Create a PEGless club profile?
Comments
-
Woah.
Hot topic.
The first rad onc that my husband met with said he always puts a peg in before treatment for those getting chemo. And my husband was fine with that. But ultimately, he ended up with a different rad onc who doesn't routinely put them in and has a "wait and see" approach. We were worried because of all I read on here and my husband isn't overweight. So, now he's a week out from the end of treatment and is doing okay. He's only taking in about 700-1000 calories by mouth and has lost as much weight this past week as he lost during his whole treatment (10 lbs before, 10 lbs after). I would say at this point that it's still possible that he could end up needing it, crazy as that sounds.
It seems to me that doctors should be weighing the kinds of factors that Don mentioned before making a recommendsation to peg or not. Is the radition very focused, is there a still tumor and/or lymph nodes, needing longer or higher rads. Where was the primary, how much if any chemo, that sort of thing.
Another factor that I think is interesting is nausea. My husband was usually able to control pain well enough to get smoothies down but was too nauseous to put much in his stomach, so a peg probably wouldn't have helped him there. We don't know why the anti-nausea meds didn't work well enough, but they didn't.
And, lastly, I'd think that one of the main considerations might be whether it's really so terrible to get one if/when you need it, later in treatment. I mean, it's sounds bad, but I hear many people get it later, maybe it's fine. I'm curious if anyone had complications simply because they got it, say, three weeks in instead of the beginning.
Helen
0 -
How's this?HelenBack said:Woah.
Hot topic.
The first rad onc that my husband met with said he always puts a peg in before treatment for those getting chemo. And my husband was fine with that. But ultimately, he ended up with a different rad onc who doesn't routinely put them in and has a "wait and see" approach. We were worried because of all I read on here and my husband isn't overweight. So, now he's a week out from the end of treatment and is doing okay. He's only taking in about 700-1000 calories by mouth and has lost as much weight this past week as he lost during his whole treatment (10 lbs before, 10 lbs after). I would say at this point that it's still possible that he could end up needing it, crazy as that sounds.
It seems to me that doctors should be weighing the kinds of factors that Don mentioned before making a recommendsation to peg or not. Is the radition very focused, is there a still tumor and/or lymph nodes, needing longer or higher rads. Where was the primary, how much if any chemo, that sort of thing.
Another factor that I think is interesting is nausea. My husband was usually able to control pain well enough to get smoothies down but was too nauseous to put much in his stomach, so a peg probably wouldn't have helped him there. We don't know why the anti-nausea meds didn't work well enough, but they didn't.
And, lastly, I'd think that one of the main considerations might be whether it's really so terrible to get one if/when you need it, later in treatment. I mean, it's sounds bad, but I hear many people get it later, maybe it's fine. I'm curious if anyone had complications simply because they got it, say, three weeks in instead of the beginning.
Helen
Helen,
I got through treatment without a PEG. BUT, about two hours after I rang the bell, I was in surgery having one put in. It wasn't a big deal. I was a little sore for a few days and that was it. It was put in Wednesday and I was using it Friday. Some say it's better to put it in prior while you don't feel as bad but a little soreness on top of the yuck I already was feeling didn't matter
The fact that I had an unknown primary made it so I was getting hit with rads everywhere from the sinuses down to cover the bases. That tore me up for sure.
The bottom line was I couldn't eat by the time treatments were done. My swallowing was compromised and the sores in my throat and mouth made it impossible to get enough nourishment in. I lost 10 pounds the last week and I had no choice. It's not a big deal, just a little weird is all. I should have it out by mid summer the rate I'm going."T"
0 -
I think a lot of people end up with themHelenBack said:Woah.
Hot topic.
The first rad onc that my husband met with said he always puts a peg in before treatment for those getting chemo. And my husband was fine with that. But ultimately, he ended up with a different rad onc who doesn't routinely put them in and has a "wait and see" approach. We were worried because of all I read on here and my husband isn't overweight. So, now he's a week out from the end of treatment and is doing okay. He's only taking in about 700-1000 calories by mouth and has lost as much weight this past week as he lost during his whole treatment (10 lbs before, 10 lbs after). I would say at this point that it's still possible that he could end up needing it, crazy as that sounds.
