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Will this fatigue ever go away?

31 REPLIES 31
gooseberrygirl
Member

Re: Will this fatigue ever go away?

Hello Ladies,

 

This is a very interesting thread. I had MX Two years ago full Lymph Clearance, Chemo and Rads, Then a Second MX a year ago. Itake Tamoxofen now, I worked part time, Breakfast and Lunch, I am a chef, but did not do the evenings. I went back to work In November last year, but found the days too hard going and reduced to 3 days a week. I have just started back "Full Time" This means a 12 to 13 hour day every day 5 days a week, I long for my days off, It is a dillema, Love my job , hate being on the breadline while still working hard ie: doing the 3 days a week, but feel I owe it to myself to NOT get exhausted, one of the hardest things I find is getting a work life balance.

I really feel I only have half the energy I used to have, it is the evening shift that is the killer. How much is too much and I hate the feeling I have that I have a window of health and do not want to waste it working but long for normality.

Sorry for the confusion in this post but really feel torn.

ukulele
Member

Re: Will this fatigue ever go away?

Hmm, I was doing fine, had my weeks of having a sleep each day, or having a rest, or just the occasional morning in bed, and then found myself with more work and no time and thinking I was ok, no longer needing the same rests etc. Well I am feeling it now again and need to figure what I can stop doing as the odd morning in bed sounds really helpful. Trouble is that several months after chemo and looking healthy means that people assume I will have the stamina to handle things and no longer say no.

moorcow
Member

Re: Will this fatigue ever go away?

just wanted to let you know that after a big day at work eysterday and with one pending tomorrow I am at my desk ( I work from home ) still in my PJs at 3pm...its just one of those days and I know I will feel better for it tomorrow - and thats 3 years on!

Southcoastbeachgirl
Member

Re: Will this fatigue ever go away?

Sunny I had the same thing recently. Started trying to do too much - just normal things as I was feeling a little better on treatment break - but ended up in bed like you for three days. Couldn't stay awake - just kept falling asleep, dizzy when I stood up and very wobbly. Am now pacing myself carefully as don't want to feel like that again. Breast cancer nurse said I should see GP as it didn't seem cancer related (!) and GP said not unreasonable reaction to all the treatment.
Fatigue is definitely the worst part of all this as its so hard to explain to other people and makes you feel like such a wuss when you are constantly drained. If it wasn't for the shared experiences of everyone here... It helps to know that this is part of recovery and that eventually things will get better. X
Guest user
Not applicable

Re: Will this fatigue ever go away?

It's left me totally debilitated.. Can't Hoover. Have to have a daily schedule of what to do or where to go timed. If I walk for two long I'm exhausted and if I am going out ... Can't do housework beforehand
A while ago I didn't realise what was happening and pushed myself to my regret. 3 days in bed feeling that I couldn't even speak. I am positive and glad I'm still around but the horrendous fatigue is hard to deal with.
Southcoastbeachgirl
Member

Re: Will this fatigue ever go away?

Can I just say a huge thank you to all of you ladies posting on this thread! I am 6 months post surgery & 3 months post rads and am still finding myself wiped out most days. I am on a hormone treatment break as I had a bad reaction to Anastrazole and have also had complications with a haematoma. However I had no idea I would continue to feel so drained post treatment and have yet to get back to work. All your comments give me hope that remaining positive & pacing myself, taking gentle exercise & a healthy diet will - eventually - help me to re- establish a ' new normal'. It is hard not to feel disheartened when used to a busy & hectic lifestyle when the simplest of activities drains the power pack. - great expression Dogmad84! - but it comforts me to know that I am not alone and that things will improve given sufficient time. Thanx everyone. Will raise a glass of wine to you this evening - only a small one * winks at screen* 😉
Dogmad84
Member

Re: Will this fatigue ever go away?

Thank you for your most interesting reply

.I was beginning to think I was unusual in the length of time it is taking for me to feel more my old self.  As you said, no one seems able to say how long it will continue for, but I understand that for some ladies, it never really does go away, although it remains in not  as extreme a form as in the first year or so after chemo.

The worst thing is packing too much into a day, then feeling as though someone has removed my 'powerpack' .When that happens, even if the ceiling were to fall in, all I can do is to sit totally still- even speaking when that happens is too much effort- until I get through it- usually after half an hour or so.  

