coping with fatigue

Public Archive
1

Hi, I’m hoping someone will have some ideas for how to cope with being v v v tired! I finished treatment Sept 2008. Now I work full time and reducing my hours is not an option. Somedays I feel sick I’m so tired at the end of the day. I try to take a nap when I get home so I can spend a couple of hours cooking and eating a meal with my lovely supportive husband before I collapse into bed. It feels like groung hog day when the alarm goes off and I have to drag myself out of bed. I suffer from muscle aches when I’m tired too! I’ve spoken to Oncologist several times and have had blood tests for anaemia etc but all seem to be OK (not had last lot of results yet). I know I’ve got a very busy work week next week and I’m dreading it. Oncologist questioned my mood but I’m sure I’m not depressed (I’ve had depression in past and know my symptoms, early waking etc etc). He suggested may be legacy from chemo or side effect from arimidex. I try not to whinge at work as my colleagues would be sympathetic but would become bored with it (I know I would!).

How does anyone else with this problem, cope?

2

Hi there littlemrs

I am sorry that you are continuing to experience these bouts of fatigue. I am sure other users will be along soon to add their thoughts and experiences.

In the meantine though, Macmillan have some really useful informationn on their website which you may find helpful. I’ve given the link here to one of the pages of interest, but there is also lots more information available on their site too:

macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Fatigue/Causes.aspx

I do hope you find this helpful.

Kind regards

Louise
Facilitator

3

Hi, I know exactly how you feel. I am three years out of treatment this April and still feel very tired and have aches all the time. I went back to work full time but have cut down a day. Had chemo and rads but i’m triple negative so dont take any drugs. Have had blood tests and bone scan too but just dont feel right. Today I woke up and felt like someone had hit me with a plank of wood. I feel personaly that chemo must do something to you. I was fine before my treatment. Sorry I dont have any answers for you, but just wanted to let you know you were not alone love Lizzy

4

Hi,
I finished my chemo and rads October 2008,taking Tamoxifen, and I am still suffering with fatigue to a lesser degree. It is gradually improving over the months.I am sure the chemo does something to us. maybe it affects our liver? My main problem is brain fatigue. I can only work for 3 hours before my brain just goes into reverse gear, if you know what i mean. I hardly know what I’m doing! I go home, eat, and sleep for two hours. It’s not much of a lifestyle!
My Oncologist just brushed it off, saying it’s the result of chemo, but gave no suggestions as to what might help. It’s so hard to explain to people how you feel, which makes it even harder to cope with, in my opinion.

The only thing I found which helped me get over the general fatigue last year was going out for short walks in the fresh air. I wonder if the blood pumping round helps to flush out some of the remaining chemicals? Also, my GP said to drink lots of water, but that can be difficult when you are at work.

Take care,
Ann

5

I’ve been worried about fatigue as it’s been so bad since finishing treatment in December. I have spoken to Oncologist, GP and BCN and all say it’s normal. I was told that some people have no fatigue and for others it goes on for months even up to a year or years.

I was told to do a small amount of regular exercise and gradually build it up - the thing was I was already doing that! I was also told that the treatment was probably putting me into menopause which can cause tiredness too.

I was self employed before all of the treatment and haven’t been able to start back as I need to know I can fulfil a contract and deadlines before I take it all on.

To me the difference between fatigue and depression is motivation. I really want to do things but can’t always do them so I feel motivated. There are days when I can;t do things and I feel frustrated and it lowers my mood but that’s different from depression.

I do wonder Littlemrs if you maybe returned to work too soon? Most employers would be willing to work with reducing hours for a while (they may even have to by law I’m not sure about this but know that BCC have info on this). This may mean that even reducing hours wouldn’t lead to a pay reduction - if that’s the issue.

take care
Elinda x

6

Thank you all for your helpful comments, it’s good to know I’m not alone. I had a phased return to work over 3 months. Luckily my boss was very supportive BUT I had a big fight with occ health dept as they insisted i should be back at work 1 month after rads finished. Managed to get 2 months after rads but still felt exhausted after a couple of afternoons. Any way I’ve been full time for about a year now and struggling.

I had a letter from onc today, blood tests all ok(pleased about that) he suggests trialling tamoxifen for 3 months to see if that improves fatigue. I’m taking arimidex as was pre menopausal but hormones surpressed with chemo. I did initially take tamoxifen but as I’m taking anti depressant which same onc told me makes tamoxifen less effective I switched. maybe he’s forgotten this but he did write about % payoff of cancer not returning if return to tamoxifen. Only small increased % if go back to tamoxifen but am very very unsure whether to take the risk. My Mum took tamoxifen and had a 2nd primary cancer develop so feel history is against me. Don’t know whether I can continue to feel like this for further 3.5 years!

