For Micktissue
All the best to you my friend.
Comments
-
Stilll here
Hi Hondo. I just answered a PM from my buddy and amazingly brave man Steve and I'll just post that. But before that I want to go on more about Steve after rreading a few of his posts. Dude, mowing the lawn? Going fishing? I can't even get out of bed to eat a smoothie at the moment. Damn man you are made of tough stuff! I'm taking major inspiration from your story and applying it to my own.
It's been pretty tough and I'm blogging it on my personal website www.justwrite.us. I just blogged today and came here to give an update too.
The roughest right now is food. I don't have a lot of pain from swallowing, but the taste. Ugh. Nothing taste good and everything makes me want to barf. Yes I have meds to help me through this but they don't help much. Claire (my Superwoman girlfriend/wife) has figured out a way for me to get 2000 calories/day in a way I can tolerate so that is awesome and started today.
The 2nd chemo round really knocked me on my ****. I slept for 2 days. Today was better and tomorrow will be better. 15 more rad treatments and 1 more chemo treatment and it will be over (forever I hope).
Best to all,
Mick0 -
Glad to See Youmicktissue said:Stilll here
Hi Hondo. I just answered a PM from my buddy and amazingly brave man Steve and I'll just post that. But before that I want to go on more about Steve after rreading a few of his posts. Dude, mowing the lawn? Going fishing? I can't even get out of bed to eat a smoothie at the moment. Damn man you are made of tough stuff! I'm taking major inspiration from your story and applying it to my own.
It's been pretty tough and I'm blogging it on my personal website www.justwrite.us. I just blogged today and came here to give an update too.
The roughest right now is food. I don't have a lot of pain from swallowing, but the taste. Ugh. Nothing taste good and everything makes me want to barf. Yes I have meds to help me through this but they don't help much. Claire (my Superwoman girlfriend/wife) has figured out a way for me to get 2000 calories/day in a way I can tolerate so that is awesome and started today.
The 2nd chemo round really knocked me on my ****. I slept for 2 days. Today was better and tomorrow will be better. 15 more rad treatments and 1 more chemo treatment and it will be over (forever I hope).
Best to all,
Mick
Mick,
Sorry you've hit a bad spot in the journey. It seems to me (not that I really know what I'm talking about) that the folks doing 3 chemos have a harder road than the ones doing weekly chemo. I could be (and very often am) wrong - just my opinion. I had weekly.
Going through a rough patch myself (only 2 rads to go - lost in a mountain of used tissues and paper towels; hacking/gagging lots), and was very glad to see your posts here and on your blog. I figure if someone else who isn't having fun can do something productive, no reason why I can't.
Keep trooping0 -
Yeah, I must have bought 50Pam M said:Glad to See You
Mick,
Sorry you've hit a bad spot in the journey. It seems to me (not that I really know what I'm talking about) that the folks doing 3 chemos have a harder road than the ones doing weekly chemo. I could be (and very often am) wrong - just my opinion. I had weekly.
Going through a rough patch myself (only 2 rads to go - lost in a mountain of used tissues and paper towels; hacking/gagging lots), and was very glad to see your posts here and on your blog. I figure if someone else who isn't having fun can do something productive, no reason why I can't.
Keep trooping
Yeah, I must have bought 50 boxes of tissues that I kept randomly around my house within arms reach. Especially by the bed, which I kept a little trash can right next to my bed also. Hang in there Mick, it WILL get better. I am 3 months out of my last radiation treatment(35 total, with 3 Chemos mixed in between) and after my last radiation on Dec. 17th, I slept literally for 7 straight days, just getting up to stomach tube feed and go to the bathroom, my wife and mother worried about how much I was sleeping, but the Rad doc said it was normal to sleep that much after treatments, I actually went back to work part time on Feb 1st, and am now on my 4th week of Full time back at my job. I would come home after my parttime job and sleep til the next morning after going to bed as soon as I got home around 1:00 1:30, then when I went to full time, I would stay at work til 5:00 pm, then come home and crash til the next morning. I am now able to stay up after I get home from work, and am feeling pretty normal now.