I understand what the lady who works in the primary school sector means about returning to work too early, and its negative impact on your energy levels. I do think there is a more general issue here with employers not always being as supportive as they could be  with employees returning after cancer treatment- as others have said elsewhere on this board- unless you have direct experience of undergoing cancer treatment, people just do not 'get it'!!

 

moorcow
Member

Re: Will this fatigue ever go away?

Hi everyone - yes take care and be kind to yourself are the best words of advice - I finished my treatment three years ago this week I realise as I write this. For ages I slept every afternoon, then I didn't need to, but I was able to work part time for two years which really really helped - and you know what- I convelesced ...not a word we use a lot but when I was saying to myself "you should be back on your feet by now" - I used to say no hang on a moment you had two operations includin an MX, chemo which had you in bed off your feet for weeks at a time and then rads and now tamox - chill out girl and rest till your body says it doesn't want to rest any more.

For the past year, so from end of yr 2 post treatment to end year 3 I have had some energy, I now swim 1 k each week, do pilates, walk everywhere and do my allotment - and when i feel I need a rest I rest, still,

chemo brain eventually disappered ...but I think the tamox still has a bit of a drag effect.

Be kind, do what your body tells you it needs, and eventually, at its own speed, your body will come right again - I really think it will.

all the ebst

N

Guest user
Not applicable

Re: Will this fatigue ever go away?

Dogmad84

 

I too am still struggling with fatigue.  I haven't been on the forum for a while but did find it very helpful whilst undergoing chemo and rads.  My ops chemo and rads are 17 months behind me but like you have to pace myself because of the fatigue.  It is not as bad as it was this time last year (I had to get about in a wheelchair then).   I have also given up work.  I have to make sure that I really pace myself and know when to stop and not try and keep on going otherwise I will end up in bed.  MY GP referred me for an exercise programme and this has really helped.  It was for 16 sessions, I have finished this and now go to another class.  My onc referred me to a psychological therapist to see if that would help with the fatigue.  I was really unsure about this.  I am glad I agreed to go however, as I found it really helpful - we discussed everything from when I was first diagnosed and how to pace myself better.   I haven't suffered with chemo brain but I did end up in hospital a couple of times with the after effects of the chemo.  I too am also grateful that my bc was found and that I am still here but I do get so frustrated when I can't do things or go places.  No one seems to be able to tell me how long the fatigue will last or if I will be back to how I was before  all this started.  Take care and be kind to yourself.

Jo_BCC
Member

Re: Will this fatigue ever go away?

Hi all,

 

I have put for you below the link to BCC's resource pack ' Moving Forward' and hope you find it helpful.

 

http://www2.breastcancercare.org.uk/publications/about-breast-cancer-care/moving-forward-resource-pa...

 

and also to our Getting fitter, feeling stronger DVD

 

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/getting-fitter-feeling-stron...

 

Take care all,

Jo, Moderator

et1
Member

Re: Will this fatigue ever go away?

I finished treatment three years ago, Mx and Chemo, had TRAM flap reconstruction two years ago and nipple recon one year ago. I worked through my treatment (just took time off for opperations etc.) I am a primary school teacher. Last winter I hit a wall and just couldn't go on, due to fatigue. I changed to part time supply teaching and things are a lot better, though I still get very tired. I hope that a couple of years part time work and I will be able to return to working full time. I don't think it helped working through treatment at the start, I think I exausted myself. Like others have said we need to be kind to ourselves our bodies have been through a lot.

Dogmad84
Member

Re: Will this fatigue ever go away?

I have just registered on this forum today, and was so interested to read your thread about ongoing fatigue.

Chemo and radio for PBC is eighteen months behind me, but my fatigue continues.  It is not as relentless as it was when I was undergoing chemo, but nevertheless it still comes and goes regularly, and when it happens, I have no option but to lie down for a short sleep, and even on 'good' days, I have to pace myself very carefully, and can no longer cope with the jam-packed days I had before my diagnosis.  A day trip out means I am 'wiped out' the next day, and possibly the day after that, too.

I would love to go on  city break abroad somewhere, but I know that I am still not robust enough to be able to enjoy it.

I have recently taken voluntary redundancy from my job as a high school teacher, because my levels of energy are no longer what is needed to cope effectively in the teaching profession.   Chemo brain still effects my ability to be as sharp as I was before treatment, which is frustrating for someone in their early fifties, but I have had to accept that I am really not the same person I was before!

