Having problems sleeping

D-Byrd
D-Byrd Member Posts: 25
edited March 2014 in Head and Neck Cancer #1
Hi everyone I am D-Byrds son Jason, and I was just wondering if any of you guys have problems sleeping? My father sleeps around 3 to 4 hrs a night and it is starting to get to him. He went to the doctor last week to see if he was sick because he was feeling dizzy all the time and the Dr. said he was fine.

He is not that dizzy anymore but he is very weak and about 9 wekks out of rads and chemo. He still has no taste and I am worried he giving up on the fight. If you guys have any suggestions about any of this it sure would be appreciated.

Jason

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    sleep
    Jason,

    My husband is about three weeks post-treatment and is having difficulty sleeping, also. We saw his doctor last week and got something to help him sleep - the medicine worked pre-cancer but doesn't seem to do much good now. Jim sleeps very hard for three to four hours and then cannot sleep any more. He gets up about 3:00 or 3:30 a.m. I understand this is very usual for cancer patients.

    We asked specifically for this medication; since it is not working we are going to talk to the doctor today to ask for a recommendation. Perhaps your dad needs to do the same thing.

    There is nothing worse than not sleeping and laying in bed worrying.
  • RushFan
    RushFan Member Posts: 224
    #3
    Not to worry...
    Hi Jason,

    It WILL get better...slowly. I was anxious to get back to "normal" and along with dry mouth issues, I would sleep very little at night. I wanted daily improvements. I learned that improvement was better measured weekly.

    Taste will also improve slowly. I can taste most things, but sweet items are not that sweet, so my old favorite ice cream has lost it's appeal.

    Saliva is the slowest. I might have 10% if I'm lucky right now.

    I'm five months post treatment and turn in at 10pm and wake up without an alarm at 5:30am for work. I wake up an average of three times per night to take a sip of water and a spray of Biotene...then back to sleep. I honestly feel great...and I'm working on getting to fantastic.

    Hang in there with your dad, stay positive and upbeat. Even though he may not acknowledge them, encouraging comments really help.

    Best to you, your dad and all here.
    Chuck.
  • D-Byrd
    D-Byrd Member Posts: 25
    #4
    RushFan said:

    Not to worry...
    Hi Jason,

    It WILL get better...slowly. I was anxious to get back to "normal" and along with dry mouth issues, I would sleep very little at night. I wanted daily improvements. I learned that improvement was better measured weekly.

    Taste will also improve slowly. I can taste most things, but sweet items are not that sweet, so my old favorite ice cream has lost it's appeal.

    Saliva is the slowest. I might have 10% if I'm lucky right now.

    I'm five months post treatment and turn in at 10pm and wake up without an alarm at 5:30am for work. I wake up an average of three times per night to take a sip of water and a spray of Biotene...then back to sleep. I honestly feel great...and I'm working on getting to fantastic.

    Hang in there with your dad, stay positive and upbeat. Even though he may not acknowledge them, encouraging comments really help.

    Best to you, your dad and all here.
    Chuck.

    Hi Chuck!!
    You look great man!!!! Looks like you got this monster beat and thanks for your reply about my father. I think the issue is "mind over matter" here and O know this is easy for me to say sitting in the easy zone. I feel so bad for my Dad though and I wish there would be a day that he would wake up and say I got this!!!! Put his fists up and bob and weave but it seems like he is giving up on the fight. I just wish I could do something for him and take this all away.

    I read the forums all the time and see you guys post on here and you are all a great deal of help to people that have no hope. I think my father is falling in that category of no hope because hr has nothing that he enjoys now. I tell him all the time how much I love him and how much I think he did the right thing about doing the rads and chemo. I went with him everyday that I did not have to work and I made it my job. I love him so bad that it hurts and I just wish I could give him a little peace of mind that everything is going to be okay.

    My father had a radical left neck disection with 24 nodes being removed and 3 being positive. He had no primary site and was diagnosed with SCC. They admited him to the hospital to remove the golf ball size knot on the left side of his neck and said it would only take an hour. We sat in the waiting room for over 7 hours to find out that the 3 inch incision turned out to like 16 along with 30 something staples. When the doctor took us into the conference room his first reply was "this was the worst cancer I have seen in 20 years". Not that I am sorry or I hope you guys are okay, and that is okay with me, but the way he feels now compared to the day before he had the knot removed is not okay.

    I am sorry to keep rambling on but it bothers me a lot that my fathers quality of life has gone way down and he is not look foward to the future but day by day and it is not getting better for him. If any of you guys out there have had these feeling I would be greatly in debt to you if you could just give me a few lines of encouragement so I could paa them to him. I get on here all the time and read all your post to him and I think it helps him sometimes. I know GOd has a plan for all of us and like his family Dr. said last wewk, we are all terminal and going to die.