It seems to me that doctors should be weighing the kinds of factors that Don mentioned before making a recommendsation to peg or not. Is the radition very focused, is there a still tumor and/or lymph nodes, needing longer or higher rads. Where was the primary, how much if any chemo, that sort of thing.
Another factor that I think is interesting is nausea. My husband was usually able to control pain well enough to get smoothies down but was too nauseous to put much in his stomach, so a peg probably wouldn't have helped him there. We don't know why the anti-nausea meds didn't work well enough, but they didn't.
And, lastly, I'd think that one of the main considerations might be whether it's really so terrible to get one if/when you need it, later in treatment. I mean, it's sounds bad, but I hear many people get it later, maybe it's fine. I'm curious if anyone had complications simply because they got it, say, three weeks in instead of the beginning.
Helen
later in treatment....it's not unusual at all. It's hard to say how many Dr.'s actually insist on a patient getting one, how many simply suggest it and let the patient decide, how many are adament against getting one (and there are those Dr.'s out out there), and how many are in the wait and see mode.
p
0 -
Don's world
Helen,
My first PEG was awful. Sure it pretended to work for the first 3-weeks, but something wasn’t right. The PEG “looked” text book good and correct, but something was terribly wrong. I don’t know exactly why, but it started to hurt during infusions and moved on to the most excruciating pain you can imagine. The last time I tried to use it I was sobbing it hurt so much. So in the middle of treatments (I guess) I had to have another one. The next one worked fine.
Point being, if someone was desperate for nourishment and could not swallow and had a PEG installed like my first PEG they would be up the preverbal creek without a paddle.
I did manage to drink one meal a day, every day and most likely could have joined the Marines I mean the Skiffin club, but I did not.
Matt
0 -
Got after three weeksHelenBack said:Woah.
Hot topic.
The first rad onc that my husband met with said he always puts a peg in before treatment for those getting chemo. And my husband was fine with that. But ultimately, he ended up with a different rad onc who doesn't routinely put them in and has a "wait and see" approach. We were worried because of all I read on here and my husband isn't overweight. So, now he's a week out from the end of treatment and is doing okay. He's only taking in about 700-1000 calories by mouth and has lost as much weight this past week as he lost during his whole treatment (10 lbs before, 10 lbs after). I would say at this point that it's still possible that he could end up needing it, crazy as that sounds.
It seems to me that doctors should be weighing the kinds of factors that Don mentioned before making a recommendsation to peg or not. Is the radition very focused, is there a still tumor and/or lymph nodes, needing longer or higher rads. Where was the primary, how much if any chemo, that sort of thing.
Another factor that I think is interesting is nausea. My husband was usually able to control pain well enough to get smoothies down but was too nauseous to put much in his stomach, so a peg probably wouldn't have helped him there. We don't know why the anti-nausea meds didn't work well enough, but they didn't.
And, lastly, I'd think that one of the main considerations might be whether it's really so terrible to get one if/when you need it, later in treatment. I mean, it's sounds bad, but I hear many people get it later, maybe it's fine. I'm curious if anyone had complications simply because they got it, say, three weeks in instead of the beginning.
Helen
Hi Helen,
i got my peg, three weeks in just before my second Chemo treatment. The only complications I had we're more to do with adding something new to an already rough process, after a week I got use to it. My Dr never make anyone get a peg, but recommend since they feel it gives you a full proof way to get the nutrition you need, so don't worry about getting mid way through almost all the people in my hospital got it mid treatment....
Eric
0 -
You are right it was my choiceSkiffin16 said:Should....?
Welcome Eric....
Should according to who..., you or my MD...?
Again, all of that was your choice and decision..., not mandatory...