However, I am just so grateful to still be here, so this is certainly not a moan.  I guess it is a matter of adjusting to a different, quieter life for the present, and hope that the fatigue will eventually go away!

Guest user
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Re: Will this fatigue ever go away?

Just take it easy when you go back. In the meantime...enjoy your holiday.
SmileyBabe
Member

Re: Will this fatigue ever go away?

Thanks everyone, it's really hard and I have had to have extra time off but am off for a sunshine holiday onsaturday and that's been the only thing keeping me going. Doc has said he can extend my phased return? Not sure how that would work though? Anyone know, I'm currently being paid full time but if I change hours, apart from taking leave if it's not occy health extending it would I still get paid? Oh for a lottery win! But yes we will all get through this just don't know how long it will take!
GIJaneH
Member

Re: Will this fatigue ever go away?

Oh, I so rmember that feeling! Google 'spoon theory'. It kept me sane.

my phased return was too fast, no way I could have gone from half days to. Full day. I talked to occy health & it was changed. I used up backlog of annual leave to have four day weeks for ages once I was full time. i am now working full time, on call 13/30 nights a month, in an emotionally draining job. YounCAN get there. BUT , I think the key is to be gentle with yourself and not push your bodies..... Something we're not good at! The spoon theory helped because I could objectively think ',I don't have enough spoons'. Or, 'I'm down to four spoons and I'm on call tonight, so I should prob leave now (early) in case I'm called out.?" I left feeling I'd made a sensible choice, rathEr than feeling guilty cause I was leaving an hour early. I have learnt to take 'tiMe back' too, booking it in advance cause I know I'll do extra and if I don't book it, I don't take it.

It seemed to take forever and I remember asking BCN several times "how long does it take" and all I got was "as long as it takes"... Recently she looked at me & said "you've got your mojo back!' Don't know what one of those is, but she's right!

do not despair..... Go gently....

jane

Guest user
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Re: Will this fatigue ever go away?

I think part of the problem is that going to work gives us a semblance of normality, and we all want to feel back to normal, don't we? But we're not. The body (and the mind) take a real beating and it takes a long time (some more than others) to get back to anything like normal.
I know I went to work thro' chemo and rads, but really was not fit. I hit a brick wall at lunchtime and just had to go home to bed. I realised a year after treatment, that I couldn't do my job anymore. Luckily I was made redundant but with early access to my pension.
5 years on I'm fine, but I know that I still couldn't do my previous job. It really saddens me, but my brain simply doesn't work as it used to do. My short term memory is shot e.g. 'what are those vegetables called that look like carrots but are a pale colour?' 'What's that place called where you go when you're sick and have an operation?'. We laugh about it, but it's very fustrating. When I was going thro' treatment I put it down to chemo brain, but I haven't got that excuse now.
Take it easy
Mal
rosebud50
Member

Re: Will this fatigue ever go away?

Dear all,

yes it does get better!

I worked through chemo and dropped hours at the end. On tamoxifen, started upping hours and the had major relapse. Tears, tiredness, could not think straight, could not cope. i had nearly two weeks off. i reduced hours even more. I am just beginning to feel more energy and think that it will just take time. Talked to helpline nurse, who said we all go back too quickly. Pace myself, do not cook dinner if too much..... I expect I will need more time off, even if I have to use holiday on the odd day.

I do find it hard not to be full of energy, but I am still coming to terms with everything. I am getting used to a new normal.

holiday coming up, plan to get plenty of rest. Wishing everyone well.
HJU63
Member

Re: Will this fatigue ever go away?

Hi,
interesting thread. Finished chemo 6 months ago and rads 4 months ago. I have been on a phased return for 7 weeks now and have been telling myself that I am coping well. But I'm not. I am absolutely Kna****ed! I come home after a half day and almost immediately fall asleep in the chair. I went to a conference last week and am still trying to recover from it. At times I feel so angry that I cannot do anything like what I used to do. At other times I just feel depressed and wonder what level of stamina I will get back to and when. My worry is that I may never be like the old me but as yet don't know who the new me is. I have had to admit to myself today that I am struggling and consider whether to reduce my hours - feeling v low.
Helen

Guest user
Not applicable

Re: Will this fatigue ever go away?

