Hello everyone, I am really hoping that someone, anyone is feeling like I am… its so had to explain to everyone and now treatment is finished I am expected to get on with life as normal and the fact is I do not feel normal, in fact I feel absolutely shattered and as hard as I try to put on a brave face and to pretend all is well, it really really isnt. I feel like I am a walking zombie. Why is that I feel that because the chemo is done and the radio is done, that I am now fit and well and its business as usual… on the outside I look so well. Smoke and mirrors… I am good at that. I cant explain it to anyone and no one has a bloody clue how hard I am trying to hold it all together.
My treatment finished in Novemeber, following surgery, chemo, radio blar blar blar… I was back at work part time in November on a graded return and full time by January. I work 10 hours a day, am a single mum of two gorgeous teenage boys. Sometimes I walk in the front door, cook the boys tea and make myself stay up until 9 when I climb into bed and do it all over again. I have been to the doctors and am told it can take a year to feel like yourself again… I have awful pains in my legs and hips and feel 140 not 40. I guess apart from having a moan, I just hope that I am not alone out there with feeling this overwhelming pressure to just get on with it and that the tiredness and aches and pains are being felt by someone or one of you.
If I could I would lay on my sofa all day and feel sorry for myself… but its not really in my nature and that wouldnt put food on the table would it.
so sorry you are feeling tired and worn out, it’s horrible isn’t it?. Don’t worry about ranting, you’re not, you are just saying how you feel.
I do know exactly how you feel. I feel pressurised at minute to “get back to normality” ie full time work when I have just finished rads under two weeks ago (had surgery and 6 x EC chemo before that). My mum said I should get back to work as I have had 9 months off already! (yep I had a great 9 month “holiday”) and that just because I have had cancer I shouldn’t dwell on it all my life and just get on with things (easy for her to say), all this because I said I could do with another four to six weeks off to recover from the rads.
People assume because you have finished treatment, you are well on the road to recovery; if only it was that simple. Nobody seems to understand tiredness either - my work colleague says how tired she is all the time, but it’s a different type of tiredness to the one we feel. I managed four half days at work last week but hit “a wall” after my third day, and spent my fourth day acheiving nothing. I am just wiped out by the simplest of things, so I am just working when I can right now. I get aches and pains in my joints and get breathless easily, but I think this is from chemo & tamoxifen.
I think you may have gone back to full time work too soon - a ten hour day is long if you are feeling 100%, so goodness knows how you manage it. I know you have pressure to earn the money to live, but your health really is more important. Can you go back to working part time for a few months until you are feeling a bit better? My doctor is really good and gave me a phased return sick note covering two months, but will give me another if I need it.
I too am a single mum with a teenage daughter and no relatives nearby to help. I want to work longer hours as I desparately need the income, but I just can’t, so I am using up holidays days.
I had my last radio 12 months ago, and expected to get back to normal quite quickly. Ha - what did I know!!! I had a real slump in energy from June last year for several months and it was grim, also I had brain fuddle due to the femara. Clinic changed me to anastrozole which is MUCH better for me, and the tiredness is much less, altho I still have days when I retreat to bed/sofa.
I’m retired so it’s easy for me to go at my own pace, it must be so hard for you, working full-time and 2 big lads in the house.
Remember that your body had taken some punishment over the last year or so - surgery, nasty strong chemicals, nasty strong rays - never mind the emotional aspect, so it will take time to pick up properly.
sorry I don’t have any ‘tips’ except take care of yourself, and go back to see your breast nurse at the clinic - in my experience they are very concerned to help us get back on track and they may be able to do something for you. You’re not feeling sorry for yourself, you have lived on adrenalin for months and it is exhausting.
I know just what your saying, im exactly the same as you. Finished last chemo in Dec, Rads in Feb and now 3 months of lovely Tamoxifen! Im allways shattered, and i feel low more now than before. What I do find helps is going to the gym and making myself exercise,I also try and take a nap every day before my children come home from school. Without these naps I think I would be depressed. Im on a low dose anti depressant. I am due back to work in the next two weeks and very worried about how I will cope. Im also starting to get tension headaches which i think is the tamoxifen? Im ok as long as I can live a simple slow and stressless life style!! Im praying this will all lift and I will turn a corner at some point. I thank God Im alive, just need the patience to wait for my recovery and not put myself under too much pressure. I do hope things turn a corner for you Kelly
With love EB XX
Hi Kelly.