I do continue to battle with Thrush, which I would advise you to stay on top of also, because it can be mistaken for just throat pain from the Rads, but is SOOOOO painful, just be checking your self for the signs of it, so if you do get it, you can get some meds quickly and not have to suffer. I take diflucan 2 pills the first day, then 1 a day for the next ten. There are other modes of treating it that docs will choose, just make sure you have some on standby because you want to start treating it as soon as you notice you have it, it will spread really quickly.
Good luck Mick, prayers are with you my man, you CAN do this, take it day to day, concentrate on what is happening to you daily, so you dont lose track of anything.
GRAVEY0 -
gaggingGRAVEY said:Yeah, I must have bought 50
Yeah, I must have bought 50 boxes of tissues that I kept randomly around my house within arms reach. Especially by the bed, which I kept a little trash can right next to my bed also. Hang in there Mick, it WILL get better. I am 3 months out of my last radiation treatment(35 total, with 3 Chemos mixed in between) and after my last radiation on Dec. 17th, I slept literally for 7 straight days, just getting up to stomach tube feed and go to the bathroom, my wife and mother worried about how much I was sleeping, but the Rad doc said it was normal to sleep that much after treatments, I actually went back to work part time on Feb 1st, and am now on my 4th week of Full time back at my job. I would come home after my parttime job and sleep til the next morning after going to bed as soon as I got home around 1:00 1:30, then when I went to full time, I would stay at work til 5:00 pm, then come home and crash til the next morning. I am now able to stay up after I get home from work, and am feeling pretty normal now.
I do continue to battle with Thrush, which I would advise you to stay on top of also, because it can be mistaken for just throat pain from the Rads, but is SOOOOO painful, just be checking your self for the signs of it, so if you do get it, you can get some meds quickly and not have to suffer. I take diflucan 2 pills the first day, then 1 a day for the next ten. There are other modes of treating it that docs will choose, just make sure you have some on standby because you want to start treating it as soon as you notice you have it, it will spread really quickly.
Good luck Mick, prayers are with you my man, you CAN do this, take it day to day, concentrate on what is happening to you daily, so you dont lose track of anything.
GRAVEY
I have just finished my 30 sessions (radiotherapy only) last Thursday. My problem all through this has been the taste of food/gagging. My throat is sore but not as bad as the horrible mucus in my mouth. Doctor said just to keep spitting it out. The salt/bi-carb (in warm water) does help slightly and I believe this can be a deterrant against Thrush. I can only manage about 500 calories a day by drinking one ensure and the odd bottle of Lucozade. The skin on my neck is quite sore with scabs but isn't unbearable. I have lost 16lbs and now weigh 124lbs so don't really want to lose much more. However, I have no desire to eat, and I know as soon as I try to eat the taste will just be the same yet. How long will it be before I can start to eat anything?0 -
G’day to you Mickmicktissue said:Stilll here
Hi Hondo. I just answered a PM from my buddy and amazingly brave man Steve and I'll just post that. But before that I want to go on more about Steve after rreading a few of his posts. Dude, mowing the lawn? Going fishing? I can't even get out of bed to eat a smoothie at the moment. Damn man you are made of tough stuff! I'm taking major inspiration from your story and applying it to my own.
It's been pretty tough and I'm blogging it on my personal website www.justwrite.us. I just blogged today and came here to give an update too.
The roughest right now is food. I don't have a lot of pain from swallowing, but the taste. Ugh. Nothing taste good and everything makes me want to barf. Yes I have meds to help me through this but they don't help much. Claire (my Superwoman girlfriend/wife) has figured out a way for me to get 2000 calories/day in a way I can tolerate so that is awesome and started today.
The 2nd chemo round really knocked me on my ****. I slept for 2 days. Today was better and tomorrow will be better. 15 more rad treatments and 1 more chemo treatment and it will be over (forever I hope).
Best to all,
Mick
Just glad to hear you are doing well my friend. I know the stay in bed all day thing because the chemo would kick my but as well. Just remember if we don’t hear something every few days we tend to worry knowing you guys are in the heat of the fire.
