surgery on monday

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back after 2 months; laser surgery to remove tumor on the epiglottis coming up next monday and i have a question, how do you possibly control your emotions with this disease? it seems like the UNKNOWN factor is what is kicking my rear. Normally i am the solid rock but i am letting this ordeal work on me way too much; any advice is appreciated. thanks.

Comments

  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
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    The unknown IS the fear!
    I think we can all relate to this fear! It is what it is! It is scary and we don't know the future, how bad it will get, how bad we'll feel and how we'll cope! Understand completely!! We're here for you, questions, tips, anything can probably be answered by someone going thru this or already been. Terrific boards!
  • Mikemetz
    Mikemetz Member Posts: 465 Member
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    Know thine real enemies
    One way to get a handle is to realize that your real enemy right now is not cancer--it's the treatments. The survival rate for HNC is way in your favor--around 80%. But to survive cancer, you need to cope with the extreme treatments that can rid your body of cancer. If you can focus on getting through your treatments, one day at a time, you'll think less about cancer and the days will go by faster--until one day you get a NED report like so many of us have.

    mike
  • katenorwood
    katenorwood Member Posts: 1,912
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    The great unknown
    Hello,
    I totally know the feelings of dread of the unknown. CSA has been a great source of support and wisdom. I use a sediative every day. Maybe, if you're not already...discuss it with your M.D. Regards, Katie
  • Grandmax4
    Grandmax4 Member Posts: 723
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    Put your hand
    in God's hand and he'll lead you through it all. I had de vinci robot surgery November 2, 2011...my epiglottis was removed, along with 4 nodes in my neck. I'm not going to tell you it has been easy, but, I will tell you..I've had little pain these past 7 months, not even a sore throat. The lymph nodes came back no evidence of cancer and all scopes have shown Cancer gone!!I was spared chemo and radiation, also, did not have to have a trach as my airway was ample.
    My speech specialist started therapy while I was in the hospital, learning to swallow a new way, I had a feeding tube (nose) for 6 weeks and have since been able to eat a soft diet.My advice is listen carefully to your therapist and do what she asks, even when you don't want to. My cut from ear to ear is healed and you can hardly tell, in the crease of my neck...I do have the turkey neck, and my right ear is numb...chest is tight, but I do exercises every day and it's getting better.
    The worse after effect for me has been the mucus, Lord, I can't wait for it to end completely..it's a lot better, but still have some that I just cannot cough up.
    I slept in the recliner for all 7 months because of the feeling of choaking, I started sleeping back in bed this week, with a wedge pillow...so comfy.

    I had no voice, raspy whisper for about 3 months, one day it just started coming back and it's fully back now..even tho, on days i'm tired, it still gets a little weak.
    I restarted babysitting my 4 year old Grandson in January 2012, drive all the time, go to the park, pool, etc.

    Good luck with your surgery, please stay in touch..you're the first person besides me that i've seen post about epiglottis..prayers for you
  • ratface
    ratface Member Posts: 1,337 Member
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    Grandmax4 said:

    Put your hand
    in God's hand and he'll lead you through it all. I had de vinci robot surgery November 2, 2011...my epiglottis was removed, along with 4 nodes in my neck. I'm not going to tell you it has been easy, but, I will tell you..I've had little pain these past 7 months, not even a sore throat. The lymph nodes came back no evidence of cancer and all scopes have shown Cancer gone!!I was spared chemo and radiation, also, did not have to have a trach as my airway was ample.
    My speech specialist started therapy while I was in the hospital, learning to swallow a new way, I had a feeding tube (nose) for 6 weeks and have since been able to eat a soft diet.My advice is listen carefully to your therapist and do what she asks, even when you don't want to. My cut from ear to ear is healed and you can hardly tell, in the crease of my neck...I do have the turkey neck, and my right ear is numb...chest is tight, but I do exercises every day and it's getting better.
    The worse after effect for me has been the mucus, Lord, I can't wait for it to end completely..it's a lot better, but still have some that I just cannot cough up.
    I slept in the recliner for all 7 months because of the feeling of choaking, I started sleeping back in bed this week, with a wedge pillow...so comfy.

    I had no voice, raspy whisper for about 3 months, one day it just started coming back and it's fully back now..even tho, on days i'm tired, it still gets a little weak.
    I restarted babysitting my 4 year old Grandson in January 2012, drive all the time, go to the park, pool, etc.