Your comment, "However I think you would be hard pressed to find a Dr that say it is a better idea to not get it."... Obviously for myself my MD's did in essence say "Not to get it", by not prescribing it. If you have followed my postings on the subject over the last four years.... you would know that I haave always said, "if I were prescribed one, I would have gotten one...no questions asked". And that would have not meant that I am weak.... None of us that go through this are weak.
We are talking different scenarios here I think... Making a decision to avoid the PEG, or deny the PEG when prescribed, versus not being prescribed one and saying the MD is wrong in so doing...
John
Hi John,
thanks for the welcome. You are right, the peg was my choice, but basically everything in my treatment was my choice. My Dr would tell me option thoughts, but the left it to me to decide. From chemo, to meds to the peg.
i have read many of you post while I am going through my journeyananda found them helpful and thoughtful.
My journy continues, I am now working to get this stupid peg out and eat real food again!
0 -
Brotherly Love...CivilMatt said:Don's world
Helen,
My first PEG was awful. Sure it pretended to work for the first 3-weeks, but something wasn’t right. The PEG “looked” text book good and correct, but something was terribly wrong. I don’t know exactly why, but it started to hurt during infusions and moved on to the most excruciating pain you can imagine. The last time I tried to use it I was sobbing it hurt so much. So in the middle of treatments (I guess) I had to have another one. The next one worked fine.
Point being, if someone was desperate for nourishment and could not swallow and had a PEG installed like my first PEG they would be up the preverbal creek without a paddle.
I did manage to drink one meal a day, every day and most likely could have joined the Marines I mean the Skiffin club, but I did not.
Matt
You know you love me..., just admit it..., LOL.
0 -
wowSkiffin16 said:Brotherly Love...
You know you love me..., just admit it..., LOL.
wow is about all I can say. I knew PEG is a hot topic,k just not been here long enough to have been singed, burned, mamed, or otherwise, suffering some bad side effect.
First, there are too many thoughts and comments to reply to indiviudully. I think the best reply is restate my original intent, I am not tring to defend my position or that I am not some sort of jerk here.
1) As I move to post-treatment I wanted to honesty "give-back" in some meaningful way; other than thinking that I have the dedication and passion like JG, P, Matt, and the many others who make up the backbone of this forum over the long haul. I suspect my participation would fall off as most tend to do and probably because enough other things fill up the busy day. So I tried to think of something that I experienced or had a somewhat unique perspective on that I could share and leave for others who are going to come to this forum day after day and month aftyer month, seeking out solid first hand survivior tips and techniques. That is how I felt the topic pf PEGless came up. Please go back and see my intent was to just collect enough similar things that might correspond and make a profile of common indicators that allowed some to get by without a PEG.
2) The emotional side of PEG. I still honestly do not know where it comes from. I only remember being all over side to get a PEG early, then one day some post came along and all of a sudden I was a hardened do not need a PEG club member. Emotional, ya think? Why where who knows what made me flip like a pancake on a hot girdle. I will say if the day came I had to get up I would PEGup, so what. You gotta get nutrition and eat, simple as that. Maybe it gets gray and personal when that decision point comes and some people may feel some sense of failing or being let down since they needed a PEG. I surely do not feel that way for a second. In my opionion in some cases do I feel a PEG is being ordered when there is lack of sufficient medical rational to do so, yes I do. Do I feel some PEG are ordered elary and proplery due to current state and conditions and factors indicate a PEG would be beneficial now, yes.
3) I still think the idea of having a checklist and short discussion of factors that allow for a more informed decision regarding PEG would be quite helpful. I still have no recollection of anything like there except if you took the ideas from this thread. Can this thread be salvaged from the up in smoke bin and server its original purpose? maybe I am way off base and I am the only one who has lots of open questions about PEG, certainly not the one who claims to have any of the answers or here to somehow assert myself as some sort of expert on PEG. I would have loved to have a nice couple page document to print and have a read and think through about PEG considerations. Am I the only who feels that is useful? If it is not of interest, I am really fine with dropping the idea, just remember it was something offfered out from the goodness of my heart to help, not create or stir up this apparently really intentse emotional topic. Maybe that is this topic has stalled and not gotten past some emotional boundary in the past and allowed for some rational and useful discussion to continue and prevail.
