Still here and still tired

Rubytoos
Rubytoos Member Posts: 45
in Head and Neck Cancer #1
Hi All! Been away for awhile but still here and thinking of everyone.

Can anyone relate....I am 11 weeks out of rad treatment (35)(cancer of tonsil) and am still feeling very very tired. I think I am getting enough nutrition (PEG) but some times I swear I feel like I could just FALL OUT on the spot. I was not this tired a few weeks ago. I have had two throat infections in the past 4 weeks or so and ENT says it is a side effect of rad. He also told me that it could take as long as a year to feel GOOD again.

I just wish somebody would give me a BREAK! I feel like CRAP, damnit. And I do not like to complain, but here it is anyway. Go figure.

Sorry, ya'll, for being such a big baby. I know my situation is much easier to bear than a lot of you.

Thank you for being here.

Ruby

Comments

  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #2
    I can relate.
    Hello from your sister from another mister from the town of Crapville.

    I hope you get to feeling better soon. I know at 11 weeks out, I was still a very hurting pup. Pretty much still at my worst.

    Are you taking in enough water? Can you do any 'real' food yet? Are you getting proper nutrition? Like a good amount of protein. Are you keeping track of calories? How many did they tell you that you need? How many are you getting? Are you able to get up and around and outside to get some sunlight, and a little exercise?

    Sometimes, some of us just take longer than others. I couldn't measure my progress in weeks, I had to measure it in months, and honestly, I still have issues, and I am 2.25 years out. It may take you up to a year to feel 'good'. It took my a year to feel 'better'. Before that, I could hardly function. I was still on painkillers because my mouth and tongue still hurt so badly. Then when I went off, I couldn't believe how much pain that patch was masking in my neck, from the neck dissection

    All I can say in addition to getting enough hydration, food, nutrition, exercise, and trying to stay positive, is to set weekly goals for yourself, trying to fo a little more every week. Pick things you loved to do before, and would like to do again. Also pick something to do that gets you up and out of the house, too. Maybe something that meets once a week to look forward too.
  • Rubytoos
    Rubytoos Member Posts: 45
    #3
    sweetblood22 said:

    I can relate.
    Hello from your sister from another mister from the town of Crapville.

    I hope you get to feeling better soon. I know at 11 weeks out, I was still a very hurting pup. Pretty much still at my worst.

    Are you taking in enough water? Can you do any 'real' food yet? Are you getting proper nutrition? Like a good amount of protein. Are you keeping track of calories? How many did they tell you that you need? How many are you getting? Are you able to get up and around and outside to get some sunlight, and a little exercise?

    Sometimes, some of us just take longer than others. I couldn't measure my progress in weeks, I had to measure it in months, and honestly, I still have issues, and I am 2.25 years out. It may take you up to a year to feel 'good'. It took my a year to feel 'better'. Before that, I could hardly function. I was still on painkillers because my mouth and tongue still hurt so badly. Then when I went off, I couldn't believe how much pain that patch was masking in my neck, from the neck dissection

    All I can say in addition to getting enough hydration, food, nutrition, exercise, and trying to stay positive, is to set weekly goals for yourself, trying to fo a little more every week. Pick things you loved to do before, and would like to do again. Also pick something to do that gets you up and out of the house, too. Maybe something that meets once a week to look forward too.

    Crapville City Limit
    I have read about your painful times lately and my thoughts are with you, Sweet. I hope you feel better much sooner than later.

    This is what I meant by me having it so much easier. I did not have neck dissection or anything remotely so serious or life-changing. This is why I feel like such a weiner by expressing my discomfort when all I had was a tonsillectomy, my molars extracted and a PEG. Then the radiation. You and others have gone through and are going through so much more, no comparison. Nevertheless, we are all kindred who have met the Beast.

    I am most always on the go. And I mean always. I do have to take a power break about twice a day. I am able to eat soft foods, only the appetite rarely makes an appearance, but am getting the calories from the liquid thru the tube. And a bottle of water is my new appendage. I have been slowly getting back to my stained glass work; slowly. So I suppose I am just venting...sheer frustration. There is someone in my life who thinks I should be over this by now.(Began in Feb. 2011 with the diagnosis) And I'm simply NOT.

