They say you shouldn’t watch tv or do any electronic stuff on an I pad etc late at night as there is too much stimulation going on.  Reading apparently better.

Although you say you don’t want to go down the sleeping pill route, could you take them just for say 3 days to get you back to a more regular routine?

From personal experience, the worst thing to do is to try to get to sleep.  Does your schedule allow you to sleep on in the mornings?  If so, when you’re awake in the middle of the night, could you say to yourself that it doesn’t really matter as you can sleep on later?

If you’re not sleeping because you’re worried you could have a piece of paper by your bed to write them down and then say to yourself you’ll consider them in the morning?

Also don’t make your bedroom anything else but where you sleep eg don’t work in there as well.

I’ve heard that a short nap during the day eg 20 mins is ok , you just don’t want to make it too long.

Hope that helps -now I’ve got to practice what I preach!

Hi hopecalm

Thank you for repling to my post with your helpful insights. Ill try switching from watching TV to reading before bed. I do have anxiety with the cancer mostly about getting my affairs in order finance for family funeral arrangements and so on. The tip on writing a note to consider in the morning is novel and something I shall do. I get excercise each day as I force myself to do a few hours work  which keeps me sane. I also go for walk 20 mins to one hour depending on fatigue level. Bedroom is dark and quiet as recommended. Daytime naps are dangerous as they end up being 2 hours rather than 20 mins and Ill hold off on the sleeping potions for now anyway. All the best.

Ed

Hi Ed

This is a late reply so apologies, I have been exactly the same as you. Tried all sorts of wonderful things to keep me asleep as I had no problem falling asleep just had the 3am curse! Finally after a lot of 3am wakeups I spoke to my oncologist and now take zopiclone 3.75 mg x2 each evening.

I don't have a set time I have them when I get in bed, best thing ever for me I sleep minimal 7 hours, which is needed as we heal when we sleep, I'm not drowsy when I wake up neither

Hope this helps Ed, sleep is important, hope you're coping with your treatment it's not easy both physically and mentally

Hi Kallie

Thank you for your reply. Although using drugs to sleep is a last resort for me Im so desperate for a whole night of unbroken sleep that I may discuss this at my next appointment with the oncologist. I realise this is a short term fix but it may reset my sleep pattern giving me the energy to deal with the everyday challenges that living with cancer brings.

Ed

Hi Ed

I agree with you it was my last go to aswell, but on the grand scale of things, I thought to myself I'm fighting every day with this cancer I just need to sleep! So for me it's easier to cope with each day if I've had some sleep if that makes sense. I've had the all clear once but it's now back, I'm incurable but it can be controlled so I'm told.

I'm positive I always have been, so I take each day as it comes, we're all fighters here  I hope you eventually get some sleep Ed you need it. 

Take care

Kallie.

Hi Ed and Kallie,  I sometimes take half a zopliclone when I need to sleep as well.  The doctor will only give me fourteen tablets.  If I want to have anymore I have to have a consultation with the doctor which I find ludicrous.  They tell me they are addictive and not good and will stop working.  Like you both I have incurable cancer and have been prescribed tramadol and since then morphine and liquid morphine.  I asked the oncologist will I become a drug addict and he said so what.  I get his point because its a good quality of life we need.  So for the doctor to act so patronizing  makes me mad.  The zopliclone helps but I only take it now and then, especially waiting for scan results etc.  I wish you both sweet dreams and hopefully a good nights sleep..

Lee x

Thank you for sharing that with me Kallie. Im on palliative care with immunotherapy so treatable but incurable. I hate that word terminal. As Im already having medicines I guess another to help with sleep wont be such a big deal. Especially if your experience of not waking up groggy is also true for me. I hope youve had a good day today.

Ed

Thank you for sharing that with me Kallie. Im on palliative care with immunotherapy so treatable but incurable. I hate that word terminal. As Im already having medicines I guess another to help with sleep wont be such a big deal. Especially if your experience of not waking up groggy is also true for me. I hope youve had a good day today.

