Hi,
It is 17 months now since I finished my treatment and I’m getting fed up with feeling tired all the time. I feel really tired from the moment I wake up.
I had a lumpectomy, mastectomy, chemo and radiotherapy and I am now on Tamoxifen. I had ME 20 years ago.
Is this tiredness normal and when does it get better? I have two children and work from home but I’m just dragging myself about at the moment. I’m 40 but feel like an old woman. I don’t feel any better than I did 12 months ago.
While you’re waiting for your fellow forum users to reply, here is a link to one of BCC’s publications called Treating Breast Cancer, which includes some information on cancer fatigue:
The above booklet also makes reference to a Cancerbackup booklet specifically on fatigue and lists contact details for Cancerbackup at the back of the publication.
Breast Cancer Care also runs Information Sessions on cancer fatigue in selected locations across the UK, here is a link to more information on the BCC site:
To find out more about any forthcoming events in your local area, please contact the BCC Helpline on 0808 800 6000 or contact your nearest Regional Centre.
I hope this helps,
Kind regards,
Kate, BCC Facilitator
hello, i still get very tired after 2 and a half years, i am on tamoxifen and have been told that some hormone drugs do have this effect i work 12 hour shifts with emergency services and i find every few months i need to have sick leave just to recharge, other ladies i speak to have had similar problems and they do say it gets better once off the drugs.Just rest when you can, hope this helps a little x x
I was told that it might take a few years after my treatment to get my energy and strength back. That was in 2004. I never did come back and now since being diagnosed with secondays in June, I struggle to go a full day without a nap.
I have started to wonder if I perpuated a viscious circle by doing less as it made me so tired that I made myself worse. I do have three children and manage to see to their needs but don’t have much left for anything else. Was on Tamoxifin for 3 years, Armidex for 19 months and now Exemtane. I think I had more engery whilst taking Arimidex as I started decorating and stuff but seem to have lost energy again now.
Good to hear from others suffereing fatigue. I am over a year after treatment and get very tired. No one ( except OH) around me seems to undertstand this and think I should be fine now and that I must be ‘weak’ in some way as not back to ‘normal’ by now.
I think a lot of fatigue is due to sub-conscious, background worry, which is very draining. This means we have ‘non-refreshing’ sleep. Having had many years of very intense stress, prior to diagnosis, I cannot remember the last time I woke in the morning feeling refreshed. Now, of course, I am also having disturbed nights, as I wake about every 2 hours. Hardly surprising we are exhausted!
Thank you Louise for the link, interesting reading.
Ann, I think anxiety and depression can be a factor. I’ve tried anti depressants a few times but felt no different. I sleep well but even so most of the day I am thinking about going back to bed.
What I tend to do if I want to go shopping is just target the shop that I want to go the most and then come home. I have a few times become stuck as in unable to continue because of tiredness. Horrible feeling. This of course puts you off doing things outside.
I know people that had the same as me and work as well as look after a family and that perpetuates guilt and self doubt. It is also difficult to express the tiredness because GP/BCN or Onc tend to steer you towards the depressed route. Having suffered from severe depression years ago before cancer, its not the same, for me anyway.
I do agree Ann that stress and worry is incredibly draining. I’m not sure its the sole cause of the tiredness if feel but probably does contribute.
This is an interesting thread. I have suffered fatigue on and off over the past 8 years as I was diagnosed with epilepsy then chronic fatigue syndrome and several years later an irregular heartbeat. Yes I’m falling apart! It is so debilatating and consequently I have not been able to go back to full time work since 2002. My current job is part-time.
Rachy you are absolutely right when you say that other people perceive it as a weakness, almost as if you are being rather pathetic and yes you should be over it by now etc etc. There is little sympathy with fatigue.
Since my WLE/SNB op in Aug I have recovered well and didn’t feel too bothered with fatigue. However, since I have had the radiotherapy which finished this week the fatigue is back with avengence and I do worry how I will cope with my scheduled return to work on 8th December.
Oh the fatigue is driving me nuts!!! Thought chemo and all the rest of it would be awful (and it was) but this is something else!! I finished treatment(radio) in Sept and went back to work mid Oct part time…I’m having herceptin but am currently on a wee break due to LVF level dropping but hope to resume soon…I have aknowledged I am a bit stressed, which I suppose is understandable, and I am trying to deal with that with help from my local Maggie’s centre. I feel people are expecting me to pick up and get back to normal now but the more I try, The tireder I feel!! It’s like wading through mud!! On reading other peoples posts I am shocked to hear that some people take a long time to regain strength…The burden of having 2 boys to look after, my own business and day to day stuff is not helping but these aren’t exactly things that I can change…I really do hope it gets better soon…
i have had severe depression and have had it again more recently but the fatigue is definately something different. I think my route for work will have to be part time too. If you don’t mind me asking, what job do you do, Laurasue ?