    Thank you for writing back to me.

    Now the thing to do is to get YOURSELF feeling better and start kicking some major butt!

    Thanks again!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    It does take awhile, my ENT also says it can take a year or longer....

    I'm two years post treatment and still get fatigued earlier in the evening and day than I did pre-treatment.

    Also, you mentioned infections and I presume antibiotics. I'm just getting over a urinary tract infection and had Cipro for antibiotics. That was a little over a week ago since I last took the meds, but between them and the infection itself, I'm still feeling less energetic than before. So between the "new normal" less energy and the "meds/infection" less energy, I'm really getting hit with less energy.

    I also believe the heat of summer and doing anything out in the weather (other than fishing, LOL) adds to that energy drain.

    Best,
    John
  • Rubytoos
    Rubytoos Member Posts: 45
    #5
    Skiffin16 said:

    It does take awhile, my ENT also says it can take a year or longer....

    I'm two years post treatment and still get fatigued earlier in the evening and day than I did pre-treatment.

    Also, you mentioned infections and I presume antibiotics. I'm just getting over a urinary tract infection and had Cipro for antibiotics. That was a little over a week ago since I last took the meds, but between them and the infection itself, I'm still feeling less energetic than before. So between the "new normal" less energy and the "meds/infection" less energy, I'm really getting hit with less energy.

    I also believe the heat of summer and doing anything out in the weather (other than fishing, LOL) adds to that energy drain.

    Best,
    John

    Hi John,

    It's nice to be understood. Yes, I took anitbiotics for the first dance of infection, now am doing the Nystasin oral suspension, lovely taste, but hey, at least I can taste it! And Prednisone. I agree that the heat plays a part, but I don't get it since I 'm in the A/C 95% of the time. Guess I should fire the other 5%. I know things will get better in time.

    Anyway, I'd like to tell any newcomers to this site that you have found a wonderful place to express yourself...among FRIENDS...it really does help! Lots of love and support.

    John, are you a Fish Whisperer? Just wondering as I have known a very few.

    Thanks and the best to you as well!
  • slow_recovery
    slow_recovery Member Posts: 4
    #6
    still tired
    I am 6 months out and I still get tired, but I have improved quite a bit from where I was at 11 weeks out. My Radiation Oncologist also said it takes a year to get to your "new normal". The slow recovery rate is extremely frustrating. I don't know how it was for others but I don't believe the medical people weren't completely honest about the duration of the recovery when I was first diagnosed. I was under the impression that I would be back to normal a month or two after treatment, what a joke that is!

    I guess we just have to accept that it will take many months to recover.

    If there is someone important in your life that doesn't believe it should take so long to recover, I suggest bringing them with you to the next oncologist's appointment and let them hear what the Dr says.

    Best of Luck,
    slow_recovery
  • palmyrafan
    palmyrafan Member Posts: 396
    #7
    Rubytoos said:

    Crapville City Limit
    I have read about your painful times lately and my thoughts are with you, Sweet. I hope you feel better much sooner than later.

    This is what I meant by me having it so much easier. I did not have neck dissection or anything remotely so serious or life-changing. This is why I feel like such a weiner by expressing my discomfort when all I had was a tonsillectomy, my molars extracted and a PEG. Then the radiation. You and others have gone through and are going through so much more, no comparison. Nevertheless, we are all kindred who have met the Beast.

    I am most always on the go. And I mean always. I do have to take a power break about twice a day. I am able to eat soft foods, only the appetite rarely makes an appearance, but am getting the calories from the liquid thru the tube. And a bottle of water is my new appendage. I have been slowly getting back to my stained glass work; slowly. So I suppose I am just venting...sheer frustration. There is someone in my life who thinks I should be over this by now.(Began in Feb. 2011 with the diagnosis) And I'm simply NOT.

    Thank you for writing back to me.

    Now the thing to do is to get YOURSELF feeling better and start kicking some major butt!

    Thanks again!

    Crapville
    I did not have what you and the others have, but I have brain cancer and had IMRT radiation therapy and I know that I felt like crap afterwards for months. I was trying to find my new normal and I know I was drained just by standing up from a sitting position sometimes. But with 2 kids and a busy life I had to do what I had to do.

