I need some Radiation Mask advice--Please Help

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Comments

  • RushFan
    RushFan Member Posts: 224

    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!!!

    No luck with URL
    Doug, I tried to access your CB site (I have one too)with no luck.
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    RushFan said:

    No luck with URL
    Doug, I tried to access your CB site (I have one too)with no luck.

    My Caring Bridge Site...
    I can make it easier... http://www.caringbridge.org/visit/dougbernstein

    That pic is on the most recent journal entry.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    RushFan said:

    No luck with URL
    Doug, I tried to access your CB site (I have one too)with no luck.

    Operator Error
    I got it to work, like Doug said, replace the -jpg at the end with.jpg

    Best,
    John
  • cwcad
    cwcad Member Posts: 117

    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

    I hated my mask!
    From the start I hated my mask. Getting it to form was a bother some ordeal. The mask was tight and I did not seem to have much problem with it the first week. It was the weeks that followed with the throat getting sore and my inability to swallow. I was producing so much phlegm that I was unable to swallow that I literally feared that I would drown in my own spittle. I was offered drugs and for some unknown reason I did not want to take the drugs. The chemo was already effecting my decisions. Never before did I refuse a good drug. As long as it was legal. Yet for some reason I did not want to be out of control while under drugs. I found that if I concentrated on breathing through the nose as the phlegm continued to collect in my throat made it easier to handle mentally. After two weeks I was not able to swallow any of the bile that I created and needed to carry a spittoon or a spit cup with me where ever I went.
  • ToBeGolden
    ToBeGolden Member Posts: 695
    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.

    Easy Time
    I'm male and had an easy time with the mask. I am posting this not to put down those patients that had found the mask difficult. However, for balance, it must be said that not everyone finds the mask a big challenge. For me, the mask looked worse than it was.

    My techs kept saying that my mask seemed extremely tight. And I did not lose any weight. On the other hand, my treatment lasted only 3 minutes.

    I was taking clonazapam for a movement disorder. This med does have a sedative effect, so I might have been cheating.

    I used Flonase, a prescription nasal spray to keep the nose clear. If you have any congestion at all, get something for it. Rick.
  • team stevens
    team stevens Member Posts: 46
    cwcad said:

    I hated my mask!
    From the start I hated my mask. Getting it to form was a bother some ordeal. The mask was tight and I did not seem to have much problem with it the first week. It was the weeks that followed with the throat getting sore and my inability to swallow. I was producing so much phlegm that I was unable to swallow that I literally feared that I would drown in my own spittle. I was offered drugs and for some unknown reason I did not want to take the drugs. The chemo was already effecting my decisions. Never before did I refuse a good drug. As long as it was legal. Yet for some reason I did not want to be out of control while under drugs. I found that if I concentrated on breathing through the nose as the phlegm continued to collect in my throat made it easier to handle mentally. After two weeks I was not able to swallow any of the bile that I created and needed to carry a spittoon or a spit cup with me where ever I went.

    hated the mask too!
    man, i thought i was the only one that felt like that.in my case, i have a trech tube & it was in during my rads. so when the saliva built up in my throat, it began to come out through the tube while i was on the table!! it was easier for me to breathe with the trech plus the techs had me at a 5 deg angle. it didn't hurt that my rad onc made sure i had taken an ativan about 45 minutes before each treatment
  • rozaroo
    rozaroo Member Posts: 665

    hated the mask too!
    man, i thought i was the only one that felt like that.in my case, i have a trech tube & it was in during my rads. so when the saliva built up in my throat, it began to come out through the tube while i was on the table!! it was easier for me to breathe with the trech plus the techs had me at a 5 deg angle. it didn't hurt that my rad onc made sure i had taken an ativan about 45 minutes before each treatment

    Ativan!
    I have never been into taking drug's but the Ativan sure did wonder's for me!
  • santa6
    santa6 Member Posts: 29
    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.

    Why we're men
    According to my Drs, there has been an alarming increase in the past 5+ years of men over 50 getting head & neck SCC. While tobacco use is a significant factor(never used it once) increasingly it's being linked to HPV - the same virus that causes cervical cancer for women. I had just turned 50 at the time of my diagnosis. I tested positive for HPV
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    rozaroo said:

    Ativan!
    I have never been into taking drug's but the Ativan sure did wonder's for me!

    Xanax
    My drug of choice for the mask anxiety....
  • KristynRuth86
    KristynRuth86 Member Posts: 140
    Skiffin16 said:

    Xanax
    My drug of choice for the mask anxiety....

    Yucky Mask!
    I have only worn it twice so far, once for the fitting, then once for an x ray. I start my rads tomorrow so I'll be wearing it for real! It makes me nervous b/c I feel like I need to yawn and I can't and I feel like I'm being trapped. I really want to ask for some medicin b/c I feel like I'm going crazy in there!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Yucky Mask!
    I have only worn it twice so far, once for the fitting, then once for an x ray. I start my rads tomorrow so I'll be wearing it for real! It makes me nervous b/c I feel like I need to yawn and I can't and I feel like I'm being trapped. I really want to ask for some medicin b/c I feel like I'm going crazy in there!

    So ask....
    That's what they are there for...to help you get through it with as minimal discomfort as possible.

    I only needed the Xanax for a week or so, then I was used to it.

    Others have mentioned asking about cutting the eyes out, etc...but anxiety meds worked fine for me.

    Also, take a CD with you, they usually have music or will let you bring a CD of your choice. They'll give you warm blankets, etc...

    Best,
    John
  • JohnVon
    JohnVon Member Posts: 25 Member

    Hello I'm so glad I found this feed. I have head and neck cancer and I'm currently getting radiation treatments. My mask has become extremely tight....especially choking me and crushing my already sore adam's apple. It's excruciating and I just can't endure it anymore. My oncologist cut a hole next to my adam's apple but it hasn't helped at all. After losing 25 lbs after three surgeries, then fitted for the mask, I have now gained 15 lbs back. This no doubt hasn't helped. The pain to my swollen adam's apple is so bad I don't think I can endure it for another 5 weeks yet another treatment. Does anyone have any advice please?