    Thank you guys so much for posting on here so I can read these things to my father and try to lift his spirits a little and I know all people recover differently. I apray for all of you every night and hope you all recover soon for this horrible monster!!! I also want to say that my father had his left jugular removed along with his left shoulder trapezoid. I just wish someone here that has had these same things done could give me some advice so I can try to help my father out. God Bless you all!!

    Jason

    Thanks Chuck!!!!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    D-Byrd said:

    Hi Chuck!!
    You look great man!!!! Looks like you got this monster beat and thanks for your reply about my father. I think the issue is "mind over matter" here and O know this is easy for me to say sitting in the easy zone. I feel so bad for my Dad though and I wish there would be a day that he would wake up and say I got this!!!! Put his fists up and bob and weave but it seems like he is giving up on the fight. I just wish I could do something for him and take this all away.

    I read the forums all the time and see you guys post on here and you are all a great deal of help to people that have no hope. I think my father is falling in that category of no hope because hr has nothing that he enjoys now. I tell him all the time how much I love him and how much I think he did the right thing about doing the rads and chemo. I went with him everyday that I did not have to work and I made it my job. I love him so bad that it hurts and I just wish I could give him a little peace of mind that everything is going to be okay.

    My father had a radical left neck disection with 24 nodes being removed and 3 being positive. He had no primary site and was diagnosed with SCC. They admited him to the hospital to remove the golf ball size knot on the left side of his neck and said it would only take an hour. We sat in the waiting room for over 7 hours to find out that the 3 inch incision turned out to like 16 along with 30 something staples. When the doctor took us into the conference room his first reply was "this was the worst cancer I have seen in 20 years". Not that I am sorry or I hope you guys are okay, and that is okay with me, but the way he feels now compared to the day before he had the knot removed is not okay.

    I am sorry to keep rambling on but it bothers me a lot that my fathers quality of life has gone way down and he is not look foward to the future but day by day and it is not getting better for him. If any of you guys out there have had these feeling I would be greatly in debt to you if you could just give me a few lines of encouragement so I could paa them to him. I get on here all the time and read all your post to him and I think it helps him sometimes. I know GOd has a plan for all of us and like his family Dr. said last wewk, we are all terminal and going to die.

    Thank you guys so much for posting on here so I can read these things to my father and try to lift his spirits a little and I know all people recover differently. I apray for all of you every night and hope you all recover soon for this horrible monster!!! I also want to say that my father had his left jugular removed along with his left shoulder trapezoid. I just wish someone here that has had these same things done could give me some advice so I can try to help my father out. God Bless you all!!

    Jason

    Thanks Chuck!!!!

    Hi Jason. I sm glad that
    Hi Jason. I sm glad that your father has you to help take care of him. I too had a tumor on my left side. It got to the size of a lemon. SCC unknown primary stage IV. They took my left salivary gland and 23 lymph nodes 3 were positive. So I can sorta understand what your dad is going thru. I didn't have my juglar removed tho.

    All I can say is it truely does suck but you can survive and make it thru to the other side. Try to keep your dads spirits up. It can be so hard going thru rads and having a support system was what got me thru. I was showered with cards from church members, chorus members and family and friends. I think I would have given up with out all that support. Knowing all those people cared and we rallying and praying for me helped so much. I've had a rough three years, but I'm still kickin'.


    Blessings

    Sweet
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Hi Jason


    Sometime it will take a while before taste comes back so don’t get alarmed and on sleeping I too was up all night even after treatment stopped for months and then my body got back to its new normal. On the weakness have his Thyroid glad checked as soon as you can, sometimes the treatment will kill the gland.

    Take care
  • Scambuster
    Scambuster Member Posts: 973
    #7
    Hondo said:

    Hi Jason


    Sometime it will take a while before taste comes back so don’t get alarmed and on sleeping I too was up all night even after treatment stopped for months and then my body got back to its new normal. On the weakness have his Thyroid glad checked as soon as you can, sometimes the treatment will kill the gland.

    Take care

    Jason, early days but critical days ..
    HI Jason,

    Just some follow on from the previous posts. I had a very rough time in treatment and then afterwards and had pretty much lost hope and the will to live. You dad may be suffering from depression. This is a very debilitating condition and should be taken very seriously. IF you think he is depressed, I would strongly recommend you talk to his doctors and seek a referral to a psychiatrist. I did and I believe that saved me at that very dark time in this journey. I was given a mild antidepressant, anti-anxiety, mood stabilizer and a pain medication called 'Lyrica' which works well for Neuralgia (nerve pain). They took me off all the morphine, Vicodin etc I was dependent on as I was in very bad shape.

