It is 6 months since I finished treatment, have the all clear and generally in a good place but I either sleep for England or like now after a full days work, visit/care at my elderly mothers and about a 30 min doze on the sofa, at 2.30am am wide awake.
It feels like the chemo months all over again.
Anyone else experience this?
I suspect I am not alone.
xx
Hi LouJP
I’m sorry to hear you’re struggling. I finished treatment 6 months ago too but haven’t slept properly for about 9 months now. I’ve slowly become nocturnal, I’m awake until around 5 every morning then I sleep until my son wakes me and brings me breakfast, usually around 11. Some nights I have no sleep whatsoever and can do that for 3 nights on the trot. I can’t work because of the COVID situation at the moment but I don’t know how I’m going to manage when it’s safe to return. I put my problem down to being on morphine for 3 months last year which caused me to sleep for 14 hours a day which threw my body clock out. I’ve tried sleeping tablets, temazepam and zopiclone and even melatonin to try to regulate my sleep pattern but nothing touches it. I despair of ever getting back to normal and never feel well because of the exhaustion. As you say I’m sure we’re not alone, I’m sorry I can’t suggest anything to help and I send you my best wishes, take care x
Hi Lou
It’s a horrible position to be in. I have the luxury of being retired so being awake at 3am just meant I watched more TV or spent more time on here. Have you investigated your hormone therapy? Sometimes a different brand can do the trick. Sometimes it’s the medication itself, in which case your breast-care nurse should be your starting point.
I may be stating the obvious but there are several sleep apps out there and countless sleep hypnosis videos on YouTube, one of which controlled my anxiety for me all the way through treatment and beyond, though I rarely used it for sleep. Someone gave me a Fitbit for Christmas (rather hilarious considering my attitude to exercise even without all the joint/muscle pain) BUT the sleep part of it intrigued me as it breaks down the quality of sleep etc. I began to feel embarrassed at my low sleep scores and decided I’d give it a go. What I hadn’t realised was that I was failing to recognise when I was tired and was filling my time with brain-rousing activities. Now I watch out for the first sign of sleepiness (distinct from tiredness), usually around half 11, and make sure I’m all set up to go with it. All technology switched off so there’s no little red set-box lights to distract me. I’ve only had one bad night since Christmas and I sleep solidly. I’m not saying get a Fitbit but maybe you could try being more tuned into your body and catch the sleep signals at the right time for you. It’s taken me 5 decades to appreciate sleep needs routine and practice! I’ve quite a way to go yet.
The other thing is you appear to have a full and busy day, so soon after treatment and while you’re still adapting and recovering. Stress might be a significant factor, or even fatigue (which for me never brings sleep). Is it worth looking at how tough you are being on your recovering self?
Sorry I can’t offer anything except speculation. I do hope you find a solutions as being wide awake and posting on here at 2/3am (as was my routine) is not healthy! All the best,
Jan x
Unfortunately Lou, you are not alone. I suspect you have had numerous viewings of your post with people agreeing with you. I’m four years down the line and still having disturbed nights. Some are better than others, and at the moment I’m managing 7 hours, which is good for me. I’ve tried lots of interventions which have helped me along at different times, including massage, acupressure. I do a warm bath and lavender oil to help me relax. I only read paperbacks one hour before sleep. I never let myself become over tired as that is the absolute pits! My legs jump about all night. During this lockdown I have found it extremely difficult to get into anything resembling a good sleep pattern, so have turned to my true and tested journaling. I write my anxieties down…which mostly consist of wondering how tomorrow will be, can I manage, what will I be able to do, how fatigued will I be, when will I ever see my family…you get the picture! This has worked very well, so far. I’ve also recently had help from the Marie Curie SafeFit trial which is about getting healthier. Better nutrition , I think, is helping me sleep longer. By giving me activities to do I now have a routine of exercises to help my lymphodaema and an achievable walk. I think being more in control is the key here, and the realisation that if I can’t do what I want, then that’s ok too. I’m using a Fitbit but relaxation app in bed just before I go to sleep, too. Her voice makes me doze off! Don’t know what she’s saying…don’t care! I’ve rambled on a bit here, Lou, in my effort to help, as without good sleep you can’t function, can you? I think try one or two and move on if they don’t work. Spring and being outside will be good for us all. Best wishes. Ann x
I’m exactly the same 6 months post treatment. My surgeon said this is a common side effect post treatment
Consider establishing a bedtime routine to signal your body that it’s time to wind down. This could include activities like reading a book, taking a warm bath, or practicing relaxation techniques like deep breathing or meditation. Also, try to create a comfortable sleep environment by keeping your bedroom dark, quiet, and cool. Check out https://joyorganics.com/products/cbd-sleep-gummies. Those sleep gummies help me sleep great. If sleep disturbances persist, consult with a healthcare professional. Take care!