Encourage me please!
Comments
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Welcome...
First thing is to calm down..you are exactly where you should be one week post rads.
A lot of people think that as soon as they get done, they'll start feeling better. That's far from the truth (as you are seeing).
In reality, you are still "cooking" from the rads, and will continue for a few more weeks.
The rads are kind of cumulative...remember when you started..it took about three weeks before you started having any significant signs of discomfort and pain (more than likely)... It's the same when you finish, the "cooking" process is still going on.
Soon you will start feeling better...a little at a time, it's very slow. Measured in weeks and months, not days and weeks.
As for the mucous, there are several survivors that have tried various remedies..L-glutamine being one. For me, I rinsed a lot with hydrogen peroxide and baking soda mixed in a small glass of water.
Here's a link to the SuperThread...a compilation of tons of very useful information and links, especially for newbies here as yourself.
SUPERTHREAD
Hang tough, it'll get better soon....
Also, very important to stay well hydrated during this time.
Again, welcome to the forum,
John0 -
Thanks John. Im gettingSkiffin16 said:Welcome...
First thing is to calm down..you are exactly where you should be one week post rads.
A lot of people think that as soon as they get done, they'll start feeling better. That's far from the truth (as you are seeing).
In reality, you are still "cooking" from the rads, and will continue for a few more weeks.
The rads are kind of cumulative...remember when you started..it took about three weeks before you started having any significant signs of discomfort and pain (more than likely)... It's the same when you finish, the "cooking" process is still going on.
Soon you will start feeling better...a little at a time, it's very slow. Measured in weeks and months, not days and weeks.
As for the mucous, there are several survivors that have tried various remedies..L-glutamine being one. For me, I rinsed a lot with hydrogen peroxide and baking soda mixed in a small glass of water.
Here's a link to the SuperThread...a compilation of tons of very useful information and links, especially for newbies here as yourself.
SUPERTHREAD
Hang tough, it'll get better soon....
Also, very important to stay well hydrated during this time.
Again, welcome to the forum,
John
Thanks John. Im getting worried and reading so much and just getting overwhelmed. I'm gonna try and calm down like you said and try some of the pain meds that I do have and pray that they don't make me sick like past times. I'm having a difficult time staying hydrated and don't drink, eat , or hardly speak and I know those are all bad things. I just let the pain get the best of me at times and go into avoidance mode. I'm gonna try to get my **** together and stop letting it consume me. Thank you!
Katie0 -
Hi KperrySkiffin16 said:Welcome...
First thing is to calm down..you are exactly where you should be one week post rads.
A lot of people think that as soon as they get done, they'll start feeling better. That's far from the truth (as you are seeing).
In reality, you are still "cooking" from the rads, and will continue for a few more weeks.
The rads are kind of cumulative...remember when you started..it took about three weeks before you started having any significant signs of discomfort and pain (more than likely)... It's the same when you finish, the "cooking" process is still going on.
Soon you will start feeling better...a little at a time, it's very slow. Measured in weeks and months, not days and weeks.
As for the mucous, there are several survivors that have tried various remedies..L-glutamine being one. For me, I rinsed a lot with hydrogen peroxide and baking soda mixed in a small glass of water.
Here's a link to the SuperThread...a compilation of tons of very useful information and links, especially for newbies here as yourself.
SUPERTHREAD
Hang tough, it'll get better soon....
Also, very important to stay well hydrated during this time.
Again, welcome to the forum,
John
John just toldnyou about everything about where you are atbin the scheme of things. I felt about like you do when I was a week out from rads. My worst day was dayb10, funny how you remember things like that. Rhe mucus was as thick as a banjo string sometimes. Then it started to get better. Now, just a little over two months out, I have no problem at all with the mucus. I used a bunch of salt/soda solution during the tough times, probably 20 ounces a day. I just kept two bottles by the kitchen sink. It did help cut that nasty stuff.
I see you have a new baby too. Do you have enough help? I ask that because the odds are you generally feel like crap right now, and probably dont have much energy. This is the toughest time you are living through right now. You need to take good care of yourself.
Hang in there, it will start getting better pretty soon, but it will take awhilr, as John said.
