I need some Radiation Mask advice--Please Help

2

Comments

  • davidgskinner
    davidgskinner Member Posts: 81
    finz2lft said:

    MASK HELP
    I did it today. It took and hour for the test run, and it is done. I thought of pleasant places and it was over. THANK YOU TO EVERYONE!!! FINZ

    Right on...
    Good job, brother. We all knew you could do it.
    Pretty soon you'll be dozing off in that thing!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    MarineE5 said:

    Yes
    Yes, I was, for a short time at both. I'll send you a private message on this site.

    Semper Fidelis

    NAS - MCAS
    Lloyd...NAS is Naval Air Station...MCAS is Marine Corps Air Station

    Hope you got squared away, sounds like you did. It seems much better when you start and have time references to guide you.

    Stay in touch, best,
    John
  • santa6
    santa6 Member Posts: 29
    Holes!!
    I had all the exact same experiences and reactions. At trial I was adament we needed to try something different. I had no interest in doing more drugs. Then a tech suggested we cut out the nose and the eyes in one opening. They did that right there and it was a piece of cake. Did treatment with my eyes open. I am somewhat claustrophobic too - the cut out made all the difference.
  • tonyanddenise
    tonyanddenise Member Posts: 70
    finz2lft said:

    MASK HELP
    I did it today. It took and hour for the test run, and it is done. I thought of pleasant places and it was over. THANK YOU TO EVERYONE!!! FINZ

    congrats
    mine is from my arm pits up. I totally flipped out the first time. could not even blink my eyes.Now.... I take a few breaths put my hands in my pockets close my eyes. I have been actually falling asleep in it. So see! it does get better.
  • Tricia02
    Tricia02 Member Posts: 129
    santa6 said:

    Holes!!
    I had all the exact same experiences and reactions. At trial I was adament we needed to try something different. I had no interest in doing more drugs. Then a tech suggested we cut out the nose and the eyes in one opening. They did that right there and it was a piece of cake. Did treatment with my eyes open. I am somewhat claustrophobic too - the cut out made all the difference.

    No women re mask
    I have just been reading all the comments re the mask of stillness. Seems you are all men. Where are the women? I read a couple of posts and said to Nick I bet these are all men lol. If we had more women commenting I think we would have a more balanced perspective. I agree the mask is quite an ordeal but its soooooooooooooo totally doable, even for someone like me who is claustophobic. I wasn't even offered something to relax me and it never occured to me. I had Comfortably Numb playing everyday and that took my mind into another zone. I am almost 5 years out of treatment and getting totally used to the "new me" and loving life. Good luck with the rest of your treatments, it will be over before you know it.
  • JUDYV5
    JUDYV5 Member Posts: 392
    Tricia02 said:

    No women re mask
    I have just been reading all the comments re the mask of stillness. Seems you are all men. Where are the women? I read a couple of posts and said to Nick I bet these are all men lol. If we had more women commenting I think we would have a more balanced perspective. I agree the mask is quite an ordeal but its soooooooooooooo totally doable, even for someone like me who is claustophobic. I wasn't even offered something to relax me and it never occured to me. I had Comfortably Numb playing everyday and that took my mind into another zone. I am almost 5 years out of treatment and getting totally used to the "new me" and loving life. Good luck with the rest of your treatments, it will be over before you know it.

    I agree with Tricia02
    I just put my mind in another zone. It wasn't a great experience - but it went by faster then I thought. As the treatments progressed they cut down the points of radiation so the time on table decreased. I did find myself liking on radiation tech alot more then the other because she moved a lot quicker getting me off that table.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Tricia02 said:

    No women re mask
    I have just been reading all the comments re the mask of stillness. Seems you are all men. Where are the women? I read a couple of posts and said to Nick I bet these are all men lol. If we had more women commenting I think we would have a more balanced perspective. I agree the mask is quite an ordeal but its soooooooooooooo totally doable, even for someone like me who is claustophobic. I wasn't even offered something to relax me and it never occured to me. I had Comfortably Numb playing everyday and that took my mind into another zone. I am almost 5 years out of treatment and getting totally used to the "new me" and loving life. Good luck with the rest of your treatments, it will be over before you know it.