    First things was I actually slept. Getting sufficient sleep is critical for his physical and mental recovery. The difference after several months of terrible sleep or no sleep was remarkable. Also my moods were OK and I started to feel a little brighter and have a few positive threads start in my life, even though the eating, weight loss and general 'I've got Cancer' stuff we have all dealt with, didn't exactly make me happy, but I saw a tiny speck of light somewhere out in the darkness. In essence, it was a turning point.

    I will also suggest you look into his nutrition, as the body needs all the right stuff now to recover. You can PM me for more info or check my expressions page.

    It is a long slow climb out and he may have just hit the bottom of the 'J' curve Jason. He may well need some extra help right now that you can't provide, and it may be critical to get him that help to get him to the next base.

    I was in that horrible place less than a year ago and now look back on that terrible time from a very bright place. He can do it too, it will take a while but I venture to suggest he most likely needs some extra help.

    Scam
  • Greg53
    Greg53 Member Posts: 849
    #8
    Scambuster said:

    Jason, early days but critical days ..
    HI Jason,

    Just some follow on from the previous posts. I had a very rough time in treatment and then afterwards and had pretty much lost hope and the will to live. You dad may be suffering from depression. This is a very debilitating condition and should be taken very seriously. IF you think he is depressed, I would strongly recommend you talk to his doctors and seek a referral to a psychiatrist. I did and I believe that saved me at that very dark time in this journey. I was given a mild antidepressant, anti-anxiety, mood stabilizer and a pain medication called 'Lyrica' which works well for Neuralgia (nerve pain). They took me off all the morphine, Vicodin etc I was dependent on as I was in very bad shape.

    First things was I actually slept. Getting sufficient sleep is critical for his physical and mental recovery. The difference after several months of terrible sleep or no sleep was remarkable. Also my moods were OK and I started to feel a little brighter and have a few positive threads start in my life, even though the eating, weight loss and general 'I've got Cancer' stuff we have all dealt with, didn't exactly make me happy, but I saw a tiny speck of light somewhere out in the darkness. In essence, it was a turning point.

    I will also suggest you look into his nutrition, as the body needs all the right stuff now to recover. You can PM me for more info or check my expressions page.

    It is a long slow climb out and he may have just hit the bottom of the 'J' curve Jason. He may well need some extra help right now that you can't provide, and it may be critical to get him that help to get him to the next base.

    I was in that horrible place less than a year ago and now look back on that terrible time from a very bright place. He can do it too, it will take a while but I venture to suggest he most likely needs some extra help.

    Scam

    D-Byrd
    Jason,

    Sounds like your Dad has a good caretaker! From my perspective as a patient that was hugely important. I agree with Scam on the depression thing. I was lucky I didn't experience that, but if your Dad is, don't be afraid to get him on meds. They should help in a lot of areas, like sleep, eating, staying active.

    One thing on the lack of sleep, I used melatonin. It's a natural supplement that can be bought over the counter and worked wonders for me. It takes a couple of days to start having an effect. Hope this is somewhat helpful.

    Positive thoughts going out to you and your Dad!

    Greg
  • D-Byrd
    D-Byrd Member Posts: 25
    #9
    Greg53 said:

    D-Byrd
    Jason,

    Sounds like your Dad has a good caretaker! From my perspective as a patient that was hugely important. I agree with Scam on the depression thing. I was lucky I didn't experience that, but if your Dad is, don't be afraid to get him on meds. They should help in a lot of areas, like sleep, eating, staying active.

    One thing on the lack of sleep, I used melatonin. It's a natural supplement that can be bought over the counter and worked wonders for me. It takes a couple of days to start having an effect. Hope this is somewhat helpful.

    Positive thoughts going out to you and your Dad!

    Greg

    Hi Greg!!
    Thanks Greg so much for responding to my post, I know you guys are busy and have things to worry about in your lives. It means so much to me to come home from work and see that someone has gave me a new idea for my Dad. I love all you guys and gals and you are all in my pryers!!! God bless you all!!!

    Jason
  • D-Byrd
    D-Byrd Member Posts: 25
    #10
    D-Byrd said:

    Hi Greg!!
    Thanks Greg so much for responding to my post, I know you guys are busy and have things to worry about in your lives. It means so much to me to come home from work and see that someone has gave me a new idea for my Dad. I love all you guys and gals and you are all in my pryers!!! God bless you all!!!

    Jason

    Thanks
    Thanks for all the replys guys and girls, you sure are a great help to me and my father. I hope all of you are doing great and I will be reading the boards everyday. Hope to talk to all of you soon!!! God bless you!!!

    Jason

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