    It does take time and some days are worse than others. But focus on what your successes are. "Some days, success is simply getting out of bed" (Vickie Girard). And sometimes it feels like you take 1 step forward and 2 steps back. But go forward you will.

    As for the stained glass? My husband and I have a commercial studio that is great therapy for us. My husband loves to go in and get creative and it helps him relax (he's my caregiver) and I wear many different hats. Office manager, bookkeeper, inventory control specialist, housekeeper, banker, you name it, I do it. With limited energy. But I focus on what I can do, not what I can't. Otherwise I get so frustrated all I do is sit in a chair and cry myself silly.

    Cancer in any form is frustrating. But that is what is so wonderful about this site and all the great people in it. They keep me sane and they don't make fun of questions or comments I have, they accept me for who I am. So don't feel bad that you ask questions or feel the need to vent. Isn't that why we are all here?

    Take care of yourself. You're the only you we got.

    Blessings!
    Teresa
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    slow_recovery said:

    still tired
    I am 6 months out and I still get tired, but I have improved quite a bit from where I was at 11 weeks out. My Radiation Oncologist also said it takes a year to get to your "new normal". The slow recovery rate is extremely frustrating. I don't know how it was for others but I don't believe the medical people weren't completely honest about the duration of the recovery when I was first diagnosed. I was under the impression that I would be back to normal a month or two after treatment, what a joke that is!

    I guess we just have to accept that it will take many months to recover.

    If there is someone important in your life that doesn't believe it should take so long to recover, I suggest bringing them with you to the next oncologist's appointment and let them hear what the Dr says.

    Best of Luck,
    slow_recovery

    Month or Two...Not
    If you add rads to the equation, you are still actually cooking for a month or so after the last rad session....

    It's a very slow recovery process...measured more in weeks and months versus days and weeks....

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
    Rubytoos said:

    Crapville City Limit
    I have read about your painful times lately and my thoughts are with you, Sweet. I hope you feel better much sooner than later.

    This is what I meant by me having it so much easier. I did not have neck dissection or anything remotely so serious or life-changing. This is why I feel like such a weiner by expressing my discomfort when all I had was a tonsillectomy, my molars extracted and a PEG. Then the radiation. You and others have gone through and are going through so much more, no comparison. Nevertheless, we are all kindred who have met the Beast.

    I am most always on the go. And I mean always. I do have to take a power break about twice a day. I am able to eat soft foods, only the appetite rarely makes an appearance, but am getting the calories from the liquid thru the tube. And a bottle of water is my new appendage. I have been slowly getting back to my stained glass work; slowly. So I suppose I am just venting...sheer frustration. There is someone in my life who thinks I should be over this by now.(Began in Feb. 2011 with the diagnosis) And I'm simply NOT.

    Thank you for writing back to me.

    Now the thing to do is to get YOURSELF feeling better and start kicking some major butt!

    Thanks again!

    Let's take the last train from Crapville....
    I'll meet you at the station.

    So we all agree Crapville stinks.

    "There is someone in my life who thinks I should be over this by now.(Began in Feb. 2011 with the diagnosis) And I'm simply NOT."

    Seriously? I mean seriously?! That's only five months! They are lucky they aren't in my life. I would poke them in the eye with a pointed stick if they said that to me.

    Honestly, how irrating. I will send you the pointed stick. :D

    Oh, and don't apologize for needing some support, because your issue isn't as life threatening as some one else's. Of course, I need to follow my own advice on that myself. I feel bad complaining when others have it way worse than I do. It's all relative, sweetie, and we are here to support, encourage, and help one another.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    sweetblood22 said:

    Let's take the last train from Crapville....
    I'll meet you at the station.

    So we all agree Crapville stinks.

    "There is someone in my life who thinks I should be over this by now.(Began in Feb. 2011 with the diagnosis) And I'm simply NOT."

    Seriously? I mean seriously?! That's only five months! They are lucky they aren't in my life. I would poke them in the eye with a pointed stick if they said that to me.

    Honestly, how irrating. I will send you the pointed stick. :D

    Oh, and don't apologize for needing some support, because your issue isn't as life threatening as some one else's. Of course, I need to follow my own advice on that myself. I feel bad complaining when others have it way worse than I do. It's all relative, sweetie, and we are here to support, encourage, and help one another.