    Everyone is Different
    LOL, I don't think it's really a male/female thing, or a matter of anxiety control or management. You do what you have to do to get through.

    I went through treatment as everyone has, but didn't use or require a PEG. I don't think I was anymore tough than the next person, just for me it wasn't an issue.

    It's all doable, just different for each. Some need one thing or another, others need something else to help them get through it easier. Why make it rougher than needed if there's something to lessen the anxiety or pain during a particular phase of treatment.

    Best,
    John
  • Tricia02
    Tricia02 Member Posts: 129
    JUDYV5 said:

    I agree with Tricia02
    I just put my mind in another zone. It wasn't a great experience - but it went by faster then I thought. As the treatments progressed they cut down the points of radiation so the time on table decreased. I did find myself liking on radiation tech alot more then the other because she moved a lot quicker getting me off that table.

    hehehe Judy
    Hey Judy it cannot be that men do not know how to zone out can it? After all they get loads of practice every time a woman speaks to them. Sorry guys couldn't resist lol.
  • Pam M
    Pam M Member Posts: 2,196
    Skiffin16 said:

    Everyone is Different
    LOL, I don't think it's really a male/female thing, or a matter of anxiety control or management. You do what you have to do to get through.

    I went through treatment as everyone has, but didn't use or require a PEG. I don't think I was anymore tough than the next person, just for me it wasn't an issue.

    It's all doable, just different for each. Some need one thing or another, others need something else to help them get through it easier. Why make it rougher than needed if there's something to lessen the anxiety or pain during a particular phase of treatment.

    Best,
    John

    I Dunno, John
    Maybe there is a difference between the sexes. It seems to me (I could be remembering wrong, though) that more women than men do rads without anxiety meds, and more men than women do not get PEGs. Is this really the case? If so, wonder why.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Pam M said:

    I Dunno, John
    Maybe there is a difference between the sexes. It seems to me (I could be remembering wrong, though) that more women than men do rads without anxiety meds, and more men than women do not get PEGs. Is this really the case? If so, wonder why.

    Could Be, Not Sure
    I can't answer that....seems like the majority of men on here had the PEG, not sure, but seems like most of the women as well.

    For me the anxiety of the mask wasn't so much a claustrophobia issue as it was more a restraint or confinement anxiety.

    I'm one of those that can't even stand to have my feet tucked into the sheets, LOL...

    Also, like mentioned it was just initially, after I got use to the routine in a few days I was fine.

    My mother on the other hand freaks out by just having a face cloth over her face. I'm sure it's individual to everyone what their little quircks are.

    JG
  • Pam M
    Pam M Member Posts: 2,196
    Skiffin16 said:

    Could Be, Not Sure
    I can't answer that....seems like the majority of men on here had the PEG, not sure, but seems like most of the women as well.

    For me the anxiety of the mask wasn't so much a claustrophobia issue as it was more a restraint or confinement anxiety.

    I'm one of those that can't even stand to have my feet tucked into the sheets, LOL...

    Also, like mentioned it was just initially, after I got use to the routine in a few days I was fine.

    My mother on the other hand freaks out by just having a face cloth over her face. I'm sure it's individual to everyone what their little quircks are.

    JG

    Hmm
    For me, too, it was not a claustrophobia issue - it was dread of being restrained and unable to free my own self. Luckily, I was able to self-soothe (starting with hearing the sound of that huge door cranking closed).
  • hawk711
    hawk711 Member Posts: 566
    Skiffin16 said:

    Xanax & James Taylor
    Lloyd

    I sent you an email...

