i had secondary diagnosis of bone mets in upper spine in April 2019, taking letrozole, palbociclib and denosumab. Good news is that all lesions are shrinking/disappearing, bad news is the allconsuming fatigue. Life is very constricted now, and I’m finding it very difficult to handle.
Anyone got any tips?
Any advice will be gratefully received.
Grumpy
Hi Grumpy,
I just wanted to say ‘hi’ and empathise with you on fatigue. However, I do need to acknowledge your good news of the lesions shrinking/disappearing - that’s fantastic. I am also on the same treatment as you and just nearing the end of my first cycle. I am no stranger to fatigue, have battled with it and against it for years and for too many years I relied on sugar and caffeine to keep me going when my body was really telling me to rest. If possible, REST when you do feel fatigued - if you feel guilty or worried you’ll oversleep, just set an alarm. Try and get a bit of fresh air when you can, just a short stroll is fine, doesn’t have to be a long walk. Avoid sugary drinks and caffeine if you know you are relying on them to keep going. I avoid sugary drinks but I do love coffee and will treat myself to a Nespresso most days however I try and drink decaf if I know I am reaching for a drink due to tiredness. I wish I could give the secret to no longer feeling fatigued but you do have to be kind to yourself as it’s not visible to others - in my experience anyway - and I’ve had people over the years tell me how well I look when inside I have felt horrendous.
I sincerely wish you well and it’s just occurred to me that also up until the 21st December, daylight hours were shorter - hopefully with each day and those extra minutes of light, some energy may return.
Best wishes xxxxxxxxx
I have 20 years of experience of fatigue due to ME/CFS and I understand how frustrating it is not being able to perform at your ‘norm’. There is lots of good advice on ME websites (such as Action for ME) on how to pace yourself and how to come to terms with a reduction in ability, which might be temporary in your case. I too am single, and know what it’s like trying to cope with everything without help (which I can’t afford to buy in).
My tips would include
avoid ‘boom and bust’ whereby you go for it one day and pay for it for the next few days; try instead to find a level of activity which doesn’t drain you so that you always have a little bit in reserve
drop your standards and expectations
prioritise carefully so that you reserve some energy for fun things…see point 2…
don’t fight the fatigue, but listen to your body and drop activities/plans if you need to rest
bounce boundaries, don’t push…find a level of activity which you can sustain (your baseline) and build up very gradually from there by doing a wee bit more one day then resting the next, back to your baseline.
Congrats on the shrinking lesions and good luck x x
Hi Grumpy
I have just finished reading Cancer Fitness, if your looking for something that is research related Anna Schwartz book is probably the place to start. Its fifteen years old but after a quick search on the internet the research is still proving true. There is no magic cure but research suggest exercise can help, its not expensive off amazon and i felt so positive after reading it.