    Good luck with your surgery, please stay in touch..you're the first person besides me that i've seen post about epiglottis..prayers for you

    I don't know
    What I do know is that I needed help in the form of anti anxiety medication while in treatment. After treatment I sought professional help from two psychologists. I suspect you are much like I was. The hardest thing for me was admitting that I had zero control on the outcome. I have only recently come to this conclusion and it's almost 3 years now. This does not imply in the least that I put blind trust in a Deity. You can control the treatment plan, the facility, the doctor, all sorts of things. Ultimately the disease will do as it will and you must do as you will. You are not the disease. Peace!
  • Sooner79
    Sooner79 Member Posts: 29
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    ratface said:

    I don't know
    What I do know is that I needed help in the form of anti anxiety medication while in treatment. After treatment I sought professional help from two psychologists. I suspect you are much like I was. The hardest thing for me was admitting that I had zero control on the outcome. I have only recently come to this conclusion and it's almost 3 years now. This does not imply in the least that I put blind trust in a Deity. You can control the treatment plan, the facility, the doctor, all sorts of things. Ultimately the disease will do as it will and you must do as you will. You are not the disease. Peace!

    All Of The Above
    It will become so much easier once you start treatment because you will be proactively fighting. Your doctors are well aware of the psychological impact of your diagnosis and trust me, they are and will be more than happy to give you anti-anxiety medication. Don't be afraid to take it - I would bet most of us did and there is no stigma attached. It doesn't indicate that you are weak - it means that you are taking advantage of another of the marvels of modern medicine that are going to help you beat this disease. My doc prescribed Xanax for me and man did it help!
  • noelle_21
    noelle_21 Member Posts: 4
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    For me, I had to be ready
    For me, I had to be ready for the worst- be right with God & have closure to my life. Once I had that I tried to keep the perspective that every day I had was icing on the cake (of life I suppose :) It made even the most difficult days tolerable. I'm not saying it made the fear, anxiety or weariness go away. It did give me a focus, a way to fight & a way to live without caving to panic.

    P.S. I did take the xanax too.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Waiting to do battle....is the hardest part....
    I knew from March 5th that I had cancer...and preparing for battle, which didn't come until April 24th, kept me in a dither. I had TIME for it to play with my mind...finding out all the possible side effects, hearing about the pain, the dry mouth, the lack of taste etc...with the fight still weeks ahead, made me a wreck. I'd come here and get soothed, from all those who have gone ahead of me. I kept a list on my desk of things I might need, and made a point of getting many them on hand before I ever started treatment. It made me feel like I was participating in this preparation for the fight.

    Once the battle began, and I had some knowledge of what I was going to face on a daily basis...I'd get up in the morning with dread...and promptly start working on myself...turn my treatment over to God, and ask for the strength to get thru just this one day. I truly became a "one day at a time" girl. If I caught myself forging into the future...I'd conciously rope myself in, and pull myself back to this day...reminding myself that tomorrow, next week, the end of treatments was none of my beeswax today.

    I came to this board first thing every morning, as part of gathering strenth....ask questions, or say how I felt...I have not missed a day on this board since the beginning.

    p
  • ditto1
    ditto1 Member Posts: 660
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    Waiting to do battle....is the hardest part....
    I knew from March 5th that I had cancer...and preparing for battle, which didn't come until April 24th, kept me in a dither. I had TIME for it to play with my mind...finding out all the possible side effects, hearing about the pain, the dry mouth, the lack of taste etc...with the fight still weeks ahead, made me a wreck. I'd come here and get soothed, from all those who have gone ahead of me. I kept a list on my desk of things I might need, and made a point of getting many them on hand before I ever started treatment. It made me feel like I was participating in this preparation for the fight.

    Once the battle began, and I had some knowledge of what I was going to face on a daily basis...I'd get up in the morning with dread...and promptly start working on myself...turn my treatment over to God, and ask for the strength to get thru just this one day. I truly became a "one day at a time" girl. If I caught myself forging into the future...I'd conciously rope myself in, and pull myself back to this day...reminding myself that tomorrow, next week, the end of treatments was none of my beeswax today.

