71174members
373949posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Need to have a grumble..... FATIGUE

22 REPLIES 22
dib
Member

Re: Need to have a grumble..... FATIGUE

hi all,
im almost 1 yr post surgery,came off tamoxifen 2 wks ago as i am having expanders out in 2 wks.I only work 24hrs a week now and get so very tired but cant sleep without a sleeping pill(i only take one once a week to try and catch up on some sleep).All this time i have considered myself weak because of feeling so down and lethargic,and i dont wish this feeling on anyone but its good to know it is actually quite normal.and i agree with everyone else about the lack of awareness,even my bcn said a couple of weeks ago that i shouldnt be looking so tired now,the fatigue should only last about 6mths!but how many of us say "im fine" when someone asks how we are when really i want to say,"well actually im exhausted and just doing a bit of housework actually tires me out", ,maybe we or certainly i,should be more honest about how i feel.Hate this bloody disease,.
Di.x

happynipple
Member

Re: Need to have a grumble..... FATIGUE

Hi people,

I am 6 years from dx, 5 months since I finished Tamoxifen, 3 months after profylactic oophorectomy and starting Letrazole. I like to add that, since I started cancer treatment, I've experienced fatigue. I believe I have chronic fatigue which, by the way, seems to be a pretty normal side effect of all the treatment/s for bc. My opinion is that, there seems not to be much research on the issue of long time side effects of bc. Oncologist and other medical professionals don't care much about it, creating a lack of awareness and encouraging a whole lot of unrealistic expectations after bc main treatment is finished.

happy_cat
Member

Re: Need to have a grumble..... FATIGUE

Hi All
I am 6 years post chemo and rads and 1 1/2 years post tamox.
I still have fatigue, not slept at night all week. Have bad neuropathy and last march ended up in A and E for a psych assesment as just lost it. People think you are back to normal so fast and I'm still not it's a totaly different me
still have lots of hospital appointments and been seeing a psych nurse , but that is ending and I am not ready to go it alone yet
Rehana

araminta9
Member

Re: Need to have a grumble..... FATIGUE

hi all
I'm guessing I'm one of the few who was post-menopausal when starting letrozole (femara). I was lucky to escape chemo but had three weeks of rads, and was wiped out by fatigue. My oncologisst told me it would be twelve months post surgery before I was back to 100% (and of course a year older!)

That was a pretty accurate guess, although even now, I still ocassionally get wiped out by tiredness if I do a lot, and have to give in and have a really early night, or a long lie-in, and I still reckon I need more sleep than I used to. But I guess I'm still here, and NED, so I'm grateful. I'm trying to listen to my body more now, which probably means, too, that I'm more sensitive to the need for sleep (I work in the entertainment business, so have to work late nights quite often).
Its reassuring to know I'm not alone though.

Bird
Member

Re: Need to have a grumble..... FATIGUE

Puffywhiteclouds (love ya name!)
I am nearly 18 months post chemo/rads/herceptin and I have to say that I to am struggling with fatigue. Its getting so boring! I sleep really well and yet every evening once I sit down I have to battle to stay awake!!! My body at times shakes because I am trying to stay awake but it clearly wants to sleep!!!!!!!! So very frustrating! I am wondering if some of it is to do with tamoxifen. The tamoxifen is giving me other probs too - so am wondering if its all related??? Either way its about time it stopped!!!
Bird
xxxx

Jezabel
Member

Re: Need to have a grumble..... FATIGUE

Hi Silver,
I am on the trademarked brand of tamox and feeling the difference. Hot flushes dont burn and no distressing anxiety that seemed to precede them. Still some fatigue but luckily my lifestyle can deal with it. Dreadful rain here all week but a good excuse to go to bed with a book. Cheers,

silverjill6666
Member

Re: Need to have a grumble..... FATIGUE

Hiya Jezebel
Aps is the brand of the tablets. Hope the new brand are working for you. How is the weather down under ? We are having a lovely few days at the moment so out enjoying some. take care
Silver

Sam_BCC
Member

Re: Need to have a grumble..... FATIGUE

Hi all
There is some really useful infromation about coping with fatigue on the Macmillan site, which you may find helpful. If you would like to have a look at this here is the link:-
http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Fatigue/F...
Best wishes Sam, BCC Facilitator

Jezabel
Member

Re: Need to have a grumble..... FATIGUE

Hi Ho Silver,
Thanks for the advice about not changing around too much. I've run out of options pretty much anyway. I dont know what APS is and dont recognise a lot of your brand names because I'm in Australia. Will stay posted.