Sorry this is so rambling. Medical histories are always a tangled web aren’t they? Phew feel better having typed all that as haven’t felt able to discuss with husband (usually talk very freely about everything) don’t want him to get worried about increased risk.

7

Hi girls

I don’t want to depress you BUT i was dx May 08 and worked thro’ chemo and rads (albeit part-time) went back full time after rads and realised that I couldn’t concentrate for any length of time and just hit the proverbial ‘brick wall’ by lunchtime. I was lucky and got early retirement but there was no way I could have gone back to my old job. After I retired I was offered some work but after looking at the detailed spreadsheets I thought ‘I just can’t do this anymore’. I really feel for anyone going back to a high-pressured job. I couldn’t see myself ever being able to do my old job.

Lack of concentration and ‘fuzzy brain’ is a real problem after chemo.

Good luck.
Mal x

8

But does it all get better eventually? I’ve been told that women feel much better once they’ve finished taking tamoxifen etc. Sunny morning today, makes me feel happy if nothing else!

9

Hi All

I’m going through rad treatment at the moment and feel exhausted by the afternoons, so I’m dreading going back to work full time, I haven’t spoken to my employers yet about a phased return, I’ve been off for 3 months already (I had to have 3 ops which made everything else delayed) and the way I’m feeling at the moment I can see it being a while before I go back as I just don’t feel fit either physically or more important mentally. Trouble is that people see me ‘looking’ okay so think am okay!!!
Will just have to hope that my employers are sympathetic.

x

10

Hi Lttlemrs,

Sorry to hear that you are suffering with tiredness and fatigue. I did not have chemo but I did have rads and was very tired for months afterwards. I am fortunate in that I don’t have to work my advice is that rest is crucial to recovery. The cells need to time to recover especially from chemo and also a small amount of exercise I walk 30mins most days in the fresh air to get the blood/lymph moving this also gets rid of toxins. You might also find a supplement useful a good quality multivitamin Vidirian high five and to build your immune system try neals yard tincture echinacea and elderberry take 3 times daily 5 mls with a small amount of water.

I hope this is of some help.

Take lots of care of yourself

Very best wishes.

Nicola

PS: the odd massage is lovely too!

11

Hi Mandeville

Just a we bity of advice, please don’t go back to work too early. You are the top priority at the moment and I think you should be returning only when you feel well and truly ready. I delayed my return by 3 months and had a year off in totaly and am so glad that I waited till I was ready to - with phased return. You have to put yourself first with this b… disease to hell with what other people think - we know what it’s like. Spring & summer are on their way - enjoy, pleanty time for work when you are ready!

Anne xx

12

Hi anne

thanks so much for your advice about work, I know you’re right if I only I could stop feeling so guilty about being off…I was walking round Tesco’s this morning worrying in case anyone from work saw me as thought they would say ‘oh you are alright to go shopping but not okay to come back to the office’.
If they saw me afterwards when I have collapsed on the sofa knackered then perhaps they would understand…or maybe not!!

x

13

Oh how I know how you feel…
I had my results yesterday and slipped into Canterbury for M&S prepared meals before I got the bus home…
Do you know I just don’t know how I got home!
Collapsed on the sofa and stayed there until bedtime and never did consume my M&S meal!!!

I have a strong voice on the phone and people think I’m over it… They just don’t realise do they?
If I met anyone on the street I’d be thinking the same as you especially if they were work connected.

I hope you get a bit stronger as time goes by…
It just takes so much longer than even WE think!
I was interested in your comments earlier about effects of radiotherapy as I am approaching that next after my mx.
Maybe I could ‘speak’ to you again?

Take care, Welsh girl

14

Hi Welsh girl

Please contact me by e mail or through the postings if you want to ask anything about the rad treatment.
I didn’t sleep much last night so I’m feeling really down this morning, OH came back from work at 7.15am (he only works around the corner) to make me tea and toast and told me to stay in bed…ah bless him. I’m lucky as he has been to everyone of the rad treatments with me just to hold my hand. I have my first reiki treatment next Weds just before my last rad treatment, it will be so good to leave my green bag behind me at the oncology department afterwards (you are given a green plastic bag to put your clothes in when you go in to the room for the rad treatment and they like you to keep it and bring it with you each time…a bit like tesco’s reuse your bag system)

I’m going to try and take everyones advice and not feel so bad about work…the counsellor told me that I sound as though I worry about everyone else and not myself when I talked to her, so I am going to try and put everyones advice into practice…work can wait until I am better…well as good as I can be.
phillippa x

15

Hi Phillippa,

Thanks for your reply. It was good to hear that you’re going to put yourself first for once. Work can wait, but I know through a previous illness just how much pressure there is to go back too soon and the associated guilt.
I’m having radiotherapy after 3 operations, the last one being a mastectomy (I was diagnosed 7 months ago) and I am now 4+ weeks since the op and still feeling shattered! A constant seroma causes considerable discomfort until drained but otherwise I suppose I’m doing ok just taking one day at a time…
Frustrating… but ok although I envy your support at home!
He sounds very supportive.