Only wishing the best to all here at CSN. don
0 -
Factorsdonfoo said:wow
wow is about all I can say. I knew PEG is a hot topic,k just not been here long enough to have been singed, burned, mamed, or otherwise, suffering some bad side effect.
First, there are too many thoughts and comments to reply to indiviudully. I think the best reply is restate my original intent, I am not tring to defend my position or that I am not some sort of jerk here.
1) As I move to post-treatment I wanted to honesty "give-back" in some meaningful way; other than thinking that I have the dedication and passion like JG, P, Matt, and the many others who make up the backbone of this forum over the long haul. I suspect my participation would fall off as most tend to do and probably because enough other things fill up the busy day. So I tried to think of something that I experienced or had a somewhat unique perspective on that I could share and leave for others who are going to come to this forum day after day and month aftyer month, seeking out solid first hand survivior tips and techniques. That is how I felt the topic pf PEGless came up. Please go back and see my intent was to just collect enough similar things that might correspond and make a profile of common indicators that allowed some to get by without a PEG.
2) The emotional side of PEG. I still honestly do not know where it comes from. I only remember being all over side to get a PEG early, then one day some post came along and all of a sudden I was a hardened do not need a PEG club member. Emotional, ya think? Why where who knows what made me flip like a pancake on a hot girdle. I will say if the day came I had to get up I would PEGup, so what. You gotta get nutrition and eat, simple as that. Maybe it gets gray and personal when that decision point comes and some people may feel some sense of failing or being let down since they needed a PEG. I surely do not feel that way for a second. In my opionion in some cases do I feel a PEG is being ordered when there is lack of sufficient medical rational to do so, yes I do. Do I feel some PEG are ordered elary and proplery due to current state and conditions and factors indicate a PEG would be beneficial now, yes.
3) I still think the idea of having a checklist and short discussion of factors that allow for a more informed decision regarding PEG would be quite helpful. I still have no recollection of anything like there except if you took the ideas from this thread. Can this thread be salvaged from the up in smoke bin and server its original purpose? maybe I am way off base and I am the only one who has lots of open questions about PEG, certainly not the one who claims to have any of the answers or here to somehow assert myself as some sort of expert on PEG. I would have loved to have a nice couple page document to print and have a read and think through about PEG considerations. Am I the only who feels that is useful? If it is not of interest, I am really fine with dropping the idea, just remember it was something offfered out from the goodness of my heart to help, not create or stir up this apparently really intentse emotional topic. Maybe that is this topic has stalled and not gotten past some emotional boundary in the past and allowed for some rational and useful discussion to continue and prevail.
Only wishing the best to all here at CSN. don
Foo,
I was thinking about this and the main factor I saw in the PEG or not discussion is the diagnosis. Someone who had a glossectomy would more than likely be needing a PEG. A tracheostomy would inhibit feeding by mouth as well. The rad dosage and location is important too. I believe you said you could get food down by using the side of your mouth receiving the lesser dose.
One's initial starting weight can be a factor. Someone like "P" who was under 100lbs to start with would do well to have one as a precaution. I believe she didn't use it until she was done treatment. Had I gotten one put in prior to treatment I would have been using it the last week or so of treatment.
I feel, for those that wish to avoid a PEG, your experience and research is very valuable. Especially how you handled the various side effects."T"
0 -
Excuses....fishmanpa said:Words on a screen
This is an emotional subject for some. There truly is no one answer that can cover the diversity of diagnosis, treatment nor ones reaction that can be catagorized as difinitive.
One cannot infer inflection nor tone with a post on a thread. We can try using bold, italics or underlining but the message may still be misconstrued. A choice of one word or another can change a meaning and/or infer something other than the original intent. A persons own personal state of mind when they read a post can influence their perception.