    Basically I used Xanax for the first few days, but it zomked me out in the evenings. I drove myself everyday and that wasn't a problem with Xanax. The Xanax just took the edge off of the anxiety.

    After the first few days I would split them in half, the quarters.

    I only needed that initial week or so and I was used to the scenario.

    They also had a CD player and I brought in a disk they kept there for me. I chose James Taylor, haven't listened since though to it.

    John

    music
    John
    Too Funny, my music was Luther Vandross greatest hits. I learned the first 5-6 songs and would sing along in my head to the songs. Each song lasted 3-5 minutes and the rad treatment flew by.....Learn to sing, it takes you away from the ordeal....
    I haven't listened to the tape since I got through with rads, 4 months!
    Steve
  • lady4darknight
    lady4darknight Member Posts: 90 Member
    Pam M said:

    Hmm
    For me, too, it was not a claustrophobia issue - it was dread of being restrained and unable to free my own self. Luckily, I was able to self-soothe (starting with hearing the sound of that huge door cranking closed).

    claustrophobic
    Hi all, I finally dug my mask out today and faced it after hiding it away 6 weeks ago. I am extremely claustrophobic and do not like like being restrained at all. Ativan got me thru 95% of my treaments..I freaked out 4 times but good techs helped then and for that I will always be grateful. I took mine out today because I fly back tomorrow and get my scans repeated on Tuesday and I am terrified of the results being bad. So I dug the scary(lol)thing and put it back on my face and told myself that the mask is not a s scary as the alternative. I wish I had known then what I know now. If I have to repeat then give me the ativan but I won't let the mask beat me this time. Tricia..this is my female point of view..lol.

    Debbie
  • Tricia02
    Tricia02 Member Posts: 129

    claustrophobic
    Hi all, I finally dug my mask out today and faced it after hiding it away 6 weeks ago. I am extremely claustrophobic and do not like like being restrained at all. Ativan got me thru 95% of my treaments..I freaked out 4 times but good techs helped then and for that I will always be grateful. I took mine out today because I fly back tomorrow and get my scans repeated on Tuesday and I am terrified of the results being bad. So I dug the scary(lol)thing and put it back on my face and told myself that the mask is not a s scary as the alternative. I wish I had known then what I know now. If I have to repeat then give me the ativan but I won't let the mask beat me this time. Tricia..this is my female point of view..lol.

    Debbie

    hi
    Hi Debbie i just wanted to wish you good luck with your scans, it is a terrifying time I know so please let me know how you get on ok? I shall be thinking of you Tuesday and sending good vibes across the pond to you. Bye for now Tricia
  • dennis318
    dennis318 Member Posts: 349 Member

    claustrophobic
    Hi all, I finally dug my mask out today and faced it after hiding it away 6 weeks ago. I am extremely claustrophobic and do not like like being restrained at all. Ativan got me thru 95% of my treaments..I freaked out 4 times but good techs helped then and for that I will always be grateful. I took mine out today because I fly back tomorrow and get my scans repeated on Tuesday and I am terrified of the results being bad. So I dug the scary(lol)thing and put it back on my face and told myself that the mask is not a s scary as the alternative. I wish I had known then what I know now. If I have to repeat then give me the ativan but I won't let the mask beat me this time. Tricia..this is my female point of view..lol.

    Debbie

    Can you Answer a question Lady4darknight
    I know you have a trach Like I do, I will have mine removed in 3 weeks and counting, can you feel your trach in your throat hitting, also, i have a shiley in, i do not tie mine on, i tape it. I can't stand the ties in the shower getting my clothes wet, and it waste alot of time. the ovel plastic has almost caused a hardeness where it is place, also the docotr said should have plenty of room once it is out...can you tell any differecne when it is removed, i can, i want your input please, thanks. Dennis
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    Self-hypnosis to help with the Mask?
    I'm going for my simulation and mask creation today. I never thought that I might freak out or it would be that uncomfortable. My wife is a certified Hypnotherapist. If I have trouble, I'll ask her to make me a self hypnosis CD to help me get through it. I can usually get into a state of hypnosis to where you can do near anything to me and it won't hurt or bother me.
  • RushFan
    RushFan Member Posts: 224