    I came to this board first thing every morning, as part of gathering strenth....ask questions, or say how I felt...I have not missed a day on this board since the beginning.

    p

    I agree
    take it one day at a time, easy to say hard to do but its likely the only way we get thru this, I have had 3 chemos and they both knocked me down, but then I learned you get back up again, for 2 months I worried about the MASK, yesterday I went to get it fitted and it went much smoother than my fears ever would have allowed. And as P51 says come to this site daily, its the best one day at a time location for folks like us. And you will see we all will stray ahead at times but the beautiful thing about these folks the have been at one point of treatment or another that will likely help us thru our next day. I know they sure did with the MASK. You make it we have to. And yes I never took axiety meds to my knowledge but Adivan is now part of my daily ritual. No shame just a need for this time in my life. Good luck and God Bless.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    ditto1 said:

    I agree
    take it one day at a time, easy to say hard to do but its likely the only way we get thru this, I have had 3 chemos and they both knocked me down, but then I learned you get back up again, for 2 months I worried about the MASK, yesterday I went to get it fitted and it went much smoother than my fears ever would have allowed. And as P51 says come to this site daily, its the best one day at a time location for folks like us. And you will see we all will stray ahead at times but the beautiful thing about these folks the have been at one point of treatment or another that will likely help us thru our next day. I know they sure did with the MASK. You make it we have to. And yes I never took axiety meds to my knowledge but Adivan is now part of my daily ritual. No shame just a need for this time in my life. Good luck and God Bless.

    Well, one thing I think we can all say (there's always the exception of which I am NOT) ...we all worry, fear, wonder, anticipate even as to what is next. Will I be one of those the odds do not favor? Is that pain in my throat (or whever) cancer? Is that bump cancer? On and on this goes.

    I will not pretend to be a strong one. I like the way Ratface describes (I think it was him) how he was a police officer for years and how cancer really took him down (kind of the way he worded it). I also see on here where many take Xanax or prescriptions. I was never offered any? Don't know why. Could I have or now use some, sure, I bet I could.

    What's really funny is I think for a solid month I had the same dream of sorts that a doctor, a family member, my wife (all different nights) had to tell me my cancer was back again...I slept TERRIBLE ..tossed and turned something awful. I recently had the worst headache..and sure 'nuff...was concerned enough to go to the ER for the headaches and PVC's (premature ventriculare contractions of the heart, which I am prone too) ....ER doc said stress, lack of sleep as well as caffiene can cause PVC's ..as for the headaches he did order an MRI ..and guess what ...I had a brain and it looked normal. The ER doc said you have got to get good sleep. He prescribed me "Ambien" (sp) and boy I have to tell you I sleep GOOD at night and hardly dream. I go to sleep and wake up and it's morning. Dry throat to heck and back, but by golly I sleep. :) I have felt MUCH better due to that.

    I really felt guilty I was not stronger with the fear. Wife and kids say during treatment I was solid and steady as a rock ...( my wife said to me "why now do you worry or get stressed sometimes"?) ..I told her I really don't know why...I think when I was in treatments I was fighting..I was doing something....my kids and wife needed to see me fight and I had a plan and doctors, family to report to...now that all that is over ....it's like I find myself "waiting" for the next show to drop. Not sure what I am suppose to do? Sounds crazy I know. I guess my answer is "go live for crying out loud"...lol

    I am one who subscribes whole heartedly in God (Jesus if you will). I do believe He loves us, cares for us and does answer prayer, though not always the way we ask (not trying to sell anybody here, just sharing what I lean on) ..and I was feeling really guilty about not being stronger ..not leaning better on Him. In fact I must say Pat (longtermsurvivor), Kent, John (skiffin) , ratface and many others (I hate to leave off names) have really helped me get much of that under control because of their experiences and knowledge. To me knowledge is power. Tommyodavey even sent me a note one time saying if ever I need to talk he was available. All of that has meant the world to me.

    Then one day it was as if the good Lord was telling me "I put people in your path to help you as well as I am here for you".....

    This forum is a great place. The people are geat (wish I was as tough as Phrannie and some others on here) ... :)

    Even your post tonight helped me see we all deal with this and it is normal. So I hope you too can work on dealing with it, post and share with us and "just go live". :)

    Best,

    Tim
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    still scared, but dealing with it
    Hi bigchili,

    This is one dark road you are traveling, unknowns around every corner. I too thought I was pretty tough (could handle stress), but nothing prepares you for this terrible stuff. Now that you are here, there are ways to cope. For me, getting through radiation it was Lorazapam. For after treatments, it was my wife skimming the threads looking for help and advice. For me this worked, because it kept me away from the intense threads and let her concentrate on finding only the uplifting and helpful threads. I never felt sick, I just had cancer and if I sat (and no matter how long I sat) and dwelled on why, I truly knew it was the luck of the draw. Break the dwell cycle, visit with someone, do something you enjoy, watch something funny, listen to music, do something. Some how, for me, I pretty much quit thinking about it so much, my body and mind just accepted it. As I sit here, if I really question why me, it just comes and goes away. We all have different speeds of acceptance and you will find yours.

    Best of luck on next Monday’s surgery.

    Hoping you find relief.

    Matt