I suggest a deep breath and take it for what they are... Words on a screen.
"T"I have an excuse.....
I am Abi-Normal....
Hmmmm, maybe, could it be, I'm sure of it.... That could be why I wasn't prescribed a PEG.... They don't have an abi-normal PEG, just normal ones...
My abi-normal PEG would have been more like a hooka, a tube for water, another for food, one for corona, a snorkel... Might have to have one for the other end for methane emissions....
JG
0 -
LOL...
Don, I completely understand your rational, you are a thinker, as I am. I want to analyze things, and it drives my wife crazy. Whom is to me, more of a seat of her pants person... She lives on her emotions and sensitivity..., never really thinking of future consequences... "That's my impression", LOL... I'm sure she would disagree.
I'm one of those that if I think on it long enough, usually it will fix itself, LOL..
I don't really know why this topic tends to go south, it just does... Maybe it's me... Start it again and I won't participate, LOL...
The funny thing is that we all seem to agree, if the crap hits the fan bad enough, we all agree on having the PEG is a good thing. I guess the sketchy part is the journey to that point.
I don't think there is going to be any magic formula on who has a good potential to make it through with out one, and whom will need one. Not to mention your medical facilty and MD's thoughts and recommendations..., I was never asked my thoughts or given choices, LOL.
Yes, there are some obvious situations as T mentions... People that have no added weight going in, and can't afford to lose 30+ pounds. Someone who already had some medical conditions that might make it even worse trying to swallow. I'm sure there are dozens more...
But again, we are all so different and regardless of thought, we all have different pain tolerance and thresholds. What allows a small frail lady to make it through with minimal problems, and a big athletic guy in near perfect health struggle and be hospitalized?
Anywayz...
John
0 -
PEG Tube Formula
Hi Don,
I am happy to hear that you are doing so well with the treatments.
I hope that you will do me a favor regarding all that PEG tube formua that I gave you by passing it on to someone who can really use it.
I am sure that there were hundreds of dollars worth of formula in those boxes and my intentions were to get it into the hands of someone who could really use it. Not everyone has insurance that covers the stuff. I would appreciate it if you could pass it on. Thank you.
Joanie
0 -
Yes.Joanielo said:PEG Tube Formula
Hi Don,
I am happy to hear that you are doing so well with the treatments.
I hope that you will do me a favor regarding all that PEG tube formua that I gave you by passing it on to someone who can really use it.
I am sure that there were hundreds of dollars worth of formula in those boxes and my intentions were to get it into the hands of someone who could really use it. Not everyone has insurance that covers the stuff. I would appreciate it if you could pass it on. Thank you.
Joanie
Joanie,
Thanks. It is on my to do list. I'll try first at Salvation Army and local food bank, the community cancer support group then Oley if required. don
0 -
Hard Subjectdonfoo said:wow
wow is about all I can say. I knew PEG is a hot topic,k just not been here long enough to have been singed, burned, mamed, or otherwise, suffering some bad side effect.
First, there are too many thoughts and comments to reply to indiviudully. I think the best reply is restate my original intent, I am not tring to defend my position or that I am not some sort of jerk here.
1) As I move to post-treatment I wanted to honesty "give-back" in some meaningful way; other than thinking that I have the dedication and passion like JG, P, Matt, and the many others who make up the backbone of this forum over the long haul. I suspect my participation would fall off as most tend to do and probably because enough other things fill up the busy day. So I tried to think of something that I experienced or had a somewhat unique perspective on that I could share and leave for others who are going to come to this forum day after day and month aftyer month, seeking out solid first hand survivior tips and techniques. That is how I felt the topic pf PEGless came up. Please go back and see my intent was to just collect enough similar things that might correspond and make a profile of common indicators that allowed some to get by without a PEG.
