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Kaniksu
Posts: 54
Joined: Nov 2015

What to do about disturbed sleep? I am falling to sleep and now waking for several hours around midnight or so just can't seem to get back to sleep.my dr gave me some alprazolam but that is habit forming ans melatonin leaves me so groggy in the mornings for work. if I don't start getting more energy I may retire then I won't need to worry about sleep...Any advice??

Anonymous user (not verified)

for some reason I wake up at prmptly 3:15 every morning, regardless of when I go to bed.  I just quit fighting it and get up. I have breakfast, watch tv, play with my dogs and surf the web. It is not so bad really. I do not work so don't know how I would deal with it if I did.

Max Former Hodg...
Posts: 3690
Joined: May 2012

Kan,

I have been off chemo for years, but have a very odd and irregular schedule.   I go in late afternoon, and get off at 3:00 AM (getting in bed around 4:00 AM), but work four days a week, so it is impossible to transition back to a "normal" schedule on my three days off.   Some days I take a Unisome, which they claim is non-habit forming (it has never been habit-forming for me). It is OTC of course.   I also run a floor fan for "white noise" to keep from hearing noises from outside during the day.

I would ask my oncologist before using it, and I am not "recommening" it, just sharing what I sometimes have to do.   Also, the active ingredient in Unisome is different from the other big brands, and the other big brands DO NOT WORK for me, no idea why.  It takes about an hour for the drug to begin to be effective for me, and one dose really keeps me asleep for around ten hours, so plan on it affecting you for some time.

I do not know where your picture is from, but my grandfather was a wheat farmer in centeral Kansas (Rooks County).  The views were stunning out there -- you could see forever.  His nearest neighbor was so far away you had to drive to get there.  No noise, ever. A car might drive past twice a day; airliners were too high to hear, or hardly even see.  People on the coasts call it "fly over country."  We prayed, "Plese keep flying over; don't come here and destroy this heaven on earth."    A better way of life.

 

max

Kaniksu
Posts: 54
Joined: Nov 2015

Hey Max...the picture is from NE Oregon ..I was headed to Washington last summer to work on a fire ..that's when I discovered my lump..hence the name Kaniksu..I was working on the Kaniksu Complex fire.Thanks for the tip on the unisome. The weird sleeping patterns are hard when your working a regular job. Some days are  goodothers not..my energy level has not come back yet..ill talk to Oncolgist first week in July. Trying to find the new normal..thanks for your feedback...this site is a sanity saver...

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

Kan,

I know the feeling. Right after R-Chop chemo I was up about every 2 hours to go to the bathroom. I knew it was from the saline and the water I drank but all those are necessary. I was able to work from home for the 3 days after chemo but still tried to get to bed by 10 pm and up by 7 am. The weekend I let myself sleep a little more. I had 3 weeks betweem chemo so about the third week I usually could get up to 3 hours sleep before I woke up. 

When I did RICE it was 3 days in the hospital with 3 weeks between. I found I still was getting up about every 2 hours to go to the bathroom. Last treatment was last Oct. Usually I was so tired I had no problem getting back to sleep. 

One thing that has stayed consistant is that I wake up 1.5 to 2 hours after I go to bed. I've tried not drinking anything for 2 - 3 hours before going to bed but I still am getting up. Sometimes I can go back to sleep right away and other nights it can take up to an hour. Now when I get back to sleep I often sleep 3 - 4 hours before I wake up again. 

I've taken melatonin but I usually take it a few hours before I go to bed and make sure I do not have to get up for at least 8 hours after I go to bed. Once I chemo was over I went back to drinking chai (tea) in the morning. I had gotten to the point of having it every day. About a month ago I cut back to just 3 - 4 times a week. I think that has helped me to sleep better. 

Since I am back to going into the office 5 days a week there are days I do come home very tired. Usually those are the nghts have the worse trouble sleeping. A coworker (cancer survivor) told me to take a 15 - 20 min nap when I got home. I was afraid to do that thinking it would just be harder to sleep at night. But I have taken a nap a few times now and slept better that night. Another things I have done for years is to keep the clock on my nightstand covered during the night. That way when I do wake up I can't see what time it is. I have to sit up and lift the cover to see the time. That way if I am tossing and turning in bed I am not staring at the clock and seeing how much time has gone by. 

 

Kaniksu
Posts: 54
Joined: Nov 2015

Lindary ..thanks for your reply..your sleep situation sounds a lot like mine..just wonder why the chemo turns it so upside down....it's hard enough to try to get back to work but then sleep deprivation on top of it...geeze!

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

I have found that it is not just my sleep pattern that has been changed by the chemo. My body thermostat is messed up. I've always been freezing when it's below 70 and loved sitting outside when it is 80 or higher. Now the 60s are comfortable although I still grab a sweater if it is in the low 60s. When it starts getting to 80 or 90, I am in the shade or inside. It is just too hot for me. 

Kaniksu
Posts: 54
Joined: Nov 2015

Hey love the pic! How is your energy level after going back to work full time? I am feeling really upset because my chemo ended Jan.29 and radiation Ist week in March. Seems as if all I have energy for.  is work, come home have dinner then off to lay down then sleep. Just seems like I should ne getting some strength back. My husband does all the housework...so I can take it easy when I'm home..I just keep thinking if it was really gone I would be feeling better..thanks...

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

Energy level is slowing getting better. It's been about 8 months since my last chemo. I have found that if I get 8 - 9 hours sleep/rest I do pretty good the next day. When I get around 7 hours I can feel that I am slowing down by the afternoon. Days when I get only 6 hours I am useless in the afternoon and need to take a 20 min nap when I get home. I can do my workout at Curves without taking a break now. This helps some with the strength. Back in Dec I would have to rest for 5 mins at least twice. I have found the more I walk during the day the better I feel by evening. My problem is that it is easy to walk more at work. It's a long walk from my desk to the elevators and the bathrooms are near the elevators. At home everything is closer so I find the only way I get a lot of walking done on weekends is to go to the store. 

I guess I am just hard on myself. Each time I try an activity I haven't done since before chemo and get tired, then I make it my goal to keep at it until I don't get so tired. Twelve years ago I broke my left leg near the ankle and a year later I had a hysterectomy. After my first chemo last year I ended up having surgery for a perforated bowel (thanks to the tumor shrinking). All three situations resulted in me being fairly inactive for 4 - 6 weeks, then slowly getting more active. But I was back to my old level after about 2 months. I am guessing it is because those situations affected the physical. Chemo affects the core of our system, the blood and lymph.  Everytime I get a blood test I think "this time the counts will be getting back to where they wer a year ago". They never are. Looks like we measure recovery in years, not weeks or months.

 

 

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