I feel exactly the same. I finished my radio 3 weeks ago and had surgery and chemo (4 EC & 4 TAX)before that. I’m now on Tamoxifen and have had 10 of 18 Herceptin treatments. Being the stubborn cow I am, I made a point of showing everyone how I was superwoman. Even danced in a dance comp partway through TAX. In some ways, doing all that I did probably kept me going, but in others I feel now i completely shot myself in the foot. To those on the outside, it now just looks like I’m making excuses, and stalling my return to work, to say I’m exhausted when the worst of my treatment is over.
It just feels like my body is now catching up on all its been put through over the last 12 months. I also have 2 young daughters (aged 10…yesterday…and 5)so keeping things ‘normal’ for them is tiring too. Making sure they don’t miss their after school activities etc. I don’t want my condition to affect them in any more ways than absolutely necessary. My youngest also has Type 1 diabetes so needs considerably more care than your average 5 year old.
I suppose in all honesty the problem is with me, not everyone else. I really need to learn to think stuff what everyone else thinks. I shouldn’t feel the need to justify myself to people regardless of their opinions. There are others who cry ‘exhaustion’ for having been through much less. A case of ‘those who matter don’t mind and those who mind don’t matter’? x
No wonder you are worn out! You have so much on your plate. I just want to send you a huge hug!
I just wanted to say that I am struggling too and I haven’t had chemo to go through so heaven knows!
I was out with friends on Friday and admitted to them that I feel worse now than when I was ‘ill’. I had surgery 31 Aug 2011, finished 4 weeks of RADS in November and started a phased return beginning on 50% and back properly by mid December.
Now I am so, so tired and it’s getting me down. I look beeping awful, sunken eyes with rings around them. I only work 8 until half four/five and by the time I’ve cooked tea and tidied I just want to go to bed.
By the time my wee boy is in bed I am well passed exercising. At least when I was off sick I managed to jog 3 or 4 times a week and I know that doing nothing isn’t helping.
Keep wondering if low dose AD will give me any more oomph? Anyone tried with success?
Hi, I’m popping in from the March chemo thread, hope you don’t mind. I really feel for you ladies. No-one, unless they’ve been through it can understand the exhaustion that you get from all the treatment. I’m due for my third chemo next week (6 in total) then rads for a month and Tamoxifen. It is exhausting and I just can’t imagine how it is for you all when the treatment ends. Its a lot of treatment. I think people basically mean well but in all honesty havn’t a clue what its like unless they’ve been through it.
I hope your tiredness eases and that we get a decent summer which will make all of us feel better.
Bettie
You are SOOO normal! My Onc wouldn’t tlet me go back to work until AT Least 4 weeks post rads and I left it 6… then thought I would be fine… Was I kidding? I was so tired, had cotton wool where I used to have a brain, and got SO fed up with not feeling normal. I kept saying to my lovely BCN “How long does it take”? As long as it takes, was all I got -not very helpful! (I was diagnosed in late March last year, finished treatment end September) Somewhereh along the line I read that it takes our bodies as long to recover as they spent being battered. For me, that meant I might expect to feel normal by Easter this year. And I do. More or less. I certainly feel loads more like I used to, and with some “bounce back” ability too. So, yes, that is a year, and you probably don’t want to hear that, but please be gentle with yourselves. hang on in there… Jane xx
PS I put on a link to “the spoon theory”, but it has been removed. If you put that in your search engine, you should find it. If not, PM me. I heard about it on here and found it more than useful in the slow recovery phase - it helped me to cope…if ever you read in a thread that one of us has “run out of spoons”, you’ll understand! Benchland has a permanent stock! J xx
It’s really early days for you yet. It takes a while to feel anything like normal.
I read somewhere (can’t remember where) that it takes a month for every month of treatment before you START feeling like yourself, and I would say that’s about right.
I had treatment for 8 months and it was about that time afterwards before I felt anything like myself. I didn’t really feel ‘back-to-normal’ until 18 months plus. It’s a gradual process and you don’t notice it immediately. but it does take quite a while.
Go easy on yourself. Your body has gone through hell, and it needs time to recover. Don’t expect miracles.