Ed

Hiya Ed same here palliative with immunotherapy, had the first immunotherapy last week, I was on chemo but it was stopped at the dreaded 3 monthly scan it wasn't working and the cancer had doubled, it's in 3 lympnodes in my groin and one on my pelvic wall, happy days eh! I have no pain at the minute, which is a blessing, I've been fighting this since 2022 I had chemoradiotherapy early 2023 that didn't work neither, what is going on I ask myself. The end of 2023 I had major surgery. They removed the tumour, I have a colostomy, and life was good for a while then it returned November 2024 and this is where I'm at now, apologies a bit of a long tale, your day sounds great Ed, very therapeutic listening to the ocean. Take care  

Just a quick one you're not terminal Ed please don't think that. Unless someone has told you are. New treatments are being found all the time, mu immunotherapy is for 2 years I've no idea if it will be successful I've had a lot of chemo and none has worked on my cancer so I'm hoping immunotherapy is different. Keep positive Ed and looking at the ocean. Apologies if I sound bossy but we all have to be positive to fight this flippin cancer. Take care

HI Kallie

Hope your treatment with immunotherapy is going well and not as brutal as chemo. Yes Im with you on the label incurable rather than terminal. At the end of the day life is terminal for everyone even if they have no illness. Ive not met anyone who has been told their cancer is terminal. Is this an American thing? Im around 6 months into immunotherapy and making the most of life dong the things I can do and accepting the things I cant do and dealing with cancer and treatment side effects as best I can. 

Ed

Hi Ed 

Thanks for your reply, yes terminal is scary isn't it. How are you finding immunotherapy? I hope it's making a difference for you, what are you're side effects if any, although my chemo wasn't successful I never had any of the side effects apart from fatigue for a couple of days, that goes beyond the boundary of just feeling tired.

I've just had one immunotherapy so no reaction/side effects just yet, I may not even get any.. hopefully. Like you I'm just enjoying life and keeping a positive attitude, taking breaks away when possible.

I'm in the north so my treatment is in a specialist hospital up there, not sure if you know it. Keep positive and keep going as they say.

Kallie

Hi Kallie

The cemiplimab and denosumab immunotherapy is working really well. Many of the tumours have disappeared or shrunk to almost nothing and the metastasis to my bones is being kept at bay with the denosumab. I get a few side effecrs fatigue and an itchy skin rash and insomnia which may not be a side effect. Also am a bit foggy in my thinking proccess. But it is manageable and Im enjoying my extended lease of life. Ive been visiting friends and family both in UK and abroad in short breaks between the endless hospital visits for blood tests scans treatment and consultations. Wishing that your treatment is as successfull as mine has been so far.

Ed

Hi Ed 

I'm so pleased for you that your treatment is having a positive effect, long may it continue! I'm hopeful for the same, it's been a long road so far since 2022 unsucessful chemoradiation treatment. Then major surgery, then cancer reacurrence, more biopsies, bloods, scans, treatment, chemo again that failed, chemo is harsh! and now immunotherapy, fingers crossed for the next journey.

We seem to have a busy diary Ed but not by choice hahaha, it's lovely to hear your positive story but I'm guessing like me some days are difficult. Saying that I'm always positive I have to be and you sound the same.

How is your insomnia is it any better? 

Did you find something that helped you to sleep.

Take care

Kallie

Hi Kallie

You have certainly been put through it the last few years. Everyone here will recognise how much this takes to get through both physically and mentally and the effects on your life. Social nerworks are broken because you are too unwell to attend a party BBQ whatever and dont get invited again. Friends and relatives call less frequently or not at all. You would think cancer is contagious. Work suffers or you lose your job. Finances get ruined. You get in debt lose your home etc etc. Those that rely on you for support still expect you to deliver even when you have little energy for yourself. So staying positive through all this for those of us with cancer really is an achievement. Yes there are bad days when the end seems like a blessing but today is a good day and the sun is shining and Im going to enjoy every minute.

Ed 

HI Kallie

The insomnia is still affecrlting me. I get off to sleep quickly but wake up after two to four hours. Then have poor sleep the rest of night mostly awake.

Am going through Jolamines post of useful ideas to see if I can find something. 

Ed