As for Steve I too can’t understand how he could be doing so great must be that foxy Mama in his picture keeping him doing so well.
All the best to you Mick and thanks for giving us an up-date0 -
Good to hearPino Tea said:gagging
I have just finished my 30 sessions (radiotherapy only) last Thursday. My problem all through this has been the taste of food/gagging. My throat is sore but not as bad as the horrible mucus in my mouth. Doctor said just to keep spitting it out. The salt/bi-carb (in warm water) does help slightly and I believe this can be a deterrant against Thrush. I can only manage about 500 calories a day by drinking one ensure and the odd bottle of Lucozade. The skin on my neck is quite sore with scabs but isn't unbearable. I have lost 16lbs and now weigh 124lbs so don't really want to lose much more. However, I have no desire to eat, and I know as soon as I try to eat the taste will just be the same yet. How long will it be before I can start to eat anything?
-that you're doing okay, Mick. 2000 calories should be enough to get you thru the rough times. Even with my PEG, during the worst of times I figure I was between 1600-2000, and did lose 17% of my weight, but I got thru it all okay, as will you. You're experiencing what we all have, Mick, and know we can all relate to what you're going thru. Just keep playing it as it lays, and know that when the treatment's done you'll get back to a more acceptable lifestyle, and you will fully realize that the toll of the battle has all been worth it.
Believe.
kcass0 -
2nd Round of Chemomicktissue said:Stilll here
Hi Hondo. I just answered a PM from my buddy and amazingly brave man Steve and I'll just post that. But before that I want to go on more about Steve after rreading a few of his posts. Dude, mowing the lawn? Going fishing? I can't even get out of bed to eat a smoothie at the moment. Damn man you are made of tough stuff! I'm taking major inspiration from your story and applying it to my own.
It's been pretty tough and I'm blogging it on my personal website www.justwrite.us. I just blogged today and came here to give an update too.
The roughest right now is food. I don't have a lot of pain from swallowing, but the taste. Ugh. Nothing taste good and everything makes me want to barf. Yes I have meds to help me through this but they don't help much. Claire (my Superwoman girlfriend/wife) has figured out a way for me to get 2000 calories/day in a way I can tolerate so that is awesome and started today.
The 2nd chemo round really knocked me on my ****. I slept for 2 days. Today was better and tomorrow will be better. 15 more rad treatments and 1 more chemo treatment and it will be over (forever I hope).
Best to all,
Mick
Morning Mick,
That 2nd round of Chemo seems to be the butt kicker, it was with me also. Hopefully the rest will be a little better for you.
I like the updated photo, it brings home reality and past thoughts of my own.
Not to be taken wrongly at all, but it's too bad that we can't post photos. It would be interesting to see the before, during, and after photos of everyone. I think in some cases it would be a little theraputic actually.
I think it could help some that are going through the rough times of treatment to see just how bad others also had it. But that the after photos would give you the ability to look into your own future and see that you also will get through this. That you will make it through changed and experienced, but back to each of your own beautiful selves....
God Bless,
John0 -
Hi JohnSkiffin16 said:2nd Round of Chemo
Morning Mick,
That 2nd round of Chemo seems to be the butt kicker, it was with me also. Hopefully the rest will be a little better for you.
I like the updated photo, it brings home reality and past thoughts of my own.
Not to be taken wrongly at all, but it's too bad that we can't post photos. It would be interesting to see the before, during, and after photos of everyone. I think in some cases it would be a little theraputic actually.
I think it could help some that are going through the rough times of treatment to see just how bad others also had it. But that the after photos would give you the ability to look into your own future and see that you also will get through this. That you will make it through changed and experienced, but back to each of your own beautiful selves....
God Bless,
John
You can load pictures in your Expression and they stay there on your post, people can read what you put and you can remove then anytime. Go to my post and look under my Expressions.
Mick.