Pat0 -
Hang In There Kperry
Kperry...
So Sorry you have to be in this club ...but it's true, you are right where you should be and we all have been through what you are feeling. I want to encourage you that it WILL end ...it WILL get better.
I finished my radiation January 20th ....I just knew I was going to die from the mucous...I could not believe how difficult it was ...so thick, so MUCH ...constant pain and trying to breath is the worst. But I'm here to tell you I'm doing GREAT (compared to what I was just describing).
Go to that super thread. Gingerale worked okay for me and I gargled with a salt and baking soda solution.
I remember one day looking at my wife and just saying ...I can't do this another day ...and I was bit slower to get better than most...it was another 1.5 months before I turned a corner and the mucous went away. The pain stayed with me as well.
The alternative to what you are having to go through now is obvious. Hang in there Kperry, there is light at the end of the tunnel...I promise. I was taking 6 Narco a day and wore two Fentynol patches for the pain ...as well as took 5 advil every 6 hours ....I share that only so you will know the pain is normal too.
You can click on my bio to see what I had ....
Said a prayer for you as I finished typing this just now ....best to you Kperry ...feel free to email me if you like. Also....not sure how to tell you to get on but they started a facebook group here called H&N Warriors ...or something like that ....
Keep coming back to the board....the folks who post on this really are helpful ...I'm a newbie here myself.
Tim / Idaho
timcogdill@yahoo.com
feel free to call as well....I know if I had been able to just hear someone tell me what you read here ..it would have made things even better.
208.630.4842 cell ....my wife was my rock through all of this ..she can tell you some stories as well
0 -
You are doing GREATTim6003 said:Hang In There Kperry
Kperry...
So Sorry you have to be in this club ...but it's true, you are right where you should be and we all have been through what you are feeling. I want to encourage you that it WILL end ...it WILL get better.
I finished my radiation January 20th ....I just knew I was going to die from the mucous...I could not believe how difficult it was ...so thick, so MUCH ...constant pain and trying to breath is the worst. But I'm here to tell you I'm doing GREAT (compared to what I was just describing).
Go to that super thread. Gingerale worked okay for me and I gargled with a salt and baking soda solution.
I remember one day looking at my wife and just saying ...I can't do this another day ...and I was bit slower to get better than most...it was another 1.5 months before I turned a corner and the mucous went away. The pain stayed with me as well.
The alternative to what you are having to go through now is obvious. Hang in there Kperry, there is light at the end of the tunnel...I promise. I was taking 6 Narco a day and wore two Fentynol patches for the pain ...as well as took 5 advil every 6 hours ....I share that only so you will know the pain is normal too.
You can click on my bio to see what I had ....
Said a prayer for you as I finished typing this just now ....best to you Kperry ...feel free to email me if you like. Also....not sure how to tell you to get on but they started a facebook group here called H&N Warriors ...or something like that ....
Keep coming back to the board....the folks who post on this really are helpful ...I'm a newbie here myself.
Tim / Idaho
timcogdill@yahoo.com
feel free to call as well....I know if I had been able to just hear someone tell me what you read here ..it would have made things even better.
208.630.4842 cell ....my wife was my rock through all of this ..she can tell you some stories as well
Kperry: believe me when I say that you are doing absolutely great for where you are timewise. This is probably the very worst you will feel...so you've come to the top of the hill and from here on you can just coast to the finish line. As Skiff said, you will continue to cook for a few more weeks, it's all normal. You are exactly where we all were this short a time post treatment. But you are doing so good. When I was back where you were I was barely able to be on my laptop.... all I wanted to do was sleep. Make sure you take up all your family/friends/neighbors on any offers of help. With a new baby, you will have to find a way to get your rest.... I know it is hard to force the liquids. I didn't want to do it either. One thing I did for 2 months was to "eat" ice... crushed ice, sno-cone style. It would melt in my mouth but slowly, so I didn't really have to "swallow" but I still got enough water every day. Don't know if you have a feeding tube, but if you do, take extra liquids in through your tube. and come back here any time you have questions. Someone on here has been thru everything you can possibly think of and all of us are here to help you. Keep up the good work ! and don't get discouraged.0 -
Ohhh thank you Tim6003. JustTim6003 said:Hang In There Kperry
Kperry...
