sleep

[pimbok]

I had a large tumor removed a few weeks ago and it was diagnosed as cancer. I started radiation treatment yesterday and all is looking good. The whole thing has been a massive shock and I'm finding it hard to wrap my head around. I know I'm one of the very, very lucky ones but my head just keeps going around with stuff. My emotions are all over the place and I can't focus for very long. I know these will all pass. I was just wondering if anyone has any suggestions as to how I can sleep? Even when I think my body is sleeping, my brain just does not rest. Feel like I'm living on adrenalin. Good, peaceful, deep sleep would be wonderful. Thanks for any suggestions.

[harker]

Are you taking dexamethasone? Or another drug that could be keeping you buzzing? I realised after a few months or so that the dex was stopping me sleeping properly. I talked to my oncologist and we reduced the dose. It might be a drug doing it. Talk to the scientists about that and don't think it's because you are not coping. If you are posting here you are coping! H

[samex]

Ahh Sleep. Where do it go? Sorry not being of any help - I only found out about dex way too far down the track but if you were a good sleeper before, this could be part of the problem. You may also wish to talk to a medical professional about relaxation techniques to help you switch off your brain. Not sleeping is the pits especially when you need all the rest that you can muster. Sleep has been an ongoing issue for me and even neqarly 4 years down the track my residual neoropathy keeps me awake at night. You'd think that it would behave at night wouldn't you? Seriuously, try and address some of the issues if you can. S

[pimbok]

Thanks guys. I'm not on dex but appreciate the suggestions.

[SILLY]

It's understandable as your'e on an emotional high. I am not a good sleeper but after my diagnosis I only slept about 4 hours a night .I can't recall when but my husband asked my ENT to give me something and I was prescribed Tamaze(I think it was),a sleeping pill.They can become addictive like all sleeping pills so you need to see what the doctor says. It did give me 8 hours sleep though.You can't stay on them for too long as they lose effectiveness gradually. To Samex, neuropathy is usually worse at night ,my gp told me.

[SILLY]

I also have a rare cancer and spent at least 4 hours daily on the net researching it in the 2 months awaiting surgery as the tests and planning took that long. My ENT/ surgeon had not seen this cancer before . My cancer is called adenoid cystic carcinoma .What type did you have? I have never heard of a cancer where you had it.It is good that all will be ok.

[pimbok]

Hi Silly, Thanks so much for your replies. You're right - I'm on some sort of high or something. I just can't wrap my head around it all. I think I'll try and hang in there for another week or so and if the sleep doesn't improve see my doc. My cancer is a 'well-differentiated liposarcoma'. It was 310mm x 100mm x 65mm and I had absolutely no idea it was there which really frightened me. Are you going to be ok? What has happened so far - have you had any of the tumors out etc? Sorry if these are too many questions. I'm new to this world and don't know if there's an etiquette etc. Feel free to PM any time. Thanks again.

[SILLY]

I was treated last year and all still looks ok for me.I had surgery and radiation . I googled your cancer and it is indeed rare but if they got it all the prognosis is excellent. You did not say how old you are .I am 60,married,3 grown children and 7 grandchildren. Do you have family around? Don't worry about asking me questions.Now I have asked you plenty.If people don't want to answer they can ignore questions.All the best. Talk soon.

[pimbok]

Really glad you're ok so far. Do you need any more treatment? I'm 52, married with a 27 year old son. Unfortunately, no grandchildren yet but something I can't wait for 🙂 The rest of my family live in QLD (I live in Tassie). They've been ringing etc. How are your emotions now?

[SILLY]

I'm ok .I had been having 3-monthly checks but my oncologist said it can be 4-monthly now as long as things stay good. Emotionally I'm pretty good . It took some time because my surgery altered my facial appearance and this made me depressed . I had some counselling in September and October last year and to my surprise it did help . I live in QLD , on the Gold Coast.I have a 39 year single son in Brisbane,a 30 year old married son in Sydney and a married daughter on the Gold Coast. Most of my other family are in or near Sydney. My husband and my daughter were my closest supporters and 3 of my 9 sisters as well. A year ago I was not happy but now I am very happy.I guess you are still in a strange place emotionally . Have a peaceful sleep tonight.