I wondered how long you had to wait for your rads after surgery?
Were you a fit person before and how did the S.E. affect you?
I am bit of a weakling anyhow, so I’m wanting to know how I’ll manage the fatigue then, especially as I will have to use public transport at first…
I’m having 18 sessions.
I just wish I had more information about it all.
So I hope you don’t mind asking about your experiences.
Don’t see the oncologist for a couple of weeks yet…

Thanks again Phillippa.
I trust your mood will improve and you get more sleep very soon…
Good luck with the last sessions and hope the reiki is useful.

Welsh girl

16

Hi welsh girl

Have just read your other posting and realised that you are feeling very down so it probably didn’t help that I went on about how good my OH has been…sorry for that :frowning:

I had my last op on the 15 December (I was diagnosed in October)and didn’t start the rad treatment until the 25 Feb so a few weeks wait but the oncologist (mine is Dr Smedley at Kent & C’Bury who is really nice)said that everything has to heal before you can have rad treatment.

I was reasonably fit before all this started, never did much exercise apart from walking, ate well and worked right up to my first op in November, so I felt okay physically…mentally is another thing though. I had a very down time from when I was told at the start of December that they hadn’t got clear margins until the op on the 15th Dec.

After that I sort of gave myself up to the nurses and doctors and thought what will be will be. I am very lucky in that the surgeon got clear margins so no more ops and I got my result from Penny the Mac nurse before Xmas which made everything a little brighter for Xmas.
Side effects… sore from the ops and tired a lot of the time. As far as the rad treatment goes it’s been okay, although I was very scared the first few times. You have a planning date first where they take a CT scan, that made me ache as you have to lie with your arms above your head for quite a while.

The rad treatment is okay…my skin is red I have a sort of red square over the left breast and I get very tired by the end of the day. Its the daily grind of going over to K & C that gets a bit gutty, but when I moan OH says look at some of the other people in the waiting room they are far sicker than you are…I know he’s right but its still me and me alone who has to go down the corridor to the treatment room and put on the awful blue top!!

The treatment room is a little scary to begin with, the machine is called a linear accelorator (I had to google it to find out more about it) its a fairly large machine with an arm that comes down over you (not too claustrophobic though so don’t panic) the nurses then spend a few minutes lining you up with the lasers, you have to have your arms above your head (at least I do) which gives you pins and needles, the nurses then go out and within a few seconds the machine starts whirring…I found myself counting the beeps it makes each time and it seems to be about 32 for me.

It then moves around to the other side of you and does the same again. The nurses then come back in lower the table and off you go.
OH and I have found the waiting room a bit hard to deal with sometimes as there have been some very poorly people in there, and the decor (i’ll wait for you to see it) is a bit strange, but the staff are lovely, its always busy in there and I have had to wait a bit on some days, so as you are relying sometimes on buses I would try and get earlier appointments as the ones late in the day might not suit you.

You get a paper with all your times on and they mark them off each time, but I know you can ask to change these once you are there if they are proving difficult for you.

Have you thought of seeing the counsellor as sometimes it helps to talk? They also offer the complimentary treatments as well so when you are feeling better you could also try them?

If you need any other info then please ask - if I have learnt anything through this it’s that I can deal with most things once I know about it…its the fear of the unknown that is the worse thing.
Sorry for the length of the posting just wanted to give you as much info as possible.

Take care
Phillippa x

17

Thank you Phillippa for all the details you’ve provided. It really does help to know the basic framework of the world that I’m about to step into…
You’re right that the lack of knowledge while we’re waiting is the very worst time. The BCNs, bless them always say ‘you’ll be fine’ but I think we need the details to help us understand what this new world entails…Fear of the unknown is the worst part.
Thank you again for sharing your experiences.
I hope you’re coping with your last sessions and manage the fatigue as best you can. It does sound so exhausting.