Hi Rachy, ironically I work as a medical secretary for a GP practice. I am responsible to 5 GPs for the audio typing of their referral letters plus all the usual secretarial stuff. This is done over 20 hrs a week but occasionally necessitates some overtime.
I work for a charity supporting peole with a learning difficulty. i am a team manager. i would rather do something more admin based but would need to brush up my skills and do some training. My job has alot of admin in it but also support hours and that is where the problem lies. They want all my paperwork up together and run the house and do unsocial hours !! It is not a job that can be shared with anyone else either.
I have found that I feel better (less tired) after having a massage. Can anyone recommend any other treatments to help?
My doctor has recommended acupuncture because he thinks that hot flushes are affecting my sleep and therefore making me tired. I’m finding it hard to sign up for acupuncture because of the needles and because I had acupuncture after each chemo treatment for the sickness and the thought makes me feel sick. Has anyone found it helps?
Dear Gogirl, I too don’t like needles so have not found acupuncture usuful, but I’m having shiatsu which is similar to acupuncture but no needles. They use their hands and put pressure on points, I love it and it is very relaxing. Halfway between a massage and osteopathy!! Leadie
hello
this is a really interesting thread and I hope you don’t mind me joining in…
I’m still halfway through chemo and have rads/AIs planned next, but my manager is talking about how she’s looking forward to me coming back to work, and the people I manage directly often email to say how much I’m missed and how they can’t wait to have me back. My problem is I don’t feel as though I can go back - its a senior management role - complex and stressful, full time hours plus (ie often 50 hour weeks plus work done at home) plus 2 hours per day commute on a good day. I feel guilty because they are all so lovely and I’m letting them down.
I haven’t told my manager yet that I want to retire from my job(I’m only 51, but don’t feel I can continue in this role, or with the commute) and have a meeting in January when I’ll discuss it - happy to go with part time nearer home.
I went back to work after first diagnosis 12 years ago - was only off work 16 weeks and it took me a couple of years to get anywhere near the ‘old normality’ and have had intermittent depressive episodes since, I take seroxat.
I’m increasingly exhausted now, its getting silly and getting me down - despite all the stuff above I am a fairly positive, stoic, optimistic person - or I was until this perisher came back.
Has anyone had a similar experience? I feel a complete wimp for not being stronger, but conversely, cross with myself for beating myself up about that!!
any advice etc most welcome
monica xx
I went onto this thread to get some idea of what to expect when I finish my treatment (just had 6th and last TAC chemo with rads in Jan) as I am keen to get back to work and normality as soon as possible but am very aware that I feel very tired and weak and unfit! I work full time (accountant) but only have a 10-15 minute commute luckily. I did try to work through chemo as much as possible but had pretty bad side effects and last month ended up admitted to hospital for 12 days with an infection. I now plan to return to work in Jan, around the rads, hopefully!
From what you say, with your history of this awful illness,and your age (I’m older than you so can get away with saying that!) you have to put yourself first, it would be too much for you, and both you and your work would suffer accordingly. Your work will understand and support you I’m sure. Get yourself fit and stronger first then look for something less demanding and closer to home, your natural optimism will get you through it. You certainly shouldn’t beat yourself up over it, you drew the short straw when you got this disease, not your fault.
Hi Monica , ifeel exactely as you do, I am 8 months post ld flap 2 more chemo to go. every time I go into work I get carried away and get such a posiitve buzz ,that i do want to go back full time. however like yourself dont think the old body i am 50’s will manage full time.also how do you do a managers role like yourself i am in management and at the moment cannot decide if i need the big light on or not.
Think I will go with the flow re phased return then when it gets to full time will tell them know. The flesh is to weak, and also i know it wont be fair to the team if i am playing with half a brain, they dont dererve that
i too have had deppression in the past, but i had done remarkably well
i was diagnosed 2007 i had surgery(lumpectomy,full lymph node clearance and mastectomy,chemo 6x fec)at the time of treatment i felt rough, and struggled with chemo, but somehow i had a peaceful feeling.
but for the last few months i too have been struggling with tiredness, low moods, and various aches and pains. the latest being a very swollen stomach, i look pregnant, and it feels so uncomfortable i cant get comfy in bed. the other morning i just broke down in tears and asked for appointment with onc to be brought forward, because im scared of how i feel, i too want to just sleep and sleep, and dont feel any better.
im not sure if its down to the medication im on tamoxifen, and bone strengthning tabs, for bone mets. but i want to get back to enjoying life, and living it to the full, not be too tired to bother.
sorry to rant, and sorry your all feeling crabby as well, one day hopefully we will feel more upbeat, chin up as they say.x
HI All , I was in teaching but have now decided that I can’t go back because of the stress of the job. I’m 54 and have been in the profession for about 18 years and have had enough. I’m going to do a bit of care work in the community now, on a part time basis and see how I get on. I’m not prepared to get into a lot of stress any more because I think that’s how I got my breast cancer
Best wishes
Leadie