So Sorry you have to be in this club ...but it's true, you are right where you should be and we all have been through what you are feeling. I want to encourage you that it WILL end ...it WILL get better.
I finished my radiation January 20th ....I just knew I was going to die from the mucous...I could not believe how difficult it was ...so thick, so MUCH ...constant pain and trying to breath is the worst. But I'm here to tell you I'm doing GREAT (compared to what I was just describing).
Go to that super thread. Gingerale worked okay for me and I gargled with a salt and baking soda solution.
I remember one day looking at my wife and just saying ...I can't do this another day ...and I was bit slower to get better than most...it was another 1.5 months before I turned a corner and the mucous went away. The pain stayed with me as well.
The alternative to what you are having to go through now is obvious. Hang in there Kperry, there is light at the end of the tunnel...I promise. I was taking 6 Narco a day and wore two Fentynol patches for the pain ...as well as took 5 advil every 6 hours ....I share that only so you will know the pain is normal too.
You can click on my bio to see what I had ....
Said a prayer for you as I finished typing this just now ....best to you Kperry ...feel free to email me if you like. Also....not sure how to tell you to get on but they started a facebook group here called H&N Warriors ...or something like that ....
Keep coming back to the board....the folks who post on this really are helpful ...I'm a newbie here myself.
Tim / Idaho
timcogdill@yahoo.com
feel free to call as well....I know if I had been able to just hear someone tell me what you read here ..it would have made things even better.
208.630.4842 cell ....my wife was my rock through all of this ..she can tell you some stories as well
Ohhh thank you Tim6003. Just being able to get on here and talk with pole who are experiencing the same is wonderful. My mother and my kids are my rock. I love my mom so much she has truly went above and beyond for me. I knw it's hard on her taking care of me and helping me with the kids. I'm starting to feel better just reading others encouraging words. I don't feel like I'm stuck under a rock as much anymore. God Bless you and Thank you from the bottom of my heart for your kindness and prayer.
Katie0 -
Hi Longtermsurvivorlongtermsurvivor said:Hi Kperry
John just toldnyou about everything about where you are atbin the scheme of things. I felt about like you do when I was a week out from rads. My worst day was dayb10, funny how you remember things like that. Rhe mucus was as thick as a banjo string sometimes. Then it started to get better. Now, just a little over two months out, I have no problem at all with the mucus. I used a bunch of salt/soda solution during the tough times, probably 20 ounces a day. I just kept two bottles by the kitchen sink. It did help cut that nasty stuff.
I see you have a new baby too. Do you have enough help? I ask that because the odds are you generally feel like crap right now, and probably dont have much energy. This is the toughest time you are living through right now. You need to take good care of yourself.
Hang in there, it will start getting better pretty soon, but it will take awhilr, as John said.
Pat
My mother helps me and my dad comes downs often to help out as well. My brother and his wife and kids are amazing support they try to keep me uplifted. I'm not on a tube all though some days I wish I were because I feel like I'm starving. I long for the good days and I know they will come its just I'm a bit impatient. My mother has taken on more than she probably asked for but bless her heart she gets a break from us all coming up this weekend. It's well deserved and I hope she has a good time. I'm getting close to day 10 tmrw actually eek I hope things don't get any worse than they are now. My throat feels soo dry yet so much mucus. It hurts to swallow. I did get the dreaded fungal infection and still battling it so a lot of things feel like they got fuzz on it. Each day seems something different.0 -
Katie
Like the others have said- you are where you likely should physically be. I, unlike many others, did not think things got worse right after tx. You do need to use magic mouthwash, salt water and baking soda, etc., to help with the symptoms- see the Superthread.
Noticed on your profile page that you did not get chemo, which is typically a/the major reason for a nausea problem. Possible your entire nausea issue is caused by the mucous problem, as I believe was the case with me. Between your Op, and then the rads, your throat has taken a hit, but you will be okay if your Drs got it all. Amazed me on how well my mouth and throat healed, and hope you will be able to say the same. Takes awhile, so just be patient and take one day at a time, you know.