    Self-hypnosis to help with the Mask?
    I'm going for my simulation and mask creation today. I never thought that I might freak out or it would be that uncomfortable. My wife is a certified Hypnotherapist. If I have trouble, I'll ask her to make me a self hypnosis CD to help me get through it. I can usually get into a state of hypnosis to where you can do near anything to me and it won't hurt or bother me.

    the Mask; a love/hate relationship
    I too was not too happy to learn that I would have a mask. I was up-front with my Rad Oncologist and he was super...said I would do great, if not...he would give something to help me relax.

    Ryan, one of the Rad techs, is a super guy as well and he really took care of me. Everyday I would go in for treatment I would tell myself " this sucks, but this mask is going to save my life". I also thought about my wife, kids and started each session with prayer.

    I also really liked some music playing for distraction.

    Best to all,
    Chuck.
  • Tricia02
    Tricia02 Member Posts: 129

    Self-hypnosis to help with the Mask?
    I'm going for my simulation and mask creation today. I never thought that I might freak out or it would be that uncomfortable. My wife is a certified Hypnotherapist. If I have trouble, I'll ask her to make me a self hypnosis CD to help me get through it. I can usually get into a state of hypnosis to where you can do near anything to me and it won't hurt or bother me.

    self-hypnosis to help with the mask
    Hi, it may be different in the states, but here in Uk you are in a different departmenr when they make the mask and I couldn't have earphones in for obvious reasons. So just warning in case it's the same over the pond. Once they had made the mask I had to return at a later date for the simulation part.
  • micktissue
    micktissue Member Posts: 430
    Finz
    I too freaked out when the mask was made then again at the trial run and then again for the first day. The MRI also freaked me out. The funny thing is before cancer, I was never claustrophobic. I needed Ativan for the first week and also my favorite music. I took the Band, Mark McLay, Oh Brother soundtrack that first week. Eventually I got used to it and a couple of times even fell asleep.

    What I realized later is that the freak out had nothing to do with the mask. It had everything to do with outcome. The mask triggered my fear and gave it a target. I am scared to death so it must be the mask! No so. It was the fear of not surviving the treatment.

    Once I got my head around that and stopped focusing on outcome, I was never afraid again. Indeed the PET scan was a breeze (fell asleep there too).

    I hope this helps.

    Best,

    Mick
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154

    Self-hypnosis to help with the Mask?
    I'm going for my simulation and mask creation today. I never thought that I might freak out or it would be that uncomfortable. My wife is a certified Hypnotherapist. If I have trouble, I'll ask her to make me a self hypnosis CD to help me get through it. I can usually get into a state of hypnosis to where you can do near anything to me and it won't hurt or bother me.

    Call me your friendly neighborhood Spider Man!
    So I just got my mask made. It actually wasn't all that bad. I used some self-hypnosis techniques to relax and the Radiation Tech had to actually shake my shoulder to let me know when it was all done. She was pretty surprised as to how relaxed I was throughout the whole thing. I can put myself into a hypnotic state pretty quickly.

    www.caringbridge.org/tres/images/photos/2/0/2/9/202994/l.lhvBpzczoffOHJBX-jpg (replace the - with a . before the jpg in the URL)

    Nope - Can't directly put in images. Have to post the link to the pic. I think it's more like a super hero mask. Call me Spider Man!

    You know if anyone is having trouble relaxing with the mask, my wife might be able to help. She's a certified Hypnotherapist and does custom hypnosis sessions that you can download as an mp3 or wav to burn to a CD. I can give anyone her website link if they want.

    Good luck to all my fellow masked super heroes!!!