It will come though.
I’m SO glad I came across your post cos I feel just like you! I had MX last November, then chemo and now on hormone therapy - this is a recurrence for me as 16 years ago I had a lumpectomy, rads and tamoxifen. I finished my chemo at the end of April and thought that after a month or so I would be raring to go back to work and normal life - not so! I am usually so positive and loads of energy - no kids at home like you - but 2 jack russells that need walking twice a day which is normally not a problem - oh and a supportive partner so what have I got to moan about?? But some days I just feel so unmotivated, no energy and can stare at rubbish on TV or just into space for hours - ridiculous! I am under no pressure to go back to work but feel I should really be starting to think about it but the thought just makes me feel depressed - all the palaver of wig, make-up to look half decent having hardly any eyebrows or eyelashes and the commute into London - no thanks!! We are going for a holiday in a couple of weeks so perhaps I’ll be re-energised when we get back. So, sorry to rant and moan cos you have far more on your plate than me specially with your long hours and 2 teenagers to look after - only advice I can give is to only do as much as you possibly have to and any shortcuts you can make like easy or ready meals might make a difference. I guess we are all different on how long it takes us to start feeling normal again so just don’t beat yourself up about it - see I can tell you but can’t tell myself - its like a guilt thing - like you say - people say “oh well your chemo is finished now you should be fine to get back to normal now” but it doesn’t feel like that to me!
I hope you have family and friends that you can be totally honest with and explain exactly how you feel. There is a video on here my Macmillan - a bloke called Denton talking about his experience with fatigue after cancer surgery which is quite interesting - just confirmation that it is real and not just in our heads!
Lots of hugs!
Jan
Having just read all the posts above I think it is really early days for all of you (and me included). I was diagnosed in November 2010, had 4xAC and 4xTaxol chemo each 2 weeks apart, then had surgey followed by 4 weeks of rads. I went back to work full time in August last year whilst still having Herceptin every 3 weeks. And like you all had everyone assuming that I was fine. But whilst I managed to keep it all together work wise, it is only in the last month, having finished Herceptin in February this year that I have started to feel more normal. I am not quite as shattered at the end of the week as I was at the start, and interestingly enough a lady I work with who went through all this 6 years ago said I now looked like I had lost the greyness of cancer treatment from around my face. I hadn’t noticed it but she obviously could tell having been through the same herself. So my advice, is tell anyone who hasn’t been through it where to go and what to do when they get there, and stop being so hard on yourself. In the whole scheme of things, if you want to flop on the sofa just exactly what is the problem with that???
Have been reading your posts with interest. Hope you don’t mind. I had my DX in May 2010 followed by surgery, chemo and rads. Am now on Tamoxifen. Due to go for my annual mammagram next Tuesday and since I have received the appointment I have really wobbled. I am feeling very low and tearful and just don’t want to be bothered with anything. Last year it didn’t bother me probably because I just saw the mammagram as proof that the treatment had worked. This year I am so scared that they are going to find another tumour (probably because my first breast cancer was only detected by mammogram). Not a day goes by without me thinking about breast cancer and I worry about every ache and pain. I feel exhausted most of the time and don’t recognise the person I have become. I have also lost all my confidence and find it difficult to make decisions without questioning myself. This is not good as my full time job involves me constantly making decisions and planning ahead. I have days when my head feels as if it has been stuffed with cotton wool and my short term memory is chronic. I told my BC nurse all of this and she tried to reasure me that this is all normal but she also suggested that I speak to people who have been through it. Please tell me I am not going mad!
Coming into this discussion in 2015! Looking for answers as to why I feel so tired. Diagnosed with primary bc Sept 2014, lumpectomy Oct, strong chemo Nov -March 2015, Radio April and currently on 3 weekly herceptin. Diagnosed when my baby was 9 months old (he’s now nearly 2 yrs) and I was on mat leave. Just back to work (15 hrs a week) and feel absolutely shattered!! Far worse than I did post op, during chemo or radiotherapy. Feeling a bit hacked off cos feel like after over 2 years upheaval (some nice as in having a baby) i thought things were getting back on track and i was getting back to myself (and also there’s the worry that there’s more to the tiredness). I’m 37 and was pretty fit before all this (even during pregnancy) and even managed to get back to aerobics after my radiotherapy. I can see from other people’s posts that it takes a long time to get back fully to feeling well but I felt ok for most of my treatment. Anyone else had this time delay?
