I PROMISE NOT TO MOVE

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ditto1
ditto1 Member Posts: 660
in Head and Neck Cancer #1
I just have to ask, after reviewing the MASK section of the Super Thread again today am I the only one who just wanted to tell them, Look no MASK for me I PROMISE NOT TO MOVE. Seriously I know what the answer is likely to be, but I had a few XRays in my life, and they would say hold your breath and do not move, which I did. My wife had breast cancer and had the tatoo's and RADS but nothing to restrain her....Im not trying to rewrite the procedure (well maybe I am) hoping you good folks could give me a Heads Up (no pun intended)because I feel this will be the 1st question I ask the RAD Doctor.
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  • mls351w
    mls351w Member Posts: 90
    #2
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    Unmasked?
    In my opinion, this is not a good idea, and I think you onc will not even consider it.
    I had to remain perfectly still sometimes for 15-20 minutes at a time. The radiation is literaly pin-pointed and any movement would place it where it does not need to go. I also had a pop-cicle stick with a big wad of wax on it in my mouth, just to keep my tongue restrained. That was worse than the mask for me. However, they left the stick out of my mouth for the last two weeks of radiation and it made it much easier.
    Maybe some valiums instead?
    Who knows, maybe you will re-write the procedure. Good luck to you.
    Again, only my opinion!

    Mark S.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
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    the positioning necessary to do the rads
    requires that you achieve the same position to within literally a millimeter, and hold it that way exactly, for twenty minutes a day. And of course, that same millimeter applies to all days of therapy. This wouldn't be possible without the mask. If you are that apprehensive about it, the techs and the rad doctor need to know this. There are ways to work around it, including sedation if need be. Most people find it gets easier over time.

    Best to you.

    Pat
  • ditto1
    ditto1 Member Posts: 660
    #4
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    longtermsurvivor said:

    the positioning necessary to do the rads
    requires that you achieve the same position to within literally a millimeter, and hold it that way exactly, for twenty minutes a day. And of course, that same millimeter applies to all days of therapy. This wouldn't be possible without the mask. If you are that apprehensive about it, the techs and the rad doctor need to know this. There are ways to work around it, including sedation if need be. Most people find it gets easier over time.

    Best to you.

    Pat

    I TOOK A SHOT
    Thank you for your responses, I thank you Pat, I think you answered it and I knew there would be a reason. I will be ok with the MASK, got to... but I just had to ask.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
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    ditto1 said:

    I TOOK A SHOT
    Thank you for your responses, I thank you Pat, I think you answered it and I knew there would be a reason. I will be ok with the MASK, got to... but I just had to ask.

    This is what I did
    and I'm aware of others who have as well. Are you aware of a technique called "dissolving"? It is used as part of the oriental healing arts. We are taught dissolving in Tai chi, for instance. In it, you essentially meditate on your body, identifying areas that are not as they should be, and command them to leave. During this time you are totally calm and tranquil. I have been through a total of 69 radiation sessions. I used dissolving during the entire course of each one. When you become adept at this, the 20 minutes goes by in about 1. Cancer, BE GONE!

    Best to you.
  • stayingpositive
    stayingpositive Member Posts: 89
    #6
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    I agree, I could not hold still enough even in the 15 min it takes for mine to get over with. However, I am of the mind also that the mask could at least be re-designed so as the material the mesh is made of could be maybe 3 or 4 straps, one on forehead, bridge of nose, and chin. I'll ask the med tech what he thinks. It would be just as constraining, but not as claustrophobic, but still if ya don't like being strapped down (like me) it won't make much of a difference.
  • ditto1
    ditto1 Member Posts: 660
    #7
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    stayingpositive said:

    I agree, I could not hold still enough even in the 15 min it takes for mine to get over with. However, I am of the mind also that the mask could at least be re-designed so as the material the mesh is made of could be maybe 3 or 4 straps, one on forehead, bridge of nose, and chin. I'll ask the med tech what he thinks. It would be just as constraining, but not as claustrophobic, but still if ya don't like being strapped down (like me) it won't make much of a difference.

    So True
    I agree stayingpositive.. will accept the fact that unless they come up with a new approach taking the MASK out of the equation in the next few weeks then the MASK it will be...
  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #8
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    ditto1 said:

    So True
    I agree stayingpositive.. will accept the fact that unless they come up with a new approach taking the MASK out of the equation in the next few weeks then the MASK it will be...

    Held Down
    Hi Ditto,

    I may be mistaken but my mask had markings on it. Just assumed it was for alignment but never asked. Being clamped down didn't bother me one bit. Once they lock you in you tend to forget about it. If you freak out, just holler and they'll stop. They stopped a few times every day with me to readjust my shoulders. Yes, it must be precise.

    Try not to make too much out of this. It really is one of the easier things to do. What I hated was the drive every day.

    There's always Xanax if worse comes to worse,

    Tommy
  • kingcole42005
    kingcole42005 Member Posts: 178
    #9
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    ditto1 said:

    So True
    I agree stayingpositive.. will accept the fact that unless they come up with a new approach taking the MASK out of the equation in the next few weeks then the MASK it will be...

