BCG FATIGUE help

  • 12 replies
  • 66 subscribers
  • 434 views

I’ve now had my 12 BCG treatment. I’m 48 and female working full time in a high stress job with two young daughters on spectrum. I also started menopause treatment at 35 and I’m struggling with complete fatigue.

i had a pause in the initial 6 weeks treatment as I found it hard to cope. Every treatment I have seems to wipe me out. When I read other people’s experiences of a couple of days feeling rubbish I feel quite envious.

is their anyone else out there struggling with BCG. I just start to feel better around the four month mark then dread picking anything else up in my life because I know the treatment will start again. 

im wishing you all the best with your treatments Heart

  • Sorry to hear how wiped out you are feeling, I am sure working and having two young daughters and menopause treatment is all contributing to your fatigue. Do the CNS have any advice, are you allowed time off after your treatment? It does knock you for six but for me only a few days, not sure where you can get more info, hopefully someone on here might have some good advice. Best wishes BB

  • Thank you, I think just writing it all down helps. Just looking at the amount of things going on in my life lol.

    i don’t want to put all my symptoms down to cancer as it’s probably loads of factors. I came home today and slept until nowTulip. I also had my covid and flu jab the week after BCG so it’s probably that as well. 
    I am hopeful that I can rest this weekend as the girls going to visit their father RainbowHeart️. The cleaning can wait Stuck out tongue winking eye

  • Hi Pegasus,

    Sorry to hear your having a rather hard time of it but don't beat yourself up, it sounds like you have a lot going on all the same time. 

    I think most cases of operations and treatment can vary very wildy from one person to another. 

    As I've posted before I had a 1cm tumour and after my turbt with a stent as well I was in agony a lot of the time. Same with the cystocopy I just cannot handle the pain and discomfort. Some can and I've read peoples stories on here with far worse symptoms than mine and didn't seem to suffer from they say like I did. 

    Whilst very similar in a lot of ways it seems there is no one size fits all for this type of treatment or operations as far as I have been able to gather. Also therr often isn't enough information given to you if you don't know what to expect at least in my case. 

    Wishing you best and hope things get better for you. 

    ________________

    My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all Joy

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Hi  . I had a different treatment but did suffer from tiredness and fatigue. My GP prescribed minor steroids which gave me a boost and more energy. So maybe trying to get a GP appointment. Also if you can get to see a GP it may be worthwhile asking for a blood test. Low white blood counts can can also cause fatigue. My bloods showed anaemia which was remedied with a few injections. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Dear Pegasus

    I'm a 70 yr bloke  ( 7 yrs retired from quite a high stress job) !!In a valiant attempt to advise you .. I suggest your best bet is to have a longish detailed " venting" chat with your Clinical Nurse Specialist ( Oncology). I did exactly that only earlier this afternoon .. and I'm SO MUCH happier that I did. Inevitably this will only lead to the " next step" on your " bladder cancer journey  but you have to stick to the programme  !!!

    ( I'm diagnosed as pT1G3 NMIBC from initial Flexible CYSTOSCOPY with only local amnastheia ... OUCH OUCH OUCH !! , TURBT1, TURBT 2 and only recently completed my BCG1, BCG2, BCG3, BCG4, BCG5 with minimal isa side effect but BCG6 knocked me out with a metaphorical sledgehammer !! sustained 9 days of ( basically) chemical cystitis, much fatigue and outrageous incontinence!! ( all coinciding with  next appointment for GA  PRE Assessment Cystopy & possible TURBT 3??.  I screamed the house down in anger/ frustration/ insulting every member of the Pre Assessment team  I refused outright to submit yet another wee sample saying " I can't be offing  bothered" DONT DO THIS !!!! Ring your CNS Oncology  nurse and demand a long "venting" chat !! That'll work ( I hope you'll find !) Surely the Welfare system can lend you some support for your two kids on the spectrum !!!  Surely?? 

  • Hi Ciaran, It sounds like your CNS is a good listener and you feel much better about what is happening with your treatment. It is always good to get the information we need about side effects , scans & tests and what we should expect . It helps reduce anxiety if we know what we are dealing with and how to deal with it. wishing you luck with your future op

    Much love Angela x

  • Dear Angela

    My CNS is a GREAT listener ...and succeeded  ( although with me.. 'cos I'm prone to stress out/anxiety attacks and she's already seem !!) in my seeing the pragmatic sense of submitting a urine sample .. and as soon as Tuesday of next week to her rather than to the Preassessment " department" where my " name is probably ABSOLUTE MUD!!))....and rightly so.

    plus

    I'm also confident she'll communicate my apologies to a few of the Pre Assessment staff. They're just trying to do their job !!

    I'm a man but I'm just a little scared mouse really !!

    Ciaran

  • Hi Ciaran, I don't think you will be the first or the last to let off steam at the staff because you are afraid. I think they will understand your previous rant and will have forgotten about it. Glad she got you to see sense about the sample, hope things go well for you. Take care now 

    Much love Angela x

  • Dear Angela

    Absolutely !!!

    It's taken me this long to realise that I'm frightened !! Ridiculous  !!

    but...

    I'm frightened of nothing .. at all !!.. never have been !!

    never will be ?!!

    Thanks.

    Ciaran

    PS I'm often mistaken in the street as a dead ringer for Professor Brown from " Back to the Future". ( lol)

  • Thank you Si Simon Stuck out tongue closed eyes wishing you all the best too