Jezabel
Member

Re: Need to have a grumble..... FATIGUE

Hi,
I am not too familiar with all the brands but was on Genox (Australia). Asked the pharmacist to get another brand which he did...Sandoz and started yesterday. The pharmacist looked at me like I was an idiot and said there is no reason why a different brand would make a difference but I have read a few comments from people who said it did.
I am already on antidepressants as I have struggled with depression for about 20 years.
When I was on Genox I would have these episodes of despair about 2 minutes before the hot flush and it would end after the flush did. I found a few other people who had the same experience on other sites. I am hoping it goes away. It's like the dementers in Harry Potter if you've ever read it or seen the movie.
Would be interested to hear if anyone else has this experience. In the meantime will keep my fingers crossed for a change for the better. Joy

Ermintrude
Member

Re: Need to have a grumble..... FATIGUE

Hiya, I have been on tamoxifen for 4 months now - I have changed brands twice and now take Workhardt - I think thats how you spell it ! Well the SE I had on APS were so extreme shouting, crying, aggressive - it was so bad but now things are settling - I have hot flushes but use magicool to help - I have give up with makeup at the mo !!! still cannot sleep but think that is the way its gonna be - I have sleeping tabs and use them when I am exhausted but still cant sleep which is about twice a week. Just try to get a brand that suits you - you will get there. My Onc put me on a low dose anti depressant to try to help but I reacted against them so badly I would rather have the flushes !!!!Good luck and keep posting.xx

silverjill6666
Member

Re: Need to have a grumble..... FATIGUE

Jezabel you made me laugh. My OH went to docs to pick up my tablets they were wrong brand i am on APS brand and even though i have some side effects with tamoxifen i don't want anymore well i went back to docs and asked for them to change them she looked at me as if i was loopy lol I was ready for her i think i might have exploded if she hadn't changed them ! I read a thread ealrier in the year to try and stick to the same brand as changing makes the side effects worse so i have always stuck to this. Hope this helps others,
Silver x

Jezabel
Member

Re: Need to have a grumble..... FATIGUE

I've been on Tamox for five months. Tried 6 months on both Femara and Arimidex but they impaired mental functioning. I am feeling like this is how chronic fatigue must be. On top of the fatigue I feel light headed, joints ache, bladder capacity has left home, and hot flushes definately getting hotter. Also very clumsy!
Reading your post was so what I needed. I got out of bed a midday today (which was a total of 14 hours in bed!) I dont know if it will help but I slept mostly. I do yogalates, swim and walk daily. I love the swimming because there's no weight bearing and my feet are spared. Also go with other women in BC support group and the coffee later is great. I I feel like you that family and friends just see someone who has survived. Because the chemo and radiation is over I should be on the home run. Thats where the contact with other survivors is great.
I'm going to try a different brand of Tamox (on Genox at present). The pharmacist looked at me strangely but is going to get another brand in stock. I am trying to tell myself only 3 and a half years to go. Some women have also told me it can get better after a while. It is just so reassuring to find someone with a shared experience.
JT

PuffyWhiteClou
Member

Re: Need to have a grumble..... FATIGUE

Bumping this thread to see if anyone has any suggestions about coping with or even combatting fatigue.

I've had a really grotty few days with my fatigue so any advice would be welcome. Can't believe I'm still like this over 2 years since I finished chemo and rads. Planning a trip to the GP but doubt there will be much of use to come out of that.

GIJaneH
Member

Re: Need to have a grumble..... FATIGUE

I read somewhere that it takes our bodies as long to recover as they spent being battered....

People are very "odd" - when I went back to work part-time, everyone said how well I looked. NOW.. the same people are saying how nice it is that I look so much better than when I first came back ????!!! What the ????

I too am on Letrazole.... and I think PWC might be right - perhaps we never WILL be quite the women we were - we have to learn to love who we transform into (see Where Did I go thread, where everyone knows we're butterflies (or flutterbies)....

sleep? sleep? Some nights.. not others.. weird...

Jane xx

PuffyWhiteClou
Member

Re: Need to have a grumble..... FATIGUE

I echo what everyone is saying on this subject.

I completed 'active' treatment (surgery, chemo, rads) just over 2 years ago. Have been on letrozole since and I hate the fact that fatigue dominates my life.

EK - so much that you say strikes a real chord with me. I was desperate to have all my energy back but my oncologist has said that I've probably reached 'baseline' now and can't expect much more while I remain on letrozole. This does make me angry but, as time passes, acceptance grows and I just have to plan my daily life accordingly.

BTW, I love 'Fields of Gold' - makes me cry too though.

El_Katrano
Member

Re: Need to have a grumble..... FATIGUE

It's the frustration - pure and simple. Then worrying about it probably causes more stress which exacerbates the problem.
And I worry about money and close we are to everything going pear shaped.

I feel asleep earlier on the sofa for 2 hours, only woke up cos of something noisy on TV. Then I had a good indulgent self pity cry session because Eva Cassidys Fields of Gold was on and it always sets me off and the words are even more poignant now.

Feel a bit better for having a cry, because I don't often.

Maybe I'm expecting too much of myself, but with other people expecting it and ESA forms where I feel bad explaining myself and being desperate to "get back to normal" - I'm perhaps setting myself up for a fall. I've always been a really goal orientated person and with no end in sight from feeling rubbish, I'm getting very down.