2) The emotional side of PEG. I still honestly do not know where it comes from. I only remember being all over side to get a PEG early, then one day some post came along and all of a sudden I was a hardened do not need a PEG club member. Emotional, ya think? Why where who knows what made me flip like a pancake on a hot girdle. I will say if the day came I had to get up I would PEGup, so what. You gotta get nutrition and eat, simple as that. Maybe it gets gray and personal when that decision point comes and some people may feel some sense of failing or being let down since they needed a PEG. I surely do not feel that way for a second. In my opionion in some cases do I feel a PEG is being ordered when there is lack of sufficient medical rational to do so, yes I do. Do I feel some PEG are ordered elary and proplery due to current state and conditions and factors indicate a PEG would be beneficial now, yes.
3) I still think the idea of having a checklist and short discussion of factors that allow for a more informed decision regarding PEG would be quite helpful. I still have no recollection of anything like there except if you took the ideas from this thread. Can this thread be salvaged from the up in smoke bin and server its original purpose? maybe I am way off base and I am the only one who has lots of open questions about PEG, certainly not the one who claims to have any of the answers or here to somehow assert myself as some sort of expert on PEG. I would have loved to have a nice couple page document to print and have a read and think through about PEG considerations. Am I the only who feels that is useful? If it is not of interest, I am really fine with dropping the idea, just remember it was something offfered out from the goodness of my heart to help, not create or stir up this apparently really intentse emotional topic. Maybe that is this topic has stalled and not gotten past some emotional boundary in the past and allowed for some rational and useful discussion to continue and prevail.
Only wishing the best to all here at CSN. don
I don't think anyone goes in begging for a PEG. I know we didn't .
There are so many factors that hit many of us that don't hit another. Thrush being one of them.
Rob got his tube 4 weeks in. The doctors said he had one of the worst cases of thrush they had seen. These are doctors at the top hospital in our state and a major CCC.
His thrush has continued to this day and has not gotten better. His ability to put water in his mouth is excrutiating. I watch this man try to swallow and the pain on his face hurts me to no degree.
The infusion team said it must be bad because he is the only patient they can remember that has recieved IV diflucan.
We thought we were going to be one of the people that made it though without the PEG. WE were informed and had choices.
There are to many factors that lead to a PEG to put into a fact sheet or guideline on whether to PEG or not to PEG.
I had to wait to post my response, mainly due to rage about trying to sum this up on a spreadhseet. This is a very personal choice and I don't would never begrudge anyone for doing whatever they need to do to get through this or make it easier on themselves. If a person wants one just to make one step of this ugly trip easier, go for it.
Never worry about anyone else but you and what is best for you during your treatment.
Sandy
0 -
thanksrobswife87 said:Hard Subject
I don't think anyone goes in begging for a PEG. I know we didn't .
There are so many factors that hit many of us that don't hit another. Thrush being one of them.
Rob got his tube 4 weeks in. The doctors said he had one of the worst cases of thrush they had seen. These are doctors at the top hospital in our state and a major CCC.
His thrush has continued to this day and has not gotten better. His ability to put water in his mouth is excrutiating. I watch this man try to swallow and the pain on his face hurts me to no degree.
The infusion team said it must be bad because he is the only patient they can remember that has recieved IV diflucan.
We thought we were going to be one of the people that made it though without the PEG. WE were informed and had choices.
There are to many factors that lead to a PEG to put into a fact sheet or guideline on whether to PEG or not to PEG.
I had to wait to post my response, mainly due to rage about trying to sum this up on a spreadhseet. This is a very personal choice and I don't would never begrudge anyone for doing whatever they need to do to get through this or make it easier on themselves. If a person wants one just to make one step of this ugly trip easier, go for it.
Never worry about anyone else but you and what is best for you during your treatment.
Sandy
Sandy,
Thanks for your response. For some reason, and it is likely the way I worded something along the way that what I am suggesting is quite different that what is being heard. I prepared a draft of the document. Could you kindly take a look at it and provide feedback before discounting a document out of hand before even knowing what is in it? For one thing it is not a spreadsheet or does it have any form or sense of calculating anything.