    Yeah, visions of that mask give me nightmares, it sucked!
    I learned to count the zaps, then I knew when we were getting closer. I hated it, I took ativan unfortunately. I'm pretty clausterphobic at times. I had a fitted plastic mouthpiece to move my tongue out of the way.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
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    Whiz Bank Whirl...
    Like King Cole mentioned, you'll learn every click, buzz and rotation...you'll learn when they are done even before they take the few extra minutes to come in and unbolt you....I'd drive them nuts... Iknew from the repetiton and sound when it was over...

    I'd be relaxed and ready by the time they came in.

    Take comfortable clothes a favorite cd, and a xanax if neede.

    I only needed xanax for about a week, then I was used to it....nothing but a thing...

    Best,
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
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    ditto1 said:

    So True
    I agree stayingpositive.. will accept the fact that unless they come up with a new approach taking the MASK out of the equation in the next few weeks then the MASK it will be...

    You're going to be ok...I KNOW IT..
    If you must for the first few times, take something to keep you calm...can your wife give you a ride to and from radiation, while your mind does the transitioning you will need to get used to it? I'm just thinking that once the mask moves from the "unknown" and into the "daily grind"....you'll relax...knowing that it's only 15 minutes or so...you'll have your fave CD's in your pocket...that it will just become part of your daily routine.

    Course, you know I don't know diddley yet...but making the mask didn't bother me, and I was SO SURE it would freak me out....another fear faced that my mind had conjured up a disaster in waiting.

    p
  • osmotar
    osmotar Member Posts: 1,006
    #12
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    Good Luck
    Good Luck with that one..heck it never hurts to ask :)
    I asked my rad tech one day if they ever had to strap people down, he smiled and said Linda, we never strap anyone down, we gently restrain them when required. Everything that was posted here is true, the mask affects us all differently, it's all in how we choose to deal with it.

    Linda
  • staceya
    staceya Member Posts: 720
    #13
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    Skiffin16 said:

    Whiz Bank Whirl...
    Like King Cole mentioned, you'll learn every click, buzz and rotation...you'll learn when they are done even before they take the few extra minutes to come in and unbolt you....I'd drive them nuts... Iknew from the repetiton and sound when it was over...

    I'd be relaxed and ready by the time they came in.

    Take comfortable clothes a favorite cd, and a xanax if neede.

    I only needed xanax for about a week, then I was used to it....nothing but a thing...

    Best,
    John

    That is EXACTLY how I could
    That is EXACTLY how I could tell where I was in the process..by the weird machine noises!!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
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    staceya said:

    That is EXACTLY how I could
    That is EXACTLY how I could tell where I was in the process..by the weird machine noises!!

    That Too...
    and the fact that I would cheat a little ...

    I didn't have the luxury of having the eye holes cut out. So I could barely squint my eyes open enough to see where the machine was in the sequence of rotations around my head.

    Then, once finished and unbolted...I'd get up and leave with the waffle marks across my forehead and squished nose.

    JG
  • patricke
    patricke Member Posts: 570
    #15
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    Hey Ditto, good luck with
    Hey Ditto, good luck with that. This is one of those times that you have to just buck up and mask your discomfort (i did not just say that)and just face it. I hear that the spring fashion masks are all the rage. They strap our heads down as there is no mrgin for error when your are being zapped. Try self-hypnosis, or meditation to disconnect durnig that time, you may find that it is very helpful.

    PATRICK
  • Pam M
    Pam M Member Posts: 2,196
    #16
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    Skiffin16 said:

    That Too...
    and the fact that I would cheat a little ...

    I didn't have the luxury of having the eye holes cut out. So I could barely squint my eyes open enough to see where the machine was in the sequence of rotations around my head.

    Then, once finished and unbolted...I'd get up and leave with the waffle marks across my forehead and squished nose.

    JG

    Never Saw It Coming
    I'm with you, Skiffin. I even tried to casually say "You know, some people on my support site say they have eye holes cut out of their mask so they could see . . . " One tech immediately said "Oh, no" while the second that was there made small side to side head shakes to let me know it was out of the question. I wonder why.

    And for the record - NOT missing having waffle face.
  • Pam M
    Pam M Member Posts: 2,196
    #17
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    I Know How You Feel
    I was the same way for surgery. "If I can just stay awake, I'll be ever so still. You can even restrain me, if I can just not be put under." Big, juicy no-go. Cancer diagnosis was the first time in my life (all 44 years) I needed surgery, and I could handle the idea of getting hacked on and burned (tonsillectomy) better than the thought of being forced into unconsciousness.

