I returned to work Jan 4 and have been really struggling with fatigue. I did a phased return, reduced my hours and took holiday too. The point to this is on friday I attended a "managing fatigue" workshop at my local maggies centre and it was lovely to talk to others also struggling. The main thing I've taken away from it is to not do too much on my good days as I need a reserve for my bad days. Also I need to accept my energy levels may never go back to what they were and that's ok. I've told my husband if he doesn't do more round the house to help he will be paying for someone to do it ( to be fair he does work long hours but could definitely up his game....)!!
Hi Juliemacca, I also had fatigue for months and months after surgery. It gradually improved although I reckon it was over a year until my energy was back to the previous level. It's frustrating too when you have a list of things to do, but have to give up early and have a rest.
it took well over a year for me to get my pre op energy levels back to somewhere near what they used to be, I still get quite tired and have trouble sleeping. I attended counselling as I was getting down and they gave me the same advice and also told me to hold back some energy for home, it's not worth putting all of your energy into your working all week, you end up with no private life.
Its nice to know it's not just me having this issue, at 37 I sometimes feel like a bit of a fraud admitting I'm tired and need to rest.
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Hi Julie, I finished my treatment (surgery, radiotherapy and brachytherapy) in early September last year and felt very fatigued for a good few months. Although I was improving by early this year I was still feeling the effects enough to decide to retire from work in February. That has helped a lot. I still sometimes think I haven't quite got my mojo back yet. You have certain rights at work as a cancer patient and your employer is obliged to make reasonable adjustments for you. That might mean adjusting your hours, workload etc. The macmillan team will be able to give you more info about that. On the other hand you might want to talk to your GP about being signed off work for a while. It's early days for you though and whennyou think about what you have gone through both emotionally and physically, it just takes as long as it takes. The best bit of advice I was given was to stop and flop when I needed to! Xx
The Maggie’s workshop sounds great. Fatigue is so hard to deal with and Arla you’re not a fraud. I describe myself as being like a toddler - I need my afternoon nap.
I have been dealing with fatigue from cancer treatment for years now - diagnosed in March 2014 and 34 of the 61 months since then have been spent in active treatment with the remainder spent coping with the aftermath. I’m better these days at resting when I need to and saving my energy for the things I want to do. And I don’t want to spend it cleaning so I have a cleaning lady pop in two hours a week. Money well spent. If you can afford it, do it. It doesn’t have to be forever, there’s no shame and it will make your life so much better. The pleasure of coming home to a clean house is significant.
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I agree with daloni, Arla your certainly not a fraud at all. Fatigue is probably something I find the most annoying and at times I wonder why I am effected by it so much, but we all must remember that its not something we can predict but can help to reduce it by being kind to ourselves. During treatment you kinda understand that your going to be effected in so many ways, but I think its after treatment that we can't figure out. It can hit anytime so you need to pace yourself, I think cancer has an aging effect on us and although we are young and feel we shouldn't feel the way we do, we have to respect it will have an exhausting effect. So one of the things I was told, " you don't have to do everything today" I think we have a change in priorities too. You look at life so differently. I find some of the best ways of dealing with fatigue is to not to try to do everything at once, take breaks and rest up, drink lots of water, water is important for helping with fatigue as dehydration has an extra effect. A good sleep pattern, well I think most of us have been effected by lack of sleep for one reason or another, so a cool comfortable bedroom really helps if getting too hot effects you. Doing something that relaxes you helps too just before bed. I was given an breathing exercise that helps a bit too just before bed. Plus don't fight the triedness, it sounds simple but you be surprised how many of us actually does that for many reasons.
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“Hope is our best friend”
I feel the same about the tiredness. had my operation end Nov (early stage so no further treatment) but I underestimated how long it’d take to feel anywhere near normal in terms of tiredness. I (foolishly?) went back to work in late January, full time with shifts, in a physically demanding stressful job, and it was a mistake I think. I’m not sleeping well and went straight into the menopause which is driving me mad with night sweats and anxiety, it’s been too much for me and I’m struggling. Just hope I feel better soon. I thought once the initial recovery was done I’d be back to normal- nooo, not for me, not yet. Under lot of pressure at home in various ways especially to work full time and also no belief that I have any right to still be recovering. Apparently I’m ‘better now’. I’m fed up! X
Sorry just re-read my post and it was so whingey, I know I’m lucky in the grand scheme of things. First three monthly checkup later, think it’s getting to me xx
Poor you! I think the check up pre anxiety is getting to you. I hope all goes well.
Meanwhile, a big hug and loads of love my friend
Thank you daloni, a big hug to you too and much love xxx
Thanks for posting this. I had my op in December and brachytherapy in February and I’m still very fatigued. Due back at work on 1 April but that has been put back to 1 May. I will have a phased return and thank goodness I only work 3 days. I’m trying to do more and am doing gentle exercise at a gym but am pacing myself.
No I don't think you were being whingey at all worried45, and no one has any right to say that your all better now and not recovering. I learnt very early on that recovery isn't that simple. We all recover at different times, some bounce back straight away and do excellent which is fantastic. But some take longer and fatigue is unpredictable but also the emotional effects too, its still a huge trauma for of bodies and minds. We concentrate on physical recovery and I think we forget the emotional trauma and the fatigue as we try to tell ourselves we shouldn't be tired.
I concentrate now with my emotional wellbeing as the medical side is getting frustrating but its up to the Doctors to work it out, not that it stops me worrying but I know I am doing myself no good at all getting stressed about it. So fatigue is hitting me very hard and really suddenly I can be great and then feel totally exhausted and be in the not sure what to do with myself. So I truly understand where your coming from worried. I k ow you have your three month check up and I hope that its all good but we do get hit with the check ups and the anxiety comes in, I have my next four month check on the 9th of May so not long now, its everything else that's frustrating but hopefully I will actually get my cardiology appointment next month without it being being cancelled for a third time, no fun at all.
Youre not whinging at all, just being very honest about the frustration of wanting and needing to feel well but having to cope with the physical and emotional side effects of diagnosis and treatment. We are all different and recover differently. Unfortunately people who haven't been where we've been can't really understand - they want us to be "better" and can't cope with or understand it when we say that some days we might not feel all that great. I hope your checkup goes well - maybe mention the fatigue etc there and see if they can offer some help in dealing with it. Gentle hugs x
Sorry to hear you're struggling, I can't add anything helpful to what's already been said other than to say it's still early days so be kind to yourself and where you can, use your energy to do the things you love doing. Gentle hugs x
There's no other way to put it....
Fatigue fucking sucks!
I've been dealing with it for at least 4 years, and today alone I've had a nap 3 times, even after a full night of sleep.
I just do what I can, when I can, then sleep for 2 or 3 hours - or more depending on how active I was. A 10 min HIIT workout is a 2 hour nap. An hour in the garden is a 4 or 5 hour nap.
However if there are other people around, like at Christmas when I head home, sheer stubbornness and a refusal to seem sick has seen me able to push through 2 or 3 full days of entertaining and being 'on' before I crash and burn. That's then me out of action for a week or two while I recover.
Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh
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