I Can do it - had my mask made today and I survived LOL

Glenna M
Glenna M Member Posts: 1,576
edited March 2014 in Head and Neck Cancer #1
Hi everyone,

I just wanted to brag about how well I did today when they made my mask. It took them 3 tries to get it right, mine will be down over my shoulders also. The only part I really hated was when they placed the straps on my wrists and then looped the cord under my feet so it would pull my shoulders down. Felt like it was some type of ancient torture where they try to stretch your arms to make them longer :) I told the 2 technicians who were making the mask that I made it through by pretending I was having an exotic facial treatment at a very expensive spa. They laughed and said I had a very good imagination, whatever it takes to get you through it.

I feel this is one hurdle I've crossed with many more to come. But if I can handle the mask I can handle anything.

Take care everyone and God Bless you all

Glenna
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Comments

  • Artray
    Artray Member Posts: 24
    #2
    Glenna,
    Congrats to you! I
    Glenna,
    Congrats to you! I remember how much my husband b__tched when they made his mask which also went down over his shoulders, and he is/was a big man! He said he wouldn't be able to be held down and he couldn't do it and he stressed over it and I just didn't listen and told him this was a no option thing...he had to find a way to deal with it (just not as cold hearted as it sounded in writing!).
    As time went by it became more comfy, probably because he started to lose weight during the treatments?
    We now have the mask on display...testament to the endurance he went thru.

    Good luck to you...our thoughts are with you!
  • needhope1
    needhope1 Member Posts: 29
    #3
    Glad you made it through
    Glad you made it through this! My husband hasnt begun treatment yet...(chemo starts this Thursday, radiation in about 2 months) I worry about the whole process with this "mask", your post gives me hope that my husband will also make it through...

    Thanks for sharing.
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    #4
    Mask
    I said the same thing, when they made my mask. It was like a warm mini facial, until it dried... lol. Congrats on getting through the making of the dreaded mask. You and the mask will have many wonderful days together :)

    After my treatments were over, I was going to keep it, my son did not like it at all and wanted me to get rid of it. So we had a ceremony marking the end of treatments, and I took it to the middle of my street and ran it over with my truck. LOL
  • pennynl4
    pennynl4 Member Posts: 49
    #5
    Mask
    Good going, Glenna. My husband saw the radiation doctor today. We were there for 2 hours. He will have his made sometime soon. There are so many hurdles and you just got over one of them. When will you start treatment? My husband starts the 22nd if they get everything else done.

    Have you been told that you will have a tube? They told my husband he would, and now the radiation doctor said he probably wouldn't need one. I will have to talk to the chemo doctor again about it. He was the one who told us about the tube in the first place....not quite sure why the radiation doctor said he wouldn't need it. Maybe because they are changing the type of chemo he will be given.


    I am glad to see you are keeping a good sense of humor. My husband is so overwhelmed...he tries to have a positive and a sense of humor, but sometimes we both have our moments.

    Take care and I will look for your posts.

    Penny
  • Glenna M
    Glenna M Member Posts: 1,576
    #6
    pennynl4 said:

    Mask
    Good going, Glenna. My husband saw the radiation doctor today. We were there for 2 hours. He will have his made sometime soon. There are so many hurdles and you just got over one of them. When will you start treatment? My husband starts the 22nd if they get everything else done.

    Have you been told that you will have a tube? They told my husband he would, and now the radiation doctor said he probably wouldn't need one. I will have to talk to the chemo doctor again about it. He was the one who told us about the tube in the first place....not quite sure why the radiation doctor said he wouldn't need it. Maybe because they are changing the type of chemo he will be given.


    I am glad to see you are keeping a good sense of humor. My husband is so overwhelmed...he tries to have a positive and a sense of humor, but sometimes we both have our moments.

    Take care and I will look for your posts.

    Penny

    Just stay positive
    Hi Penny,

    One of the things that is helping me get through all of this is everyone's comments on this website. I couldn't do it without the advice and encouragement of everyone here, the one thing I keep reading from a lot of people is "stay positive" and "keep a good sense of humor". I too have my bad moments but they are getting less and less each day as I approach my treatment date. When I start to get scared or have negative thoughts I just try to remember what others have been through and tell myself - if they did it I can too.