You should have seen some of my pictures, I had hair on one side but not the other, all the best to you my friend. I Looked like Dr. jackal and Mr hide0 -
It gets a little tougher nowHondo said:Hi John
You can load pictures in your Expression and they stay there on your post, people can read what you put and you can remove then anytime. Go to my post and look under my Expressions.
Mick.
You should have seen some of my pictures, I had hair on one side but not the other, all the best to you my friend. I Looked like Dr. jackal and Mr hide
Hi Mick
Your'doing just fine. My first chemo no big deal. Second chemo and culmulative effect of the RADs knocked me on my **** too. try and get up and do something,. If possible take a short walk and don't forget the water bottle. I also started having some balance problems around this point, just couldn't walk a staight line and my feet were always scaping the floor. watch out for small bumps in the walkways. Third one is worse again and yes the reason that they split them into smaller doses twice a day was to remedy the toxic efffect. Either way this crap is poison. hang in there.0 -
Yesratface said:It gets a little tougher now
Hi Mick
Your'doing just fine. My first chemo no big deal. Second chemo and culmulative effect of the RADs knocked me on my **** too. try and get up and do something,. If possible take a short walk and don't forget the water bottle. I also started having some balance problems around this point, just couldn't walk a staight line and my feet were always scaping the floor. watch out for small bumps in the walkways. Third one is worse again and yes the reason that they split them into smaller doses twice a day was to remedy the toxic efffect. Either way this crap is poison. hang in there.
It do get rougher, Mick, but you can handle it. We all have, and they don't give you more than you can. Road gets rough, but the rough get- yeah, you know what they get. Let your Med team know if you need more help- it is their responsibility to get you thru this, along with you giving it your best shot. A new and much better day is just up around the bend. All you gotta do is keep the car moving forward, and don't let it get too far off the road. Manage that, and you will get to that new day.
Believe.
kcass0 -
thanks everybodyKent Cass said:Yes
It do get rougher, Mick, but you can handle it. We all have, and they don't give you more than you can. Road gets rough, but the rough get- yeah, you know what they get. Let your Med team know if you need more help- it is their responsibility to get you thru this, along with you giving it your best shot. A new and much better day is just up around the bend. All you gotta do is keep the car moving forward, and don't let it get too far off the road. Manage that, and you will get to that new day.
Believe.
kcass
It is pretty rough around here. I'm doing ok eating but still losing about a pound a day for about a week after chemo then it levels and then starts to go up. It's making my Dr crazy, but he also says "you're doing great!"
The major problem right now is not pain as much as it is mucous. I have so much stringy stuff in my mouth that (TMI WARNING) it tends to stick inside my throat and cause a gag reflex and today upchucked about 300 calories that I worked damn hard to get down. I'm taking anti-emetics (adavan or zophron) to help, but am wondering if anyone has any ideas about reducing the mucous.
13 more rad treatments and 1 more chemo round to go.
Thanks.
mick0 -
mucousmicktissue said:thanks everybody
It is pretty rough around here. I'm doing ok eating but still losing about a pound a day for about a week after chemo then it levels and then starts to go up. It's making my Dr crazy, but he also says "you're doing great!"
The major problem right now is not pain as much as it is mucous. I have so much stringy stuff in my mouth that (TMI WARNING) it tends to stick inside my throat and cause a gag reflex and today upchucked about 300 calories that I worked damn hard to get down. I'm taking anti-emetics (adavan or zophron) to help, but am wondering if anyone has any ideas about reducing the mucous.
13 more rad treatments and 1 more chemo round to go.
Thanks.
mick
I will be paying close attention as i always do to the side effects
most shared with my boyfriend. The mucous is awful. You are so right!
He too has yet to find something that will thin it out. He isnt eating any
solids, and is only drinking protein shakes and Boost. but those tend to
coat his throat so he takes a long time to get it all down.
I feel for you Mick.
take care,0 -
Hi Mick,thegirlfriend said:mucous
I will be paying close attention as i always do to the side effects
most shared with my boyfriend. The mucous is awful. You are so right!
He too has yet to find something that will thin it out. He isnt eating any
solids, and is only drinking protein shakes and Boost. but those tend to
coat his throat so he takes a long time to get it all down.
I feel for you Mick.
take care,
I wake up every
Hi Mick,
I wake up every morning with a horrible sore throat and then my throat starts gurgling like I have pneumonia. I then cough up, with great discomfort, a large wad of mucous and blood.
A few more times and then the pain starts to reduce a little bit, until I sneeze or cough, but that's from the burns.
I have 9 more radiation sessions to go. Today they told me if I lose anymore weight they are putting me in the hospital. I am losing between 8 and 9 pounds per week. I still haven't received the new canned liquid food (doesn't contain Iodine)for the PEG. They said they shipped it. The radiation doc was very ticked and said he was going to call the supplier himself to find out what the problem is.
I am really glad you can still get food down, I can't even drink water, as it burns my tongue and throat and the pain is too much to bear.
I am very impressed with how well you have been doing through all of this, keep it up!
Your friend
Mike0 -
Fluimucil =AcetylcysteineChefdaddy said:Hi Mick,
I wake up every
Hi Mick,
I wake up every morning with a horrible sore throat and then my throat starts gurgling like I have pneumonia. I then cough up, with great discomfort, a large wad of mucous and blood.
A few more times and then the pain starts to reduce a little bit, until I sneeze or cough, but that's from the burns.
I have 9 more radiation sessions to go. Today they told me if I lose anymore weight they are putting me in the hospital. I am losing between 8 and 9 pounds per week. I still haven't received the new canned liquid food (doesn't contain Iodine)for the PEG. They said they shipped it. The radiation doc was very ticked and said he was going to call the supplier himself to find out what the problem is.
I am really glad you can still get food down, I can't even drink water, as it burns my tongue and throat and the pain is too much to bear.
I am very impressed with how well you have been doing through all of this, keep it up!
Your friend
Mike
Guys,
I recall my Doc prescribed 'Fluimucil' (Generic name: Acetylcysteine) Indication: Used mainly as a 'mucolytic' and in the management of paracetamol (acetaminophen) overdose.
As I only had no-one to compare with at the time, I can't say it knocked out the mucus 100% but it certainly helped. It is also generally good advice to avoid dairy products as these exacerbate the problem. I used Rice Milk as i gather it is much better than Soy.
Once again I will plug the L Glutamine powder as a fix to stop the burning in the mouth. I couldn't drink water either and found if I put 1tsp of the Glutamine Powder in a glass of water I could drink it AND I used it to neutralize burning when i tried to eat or drink stuff that bought on the burning which was almost everything for a while. I would actually have the Glut Water ready when I was experimenting with different drinks as you occasionally will find you crave something thinking it will fine, only to discover quickly that it burns like the rest of the stuff.
Hope this few tips help.
Regds
Scambuster0 -
Sugar free IcebreakersScambuster said:Fluimucil =Acetylcysteine
Guys,
I recall my Doc prescribed 'Fluimucil' (Generic name: Acetylcysteine) Indication: Used mainly as a 'mucolytic' and in the management of paracetamol (acetaminophen) overdose.
As I only had no-one to compare with at the time, I can't say it knocked out the mucus 100% but it certainly helped. It is also generally good advice to avoid dairy products as these exacerbate the problem. I used Rice Milk as i gather it is much better than Soy.
Once again I will plug the L Glutamine powder as a fix to stop the burning in the mouth. I couldn't drink water either and found if I put 1tsp of the Glutamine Powder in a glass of water I could drink it AND I used it to neutralize burning when i tried to eat or drink stuff that bought on the burning which was almost everything for a while. I would actually have the Glut Water ready when I was experimenting with different drinks as you occasionally will find you crave something thinking it will fine, only to discover quickly that it burns like the rest of the stuff.
Hope this few tips help.
Regds
Scambuster
The stringy mucous is horrendous. I hated spitting all the time. I got out an old pork and bean's can an used it as a spit cup. It ain't pretty but throwing up food was worse. The spit can helped me mitigate gagging responces from buildup in the back of the throat.