Hello Smiley-Babe, so sorry to hear about the way you are feeling. Sounds so familiar - I guess the one consellation you have is that you are not alone so know that the way you are feeling is 'normal'. I have just finished my 5 year plan on Arimidex. Like you, when I went back to work 8 months after diagnosis, I found it really hard. An understanding employer is great - your employer is duty bound to recognise your illness but having an empathetic Manager makes life so much more bearable.
I planned to take a phased approach back to work but within a month the job had consumed me again! I managed by allowing those I loved and cared for over many years to help me. The OH started to do his own ironing!! Housework (which previously was very important) took a back step - it will be there to do another day! Didn't do anything that I knew could wear me out.
I persevered and things got easier (as well as 'learning to live' with a different lifestyle for a while). I think a positive attitude really helps, it is part of the journey but won't last for ever! 4.5 years in, I gave in again and took time off of work. I am 61 now so decided (and was fortunate enough to be able to) to retire but the fatigue has now kicked in big time since stopping the Arimidex so I guess this is just the withdrawal.
Please don't let it get you down too much as this is counter-productive. Let others around you help, don't worry about letting some things go (standards may drop!). Persevere, be positive - it will come to an end. Good luck and best wishes. Take care.
Lozzarooney1
Member

Re: Will this fatigue ever go away?

Hello lovelies - am working mornings only next week 😄 ... will see how I go as the following week is a short week (bank holiday) and I'm working from home on the Tuesday as I have an oncology review. i think its just a post rads one. Am wondering if I'm discharged then and just left to get on with tamoxifen? Not really sure ... have BS appointment in January and I suppose I'll get a mammogram in December (when I was diagnosed).
Ann - work asked me if I'd like to reduce my hours. Whilst I'd like to I can't really afford to so will see how I go. I still have a mortgage and about another 10 years on it sadly. Enjoy the sofa lol! Hope they sorry your pain out soon. I still have pains in my boob too including the nipple area which peeled badly after rads so I'll be interested to hear how you got on.
Hugs to all
Lozza xx
tired1
Member

Re: Will this fatigue ever go away?

This time last year I had just finished 7 months of chemo, surgery and rads and could barely put one foot in front of the other. I forced myself to walk around the small paddock at the back of our house once a day, just to prove that I could, but not much more. I was lucky as my parents moved up to help out with the children and my husband changed jobs so he wouldn't be living away during the week anymore. I couldn't do a thing during treatment and for a couple of months afterwards, not even driving, cooking, cleaning, gardening - just generally everything.
I went back to teaching for 1 1/2 days a week in Septermber (still on Herceptin) and now do 2 days. I can still do no more than that and I find that when I overdo, it takes a loooong time to bounce back. I have learnt to take more of a back seat (not natural!) but when I do feel exhausted, I look back at this time last year and see that this is still an improvement on what was then. Of course, there is always the worry that being increasingly exhausted means ....... but so far, I have managed to improve energy levels again after sinking.

Ann_W
Member

Re: Will this fatigue ever go away?

hi Loz
I,ve just finished all my rads and I'm glad I'm retired so I dont have to think about going to work cos I can just about to be bothered with the cooking and a little (very little) housework.
I'm still having pain from the surgery(i.e. very tender and sore constant stand up nipple catching on everything I wear) but they are trying to fathom out whats causing it I wish they would hurry up as cant put up with it much longer.
Sorry I know I should'nt grumble as a lot are much worse off than me.
Rant over I shall go back to my usual spot lying on the sofa.
Ann W xx
SmileyBabe
Member

Re: Will this fatigue ever go away?

Good luck Lozza and if your anything like me it sounds far too much, too soon, let us know how u get on with work and hopefully they'll be able to be more flexible with you, cheers Hun.
Lozzarooney1
Member

Re: Will this fatigue ever go away?

Hello lovelies
I started back on my phased return at the beginning of this month just working mornings. This week is my first week working 5 mornings and I'm so glad its Friday tomorrow! I fall asleep as soon as I sit on the sofa in the afternoon!
Next week I'm starting full days all week with Wednesday off... must admit I'm a tad worried about how I'll cope with it. I went food shopping yesterday after I worked in the morning and I was yawning the whole time! I'm supposed to be full time from June... but am wondering now whether its too soon...
After reading all your posts I think I'll mention it at work tomorrow and see what happens.. wish me luck!
Good luck everyone.
Lozza xx
SmileyBabe
Member

Re: Will this fatigue ever go away?