    I saw my radiation doctor on Monday and was there for 2 hours also, during this visit they made my mask. I had already seen pictures of the mask and to put it mildly I was scared to death of it. It was much easier to tolerate than I thought it would be, it's a good thing because it took 3 tries for them to get it exactly the way they wanted it, mine goes down over my shoulders for some reason. One of my biggest fears about the mask was not being able to breath, I'm already short winded due to the size and location of my tumors. Once they put the material over my face to shape it I found it did not obstruct my breathing at all, I was also a little afraid of not being able to see anything but you can see through it. I start 35 radiation treatments on the 23rd and will start my chemo (cisplatin) on the same day - 2 day sessions in 3 week cycles. I have 2 separate types of cancer at the same time so they are doing the radiation on the larynx first as this is the most advanced and the tumor is quite large. After they finish with my larynx they are talking about doing more radiation on my left lung.

    I had the G-tube put in yesterday, it was not an option for me, I was told by my oncologist that it was a necessity as I was small built to start and have already lost 14 pounds. I am drinking Ensure now to try to gain some weight back and making sure I get plenty of rest to build my strenght back up, I am still eating by mouth as much food as my stomach can handle. I've read many posts that emphasize trying to eat whenever you can so you don't lose the ability to swallow. I have a meeting with a visiting nurse who is going to teach me how to use the G-tube and care for it. Inserting the tube is really an easy procedure and nothing to worry about. I am hoping they give your husband one as I have heard so many stories about this tube being a life saver once the radiation starts to burn your throat and mouth.

    It sounds like your husband and I will be starting our treatments a day apart so if you need any encouragement or just a shoulder to lean on you can either post here or send me a private message on this website. I'm just a beginner compared to many others here but if there is any way I can help anyone I am more than happy to do it. Like I've said before - this website is a life saver especially for any of us just starting out on this long journey.

    Please stay in touch and let me know how your husband is doing.

    Glenna
  • Glenna M
    Glenna M Member Posts: 1,576
    #7
    SIRENAF42 said:

    Mask
    I said the same thing, when they made my mask. It was like a warm mini facial, until it dried... lol. Congrats on getting through the making of the dreaded mask. You and the mask will have many wonderful days together :)

    After my treatments were over, I was going to keep it, my son did not like it at all and wanted me to get rid of it. So we had a ceremony marking the end of treatments, and I took it to the middle of my street and ran it over with my truck. LOL

    Undecided about the fate of my mask
    Hi Sirenaf42,

    I have read numerous postings on what different people have done with their masks after finishing their treatments. I haven't decided whether I will keep mine or not. Do I want a reminder of what I've been through - NO! Do I want a reminder that I went through all of this and survived - YES! I still have a few months before I have to make this decision and I am sure I will change my mind several times.

    I love the way you got rid of your mask. LOL

    Right now I am anxious to get my treatments started so I can fight this horrible thing that has invaded my body but I'm sure that once I've started I will wish I had more time to prepare myself mentally. I can't seem to make my mind up about anything lately :)

    I hope your doing better every day.

    Glenna
  • Glenna M
    Glenna M Member Posts: 1,576
    #8
    needhope1 said:

    Glad you made it through
    Glad you made it through this! My husband hasnt begun treatment yet...(chemo starts this Thursday, radiation in about 2 months) I worry about the whole process with this "mask", your post gives me hope that my husband will also make it through...

    Thanks for sharing.

    Don't dwell on the mask
    Hi needhope1,

    If your husband doesn't start radiation for 2 months then I am sure they probably won't make his mask until it gets closer to his treatment time. Please don't dwell on the thoughts of having to wear the mask as it will only cause unnecessary stress. I spent way too much time working myself up about it. For me it really wasn't that bad, it definitely helped that the 2 women who made it were the kindest, sweetest women I've met. They were so patient and talked me through everything. I hope your husbands cancer team are as great as mine, they seem to anticipate every fear I may have and deal with it before I have a chance to become a nervous wreck.

    Tell your husband to hang in there, he will make it through the mask process. Believe me, if I can do it ANYONE can.

    Take care and good luck.

    Glenna
  • Glenna M
    Glenna M Member Posts: 1,576
    #9
    Artray said:

    Glenna,
    Congrats to you! I
    Glenna,
    Congrats to you! I remember how much my husband b__tched when they made his mask which also went down over his shoulders, and he is/was a big man! He said he wouldn't be able to be held down and he couldn't do it and he stressed over it and I just didn't listen and told him this was a no option thing...he had to find a way to deal with it (just not as cold hearted as it sounded in writing!).
    As time went by it became more comfy, probably because he started to lose weight during the treatments?
    We now have the mask on display...testament to the endurance he went thru.