    As for the mask - it wasn't a thing I liked, but wasn't nearly as bad as I'd feared it might be. It really helped me to keep telling myself the mask wasn't intended to trap me - it was helping me to stay in precisely the best position for treatment. Imagine a sneeze in the middle of a rad session. We need something to keep us in place. It's a good thing.
  • hislove40
    hislove40 Member Posts: 51
    #18
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    Just do it :)
    Ditto -
    I only have 8 rads left and I hate the mask as much now as I did when I started. I even felt they accidentally must have given me someone else's mask as it is just so tight. Somehow it helps to know that none of the techs feel they could stand it - they told me that - so funny! I've even lost lots of weight and it still feels too tight. Anyway, I've come up with my own little ritual - no calming meds but just always have to go to the bathroom, blow my nose, take a drink of ice water like I'm going to be under for hours. I commented on the music one day how that was more like it and noticed that they seem to play that selection every day when I'm in there. Most places will let you play your own CD to help relax you even though I've never gone that far. I have to say every day even though it may be obnoxious, they laugh how much I HATE this! The other thing I do either out loud or to myself is count down when they take it off. Then I put my mouthpiece in, close my eyes, and say just do it. Then I take myself away in my mind with prayers, listening to the music, think hard about something else, and breathe through my nose. Also I remind myself that there is light at the end of the tunnel :). You can do this but know there are other people that hate that thing as much as you do! Good luck!!!
  • hislove40
    hislove40 Member Posts: 51
    #19
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    Just do it :)
    Ditto -
    I only have 8 rads left and I hate the mask as much now as I did when I started. I even felt they accidentally must have given me someone else's mask as it is just so tight. Somehow it helps to know that none of the techs feel they could stand it - they told me that - so funny! I've even lost lots of weight and it still feels too tight. Anyway, I've come up with my own little ritual - no calming meds but just always have to go to the bathroom, blow my nose, take a drink of ice water like I'm going to be under for hours. I commented on the music one day how that was more like it and noticed that they seem to play that selection every day when I'm in there. Most places will let you play your own CD to help relax you even though I've never gone that far. I have to say every day even though it may be obnoxious, they laugh how much I HATE this! The other thing I do either out loud or to myself is count down when they take it off. Then I put my mouthpiece in, close my eyes, and say just do it. Then I take myself away in my mind with prayers, listening to the music, think hard about something else, and breathe through my nose. Also I remind myself that there is light at the end of the tunnel :). You can do this but know there are other people that hate that thing as much as you do! Good luck!!!
  • stayingpositive
    stayingpositive Member Posts: 89
    #20
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    mls351w said:

    Unmasked?
    In my opinion, this is not a good idea, and I think you onc will not even consider it.
    I had to remain perfectly still sometimes for 15-20 minutes at a time. The radiation is literaly pin-pointed and any movement would place it where it does not need to go. I also had a pop-cicle stick with a big wad of wax on it in my mouth, just to keep my tongue restrained. That was worse than the mask for me. However, they left the stick out of my mouth for the last two weeks of radiation and it made it much easier.
    Maybe some valiums instead?
    Who knows, maybe you will re-write the procedure. Good luck to you.
    Again, only my opinion!

    Mark S.

    my rads over took mask home
    Yes i'm done! but brought the mask home with me not only as a reminder, but to see if my idea of re-designing it will make a differnece. Yes there are pieces of tape for alignment sites, the techs said where their tape was are the spots where 95 percent of all markings are, so I hope maybe in the future I can make someone more comfortable.
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #21
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    hislove40 said:

    Just do it :)
    Ditto -
    I only have 8 rads left and I hate the mask as much now as I did when I started. I even felt they accidentally must have given me someone else's mask as it is just so tight. Somehow it helps to know that none of the techs feel they could stand it - they told me that - so funny! I've even lost lots of weight and it still feels too tight. Anyway, I've come up with my own little ritual - no calming meds but just always have to go to the bathroom, blow my nose, take a drink of ice water like I'm going to be under for hours. I commented on the music one day how that was more like it and noticed that they seem to play that selection every day when I'm in there. Most places will let you play your own CD to help relax you even though I've never gone that far. I have to say every day even though it may be obnoxious, they laugh how much I HATE this! The other thing I do either out loud or to myself is count down when they take it off. Then I put my mouthpiece in, close my eyes, and say just do it. Then I take myself away in my mind with prayers, listening to the music, think hard about something else, and breathe through my nose. Also I remind myself that there is light at the end of the tunnel :). You can do this but know there are other people that hate that thing as much as you do! Good luck!!!

    No Bother!
    When I was fitted for the mask and had a CT scan done at the same time I was
    Pertified, but when I went for my first rad session they had cut eye holes out and the
    Room was bright and I didn't have to go "through" a machine, the machine went "around"
    Me. The mask is held in place with foam locking tabs and not strapped down, it is easily
    Removed if you have to do it yourself. I got on the table, head in place, pad under my knees
    then the mask was put on. The tech would put on a Billy Joel cd and leave the room. First the
    Exrays would be done, side and above then I would hear a loud click and the machine
    Would start with its own noise, it lasted two minutes and then the door would slide open
    And in came my techs. It was never a bother like I thought it would have been, but then again
    everyone s different.

    God bless
    Tonsil Dad

    Dan.

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