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Talk to the Beating Bowel Cancer Nurses

CD1966

Unable to sleep

Just a quick query - my brother is recovering from his hip op which was a month ago now, almost, and 2 weeks ago he went back on his original chemo of Cap + oxy (sadly, not the Avastin he also had with it in 2015) to deal with some small lung mets. He is also due to have radiotherapy for good measure in the hip area to try to get rid of any lurking nasties there.

The trouble is that he is finding it very difficult to sleep at the moment. They have even given him temazepam late last week but even this does not seem to be helping. This was affecting him before the very hot weather we've had the past couple of days. Obviously as he is recovering from an op he needs to sleep to recover, plus the chemo is making him feel more fatigued than first time round: he had been told that is not unusual. However, the combination of the two is just leaving him exhausted with this lack of sleep.

Is there anything you can suggest? @Lady GT did suggest it may be something to do with steroids and the dose of these having to be reduced, but to be honest I don't know if these are in any of the medications he's on right now. I'm worried as he really needs to be able to sleep to boost his recovery and get him well enough for the radiotherapy part of his treatment.

Terrish

Hi @CD1966 - I can't help much other than to offer my sympathies - lack of sleep is one of the things I found hardest to deal with during chemo. I did eventually cut down on my steroids and only took the morning dose - maybe you can ask him if he is taking steroids and suggest he takes them as early as he can?

Being a man I guess he is reluctant to talk to any of his team - can you do this for him? Hopefully one of the nurses will offer some help in the morning. :x::x:

CD1966

Many thanks @Terrish - I will suggest that about the steroids. I hadn't realised those were part of the regime until @Lady GT mentioned this. I will get him to speak to his team about that asap. His wife is going to go to his pre-chemo meeting with him next week and make sure he mentions it. I know he would feel a lot better if he could sleep properly.

Lady GT

Hi @CD1966 .
This is a very difficult problem, isn't it? And there are probably several issues at play here, which you might need to unpick.
First of all, the steroids. Generally, they are given for a few days immediately following the Poxy Oxy infusion to help mitigate side effects. But after that, they stop for the rest of the cycle (or at least, that was Lord GT's experience).
So ... if your brother can't sleep in the immediate aftermath of his infusion day, that's probably due to the steroids. Does he know the names of the drugs he is taking and what they are for?

Anything beyond that will not necessarily be steroid-related.
But ... it could be psychological. You know, the vicious circle. Need sleep, can't sleep, worry about not sleeping leads to not sleeping .. wash, rinse, repeat.
And, bizarrely,it's when we are utterly exhausted from lack of sleep, that we need to sleep most and can't. The mind is an odd thing. Particularly when it is also grappling with the C word, and all its implications.
See how complicated this is?

I notice that your brother has been taking temazepam with little effect.
I honestly think this needs a frank conversation with his team.
As you say, to cope with recovery and chemotherapy, sleep is essential. So all these issues need unpicking.

I don't have answers, or a magic wand (wish I did!) but hopefully I have given you something to think about which might help your brother.

:x:

CD1966

Many thanks @Lady GT - I have been nagging him to speak to his team but will do so again. He is on capecitabine + oxy, but I don't know about painkillers (if any) post the hip op, or anything about steroids.

Moeh

Hi CD1966

I struggled quite badly with lack of sleep during chemo. I was taking Dexamethazone steroid to combat side effects. This was reduced and my oncologist gave me a short course of Zopiclone. This did the trick and I soon got back into a routine of sleeping. Zopiclone is quite addictive so only had about three weeks just taking one every other night. All the best to your brother.

Charlotte Senior Nurse Advisor

Dear @CD1966,

I'm very sorry to hear that your brother is having problems sleeping. Thank you to others for your responses and I think the comment from @Lady GT really sums the problem up well. His sleep issues will almost certainly be a combination of drugs, anxiety (about his treatments as well as the actual sleep problem itself) and if has had a degree of pain or discomfort following his hip op this would only have compounded the problem further.

It is worth him asking his team about trying a short-term alternative sleeping pill if the Temazepam is not working just to break the cycle and hopefully get him into a better sleep pattern. You mention that he is exhausted (understandably) does this mean he is sleeping or napping a lot during the day? If he is then this will mean he will not sleep well at night, the normal pattern has been reversed, sleeping during the day instead of at night. As we don't have such good 'quality' sleep during the day it doesn't refresh you like sleeping at night does. It can be very difficult to reverse this but a different sleeping pill may help as well as other exercises such as relaxation techniques, mindfulness, meditation etc. Often it can take a bit of effort to reverse a poor sleeping pattern but I hope with the support of his team he can achieve this.

with kindest regards,

Charlotte

CD1966

Hi @Charlotte Senior Nurse Advisor - many thanks for that. The hot weather won't be helping either. I will pass this on to him straight away.

CD1966

Thank you @Moeh, that is really helpful. Hope you're doing OK now?

Quote from @Moeh:
Hi CD1966

I struggled quite badly with lack of sleep during chemo. I was taking Dexamethazone steroid to combat side effects. This was reduced and my oncologist gave me a short course of Zopiclone. This did the trick and I soon got back into a routine of sleeping. Zopiclone is quite addictive so only had about three weeks just taking one every other night. All the best to your brother.

Moeh

I am doing good thank you. Just had clear scans and colonoscopy and back at work full time.

CD1966

That is super news @Moeh - must be great to get back onto the regular life!