    Good luck to you...our thoughts are with you!

    Thank you
    Hi Artray,

    Thank you for your reply to my post. I personally am beginning to think women may be stronger emotionally then men are about this mask - LOL. I have personally met a couple of men who have been through the mask process and my sister knows several others. All of them had the same type of response - it was the most terrifying experience!! I will admit it is a little scary but it is definitely doable.

    Hope you and your husband are both doing well now.

    Glenna
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #10
    Congratulations!
    What an odd world, where we congratulate one another for surviving a mask fitting, for getting a tube inserted :).

    Congratulations, nonetheless.

    Turns out I AM the biggest wimp, still, when it comes to masks :)

    Take care,

    Joe
  • luckyfl
    luckyfl Member Posts: 42
    #11
    CONGRAT !!
    IAM SO HAPPY THAT YOU CAN DO IT ! IS NORMAL TO BE NERVOUSE I BELEIVE ACORDING TO MY OWN EXPERIENCE TOO.WHEN THEY MAKE MINE 3 MONTH AGO IT TOOK LIKE AN HOUR ,LOL, WELL IT WAS A SIMPLE MASK ONLY TO COVER MY FACE AND HALF OF MY NECK THATS ALL,SINCE MY RAD IS DIRECTLY INTO A SMALL AREA IN MY SOFT PALATE, THAT DAY I LAY IN THAT STRETCHER AND HE PUT THE FLAT PLASTIC NET OVER MY FACE AFTER SUMERGE IN WARM WATER AND HE PRESS DOWN TO MAKE THE IMPRESSION, THE DEAL WAS WHEN IT WAS TIME TO TRY ,,LO, I START COUGHING AND NO WAY I CAN STOP ESPECIALLY WHEN THE MOUTH PIECE GOES IN,,THE TECH HAVE TO GIVE ME A CANDY LIKE A KID TO CALM ME DOWN, I FNALLY WAS READY TO SCAN MY HEAD AND ALL THOSE PICS THEY TAKE FOR THE PLAN PREP ,AND AS YOU SAID ,OMG ,,WHEN THEY PUT THAT MASK AND CIP IT ON THE STRETCHER HEAD BOARD ,I THOUGH I AM GOING TO DIE ,,,IT WAS TERRIBLE .i LATER LEFT AND RETURN 3 WEEKS AGO TO START MY RAD,, I PRAY SO I DON'T INTERRUPT THE PLAN ,,AND GOD HELP ME TILL THIS DAY,,,2 MORE WEEKS TO GO AND IAM DONE.
    GOOD LUCK GLENN AND GOD BLESS YOU.
  • Glenna M
    Glenna M Member Posts: 1,576
    #12
    soccerfreaks said:

    Congratulations!
    What an odd world, where we congratulate one another for surviving a mask fitting, for getting a tube inserted :).

    Congratulations, nonetheless.

    Turns out I AM the biggest wimp, still, when it comes to masks :)

    Take care,

    Joe

    You're right
    Soccerfreaks, I never really thought of it that way but you are right about the "unusual" things we congratulate each other for. But it helps and that's all that matters for now, the encouragement and "congratulations" have helped me make it this far.

    You still have a chance of losing the title of "biggest wimp". I made it through the fitting of the mask but the real test comes when they start the treatment. Then we will see who the biggest wimp really is :) Not that I want to take that title from you -LOL

    I'm still not 100% positive about the treatment plan. I saw my ENT yesterday so he could go over the last CT scan with me as he said I may have to have my larynx removed if the cancer has invaded the cartillage. Just my luck, the hospital did a scan of my throat instead of my larynx so I have to go in for another scan of the larynx. I started to get frustrated when I heard this because my onco and rad drs have already decided on the treatment plan and I just want to get started as they have said both cancers are in the advanced stages. I know the ENT knows more than me (haha) but the waiting is still the worst part.