Oh quinny sorry to hear about your new cancer, good luck with the treatment and thanks for your post.
Yes I agree about the exercise fhifhi I try to walk as I'm sure it helps when I can manage it.
good luck with the chest ct Lisa and sorry your experiencing the same thing, hope it gets better for us soon is all,I can say.
liz it's so nice to hear how you are feeling now, it gives me hope for the future.
mal sounds like you really suffered but glad your fine now.
i finished work at lunchtime today and feel so much more positive knowing I don't have to go in until next Tuesday, I guess from what you've all said I'm just gonna have to see how it goes for me but sounds like it could last quite a while. May have to consider further changes. Thanks for all the replies and good luck to us all!
Guest user
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Re: Will this fatigue ever go away?

Oh the fatigue! It's truly dreadful and lasts for a long.................time!
I gave up work after a year of treatment......there was no way I could continue in my job. The fatigue floored me.
After 2 years I was recovering but was still not up to strength. It took 3 years.
5 years after treatment & I'm fine.
Mal
Guest user
Not applicable

Re: Will this fatigue ever go away?

Hi Smileybabe,
A year ago, 3 months after final chemo but still on Herceptin, I flew from Glasgow to London to see my new grand-daughter and I could barely walk the short distance to check-in my luggage and I needed a wheelchair at both airports. Last week I went down for her 1st birthday and the journey was completely different as I was able to walk to departures without any problem at all.

I found the fatigue the most frustrating of all and it seemed to take forever for me to manage the most menial of tasks without frequent rests. I am feeling so well now, although still get tired more easily than before. Today I have walked more than 5K and was out all day. Next weekend I am walking the 5K in Glasgow with some other women who have also had bc. I am 62 so probably a lot older than you and it does get better! For me, the recovery from fatigue was gradual - not one of those days when you wake up and are suddenly fighting fit.

Take care, Liz.
lisa79
Member

Re: Will this fatigue ever go away?

Hi SmileyBabe,
I'm 3 months out of rads and on tamoxifen for 5 months. Each week/month that goes by my fatigue is worse. Like you I'm having a phased return to work, 3 short days becoming 4 short dthis from next week. I am really struggling too. 'they' tell me it's normal and I have also heard it can be a year before we get our energy back. I don't know where it'll come from though! I'm having a chest CT this month as I had a lung problem last year just before dx. Hoping they don't find mets to explain the fatigue and chest tightness/back and shoulder blade pain...
Hang on in there.
Lisa
fhifhi
Member

Re: Will this fatigue ever go away?

I had my MX op in march 2012 and had my last chemo at end of august 2012. I too am still feeling tired a lot. I went to GP about it a couple of weeks ago and had bloods tested but nothing came up there so I feel I just have to put up with the tiredness. I hope things get gradually better cos I do feel my body is letting me down in terms of being able to do my work to full capacity and also getting my body fit again. It is hard to do my running sometimes but I try and force myself cos I feel doing exercise will combat the tiredness in some ways.

Guest user
Not applicable

Re: Will this fatigue ever go away?

i havent had a full night since last janury since i found it finished all treatment jan to but have just been dignoised with a new cancer in same boob they say it takes a good year for your body to get back to normal xx
ChristineP
Member

Re: Will this fatigue ever go away?

Bump

SmileyBabe
Member

Will this fatigue ever go away?

Diagnosed last may and finished treatment at end of Jan this year. Started back at work on phased return end of March. I am now up to 3 1/2 days and to be honest am really struggling, have had to have some days off as holiday as am so tired. I am trying to walk each day to try and get my energy back and I think it is helping but afterwards I can't do much. I'm finding work is very draining. My manager is being marvellous and has told me I can finish at 4pm instead of 5pm which does help, but i'm finding that I can't come home from work after working all day and do anything. I try to bulk cook when I;m not at work so I have something healthy in the freezer but that doesn't always happen and I end up eating whatever OH can cook which is basic so that doesn't help either. At my last onc appt the bc nurse said that for some women this fatigue never goes away, i was hoping to be able to work 4 days but now I'm wondering if I can even do 3 days. I work in mental health and haven't restarted any clinics yet but the work in very draining emotionally which has a knock on effect physically.
How have other people coped and how long has it taken to get back on an even keel? I realise everyone is individual and I have been very positive up to now but inside its beginning to effect me. I am very willing but just can't do it at the moment, i'm not beating myself up and am trying to listen to my body but I don't know what else I can do.....