I’ve googled all the unknown vocabulary as you suggested and I feel far more knowledgeable now. I just wish I had a date to get started so then I’d have something to work towards… This gap between mx and radiotherapy when you’re just trying to get stronger and heal properly is a real drag!!!
I’m almost 5 weeks on now and in the last day or two my tender areas have improved as has my dead arm, which is very comforting. Emotionally I’m not that good though… Everyone around wants you to be better but unfortunately I can’t provide them with the progress they want yet… I do wish it would all speed up and I could get back to work and focus on more than this cancer treatment… I’m just so disappointed that radiotherapy is necessary because originally I was told that my third operation would be the last stage!
As you can see from the time I’m still awake as I’m sleeping at all the wrong times. Life does become a bit chaotic at times doesn’t it?
Anyway, I’ll let you know how I get on and trust your fatigue lessens with time. Good luck.

And thanks again for all your kindness. You’re a star!

18

Hi Welsh girl

I was glad to help sorry if I went on for a bit but once I started it was like telling a story…well more of a nightmare than a fairy story :slight_smile: but I guess its because its still so raw even though I am a fair way down this cancer road.

I was awake about the same time as you, I get some nights when I just don’t sleep, I get about 2 hours then I’m awake, I must have dropped off about 4.00am…woke up when OH got up at 5.30… why does he have to make so much noise first thing in the morning…then went back to sleep till about 8.30…god knows what I will do when I have to go back to work!!!

I still get very down days like you…Saturday morning I kept crying for no reason whatsoever…well nothing except having BC…ha ha!! I think that everyone else just ‘wants’ us to feel better as that helps them, I was with family on Sunday and as wonderful as they all are you can see that they have cancer ‘fatigue’ as I knew that it really wasn’t a subject they want to talk about anymore.

They are lovely and ask me how I am but I know that they don’t want to hear the details…they just want me to be well and back to work and ‘normal’. Trouble is I don’t think that any of us who have had this are ever going to be truly normal again, it’s like a death in the family you never get over it you just learn to deal with it.

On a lighter note…When you do get into the oncology department at K & C take a good look at the horse on the wall mural in the corridor where you wait as my OH reckons he’s going to draw glasses on the dam thing this afternoon as he has had to stare at it for 3 weeks and it’s doing his head in :-)!!
I’m always here if you want a chat…by the way when is your planning appointment?

x

19

Hi Phillipa,

Have you survived your last cooking session?
Do hope so!

I visited the Radiotherapy unit last week and know what you mean!
Will look out for the ‘spectacled horse’!!!
Someone told me while I was there, that they’re going to paint it white all over quite soon. I think the distraction of the wall details may help many of us at the initial stages!

Hope your emotional strength is holding up. This is such a long and difficult journey and we get exhausted (!!!) but others as you said do get ‘compassion fatigue’ and don’t know what to say at this stage.
Too many of them think radiotherapy is ‘a walk in the park’ whereas it’s another important and serious extension of the cancer treatment, as I’ve found out through the posts here! Keep on taking every day as it comes and don’t be too hard on yourself if you slip back.

I’m at the stage after 7months, and 5weeks post mx that I’m going stir crazy! My little town is my prison as well as my haven as my body doesn’t allow any trip outside/upto London because I’m so weary after a couple of hours. So I suppose I’m bored! Visits are dropping off but this waiting period between mx and rads requires some excitement and at home I’ve run out of ideas!!! If I sort another drawer space I think I’ll scream…

Hey ho, I’m off to make another cup of tea and watch the News.
What more excitement could I desire?
Lovely to chat. Do hope you’re ok and resting.
No appt date set yet!

Welsh girl x

20

Hi welsh girl

Survived my last treatment…just! Had the wobbles last night and this morning I have been so emotional couldn’t stop crying this morning, my sister called me and I sobbed down the phone, then youngest son called and I did the same to him!!

In the end I left for my reikki treatment early and went and sat in the hospital canteen as I couldn’t stand being at home any longer.

The nurses were lovely to me though and have talked me through how I am going to feel over the next few weeks, apparently I will carry on ‘cooking’ for another 2 weeks and will feel even more tired (oh deep joy) I have to watch my skin and keep applying cream - have to keep it in the fridge then it will be nice and cold on my really hot breast!

Reikki treatment - well I enjoyed the relaxation part and could really feel heat coming from through the healers hands so I’m going again next Weds, would recommend seeing him yourself if you don’t mind that sort of thing. They are based in a small bungalow around the back of the old part of the hospital.

So I am now in bed, OH is watching the match, I’m going to speak to my boss next week sometime and explain about how I’m not coming back until I am really ready to - I’m going to take this recovery seriously as I want to feel fit and well again and try to forget the last 6 months if at all possible.

Lovely to chat to you to.

Hope you manage a good nights sleep.

Phillippa x