ( near death) wisdom which we accumulated. But, its here free for the taking.
Don't apologize. You are great just the way you are.
Crystal
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Russ,
No need to apologize. I just really need you to understand that I have not turned a feeding tube down. They never prescribed one for me. My RAD OC is out of town, and my PCP will be going out of town next to PA. It's the holidays and it will be hard to get anything done. Even if I were to ask for one.
A feeding tube was something that was just never brought up.
I just wanted you to know I wasn't fighting them on, and never did on placing one in.
-Steph
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Steph all is OK with us I hope. And I do know and realize you did not turn one down and I should not have gotten up on my feeding tube soapbox the way I did because I realize it made you feel I was chastising you for not having one when in fact my rant was not directed to you or anyone specifically but I understand it could make you feel that way.
Hopefully, we can get a new footing here and help you get through this and any little problems that come up during treatment and post-treatment. This is tough stuff and you need all the support you can get. I remember sometime after my first cancer treatment was all done and I recovered a bit out of the fog of it all and got to thinking that cancer treatment kicks your butt and that it was the hardest thing I ever went through in my life.
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Russ,
Seriously, everything is fine. I promise! Please believe me, and don't let that bother you, ok?
I will let you know what I can find out when my RAD OC is back in town and I can see him. I'm going to inquire about the feeding tube.
Aside from that, I hope everyone is having a Merry Christmas!
My dad is driving down today in his RV, staying for a couple days and then heading to Pensacola, Fl for a the remainder of the week.
All my best Christmas wishes to all!
Steph
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Hi, Steph don't let the girls bother you too much, they are just trying to prepare you for the worst possibilities, you may breeze through with limited problems. We don't know because everyone's treatment is a little different and everyone is different so take it one day at a time and deal with problems as they come.
As far as pain meds they always gave me liquid hydrocodone and I did a search and here is a page discussing both and their differences.
What is the difference between oxycodone and hydrocodone?
Hang in there you are doing good-Take care-God Bless-Russ
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Hi, Steph don't let the girls bother you too much, they are just trying to prepare you for the worst possibilities, you may breeze through with limited problems. We don't know because everyone's treatment is a little different and everyone is different so take it one day at a time and deal with problems as they come.
As far as pain meds they always gave me liquid hydrocodone and I did a search and here is a page discussing both and their differences.
What is the difference between oxycodone and hydrocodone?
Hang in there you are doing good-Take care-God Bless-Russ
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Hi, Steph don't let the girls bother you too much, they are just trying to prepare you for the worst possibilities, you may breeze through with limited problems. We don't know because everyone's treatment is a little different and everyone is different so take it one day at a time and deal with problems as they come.
As far as pain meds they always gave me liquid hydrocodone and I did a search and here is a page discussing both and their differences.
What is the difference between oxycodone and hydrocodone?
Hang in there you are doing good-Take care-God Bless-Russ
0 -
Hi, Steph don't let the girls bother you too much, they are just trying to prepare you for the worst possibilities, you may breeze through with limited problems. We don't know because everyone's treatment is a little different and everyone is different so take it one day at a time and deal with problems as they come.
As far as pain meds they always gave me liquid hydrocodone and I did a search and here is a page discussing both and their differences.
What is the difference between oxycodone and hydrocodone?
Hang in there you are doing good-Take care-God Bless-Russ
0 -
Hi, Steph don't let the girls bother you too much, they are just trying to prepare you for the worst possibilities, you may breeze through with limited problems. We don't know because everyone's treatment is a little different and everyone is different so take it one day at a time and deal with problems as they come.
As far as pain meds they always gave me liquid hydrocodone and I did a search and here is a page discussing both and their differences.
What is the difference between oxycodone and hydrocodone?
https://www.medicalnewstoday.com/articles/oxycodone-vs-hydrocodone
Hang in there you are doing good-Take care-God Bless-Russ
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Hi, Steph don't let the girls bother you too much, they are just trying to prepare you for the worst possibilities, you may breeze through with limited problems. We don't know because everyone's treatment is a little different and everyone is different so take it one day at a time and deal with problems as they come.
As far as pain meds they always gave me liquid hydrocodone and I did a search and here is a page discussing both and their differences.
What is the difference between oxycodone and hydrocodone?
https://www.medicalnewstoday.com/articles/oxycodone-vs-hydrocodone
Hang in there you are doing good-Take care-God Bless-Russ
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If I asked what the difference was, It was not intended. I really don't need to know.
I believe what's more important is the dosage, and also the fact that drugs have different effects on each individual. One person could have great results with Oxycodone for example, and no relief with liquid Morphine. While another person could be just the opposite.
I don't expect for there to be no pain at all. I just want it to be at a point where I can swallow liquids at least. Also, to not be in pain while not swallowing at all. That's really all I ask for.
I ended up taking 15mg and that seemed to work, but this is a 16 day supply, so I can't do that all of the time. I just know that worked. 16 days is a long time. Liquid Oxycodone cannot be called in again during that time frame. It would have to be something else. However, my RAD OC will be back next week (I HOPE) and perhaps he can call something else in.
I haven't really been in a very good mood today. Will be entertaining company starting Saturday. I've been cleaning since I got home from treatment. You know how that sort of thing is. If it was someone on here visiting, I would be completely fine with it. It's just different when they aren't ... I don't know.
Anyway, will catch back up when I can.
Everyone have a Merry Christmas!
Steph
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I just stopped by to read Stephs comment and noticed my one posting is duplicated many times I will contact the admins to have some removed.
Well, Steph it seems you have a dosage that works for you and you are right it varies per person. The main trick is to have enough pain fighters on hand to get you through your treatment and semi recovery and the main thing is to stay ahead of the pain. That is if you ever have constant pain take pain meds on a schedule such as every 6 hours to keep pain at bay and not wait till you are hurting to take it.
You are doing well Steph-Take Care-God Bless-Russ
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Hi Russ, as you know sometimes messages get misconstrued when just typing stuff on the computer and not interacting face to face.
I disagree with staying ahead of the pain with narcotics and I only used oxycodone with Tylenol when I needed it to be able to swallow and eat. Treatment is painful and it is not a tippy toe through the tulips. Each individual has their own pain tolerance and can decide when they need that pill.
Side effects of oxycodone can be painful if not worse than the pain you’re taking it for. Constipation for instance can really make it suck because it hurts too. I clogged my toilet the first dump I took after a week. It is also important to note that addiction can happen also and that’s why I tried to take as little as possible.
Have a good day Russ
ps I’m not a girl
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