same problem, different day
Well, first off, I feel almost guilty for compaining about what I'm about to complain about, in light of the much, much more serious issues that others are dealing with. In light of that, I'll simply mention it and won't dwell too long on it. I'm tired. I mean really, really tired. I assume that it's acute radiation fatigue and not chronic radiation fatigue since I'm just three weeks post treatment but I mean, this is just crazy. I can't push through it, sleep it off, rest it away or will it away. They ought to find another name for this because it bears little resemblance to the kind of fatigue that everyone experiences, and if you say the word "fatigue" people automatically think "Hey, I know what that is because I've experienced that too, so this must just be a really, really bad case of fatigue." But it isn't. It's a different animal completely. It's incapacitating fatigue. Anyway, as promised, I'm not going to delve into it too much because I feel like if that's the worst thing that I have to deal with, I ought to count myself lucky. Which I do. (My pain isn't gone but is manageable. So, lucky, for sure, yes.)
Comments
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mp327mp327 said:LaCh
I'm sorry you are experiencing this. I hear your frustration and understand. It's not fun when the human mind wants to bounce back but the body is not yet ready. Hang in there!
yep, thanks. I'd be willing to claw back. That doesn't seem possible either. Anyway...thanks.
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LaCh
I am glad your pain is subsiding! I think the severe fatigue immediatly post treatment is common, if that helps you at all. It does get much better. Walking in fresh air helps and also diet. I think most feel some improved energy gradually over,the course of months. Slow, but sure.
I am suffering from severe fatigue again now, but it is related to my second cancer, most probably. It is so frustrating!0 -
LaCH
Fatigue as in "my feet, hands and head are encased in cement"? Or does it get worse?
I slept yesterday for about 18 hours and still could barely put one foot in front of the other, fell asleep during 3 minutes of radiation and I am only 1 week in.
Today is better, I am (at least have been) a high energy person.
Hope you have some good days mixed in with the bad and hope that very soon they are all good days!
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BBDogsBBdogs said:LaCH
Fatigue as in "my feet, hands and head are encased in cement"? Or does it get worse?
I slept yesterday for about 18 hours and still could barely put one foot in front of the other, fell asleep during 3 minutes of radiation and I am only 1 week in.
Today is better, I am (at least have been) a high energy person.
Hope you have some good days mixed in with the bad and hope that very soon they are all good days!
You know, my massage therapist at Sloan kettering asked me to describe it and I said that I couldn't, really. The best I could do was to say that it feels like you weigh 500 pounds. As for falling asleep on the table, I did that once too.... Thanks for the good days/bad days wishes. I just hope that I can pull it together--no, that's not right either--I hope that it rghts itself by the spring so that I can take my dog to the park and not be curtailed by fatigue. This poor child hasn't had a decent walk in months.
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LorikatLorikat said:Amen. Fatigue isn't a strong
Amen. Fatigue isn't a strong enough word.
ja ja ja I dunno why, that makes me laugh but no, it doesn't. I dunno what else you'd call it though. The walking-through-waist-deep-mud syndrome? Too long. Maybe just deep mud syndrome. Yeah, man, I got the deep muds. Bad.
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marynbMarynb said:LaCh
I am glad your pain is subsiding! I think the severe fatigue immediatly post treatment is common, if that helps you at all. It does get much better. Walking in fresh air helps and also diet. I think most feel some improved energy gradually over,the course of months. Slow, but sure.
I am suffering from severe fatigue again now, but it is related to my second cancer, most probably. It is so frustrating!Thanks Marynb.... yeah, the external burns are 98% healed. The mystery pain inside is still there and still a mystery, but a bearable one. I told my gastroenterologist that I imagined her doing a biposy in a few months and coming to tell me, Jeeze, no WONDER it hurts so much, you have a piece of glass stuck up there.... or something like that. My plan was--or is--or was--I'm not sure, to start walking on a treadmill in March at a gym that I get free access to from my health insurance.... So we'll see, guess. I'm not happy to hear that you're having issues with the second cancer...no, I don't like that. I've always said, in life, anywhere you look, there's always someone healthier than you, less healthy than you, nicer then you, not a nice as you, smarter, not as smart, richer, poorer, better, worse, and so on. I feel pretty lucky in life but I've never really felt unlucky. I was listening to the story of Tig Notaro, a stand-up comic who had breast cancer a short time ago and a double mastectomy at Sloan Kettering. But before that she had an intestinal infection. And after that her mother died suddenly. And after that her romantic relationship ended. And then came her cancer. All in the course of four months. And I look at that and I think to myself, What on earth to YOU have to complain about??? Anyway, I do, sincerely, hope that you find some relief, whether it's with the fatigue or anything else that comes your way. You've been very kind to me over these last months and I never forget that sort of thing.