As for the emotional, Katie- a number of people needed help along those lines in dealing with it all. Not sure where you're at, but most Onco offices have someone to help for such. You've just done battle with a monster that was trying to kill you, Katie, and that is as serious as it gets. Keeping it in the Positive not only helps in the battle, but also in the healing, and if you need help to maintain that Positive- might be the thing to do.
kcass0 -
I didn't have the mucous but
I didn't have the mucous but did have a VERY sore throat. You will see a huge improvement within a couple of weeks. Like others I thought I was breezing through the rt until I got to the last couple of weeks, than when it was over it really hit me. When it starts to get better it gets better fast. Hang in there!
John0 -
You'll get there!jtl said:I didn't have the mucous but
I didn't have the mucous but did have a VERY sore throat. You will see a huge improvement within a couple of weeks. Like others I thought I was breezing through the rt until I got to the last couple of weeks, than when it was over it really hit me. When it starts to get better it gets better fast. Hang in there!
John
I don't have too much to add that hasn't already been said, but it will be over soon.. I know that doesn't help you for the moment, but it will eventually fade. For me it took about 5-6 weeks AFTER my last treatment before I could actually atempt to swallow soft foods and not be in so much pain from it. Just keep looking forward keep waiting for tomorrow, it will come. For me it was almost over night when I did start to feel better. It was like crappy day - crappy day - crappy day -cr...HEY Wait a minute.. I feel.... better! LOL I mean you won't go from 0 percent to 100 percent, but you'll get there. I'm with you and praying that these weeks go by fast. I don't know if someone mentioned this, but egg drop soup. It was one of the things I could tolerate. Feel better hun.0 -
Now isn't this cool ???KristynRuth said:You'll get there!
I don't have too much to add that hasn't already been said, but it will be over soon.. I know that doesn't help you for the moment, but it will eventually fade. For me it took about 5-6 weeks AFTER my last treatment before I could actually atempt to swallow soft foods and not be in so much pain from it. Just keep looking forward keep waiting for tomorrow, it will come. For me it was almost over night when I did start to feel better. It was like crappy day - crappy day - crappy day -cr...HEY Wait a minute.. I feel.... better! LOL I mean you won't go from 0 percent to 100 percent, but you'll get there. I'm with you and praying that these weeks go by fast. I don't know if someone mentioned this, but egg drop soup. It was one of the things I could tolerate. Feel better hun.
Katie......I'm not able to find the posts, but alot of us were telling Kristyn Ruth the very same thing, when she was going through what you're going through now. And, ironically, they told me the same. I can also recall telling my wife, while she was holding me like a baby, that I didn't think I could go through another "crappy day". But, now I'm running 5ks every weekend. Go figure. You'll make it fine, Katie. And you look great KR. Hope the kids are doing well.
Larry0 -
Said a prayer for you tonight KperryCajunEagle said:Now isn't this cool ???
Katie......I'm not able to find the posts, but alot of us were telling Kristyn Ruth the very same thing, when she was going through what you're going through now. And, ironically, they told me the same. I can also recall telling my wife, while she was holding me like a baby, that I didn't think I could go through another "crappy day". But, now I'm running 5ks every weekend. Go figure. You'll make it fine, Katie. And you look great KR. Hope the kids are doing well.
Larry
I included your mother as well since I know how hard it was on my wife (while tending to our five chidren with me down and out).
I trust you are doing well and I know that end is coming to the pain and mucous and all the misery you are feeling....
Best to you Katie / and your mom.
Tim & Jennifer / Idaho
timcogdill@yahoo.com0 -
sending love and encouragement!!!!Tim6003 said:Said a prayer for you tonight Kperry
I included your mother as well since I know how hard it was on my wife (while tending to our five chidren with me down and out).
I trust you are doing well and I know that end is coming to the pain and mucous and all the misery you are feeling....
Best to you Katie / and your mom.
Tim & Jennifer / Idaho
timcogdill@yahoo.com
Everyone else has said what I would say. Thank goodness you are here. Nothing better than encouragement from people who have gone through what you have gone through. I had a pretty rough treatment, and was were you are just a few months ago....