I spent a lot of time putting my thoughts together as a way to offer something that I truelfy feel would help more than create RAGE in people. Maybe if some folks had a read of it and could then decide what their opinion and value of it would be a nice thing.
You use the term personal. In the document it might be viewed as getting a PEG as not personal. When your docitor basically prescribes one to get a PEG installed, there does not seem to be much personal decision left unless one views not taking doctor recommendation as personal choice.
There are a wide range of factors that influence when if a person goes with a PEG. I tried to objectively list the main factors.
Thank you in advance.
Don
0 -
It was this statement thatdonfoo said:thanks
Sandy,
Thanks for your response. For some reason, and it is likely the way I worded something along the way that what I am suggesting is quite different that what is being heard. I prepared a draft of the document. Could you kindly take a look at it and provide feedback before discounting a document out of hand before even knowing what is in it? For one thing it is not a spreadsheet or does it have any form or sense of calculating anything.
I spent a lot of time putting my thoughts together as a way to offer something that I truelfy feel would help more than create RAGE in people. Maybe if some folks had a read of it and could then decide what their opinion and value of it would be a nice thing.
You use the term personal. In the document it might be viewed as getting a PEG as not personal. When your docitor basically prescribes one to get a PEG installed, there does not seem to be much personal decision left unless one views not taking doctor recommendation as personal choice.
There are a wide range of factors that influence when if a person goes with a PEG. I tried to objectively list the main factors.
Thank you in advance.
Don
It was this statement that sent the whole thing south for me....
p
"I find it pretty funny to see how some people just give up before really even trying all that hard."
0 -
Thank you "P"phrannie51 said:It was this statement that
It was this statement that sent the whole thing south for me....
p
"I find it pretty funny to see how some people just give up before really even trying all that hard."
Rob tried like hell to keep from getting the tube but when the thrush took over and could not get better he lost way to much weight way to quick. 14 lbs in 2 weeks. He couldn't put thing in his mouth.
He has not got rid of the thrush yet and they have upped his dose of Diflucan. Now they can't up his moriphine becasue of the interaction of the drugs.
He is miserable and in pain and to read in my head that "suck it up and try harder" put me into a rage. To think that someone would say "take the easy way out" was horrific for me. Rob wants nothing more than to eat and swallow real food.
Everyone's road is different yet still the same in ways. There are just times when you can not imagine what someone else is going through.
Call it the easy way it you want but I say make one thing easier to use that energy for other things that will come along.
Sandy
0 -
Thanks for your commentsrobswife87 said:Thank you "P"
Rob tried like hell to keep from getting the tube but when the thrush took over and could not get better he lost way to much weight way to quick. 14 lbs in 2 weeks. He couldn't put thing in his mouth.
He has not got rid of the thrush yet and they have upped his dose of Diflucan. Now they can't up his moriphine becasue of the interaction of the drugs.
He is miserable and in pain and to read in my head that "suck it up and try harder" put me into a rage. To think that someone would say "take the easy way out" was horrific for me. Rob wants nothing more than to eat and swallow real food.
Everyone's road is different yet still the same in ways. There are just times when you can not imagine what someone else is going through.
Call it the easy way it you want but I say make one thing easier to use that energy for other things that will come along.
Sandy
Thanks for explaining your viewpoint. I will say that I had no idea something that I wrote would be personalized so deeply by others when trying to have an objective discussion while loved ones are suffering.
My intent was not to have people suck it up, I think that is how it gets interpreted when taken out of context.
Let me explain. When your team recommends getting a peg early and you comply then don't need one. Is that giving in and not sucking it up? Hardly, you were following the suggestion of your trusted medical team.
When the medical team suggest waiting for a peg and at some point you determine that you are going to need supplemental support (i.e. get a peg), is that not sucking it up, hardly. Obviously at that point you are where Rob is, hurts like hell, pounds falling off, and insufficient nutrition and liquids not getting into the body. Is that not sucking it up, hardly. Might that even be a bit stupd, maybe.
