Post Cancer Chronic Fatigue

[ChocolateTurtle]

Hi , I have recently finished treatment for Stage 3 Clear Cell Ovarian Cancer. I had surgery in Jan 23, then chemo combined with Avastin, one cycle of Avastin on it's own followed by 5 weeks of radiotherapy in July/August 23. Then it was back on the Avastin every 3 weeks until about two and a half months ago. I've struggled with bad fatigue since I started chemo and it's got worse not better. I was hoping I would feel better since stopping the Avastin but I don't. I also have regular headaches, irritable bowel and joint pain (plus chronic pain that pre dates my cancer).
I just can't cope with feeling tired all the time. I live in a house share, I do not have anyone to help me on a day to day basis. I know exercise is supposed to help fatigue and when I feel able to, I do go out for a walk. My body is so weak though, my legs can end up shaking after a ten minute walk snd somedays I'm too tired to even shower. I struggle to keep on top of household tasks like washing clothes, shopping etc.
For those of you who have experienced this what helped? Any advice is greatly appreciated

Have you got a maggies centre near you? They often run fatigue management courses

Thanks Whatatado, I'm not in the UK so not able to access Maggies (unless they run the courses online?). I have spoken to my oncology team and GP and also asked for a referral to the hospital social worker. Social worker suggested I stay with my mum in England 'until I feel better'. My mum is 85 and suffers with anxiety and depression, I actually find it even more exhausting when I have stayed with her and at the moment don't even feel well enough to travel. There doesn't seem to be any advice other than try to exercise cos exercise helps fatigue. I do what I can but don't feel I can increase my exercise. I also get told it 'should improve soon' now I'm off treatment, but it hasn't so far.

Sorry to hear you're feeling so fatigued. My advice would be to roll with it. Your body is recovering from major treatment and needs time to heal as frustrating as that is. I had covid badly and literally couldn't walk for 6 weeks but very slowly built up to going up and down the stairs, then to my front gate, then down the rd and back etc. Took 8-12 months before I felt 'better'. Lookup ME and chronic fatigue advice. You shouldn't 'force' yourself through recovery or you may end up feeling worse.

I've got chronic fatigue and I don't know if it's the same as the fatigue that you are experiencing, but exercise is nit good when you are in a big fatigue flare up. It's not an indication of needing to get fit and push through it, it's an indication of needing to rest. Not doing so can really make it worse and last much longer , or permanently. Please please just rest, then don't over do it the minute you feel normal again. Just take it slow.
Don't despair, terrible though it is, it can and does lessen or go away for many people. Find out if anything you eat or drink contributes to your flares, for me msg and artificial sweetners are massive contributors to it, but it's different for everyone.

If anyone tells you do join a gym, that you're malingering, that it's psychological, run in the other direction. Make contact with the ME/ fibro community if you can.
Big BIG hugs, I understand how utterly terrible it is.

Also, you might not know this but you need some energy to fall asleep properly at night, don't overdo it till you collapse into bed and pass out, you'll get unrefreshing sleep.

Google Spoon Theory, it's quite a handy explanation.

Thank you. I've actually had covid twice while going through cancer treatment. The last time was about 2 and a half months ago at the same time I had my final Avastin treatment. So it's possible I have long covid plus post cancer treatment fatigue, I mean how would I be able to tell?

It's interesting that a lot of the advice to 'just exercise' has been debunked for ME/CFS/Fibro. I don't know if cancer related fatigue responds differently or not. I just find the advice patronising. I used to be very physically fit before I got cancer. If I'm too tired to get in the shower how can I go for a walk? I definetly do get overtired and then can't sleep sometimes

Google Spoon Theory, it's quite a handy explanation
This, plus it’s an easy way to explain to other people especially children.

Also Google “the 5 P's of Fatigue Management” . The ones listed can vary but probably includes Planning, Pacing, Prioritising, Posture or Positioning, (making use of other) People.

Thanks Snowday, that's really helpful. I have heard of spoon theory and pacing but I will look again. I hadn't heard
of the 5 P's so will definitely look that up