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I like that! Imagine....LaCh said:Lorikat
ja ja ja I dunno why, that makes me laugh but no, it doesn't. I dunno what else you'd call it though. The walking-through-waist-deep-mud syndrome? Too long. Maybe just deep mud syndrome. Yeah, man, I got the deep muds. Bad.
I like that! Imagine.... Howe are you feeling? Answer: mud deep! I already have my "crappy" days, now I can have " mud deep" days. Our very own language!
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LaChLaCh said:marynb
Thanks Marynb.... yeah, the external burns are 98% healed. The mystery pain inside is still there and still a mystery, but a bearable one. I told my gastroenterologist that I imagined her doing a biposy in a few months and coming to tell me, Jeeze, no WONDER it hurts so much, you have a piece of glass stuck up there.... or something like that. My plan was--or is--or was--I'm not sure, to start walking on a treadmill in March at a gym that I get free access to from my health insurance.... So we'll see, guess. I'm not happy to hear that you're having issues with the second cancer...no, I don't like that. I've always said, in life, anywhere you look, there's always someone healthier than you, less healthy than you, nicer then you, not a nice as you, smarter, not as smart, richer, poorer, better, worse, and so on. I feel pretty lucky in life but I've never really felt unlucky. I was listening to the story of Tig Notaro, a stand-up comic who had breast cancer a short time ago and a double mastectomy at Sloan Kettering. But before that she had an intestinal infection. And after that her mother died suddenly. And after that her romantic relationship ended. And then came her cancer. All in the course of four months. And I look at that and I think to myself, What on earth to YOU have to complain about??? Anyway, I do, sincerely, hope that you find some relief, whether it's with the fatigue or anything else that comes your way. You've been very kind to me over these last months and I never forget that sort of thing.
Thank you for the well wishes. I, like Tig Notaro, could do a stand up comedy routine about the level of bad luck that I have had for the last 13 years! Nothing to do but laugh! Now, when something happens to me, my friends no longer say, "on, no what's next". They are afraid to. However, I have a beautiful daughter and she is healthy, happy, and graduated from college now. I won't dare ask for more! Life is good. I do have a second cancer that I am going to have to tackle again soon, neuroendocrine carcinoma. I mean why have one cancer, when you could have 2? Every day for me is a good day, no matter what! I just want to see my daughter grow into a strong and independent woman before I have to say goodbye. God knows, she has seen me tackle a long list of life's little tests. I only hope that I have been a good enough role model so that when she faces her own obstacles, and I am not here to help her, she knows how to fight through them. I am rambling......:)0 -
oh fatigue
I agree that it needs a new name!
I can't say how happy I am not to be almost constantly under that overwhelming fatigue I felt in the early post-treatment days. Everything and nothing wore me out a few months ago. Now 4 months after treatment the worst of the fatigue is gone. I'm not 100% but I think I've got a good 5 hour day in me. I'm counting on that as I go back to work half-time in a few days. These days when the fatigue hits me it's not nearly as severe as it used to be and I can take a little rest and get back to the puttering around kind of life I've been living. Going back to work will be very interesting. I'm hopeful but apprehensive about re-entering normal life.
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jcruz--jcruz said:oh fatigue
I agree that it needs a new name!