So glad we all have this forum to vent and see we're not on our own.

xxxx

tillybob
Member

Re: Need to have a grumble..... FATIGUE

Hi El katrano, It could have been me saying All that !
I am 4 months post active treatment, still on 3 weekly Herceptin and letrozole, I too thought I was Super woman, went back to work part time , people think I am better now, tell me I look so well (NO I don't!) expect too much from me , then last week it came to a head and I had a meltdown, I have a frozen shoulder as a gift from Rads so that was n't helping and I simply could not carry on.Finally I have given in and realise I am not ready yet for normal life, I have to take a step back so I can recover properly. I am stage 4 but that is not an issue as yet but I worry if I don't let my body recover it will become a problem.
I have been very tired recently, now I do sleep better because I am more relaxed.
I hope you feel better soon , you are not alone in feeling as you do.
Jean

Magda
Member

Re: Need to have a grumble..... FATIGUE

Oh my I've got that t shirt too! I've given in and take a sleeper after a couple of those nights as I feel that I'm getting some rest even if it's drug induced. I find I can't sleep during the day either.
I dont know if like me friends and some family members see you as " recovered" because you're probably looking so much better these days and their expectations of you are more demanding. I know it's not their fault really cos we don't want to appear as moaners and complainers etc etc.

I think they probably understood things better In the old days when they sent people off to the country / seaside for 6 months to recover and recuperate !
Nowadays we have to fight to get more time of work , ESA chasing us to get back to work filling in forms that ask ridiculous questions to assess whether or not you're fit for work! What!!!! I got these forms when I was still getting radiotherapy and have just had to complete them again.
We are suffering from PTSD to start with never mind anything else. One day you walk into a hospital maybe a little apprehensive but you know youre just making a fuss about nothing maybe youre actually a little embarrassed about wasting their time and 4 hours later they tell you that you have cancer and you're in the system within weeks, chemo surgery, radiotherapy, drugs and we are supposed to bounce back after a couple of months .
Oh el Kat that's my rant over ... Funny I had enough energy to give off there 🙂
Magda

horsie5050
Member

Re: Need to have a grumble..... FATIGUE

Hi!!!! Lovely to hear from you. Well - I thought I sailed through chemo and rads..but I find I'm having an afternoon nap every day now! I Don't fight it - I just doze off for a hour or so, your body is trying to tell you something.

There appear to be quite a few ladies here up at silly O'Clock in the morning, judging by the times on their posts - you may as well join them..and not be on your own in the wee small hours.. xxxxxx

El_Katrano
Member

Re: Need to have a grumble..... FATIGUE

Hi and nice to see you with some hair 🙂
Thanks - not just me then. Some people have bounced back (well, maybe not bounced. Or maybe just not honest)

I'm finding it utterly unpredictable! I'm verging on meltdown too, not quite there yet but not far off, it's the NOT KNOWING how long it will last. At least with treatment there were timescales and cut off points etc. Though I'd really rather be where I am now than where I was at with Chemo. Then again, I'd really rather be how I was before I had cancer too!

GIJaneH
Member

Re: Need to have a grumble..... FATIGUE

YEP! Or I was 4 months post treatment. Almost had a meltdown with GP (unheard of) I was so tired.... However, EK, to give you hope, now that I'm 6 months post treatment, (and one year from surgery) I suddenly feel more like myself (Duracell bunny too)... Not sure it's 100% reliable, but definitely more me... had a really busy week last week following weekend on call, and I was OK. The month before when I'd had my weekend on, I'd been done in after it... I find the differences seem to be fortnightly (that I notice it).. Hang on in there! Love Jane

El_Katrano
Member

Need to have a grumble..... FATIGUE

Hi all

I seem to only come on here these days to have a moan (guilty as charged) Whoops.

Just need a grumble to people who actually GET IT. I'm 4 months past active treatment and 4 months into Tamoxifen and I'm STILL really fatigued.

I'm 36 - and I'm knackered CONSTANTLY.
I'm so so peed off at it all - I really honestly thought I'd be OKish by now and I'm not one to be a positive polly either! But when they said to me about recovery after all that is thrown at us, I thought "yes but they dont know me, I'm the duracell bunny and I never sit still for long"

Ha, the innocence of the first time.

Yes, I'm also on Tamoxifen but this is not helping.
I now feel like all support, emotional, mental, physical, spiritual has gone, because most people think I'm getting (grit my teeth so much my jaw aches) "Back to NORMAL" or that I should be.

Take last night for instance - absolutely shattered, did loads yesterday, felt fine at the time, went to bed exhausted. Could I sleep? No. Not a wink ALL night, no reason at all, not aching, not uncomfortable, worn out.

WHHHHHHYYYYY????? Then I feel stressed this morning because I'm so frustrated by it all and what this fatigue means for me.....

IT reminds me who is boss - it's my body who's boss and not me.

But the problem is I've tried all this exercise thing, pacing myself through the day and all the tips, No caffeine, blah blah. I cannot find a medium my stupid damn body is happy with.

I've felt myself welling up with utter rattyness over the past week, which is churning away under the surface and isn't like me. I just feel like biting everyones head off, then locking myself away somewhere for a week to be left on my own and then I want a hug and someone to tell me it's all going to be OK, such a gamut of emotion!

Anyone else feeling like this?