Oh should have said I was off work for 20 months in total (inc my mat leave which was cut short) and I work in a hospital so the emotional side of seeing patients can also come into play.
Claire, I’m right there with you! Also dx in sept 2014, chemo October to April 2015, recon in may, rads in July. So I’m about 2 months post treatment and absolutely exhausted.
I’m older than you at 48, have kids aged 10 and 13. Was made redundant mid chemo and no where near ready to look for a new job.
I’m doing yoga and combat classes to try to re-energise, and the odd bit of riding, but have to have an afternoon nap before school run and dinner, homework etc.
I had a full blood count to check no underlying deficiencies, all clear so just a post chemo/rads thing.
It’s tough when everyone thinks you look well and treatment is over. The spoons theory is very good!
So not looking forward to Christmas stress but picked up the first few stocking fillets this week.
Hey Guys…was diognosed on Dec 30/2014 aged 40 with triple negative. Finished chemo may/ 2015, almost a year now and still feeling tired and have no patience what so ever. I think everyone expected me to get back to normal i did too, but i really have’nt.( plus i had a bit of a scare 3 weeks ago but mamo and scan was fine) I’m finding it hard to be honest,… to…get over the fact i had this disease went through all that trauma of chemo, lumpectomy then 3 weeks of radio. it was like …how can i explain it…a whirlwind! Now everything should be normal…right? Nope!! I can’t explain how i feel…if i could i think i could do something about it. I feel out of place. Does any1 else? xx
Yep, i know where your coming form kellyjo71, I’m tired achey and irratable not to mention no patience even after a simple food shopping trip. I have to take my car now ( used to go in a friends car) as i have to cut it short most of the time to come home because of the aches. I’m a house wife with children at home, 19yr old triplets and a 14 yr old. They do help a lot but i have no energy what so ever. And yep i’m now 42 but feel 82. My breast care nurse said the aches could take up to a year to go (it’s almost that now) but no sign of them getting better yet. Simple things like light housework with tire me out and then after i stop bad knees ankles and sometimes wrists. I also put on a face for ppl as they expect me to be fine now, and it’s too much trouble to try and explain to them that i’m not really fine. Have you got close family that can help you out? And your definatley not alone either. :smileywink:
Look at all you amazing women coming together here, for group therapy, cos that’s basically what it is, and what this Forum’s all about. And why it’s so dear to my heart… Has helped “pull me up” many a time.
Doesn’t it make such a huge difference to chat to people who DO KNOW, have directly experienced and ARE experiencing what you are. I know it’s through the ether and not quite the same as face to face contact, but it still and CAN all help.
I’m often saying, I truely take my hat off to you chemo-ers. Facing and dealing with just the Diagnosis and surgery is difficult enough, without your body being bombarded by powerfully strong drugs and radiation.
WE keep talking about the “NORMAL YOU”, and those around us who haven’t experienced BC keep talking about the “NORMAL YOU”. The truth to me is - after what we’ve experienced, we’re not ever likely to get or go back to what we used to consider “normal” for ourselves.
I think we have to learn to accept that we have a NEW and DIFFERENT “normal” than we USED to HAVE. Do you think.
Jane - I made a point of reading “The Spoon Theory” - excellent stuff. Plus, I felt very sorry for the girl who wrote it.
To all you lovely ladies. I’m a year post treatment and know exactly what you mean. You have to accept the new you! I went theough my treatment alone and it was scary a whirlwind like Jackie said. Everyone expects you to be back to normal whatever that is. Found ot particularly hatd at work but thats another story!!!
I dont want the old Normal Dizzy Dee back good riddance to her, wasting her life swesting and worrying about trival things that dont really matter. I embrave the new Fizzy Dee whos determined to life what life she had to the full!!! After treatment I met an American ex marine and tbings went really well. I move over to Washington DC tnis August as have got a teaching job over there. Hang in there girls there is no way the pre BC Dizzy Dee would have grabbed life bu the balls!!! Now i do and i dont give a stuff!!! Heres to hot flushes, menopausal maddness and really living and apprecisting life!! ???