I can't say how happy I am not to be almost constantly under that overwhelming fatigue I felt in the early post-treatment days. Everything and nothing wore me out a few months ago. Now 4 months after treatment the worst of the fatigue is gone. I'm not 100% but I think I've got a good 5 hour day in me. I'm counting on that as I go back to work half-time in a few days. These days when the fatigue hits me it's not nearly as severe as it used to be and I can take a little rest and get back to the puttering around kind of life I've been living. Going back to work will be very interesting. I'm hopeful but apprehensive about re-entering normal life.
I wish you all the best with your return to work. I hope the half-time schedule will be just right for you!
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jcruz, et aljcruz said:oh fatigue
I agree that it needs a new name!
I can't say how happy I am not to be almost constantly under that overwhelming fatigue I felt in the early post-treatment days. Everything and nothing wore me out a few months ago. Now 4 months after treatment the worst of the fatigue is gone. I'm not 100% but I think I've got a good 5 hour day in me. I'm counting on that as I go back to work half-time in a few days. These days when the fatigue hits me it's not nearly as severe as it used to be and I can take a little rest and get back to the puttering around kind of life I've been living. Going back to work will be very interesting. I'm hopeful but apprehensive about re-entering normal life.
I finally figured out a good metaphor for this fatigue. It's like I'm a battery that won't take a charge. I remind myself of my iPod Touch which is now belly up and unusable because the battery won't take a charge anymore. I go to charge it and I see the red bar, indicating that it has no charge. After 4 hours of charging, it got a skinny green bar which will give me about 10 listening minutes, then it's dead again. So, I AM my iPod Touch. The reason that this came to mind is because I was walking to my Sloan Kettering Integrative Center massage a few blocks from my house, and I thought, "Hey, this is like the old me." I was walking at a pretty good clip...for 2 blocks. Then, my little spurt of energy was spent, I was back in the red and the batteries had run dry. I just cannot seem to take a charge or keep a charge.
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LaCh: How well I rememberLaCh said:jcruz, et al
I finally figured out a good metaphor for this fatigue. It's like I'm a battery that won't take a charge. I remind myself of my iPod Touch which is now belly up and unusable because the battery won't take a charge anymore. I go to charge it and I see the red bar, indicating that it has no charge. After 4 hours of charging, it got a skinny green bar which will give me about 10 listening minutes, then it's dead again. So, I AM my iPod Touch. The reason that this came to mind is because I was walking to my Sloan Kettering Integrative Center massage a few blocks from my house, and I thought, "Hey, this is like the old me." I was walking at a pretty good clip...for 2 blocks. Then, my little spurt of energy was spent, I was back in the red and the batteries had run dry. I just cannot seem to take a charge or keep a charge.
LaCh: How well I remember that horrible fatigue. To me it felt like my legs were made of lead, and I would feel sick and woozy if I tried to overdo it. I live in a rural area, and love to walk along edges of fields and woods with my dog.... I remember when I finally felt like I could go for a little walk, and all I could do was cross the road, go about 40 feet and lean up against a hay bale, crying with frustration, anger and grief that I couldn't go any further. I think it probably was the most frustrating thing I have ever experienced. Hence came one of the things that I do think I learned from the whole experience - PATIENCE. And it's a hard one; a very hard one, but maybe one of those things that makes us better people in the long run for having to go through this frustrating and difficult journey........ Just my thoughts, for whatever they are worth.....
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islandgirlculebraislandgirlculebra said:LaCh: How well I remember
LaCh: How well I remember that horrible fatigue. To me it felt like my legs were made of lead, and I would feel sick and woozy if I tried to overdo it. I live in a rural area, and love to walk along edges of fields and woods with my dog.... I remember when I finally felt like I could go for a little walk, and all I could do was cross the road, go about 40 feet and lean up against a hay bale, crying with frustration, anger and grief that I couldn't go any further. I think it probably was the most frustrating thing I have ever experienced. Hence came one of the things that I do think I learned from the whole experience - PATIENCE. And it's a hard one; a very hard one, but maybe one of those things that makes us better people in the long run for having to go through this frustrating and difficult journey........ Just my thoughts, for whatever they are worth.....
