Morning ladiesGot my Beacon magazine yesterday, love reading this, especially the stories of the ladies that have gone on to really achieve things since diagnosis. But the piece about fatigue this time made me feel let down. I think there are 3 types of fatigue - the normal healthy person one that is just tiredness at end of day. Second the after sickness / chemo / one that is general tiredness at any time of day - which as the article said can be helped by exercise / diet etc. But she did not mentioned the hit the wall, sledgehammer one. It happens to me less often now (3 1/2 yrs after treatment) but has come back more often lately after I succumbed to a flu like virus a couple of months ago. Taking a walk does not help, in fact it makes it worse. It is not only tiredness but you are brain dead as well. Hit last Friday, after work I had a 2 hr nap, got up at 4pm. Made tea, did washing then back to bed by 8pm. Slept all night, drag myself out of bed at 8.30am - repeat Saturday. Sunday, had a shorter nap and then Sunday night all over, couldn't get to sleep for a while and back to normal - up at 6am, no nap, bed around 9-30 to 10. So were is the info on this one??

It would help if there was more understanding and realistic expectations from others about the effects of treatment. Personally I found it helped to take the pressure off myself about what I expected too. Giving myself permission to go easy some days. Over 4 1/2 years since diagnosis I accept that I will never live life at the crazy level I used to and what’s more I don’t want to. I really do think putting yourself constantly under pressure to do what we think others want/need is a fast track to ill health again.We were diagnosed with CANCER not a head cold. You don’t just get over that. I live life the best way for me now. It is not selfish or self indulgent but absolutely necessary for my health. I strongly believe that and will not feel guilt about it. Going for a walk if you don’t get energy from that is not beneficial. Doing more of the things that DO give you energy is what CAN work. Getting rid of the guilt, being kind to yourself and doing less of what drains your energy. Personnally I do get energy from a walk if it is under my own choosing and not because someone else has told me I should or even because I think I should. My walks give me pleasure and a sense of achievement too, and that gives me positive energy. We are all different and need to find the things that help US.My life before diagnosis was so busy I never had time to work out what I actually enjoyed doing for myself. I now realise that is not really LIVING. I walked around so ‘heavy’ with the load of never feeling I had done enough. Now when I feel that ‘heavy’ fatigue I know it is time to ease up and do something to recharge. Yes it is definitely easier to reach that hit the wall point now and I definitely know this is the point that I can not push past anymore. For me it is not so much because I have been too physical but that I have not been doing things that I feel good about.No need to feel bad about it though, just recognise it is my reality check and time to look after me. I am very fortunate that the people who really matter to me DO (mostly) understand this too.

Deanne's comments strike a chord. I never had fatigue, worked through treatment. But as part of coming to grips with long term side effects, I learned (gasp!) that food and sleep don't automatically build energy, particularly when 12 hour working days aren't uncommon and you are balancing a pile of plates (metaphorically) most days! There's tiredness because you have been busy, there's chemo induced exhaustion and then there's failure to supply enough of the feel good stuff to keep you from running on empty. Cancer treatment causes one but can make one of the others so much more apparent! It's not about winding down but being a great deal more selective about where you put your energy and what boosts it.

I hear you! That hit the wall fatigue turned up again this week! Felt like I hadn't slept for weeks and a real drag for one foot in front of the other! Only bright spot is it's spasmodic instead of constant! I don't think the experts have experienced it and hence their response on fatigue is based around the two mentioned in the Beacon!

Oh gosh I thought it was just me. I've been to see an exercise physiologist who has said to me to only do workout at pushing 5 -6/10 in effort no higher. The idea being that I don't get over fatigued. I'm on holidays and for 4 days felt like old me. Energy etc. Yesterday I did 2 huge walks. Today I've spent it dragging myself around and now tucked up in bed until tea resting. Sigh. I will keep striving. But it most definitely is not like my old energy. I felt exhausted today from waking and despite a short walk in cool air and amazing views..no improvement.

I often think they don't believe me, makes me feel like a whinger, if they can't help they could at least be sympathetic. But it is a lot less often now, lucky as it impacts on my day to day life.

The Beacon - let down | BCNA Online Network

Romla
Member
8 years ago
It is an emotional roller coaster after treatment with side effects lingering for months and challenging at times to not get down .It's something little is written about in the literature we are given which is why this blog is so wonderful as we can share how we are going and realise we are not alone as someone else is experiencing the same. But yes I agree it would be very useful to know this earlier as it's clearly well known - it doesn't end for bc patients when treatment ends which one tends to think some in the community believe.
Zoffiel
Member
8 years ago
I'm six months post rads, nine months post chemo and over 12 since my recurrence was diagnosed. I still feel like shit. I'm a tough old bird and I want nothing better than to be done with the whole business. It is not that easy.
I'm sure the continual churn of new cancer patients in, old ones out (God knows there is no shortage of us) dulls the medicos sensibilities. Just great. Who is this all actually about, will someone remind me?
LMK74
Member
8 years ago
I get what you ladies are saying. My oncologist seems to think I should be recovered by now Coz I finished chemo in July. Umm no, I then had mastectomy in August then just finished 6 weeks of rads a month ago. I actually feel like I shouldn't mention how I feel now and like she thinks I'm making it all up. I feel like the life has been sucked outta me.
HIT
Member
8 years ago
I often think they don't believe me, makes me feel like a whinger, if they can't help they could at least be sympathetic. But it is a lot less often now, lucky as it impacts on my day to day life.
primek
Member
8 years ago
Oh gosh I thought it was just me. I've been to see an exercise physiologist who has said to me to only do workout at pushing 5 -6/10 in effort no higher. The idea being that I don't get over fatigued. I'm on holidays and for 4 days felt like old me. Energy etc. Yesterday I did 2 huge walks. Today I've spent it dragging myself around and now tucked up in bed until tea resting. Sigh. I will keep striving. But it most definitely is not like my old energy. I felt exhausted today from waking and despite a short walk in cool air and amazing views..no improvement.
iserbrown
Member
8 years ago
I hear you! That hit the wall fatigue turned up again this week! Felt like I hadn't slept for weeks and a real drag for one foot in front of the other! Only bright spot is it's spasmodic instead of constant! I don't think the experts have experienced it and hence their response on fatigue is based around the two mentioned in the Beacon!

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