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Fatigue

6 REPLIES 6
WMJ
Member

Re: Fatigue

 

Pleased to hear you are setting little tasks for yourself Jan…but don’t be too adventurous, a softly softly approach is the best way. As Gillyflower says you need to be kind to yourself. 

I am struggling with my hands & feet and cutting is certainly not my go to task these days, as well as opening things such as tops or even pulls on the tins, I don’t mean coke or beer tins. 😂 However like you I can still do some cooking but leave the chopping in safer hands! 

take care Jan x

Gillyflower
Community Champion

Re: Fatigue

Oh Jan you don't need a kick up the backside....sounds to me like you've got the right mindset and approach, its just a case of slowly slowly does it!  I wonder sometimes if our psychological and emotional burden also contributes to feeling physically fatigued.  I've noticed sometimes that I can feel knackered yet when I'm doing something I'm really enjoying, or really love doing, the fatigue feels substantially less and I wonder how I got through the activity/event.  

A chair in the sunshine sounds wonderful, just what you need at this time of year.  And you're still managing some circuits round the house, which is a good start!  Be kind to yourself and lower your standards a bit so you don't feel like its too much (my excuse for everything these days haha).  Also, don't forget we are creatures of nature and our bodies sync with the seasons, so in winter its a time of rest and hibernation then hopefully as we move into spring you'll start to feel a little more energy.  At least, that's how I like to think of it 😊  Sending love and hugs xxx

Jaybro
Member

Re: Fatigue

Thanks Gillyflower.

You are definitely right - once you get out of a habit, it’s a challenge to get back into it. I had such muscle and joint pain after my primary chemo (apparently the chemo attacked my tendons as I was way too thin and it didn’t have much to get its teeth into!), I more or less reduced my walking to the minimum - round the house, end of the road, car park to hospital! I managed two circuits of the house/garden again today but there was a chair in direct sunshine and it was too tempting. What a wonderful feeling, the sun on my face in January!

I’ve taken up the suggestion of setting targets for the day, starting with a very low baseline. Getting up, washed and dressed is one, then the others vary - simple things like cook a meal unaided (I have no sensation in my fingertips - PN and PPE - so I’m lethal with a knife), throwing away dead flowers, tidying up a small area of a room.. I’m not up to handling the vac - far too heavy lol.

I do appreciate the advice I’ve been given. I guess it’s small steps but my onc has said this is how I’m going to be while I’m on cape and personally I know it’s not good enough. I don’t want to turn into an invalid but I’m behaving like one. Maybe I need a good kick up the backside lol.

Thanks again

Jan x

Gillyflower
Community Champion

Re: Fatigue

Hiya Jan,

I can empathise and share your frustration.  I noticed that the longer I'm on treatment the more fatigue I seem to accumulate.  Also, I was very naughty and stopped going for short walks last year due to foot skin issues from Capecitabine.  It was pretty clear that once I stopped going for walks I felt even worse than before with tiredness.  I need to get back into the habit but I'm asthmatic and winter walking is always harder and then there's the lack of motivation.  My partner has just bought me a Nintendo Switch Ring Fit to see if I can get into the habit of some activity at home (though I think pushing a hoover round is exercise enough, ha!).

I always ask my Onc if she can reduce my treatment dose if I feel like the fatigue is getting too much.  Usually she's agreeable to this and then I manage to pick up a bit of energy again.  I think the lack of sunshine in winter also doesn't help fatigue levels!  Sending you lots of love, hope you managed to get out for some walks xxx

Jaybro
Member

Re: Fatigue

Thanks WMJ

Maybe it doesn’t help that my husband does everything. I carried on working when he gave up teaching at 50 and had no plans to have another job since locally there was no need for postmen! When I took early retirement and offered to restart my half of the chores, he declined the offer and I’m not one for looking a gifthorse in the mouth. I should decide on a couple of things I would prefer to do myself and have a go. I did do two circuits of the house and garden today but it only came to about 600 steps and I was jiggered. My MRI next week is in a different hospital and I remember from my busier life that there are endless corridors to collapse in. I can truly see myself having to ask for a wheelchair, which would be the ultimate in giving in to me 😞 

I had paclitaxel for my primary treatment and, although nowhere near as bad as EC which zombified me, I was flattened for the first 4 days, then recovered just in time for the next dose. It’s scheduled as my second line of treatment but my oncologist and I aren’t keen as I already have PN from 2019 and cape has made it worse so I can barely do simple thing like buttons. But if it was all there was, I’d do it again. We have to, don’t we? I just don’t relish living like some kind of invalid when I have nothing but fatigue to render me useless.

Thanks again. I shall now think of two tanks for tomorrow. One must be a longer walk! Jan x

WMJ
Member

Re: Fatigue

Hi Jan,

I have been suffering with lack of energy so much since I have been on Paclitaxel. Unfortunately other treatments had not stabilised the secondaries in my liver. I have been on Paclitaxel since the beginning of September, initial weekly but now I am having 3 weeks on and 1 off, provided I can tolerate it. thankfully at my last scan things appeared more stable. Unfortunately I have missed a few treatments due to low neutrophils, sore hands and extreme fatigue. I understand exactly where you are coming from with the fatigue, some days I really struggle to do much at all and my life has changed dramatically since September. In comparison I am doing very little and seeing few people, due mostly to the virus and my weakened immune system. When my energy levels are particularly low,  I try to do little jobs throughout the day but really pace myself. It may sound stupid but I write down the few things I want to do, no matter how small, then tick them off as I do them.  This way I feel as though I am contributing and have some sense of achievement.  After doing a little task I sit down for a while then get up do something, such as sort a wash, empty the dishwasher etc and then have a or rather need a rest.  I save my more energetic days for doing pleasant things like a ride out in the car or a visit somewhere. 

It is such a struggle at times and I think we need to listen to our bodies. What works or is right for one person isn’t always for another. For me the most difficult part of all of this is accepting that this is what life is like at ‘the moment’ and I have to adjust my expectations accordingly. I don’t know how long I will be on the treatment, I guess for as long as it works or I can tolerate it but hopefully I can continue to take pleasure in the little things in my life regardless of the fatigue. 

Sending positive vibes to you 🙏🤗 xx

 

Jaybro
Member

Fatigue

Hi Everyone

I’m sure each of you has experienced some degree of fatigue and managed to get in with things but maybe it’s my age. I feel totally wiped out a lot of the time. Just having a shower can be my achievement of the day. My shoulders and back quickly begin to ache and I get short of breath - just from sitting (yes, Ive got a seat or I’d fall over). So then I need to collapse on the bed and recover, which can take quite a while. A friend visited on Saturday for an hour and that was that - off to bed again.

I know it’s ok to accept fatigue, as my oncologist has said this will be how it is now I’m so far into capecitabine (cycle 13 and hopefully still working). I really feel I don’t have a healthy cell in my blood but my blood tests come back satisfactory, certainly not requiring an intervention.

It’s disheartening to see the Macmillan advice, which acknowledges how debilitating cancer fatigue is, starts by saying stay active. How??? I really would like to know how others are coping and what advice you’d give me.

Jan x