I don't feel that kind of frustration, or that kind of defeat, to me it's more astonishment, like, "holy s***, this is NUTS!" I had to take my dog to the vet the other day and the entire thing, round trip, probably took 40 minutes. But I was wiped out for the rest of the day, and the place is just a few blocks from here. I feel like a third-pary observer at times, thinking, "this is the weirdest thing I've ever seen..." As for the patience/impatience part, I can't really say that I feel that, exactly either, it's more of a "Man, I sure hope this improves by the Spring," sort of thing. The rest of it, yeah, I'd say that I feel the same. The spurts of energy that make you think, "YES! I'm BACK!!" that peter out a minute afterwards. And then you think, "Wow, that was quick." I don't lose any sleep over it, but it's more of a "I sure hope this resolves rather soon." I still plan to try walking on a treadmill sometime in March...see if that has any effect....
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It's like there's no reserve
It's like there's no reserve left to pull from. Usually when we get tired we've got a reserve bank of energy we can pull from. But with this it's not there anymore.
The only other time I've felt that kind of tiredness was years ago - I had a myomectomy (fibroids, they remove the fibroids and leave the rest of the plumbing intact). Lost a lot of blood. About a month or two after the operation I was making a huge chart on a poster board for the March Madness tournament (this was before everything went to computers) - I made a mistake about 3/4 of the way through and just sat down and cried - not like me at all. I had no reserve strength to pull from - all done in. Something small like the chart mistake (although it was a BIG chart!) crumbled me.
The fatigue or tiredness from this treatment was worse and lasted longer, but that March Madness chart was my first experience like this. But things did get better over time after the cancer treatments. I still don't have the stamina I had before (I'm a little 4 years out from treatment) but things are certainly ok. More than ok - they're great.
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so what's the general consensus???RoseC said:It's like there's no reserve
It's like there's no reserve left to pull from. Usually when we get tired we've got a reserve bank of energy we can pull from. But with this it's not there anymore.
The only other time I've felt that kind of tiredness was years ago - I had a myomectomy (fibroids, they remove the fibroids and leave the rest of the plumbing intact). Lost a lot of blood. About a month or two after the operation I was making a huge chart on a poster board for the March Madness tournament (this was before everything went to computers) - I made a mistake about 3/4 of the way through and just sat down and cried - not like me at all. I had no reserve strength to pull from - all done in. Something small like the chart mistake (although it was a BIG chart!) crumbled me.
The fatigue or tiredness from this treatment was worse and lasted longer, but that March Madness chart was my first experience like this. But things did get better over time after the cancer treatments. I still don't have the stamina I had before (I'm a little 4 years out from treatment) but things are certainly ok. More than ok - they're great.
so what's the general consensus regarding how long acute radiation fatigue takes to resolve? I know that the answers will vary, but.... in general....
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LachLaCh said:so what's the general consensus???
so what's the general consensus regarding how long acute radiation fatigue takes to resolve? I know that the answers will vary, but.... in general....
I guess I m not typical, who knows. I had major surgery weeks after finishing treatments. I then went back to work full time, 4 months later, with an hour and a half commute each way. I felt ok, but was exhasuted at the end of each day. I have to say to this day, I am not the person that I once was. Maybe that is a good thing? I have slowed down considrably and I am battling fatigue these days. I think and hope that the more typical patient recovers and stays recovered?
You are really early in your recovery! I think you will see improvement gradually. Hopefully, when your body is able to digest food normally again, there will be a big improvement.
Is it snowing in NYC? It is mixed here.0 -
LaCh
I'm almost 2 years post treatment and there are times when it feels like someone has pulled my plug as in electric plug. I'm on thyroid medication now. Thyroid was normal before treatment. As for your iPod touch maybe you need a new charger? I have to say that I am able to do things again. Didn't think I would feel this good again when I was going through treatment. It does get better.
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Took about four months for meAZANNIE said:LaCh
I'm almost 2 years post treatment and there are times when it feels like someone has pulled my plug as in electric plug. I'm on thyroid medication now. Thyroid was normal before treatment. As for your iPod touch maybe you need a new charger? I have to say that I am able to do things again. Didn't think I would feel this good again when I was going through treatment. It does get better.
Took about four months for me to feel like myself again. That's not to say the horrible, horrible fatigue lasted for four months. But I mean to feel pretty normal again, as far as energy levels.
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