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Nadi's avatar
Nadi
Member
9 years ago

So what's the real deal with fatigue once treatment finishes

I had a review by my breast cancer surgeon yesterday. All good as I knew it would be. I mentioned that I am back at work and the only thing that is really holding me back is the fatigue. I get 'hit' with these extreme fatigue episodes. It feels as if I am a phone battery that suddenly drains out and turns off. These episodes come on at all times of the day and night, no matter if I am doing something fun, something ordinary or while working. I feel like I have to sleep and I have to sleep RIGHT NOW!!! If I manage to lay down, if I am not at work, I fall asleep straight away into this deep deep sleep and when I wake up I am absolutely fine until it happens again. I am definitely not depressed or anxious, everything is normal except for these episodes of fatigue (and the dreaded hot flushes but even the flushes have been tolerable lately). My Vit D is good. I take B12. Nothing has helped.

My surgeon says that it sounds unusual and that she wouldn't expect I would be experiencing fatigue from treatment since chemo finished Feb last year and radiotherapy finished May last year. 

Just wondering if others experience the same fatigue that I do a year or more after treatment. Is this normal?
Fatigue

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  • SoldierCrab's avatar
    SoldierCrab
    Member
    9 years ago
    Agree with you @Nadi
     I am not able to do full time work I just get too tired. 
  • Nadi's avatar
    Nadi
    Member
    9 years ago
    Thanks everyone. I find I don't get a lot of understanding from my chemo onc or my radiation onc. They all say that it has been a while since treatment finished and I shouldn't be feeling this way. Oh, really? So maybe there are only a handful of us feeling like this then?  From what I hear, I highly doubt that.  Came home early from work today because I couldn't last.  I am only 48 and have 12 more years of work to go before I can retire and access my super. I doubt that it's psychological. I feel normal mentally/emotionally and I absolutely love my job and work colleagues. I also feel so guilty that I cannot work full time while hubby busts his chops to pay off our house before retirement. It may be the new 'normal' to feel fatigue like this but it damn well changes things for me, certainly, at the least, my quality of life. 
  • SoldierCrab's avatar
    SoldierCrab
    Member
    9 years ago
    I am now 4.5years since diagnosis and I still get fatigue like you mentioned.... I need to pace myself and I find there are times when if I dont I just can't process things.... I have learnt to take the nap for even 30mins to an hour then I am right to go again otherwise I am stuffed. 
    I agree we need to tell our oncos this info.... 
    Hugs 
    Soldier Crab xxo 
  • Karenhappyquilt's avatar
    Karenhappyquilt
    Member
    9 years ago
    I finished chemo and radiation last July, I also have the same experience with fatigue others have written here so eloquently.  Fortunately I am retired so don't have to work.  But I don't want to travel.  One small outing a day is quite enough for me.  So it is limiting my life.  And is so boring.  I read recently someone saying we need to report our tiredness to our oncologists, because currently they underestimate how many of us have ongoing fatigue.  Good luck to everyone Karen 
  • Brenda5's avatar
    Brenda5
    Member
    9 years ago
    I am thinking perhaps its chemo brain. Nerves and neurons do take years to come good. To repair it the body says sleep.
  • iserbrown's avatar
    iserbrown
    Member
    9 years ago
    Zoffiel said:

    And people keep telling me 'Oh, you look so well!'
    Exactly - I just say well I do try!  They should try it from this side, fatigue will it ever get better?  As I put up before What is Normal?  I can't get through a full day without fatigue washing over me like I have to have a nap! 
  • Zoffiel's avatar
    Zoffiel
    Member
    9 years ago
    It's awful. I can't remember being this tired after chemo ten years ago, now I have sudden bouts of exhaustion that make me think I'm going to pass out. It's like hot flushes, one minute I'm fine, the next I'm staggering. If I lie down I can't sleep and will work myself up to the most pathetic de-energised anxiety attacks. Horrible. Between that and the muscle pain I'm not a happy camper.
    And people keep telling me 'Oh, you look so well!'
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Hey Nadi!! Guilty!! Im 15 months post Chemo and I STILL suffer those episodes now so much so I cannot work beyond 3 days in my job. Ive told my Oncologist that but shrugs it off and says everyone is different, some it takes a long time and some are never quite the same again. Well that sucks!!! I get that life is different and we are to expect certain things, but they dont tell you or they downplay it all!! I think its quite alarming the side effects but whats more alarming is the Specialists attitude to it all and I have a very caring Oncologist but at the end of the day, they're not having treatment, never have and have no clue about it physically. I think ive come to accept the fatigue but trying to work out how the hell Im going to work for a living!!! as I have to for at least another 16 years! and NOBODY seems to get why you cannot manage everything the way you used to...you look alright!!!??? hmmm. So yep! I hear ya!! xo Melinda 
  • primek's avatar
    primek
    Member
    9 years ago
    I certainly have experienced exactly as you described but I am only 7 months on now. I don't have reserve energy any more so really do have to pace myself so it doesn't happen. And yes I've left fun social situations to go home and rest as just can't stick it out any longer. I keep trying to push my exercise a bit at it helps but then have to back off again for a while as those episodes worsen. I figured it's just a work in progress and I wouldn't think it that unusual. Maybe people just don't discuss it. Nadi...did you not also have further surgery? Kath x