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

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