When the decision to peg up is a personal one, in that the medical team does not have strong feelings or recommendation about the peg, is deciding to get one early sucking it up, maybe. That is where my own personal view is why not try first and see. There are know downside risks all around to getting a PEG and not getting one, you need to assess them and make your own decision. My own personal view is there are more downside risks by placing a peg before not at least trying to the point where it becomes pretty clear a peg would offer significant benefits and counter the downside risks.
Look, going through this whole cancer process stinks for everyone: the patient, the caretaker(s), family, friends. etc. even the pets are disrupted. We all feel like **** and feel the pain every day, is that a reason to not try to see whatever bright sun there is in the day each and every day? Clearly, peg is far more emotional than I had ever dreamed of and that is with a few miles on the survivor wagon.
Do I feel bad some folks personalized this whole thread, yes, of course I do, I have zero interest or take zero pleasure from making ppl feel bad because of something I wrote but hey that happens every day in life. We need to use our filters properly and decide if the writer is a ****, so why bother expending any energy getting worked up, conversely provoking some deeper thinking on the topic.
Just remember at the end of a day, I have cancer, under going curative treatment and hope like you all that it will be completly destroyed but who is to know. I have two nodes that still live in my lungs that could have me in a tizzy all the time. what to do, just take each day to live and enjoy and if/when those things grow/disappear is what I just live with every day. This past week we determine there is some lump now present near the original lymph nodes were present but had disappeared totally. Is this a leftover from the fever/inflamation earlier this week or something that was there that was "hidden" under the radiation sunburns? There are numerous options to stir up the emotions big time on this one. do I want to wake each day and wonder if that was there or is it new or has it grown, or just WTF is that damn thing? I could make myself gag every day from worry. I choose the path that having as much of all the facts and possibilities out there is the best insurance for ME. I do NOT like being ambushed. let me repeat, I do NOT like being ambushed.
That makes me WANT to know as much as I can about anything related to my cancer, that includes knowing as much about a pegt as possible. Am I going to let any information or opinion change how I feel each day about cancer, no. Is it going to make me emotional about peg, no.
if it starts hurting a lot and i can benefit from a peg, guess what, i will call the mo and tell him to stick one in on monday, so what is the big deal? that is just how I personally feel about the topic.
again, sorry if what I wrote made anybody feel bad or get worked up, that was not or is not my intention.
0 -
Do we need a Ref
I seen this topic but ventured on until this morning. All good stuff but my experience was:
We're going to slice you, your going to have a trach and a feeding tube. (in through the nose) OK got it.
Now we're going to zap you **** 30 times and you MAY have to get a feeding tube.
The key word was MAY so I was on a mission that I wasn't going to get one. I lost 92 pounds total and thy threatened to give me one but never said I had to get one.
We all found ways to make this journey work for us which is exactly what Don is doing here. Problem is by commenting on this site we are all being judged by debating words on a screen which loses the effect of a face to face discussion where tempers only flare for seconds because of less time between comments.
I just read this and scratched my head and said I know what I want to say but is it going to be taken that way. To hell with it I'll post it because it's time to go to work. Dam Mondays......
Enjoy the day
Jeff
0 -
IC UR 1 2Duggie88 said:Do we need a Ref
I seen this topic but ventured on until this morning. All good stuff but my experience was:
We're going to slice you, your going to have a trach and a feeding tube. (in through the nose) OK got it.
Now we're going to zap you **** 30 times and you MAY have to get a feeding tube.
The key word was MAY so I was on a mission that I wasn't going to get one. I lost 92 pounds total and thy threatened to give me one but never said I had to get one.
We all found ways to make this journey work for us which is exactly what Don is doing here. Problem is by commenting on this site we are all being judged by debating words on a screen which loses the effect of a face to face discussion where tempers only flare for seconds because of less time between comments.
I just read this and scratched my head and said I know what I want to say but is it going to be taken that way. To hell with it I'll post it because it's time to go to work. Dam Mondays......
Enjoy the day
Jeff
I see you are one two....
ABI-Normal..., LOL.
JG
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards