how to describe to non-chemo people why/how post chemo feels so bad
Ok, I know you pink sisters who have been through chemo "get it" - chemo sucks!
I actually did great with Taxol, am doing less well with FEC.
People ask me how I feel and I tell them "lousy" (days 3-6). It;s hard to describe what is lousy, though, I don;t throw up, I don't have pain; but I feel extreme fatigue, a sense of alienation (not feeling alienated, but feeling like an alien, i.e. from outer space!) But it;s hard to describe what exactly feels so awful since my head doesn;t hurt, stomach doesn;t hurt...am I making any sense?
I would just feel (oddly!) better if I had better words to describe my specific lousiness! Does anyone have those words for your post chemo lousy? It's almost as if I feel that if I can;t describe why I feel sick I'm not really sick - but I am!
Laura
PS This entire post may not make sense since I'm still a bit "chemo brained" on Day 7 (another thing hard to describe to the non-chemo people!) so take it FWIW!
Comments
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There are no words
Laura,
When my sister told be how bad chemo was. I thought I understood. I went with her to chemo and her doctor appointments after the cancer returned. She even lived with us for several years. She cried when she had the red devil.
Now that I have also had the red devil, I realize I had no idea what she was talking about. Unfortunately, I don't think there is a way to convey how chemo feels.
I tell people I felt toxic. That is the only word that I could think of since I didn't vomit and I wasn't in pain. I do know exactly what you mean.
I wish I could have been some help.....
Cindy
ps - according to my sister, it takes about a year to get back to normal.0 -
How about "I feel like amamolady said:There are no words
Laura,
When my sister told be how bad chemo was. I thought I understood. I went with her to chemo and her doctor appointments after the cancer returned. She even lived with us for several years. She cried when she had the red devil.
Now that I have also had the red devil, I realize I had no idea what she was talking about. Unfortunately, I don't think there is a way to convey how chemo feels.
I tell people I felt toxic. That is the only word that I could think of since I didn't vomit and I wasn't in pain. I do know exactly what you mean.
I wish I could have been some help.....
Cindy
ps - according to my sister, it takes about a year to get back to normal.
How about "I feel like a truck just ran me over and then dumped a load of radioactive waste on top of me"?
Eva0 -
I always used the line "Itender said:How about "I feel like a
How about "I feel like a truck just ran me over and then dumped a load of radioactive waste on top of me"?
Eva
I always used the line "It feels like my gas tank is running on sludge".
Lorrie0 -
Laura,
when people would ask
Laura,
when people would ask me how i was feeling while i was having chemo my reply was always the same: "like stomped sh*t"0 -
You're making total sense, LauraHeatherbelle said:Laura,
when people would ask
Laura,
when people would ask me how i was feeling while i was having chemo my reply was always the same: "like stomped sh*t"
Laura, to those of us who've been there, you're making total sense....I can relate to everything you describe, and to the descriptions the rest of you have come up with.
Especially love yours, Eva: "I feel like a truck just ran me over and then dumped a load of radioactive waste on top of me." Perfect!
The only images most people have of chemo is from movies and tv -- so, if you're not throwing up and emaciated, you must be fine, right? So I tried to focus on the practical: What I could do, and what I couldn't. I often told people that my energy every day was like a bank account: There's only so much money in a bank account, and you can spend it here or spend it there, but when it's gone, it's gone. That helped some people understand it a little better.
Traci0 -
I know what your saying. It
I know what your saying. It is hard to describe. It is similar to trying to explain to a man how labor and child birth feels like. The "chemo" feeling is definitely something I have never experienced before. To me it feels like I have been poisoned, so toxic is a good word.0 -
We all know the feeling here, LauraCinkal said:I know what your saying. It
I know what your saying. It is hard to describe. It is similar to trying to explain to a man how labor and child birth feels like. The "chemo" feeling is definitely something I have never experienced before. To me it feels like I have been poisoned, so toxic is a good word.
but only because we've been through it. It is really hard to describe. I felt somewhere between--being poisoned and run over by a semi on those bad days and that's usually how I put it. Like Cinkal said above--toxic is a good word. I even felt like I was eminating a toxic smell through chemo.
Hugs, Renee0 -
...poplolly said:I felt lethargic and totally
I felt lethargic and totally drained of energy. But I love all the great descriptions others have come up with. If I have to go through this again, I'm going to use some of those....:)
Kinda' like that ride where you're spinning and then they drop the floor out from underneath you only on THAT ride the floor comes back up and you eventually get off the ride. You (might) feel kinda' lousy for a few seconds, not sure if you're gonna' be sick just want so bad to feel better.
And you do, the brain wizens up, realizes you're on solid ground and that your world has stopped spinning out of control. Presto Magic, all is right and we can forget it ever happened.
Well, back up...it's those very few seconds (although the floor dropping away is a touching runner-up), those scant few seconds when you're sing-songing the 'better in a few seconds mantra' THAT'S maybe what it's just a little bit like.
Except, it's not just a measly few seconds. It's non-stop. Sometimes for days on end. No matter how many times we tell ourselves 'it'll be over soon.'
To top it all off, we will never get to that Presto Magic moment where all is right and we most certainly can never forget it ever happened.0 -
Well at best its like ridingjendrey said:...
Kinda' like that ride where you're spinning and then they drop the floor out from underneath you only on THAT ride the floor comes back up and you eventually get off the ride. You (might) feel kinda' lousy for a few seconds, not sure if you're gonna' be sick just want so bad to feel better.
And you do, the brain wizens up, realizes you're on solid ground and that your world has stopped spinning out of control. Presto Magic, all is right and we can forget it ever happened.
Well, back up...it's those very few seconds (although the floor dropping away is a touching runner-up), those scant few seconds when you're sing-songing the 'better in a few seconds mantra' THAT'S maybe what it's just a little bit like.
Except, it's not just a measly few seconds. It's non-stop. Sometimes for days on end. No matter how many times we tell ourselves 'it'll be over soon.'
To top it all off, we will never get to that Presto Magic moment where all is right and we most certainly can never forget it ever happened.
Well at best its like riding behind the exhaust of a bus!0 -
description.
I think the most frustrating part is not knowing when you are going to feel bad. You think you can get something done today and "Presto/Chango!" All plans kicked in the butt for today.
I was speaking with my grandtwins yesterday and way trying to describe what chemo does after we had been discussing a bit of cellullar biology (broken down into 9 year old terms). I explained that the run away cancer cells that might have escaped the surgeon needed to be caught. If they didn't get caught they would run around in my body and try to party party party and corrupt all the normal cells and turn them into cancer. So when the doctors give me chemo, the medicine runs all over my body hunting down those run away cancer cells and it Kicks thier butt. I told them that chemo is so scary that even my hair is afraid of it and the hair is smart and has decided to leave before it's butt gets kicked. I told them that even my fingernails might run for thier lives. Of course we were all laughing about this but I think the kids kinda got the message.
For adults maybe you can explain constant threat of barfing, coupled with unexpected inability to count on your body to get you to the bathroom, walk with any type of speed to escape a fire, and to think straight even when not in emergency mode. Add to that the run over by the garbage truck and as soon as you think you can get up it is time for another chemo treatment and you get hit with another garbage truck.0 -
The Red Devil is Helllaughs_a_lot said:description.
I think the most frustrating part is not knowing when you are going to feel bad. You think you can get something done today and "Presto/Chango!" All plans kicked in the butt for today.
I was speaking with my grandtwins yesterday and way trying to describe what chemo does after we had been discussing a bit of cellullar biology (broken down into 9 year old terms). I explained that the run away cancer cells that might have escaped the surgeon needed to be caught. If they didn't get caught they would run around in my body and try to party party party and corrupt all the normal cells and turn them into cancer. So when the doctors give me chemo, the medicine runs all over my body hunting down those run away cancer cells and it Kicks thier butt. I told them that chemo is so scary that even my hair is afraid of it and the hair is smart and has decided to leave before it's butt gets kicked. I told them that even my fingernails might run for thier lives. Of course we were all laughing about this but I think the kids kinda got the message.
For adults maybe you can explain constant threat of barfing, coupled with unexpected inability to count on your body to get you to the bathroom, walk with any type of speed to escape a fire, and to think straight even when not in emergency mode. Add to that the run over by the garbage truck and as soon as you think you can get up it is time for another chemo treatment and you get hit with another garbage truck.
Red Devil is Hell, and then came Taxol, I just new that come day 3 I was going down.
I would explain it as having the flu all the time. Never really knowing what I would feel like.Garbage is good for me. LOL
Kathy0 -
me tooKat11 said:The Red Devil is Hell
Red Devil is Hell, and then came Taxol, I just new that come day 3 I was going down.
I would explain it as having the flu all the time. Never really knowing what I would feel like.Garbage is good for me. LOL
Kathy
Kathy - that's what I said too - that it was like having the flu that lasted for well over 4 months. Or that a truck ran over me and then backed up and did it again. Linda0 -
I LOVE LOVE LOVElinpsu said:me too
Kathy - that's what I said too - that it was like having the flu that lasted for well over 4 months. Or that a truck ran over me and then backed up and did it again. Linda
all your descriptions! Thanks so much for helping me put words to this experience!
Laura0 -
tomorrow
Tomorrow iz round 2 for me of my TAC cocktail (it cracks me up that they are called cocktails) I am am def worried since after the first
One I felt like a truck ran over me by day 3. Horrible pain in bones and joints from Nulesta shot no vomiting just dry heaves
Terrible mouth sores..now I have my msgic mouthwadh so hopefully I will kick the sores out right away.It is supposed to rsin in
NY again all week so I guess I guess it will be agood week to just stay in bed. Prayes and good thoughts to alll0 -
Many good descriptions!foxhill96 said:tomorrow
Tomorrow iz round 2 for me of my TAC cocktail (it cracks me up that they are called cocktails) I am am def worried since after the first
One I felt like a truck ran over me by day 3. Horrible pain in bones and joints from Nulesta shot no vomiting just dry heaves
Terrible mouth sores..now I have my msgic mouthwadh so hopefully I will kick the sores out right away.It is supposed to rsin in
NY again all week so I guess I guess it will be agood week to just stay in bed. Prayes and good thoughts to alll
And you're right, people think that if you're not throwing up and looking like a wlaking skelaton you must be okay. Don't you just wish you could somehow give them a day in your skin?0 -
You are making total sense!skipper54 said:Many good descriptions!
And you're right, people think that if you're not throwing up and looking like a wlaking skelaton you must be okay. Don't you just wish you could somehow give them a day in your skin?
You are making total sense! One way I recently described the feeling to a friend was like just getting over the flu. It's like that first day you are starting to feel some better, but not good enough to be up and about, working, cleaning, even reading a good book yet. It is a miserable, irritable feeling, the only way I know to describe it.
Nancy0 -
I've been wanting to respond
I've been wanting to respond to this post for some time, and the truth is, it's hard to describe. But yesterday, I came up with the closest definition I could find.
To me chemo feels like I am in a twilight zone: I am not here, or there, or anywhere. In addition to feeling like having thousands of midgets doing acupuncture inside your body - to each organ. And depending on the state of that organ, it would react accordingly. That's how I feel with chemo.
Good post!0
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