I found that a sugar free candy called Icebreakers, the fruity sour kind, was better than almost all the prescribed medicines after the first month. The candy also helped me with the cough from dry throat.0 -
Mickmicktissue said:Stilll here
Hi Hondo. I just answered a PM from my buddy and amazingly brave man Steve and I'll just post that. But before that I want to go on more about Steve after rreading a few of his posts. Dude, mowing the lawn? Going fishing? I can't even get out of bed to eat a smoothie at the moment. Damn man you are made of tough stuff! I'm taking major inspiration from your story and applying it to my own.
It's been pretty tough and I'm blogging it on my personal website www.justwrite.us. I just blogged today and came here to give an update too.
The roughest right now is food. I don't have a lot of pain from swallowing, but the taste. Ugh. Nothing taste good and everything makes me want to barf. Yes I have meds to help me through this but they don't help much. Claire (my Superwoman girlfriend/wife) has figured out a way for me to get 2000 calories/day in a way I can tolerate so that is awesome and started today.
The 2nd chemo round really knocked me on my ****. I slept for 2 days. Today was better and tomorrow will be better. 15 more rad treatments and 1 more chemo treatment and it will be over (forever I hope).
Best to all,
Mick
Been where you are with my husband. Hang in and hang on. Sleep away - it helps to pass the time and ease the pain.
PK0 -
Psst - It's Memicktissue said:thanks everybody
It is pretty rough around here. I'm doing ok eating but still losing about a pound a day for about a week after chemo then it levels and then starts to go up. It's making my Dr crazy, but he also says "you're doing great!"
The major problem right now is not pain as much as it is mucous. I have so much stringy stuff in my mouth that (TMI WARNING) it tends to stick inside my throat and cause a gag reflex and today upchucked about 300 calories that I worked damn hard to get down. I'm taking anti-emetics (adavan or zophron) to help, but am wondering if anyone has any ideas about reducing the mucous.
13 more rad treatments and 1 more chemo round to go.
Thanks.
mick
Mick,
It's me - here - over here - in the middle of the mountain of used tissues and paper towels.
I feel for you - just finished rads yesterday, and the mucous/phlegm combo is making me crazy. The nausea that was long gone has returned, and I spend my time napping, wanting to nap, doing tube feedings, gagging, hacking, spitting, drooling and wiping.
Of course, lots of water is the #1 hint I keep reading to help thin the mucous. Several folks recommend club soda; a couple, Coke. I'm almost desperate enough to try the soda (even though I very dramatically swore off soft drinks, my former addiction). If I find an answer, I'll let you know.
Do well,
- Pam0 -
Amifostine Spared Memicktissue said:thanks everybody
It is pretty rough around here. I'm doing ok eating but still losing about a pound a day for about a week after chemo then it levels and then starts to go up. It's making my Dr crazy, but he also says "you're doing great!"
The major problem right now is not pain as much as it is mucous. I have so much stringy stuff in my mouth that (TMI WARNING) it tends to stick inside my throat and cause a gag reflex and today upchucked about 300 calories that I worked damn hard to get down. I'm taking anti-emetics (adavan or zophron) to help, but am wondering if anyone has any ideas about reducing the mucous.
13 more rad treatments and 1 more chemo round to go.
Thanks.
mick
I think the Amifostine spared me the thick mucous.... Hang in there bud, you only have a few more days left.
John0 -
Oh, Mick ...pk said:Mick
Been where you are with my husband. Hang in and hang on. Sleep away - it helps to pass the time and ease the pain.
PK
... As PK says, we've been there. Man, it does suck, and I feel for you -- but this too shall pass.
Now, 17 months out, the only problem I have is in the morning. I still have to hack and gack some stuff out of the deep recesses of my throat, but most of that is due to the fluoride treatment I do before bedtime. The Prevident seems to sink to the bottom of my throat overnight, but once I get it out in the morning, I have no trouble for 24 hours.
You will get better. Don't forget that fact, and keep your eyes on the prize.
--Jim in Delaware0
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