    Someone...
    Is she old and a major annoyance to you most of the time....LOL.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    Skiffin16 said:

    Someone...
    Is she old and a major annoyance to you most of the time....LOL.

    John
    Lol. No, I wasn't talking about her. I was quoting from Rubytoos up there.

    Please, and she is driving me insane. I just went to make some warm milk at midnight to drink with taking my antibiotic, when I opened the microwave, apparently she decided to put a pizza in the microwave with no plate under it, and then cook it until it blows up. It took me twenty minutes to clean it out before I could make my milk. :-/ I won't even go into the cucumber and carrot pieces I found all over the floor. I'm so tired. :( Is it a wonder my blood pressure is high?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
    sweetblood22 said:

    John
    Lol. No, I wasn't talking about her. I was quoting from Rubytoos up there.

    Please, and she is driving me insane. I just went to make some warm milk at midnight to drink with taking my antibiotic, when I opened the microwave, apparently she decided to put a pizza in the microwave with no plate under it, and then cook it until it blows up. It took me twenty minutes to clean it out before I could make my milk. :-/ I won't even go into the cucumber and carrot pieces I found all over the floor. I'm so tired. :( Is it a wonder my blood pressure is high?

    Tossed Salad
    LOL, maybe she tossed her salad....better be on the look out for the dressing, might be in your shoe.
  • rozaroo
    rozaroo Member Posts: 665
    #13
    Skiffin16 said:

    Month or Two...Not
    If you add rads to the equation, you are still actually cooking for a month or so after the last rad session....

    It's a very slow recovery process...measured more in weeks and months versus days and weeks....

    Best,
    John

    Tired
    I am 17 month's post treatment & am still tired! Try to eat healthy & do push myself out the door to get moving. My oncologist mentioned 3 year's before feeling up too snuff. It also depend's on how much treatment was given by way of radiation etc. I truly believe him as I am living it.I know there are quite a few people out there that simply don't get what we have been through. I do know that i can feel great one day & suffer the next. Two step's forward & one step back is how I think of it. If someone tries to give me advice & are not living it I totally ignore or ask have they researched head & Neck cancer. That shut's them up very quickly.
    Wishing you my best
    Roz
  • Rubytoos
    Rubytoos Member Posts: 45
    #14
    rozaroo said:

    Tired
    I am 17 month's post treatment & am still tired! Try to eat healthy & do push myself out the door to get moving. My oncologist mentioned 3 year's before feeling up too snuff. It also depend's on how much treatment was given by way of radiation etc. I truly believe him as I am living it.I know there are quite a few people out there that simply don't get what we have been through. I do know that i can feel great one day & suffer the next. Two step's forward & one step back is how I think of it. If someone tries to give me advice & are not living it I totally ignore or ask have they researched head & Neck cancer. That shut's them up very quickly.
    Wishing you my best
    Roz

    Thanks...
    Thank you all for your support. And humor. Sounds like the microwave should be off-limits to a certain somebody.

    I do so agree that some people just don't get it. And I'm glad they don't because I do not wish this s--t on ANYBODY! Know what I mean?

    Hotter'n Hades here in SE NC so I am avoiding the outdoors today.

    My best to you all!

    Robin
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #15
    Rubytoos said:

    Thanks...
    Thank you all for your support. And humor. Sounds like the microwave should be off-limits to a certain somebody.

    I do so agree that some people just don't get it. And I'm glad they don't because I do not wish this s--t on ANYBODY! Know what I mean?

    Hotter'n Hades here in SE NC so I am avoiding the outdoors today.

    My best to you all!

    Robin

    Off limits.
    Yep. Wish I could get a lock on all the appliances. It's always fun when I go out and find the freezer door open. Or the really fun time is when I go out in the morn and find the stove burner or the oven on all night. Good time. :-/

    It was just hot here. Last week we had 101, so that was Hades. I had to get milk, and since I needed to go out anyway, I took Nizzy with me and we walked around the mall, and to the bookstore. It was nice and cool in the mall. :)

    Gotta keep humor.

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