I still have mucous but it is sooooooooo much better. I use generic mucinex and it helps, it's an expectorant. Treating pain is so crucial, people heal faster and have better outcomes if pain is adequately controlled. So I am glad you state your going to use your pain meds. IF your suffering nausea and vomiting after taking the narcotics, it could be that your stomach is empty. Often times, narcotics are hard on a empty stomach, a little bit of food prior to taking the meds can do the trick. I know that is easier said than done currently, I remember not wanting anything in my mouth for fear it would cause worse pain. Sometimes people don't tolerate morphine or oxycodone, but tolerate dilaudid much better. These are conversations for your oncology pharmacist and oncologist. I had a wonderful pharmacist who was just as much part of my team as my nurses and oncologist were, actually he was more involved than the doc. The nurses and the pharmacist were, and still are, the ones I turn to when I want or need anything. They are truly angels sent from heaven to help me battle this cancer!
I will be thinking of you, and be praying you turn the corner soon. Remember, your still cooking and your were your supposed to be.... things will get better, it just takes time.
Clinton
Washington State0 -
Encouragement
Katie
Post rad 13 months later for me..it's now all just a nightmare and kind of forget some of it. I do remember my doctor advised gargling warm water mixed with baking soda and salt. The mucous would literally drive me out of my mind. Went through several boxes of tissues just spitting out the mucous. It's true, just one day it was gone! So know in your mind, it won't be much longer, things do get better. I too was very nauseous and vomiting afterwards. The patch finally helped with my pain. Ice pops and ice chips help with the soreness and getting some needed fluids. Someone told me about sparkling water and I think it may have helped.
I too didn't feel I was as strong as in the beginning but was told I was strong too. Looking back now, I'd have to say I was! Just think how you never ever give up and talking about it makes you stronger. Having the prayers and support from others really helps the most. Sending many prayers out to you and others going through the exact same. We have to keep the faith and believe!!!
Stay in touch<3
Fran~0 -
Sending Prayers Kperry!!francma said:Encouragement
Katie
Post rad 13 months later for me..it's now all just a nightmare and kind of forget some of it. I do remember my doctor advised gargling warm water mixed with baking soda and salt. The mucous would literally drive me out of my mind. Went through several boxes of tissues just spitting out the mucous. It's true, just one day it was gone! So know in your mind, it won't be much longer, things do get better. I too was very nauseous and vomiting afterwards. The patch finally helped with my pain. Ice pops and ice chips help with the soreness and getting some needed fluids. Someone told me about sparkling water and I think it may have helped.
I too didn't feel I was as strong as in the beginning but was told I was strong too. Looking back now, I'd have to say I was! Just think how you never ever give up and talking about it makes you stronger. Having the prayers and support from others really helps the most. Sending many prayers out to you and others going through the exact same. We have to keep the faith and believe!!!
Stay in touch<3
Fran~</p>
Just wanted you to know ....praying all is well and going well. I can't wait for you to turn that corner!!! It's coming!
Tim & Jennifer / Idaho0 -
Not much more to addKperry said:Ohhh thank you Tim6003. Just
Ohhh thank you Tim6003. Just being able to get on here and talk with pole who are experiencing the same is wonderful. My mother and my kids are my rock. I love my mom so much she has truly went above and beyond for me. I knw it's hard on her taking care of me and helping me with the kids. I'm starting to feel better just reading others encouraging words. I don't feel like I'm stuck under a rock as much anymore. God Bless you and Thank you from the bottom of my heart for your kindness and prayer.
Katie
I've been out of touch for a few days and was concerned when I read your first posts--and then saw all of the great advice and others' stories that have lifted your spirits. So, there's not much more for me to add, other than to say again that your progression is very typical and should not be a source of worry.
There is something I have called "treatment fatigue" from the constant need to stay on top of things, and see very little positive progress on a day to day basis. Physically and mentally, you can just get tired of being tired and sick all the time--and that can wear on your body and your spirit.
I still get some periods of treatment fatigue, even three years out of rads and chemo. As many people have said, it's just a part of the 'new normal' of being a HNC cancer survivor--that one day call yourself!
Mike0
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