    Thanks and take care,

    Glenna
  • Glenna M
    Glenna M Member Posts: 1,576
    #13
    luckyfl said:

    CONGRAT !!
    IAM SO HAPPY THAT YOU CAN DO IT ! IS NORMAL TO BE NERVOUSE I BELEIVE ACORDING TO MY OWN EXPERIENCE TOO.WHEN THEY MAKE MINE 3 MONTH AGO IT TOOK LIKE AN HOUR ,LOL, WELL IT WAS A SIMPLE MASK ONLY TO COVER MY FACE AND HALF OF MY NECK THATS ALL,SINCE MY RAD IS DIRECTLY INTO A SMALL AREA IN MY SOFT PALATE, THAT DAY I LAY IN THAT STRETCHER AND HE PUT THE FLAT PLASTIC NET OVER MY FACE AFTER SUMERGE IN WARM WATER AND HE PRESS DOWN TO MAKE THE IMPRESSION, THE DEAL WAS WHEN IT WAS TIME TO TRY ,,LO, I START COUGHING AND NO WAY I CAN STOP ESPECIALLY WHEN THE MOUTH PIECE GOES IN,,THE TECH HAVE TO GIVE ME A CANDY LIKE A KID TO CALM ME DOWN, I FNALLY WAS READY TO SCAN MY HEAD AND ALL THOSE PICS THEY TAKE FOR THE PLAN PREP ,AND AS YOU SAID ,OMG ,,WHEN THEY PUT THAT MASK AND CIP IT ON THE STRETCHER HEAD BOARD ,I THOUGH I AM GOING TO DIE ,,,IT WAS TERRIBLE .i LATER LEFT AND RETURN 3 WEEKS AGO TO START MY RAD,, I PRAY SO I DON'T INTERRUPT THE PLAN ,,AND GOD HELP ME TILL THIS DAY,,,2 MORE WEEKS TO GO AND IAM DONE.
    GOOD LUCK GLENN AND GOD BLESS YOU.

    I asked the technicians what would happen if I started to cough and they both just looked at me and said "just don't cough" LOL like I can control it. I got lucky and didn't have to while they were shaping the mask. I didn't get a mouth piece, I'm not sure why unless it is because the radiation is for my larynx and not my mouth. Whatever the reason I'm just glad I don't have to use one as I know that makes it more difficult to swallow.

    Good luck with the rest of your treatment, I hope all goes well and you can start to enjoy your life in a more "normal" way.

    God Bless,
    Glenna
  • Fireman
    Fireman Member Posts: 39
    #14
    Mask
    I am proud of you. Keep using your imagination and humor. It helps keep you positive and can help you handle things you didn't think you could. I remember reading how fearful you were of the masking event and look at you now. You can look back and laugh about it. You are abosolutely right when you say you can handle anything. Keep that mind set and write it down as an affirmation that you can refer to when burdens seem a little too heavy to handle. Great accomplishment for you and I am so happy for you.
  • Glenna M
    Glenna M Member Posts: 1,576
    #15
    Fireman said:

    Mask
    I am proud of you. Keep using your imagination and humor. It helps keep you positive and can help you handle things you didn't think you could. I remember reading how fearful you were of the masking event and look at you now. You can look back and laugh about it. You are abosolutely right when you say you can handle anything. Keep that mind set and write it down as an affirmation that you can refer to when burdens seem a little too heavy to handle. Great accomplishment for you and I am so happy for you.

    Thank you Fireman for your encouraging letter. I do have to laugh when I think back to how afraid I was of the mask, I guess it's only human nature to fear the unknown :) I have a wonderful cancer team and they are always saying kind words and trying to encourage me through all of this. They all know how afraid I have been and I think my attempts at humor have shown them that I am trying to deal with all of this in a "rational" adult manner. I also think it makes it easier on them when I joke instead of crying and that is another thing that helps me stay strong. I have always been the "caregiver" in my family and have always remained strong for everyone else so that is my plan for making it through this. I will keep telling myself at each treatment that I have to remain strong for the wonderful nurses to make it easier for them as they always look so sad when they see that I am afraid. I guess it's just in my nature to worry about everyone else first.

    I start my treatment on the 23rd so I will find out then whether I am all talk or whether I can really pull this off. I'm sure I can and I've convinced myself that it will only get easier after each treatment as I will be used to the procedure and know what to expect. I keep thinking of the childrens book "The Little Train that Could" and it makes me smile as I now call myself the "Little woman that could". It's silly sometimes what a person will think about when they have to go through something like this :)

    Thanks again and take care of yourself.
    Glenna
  • pennynl4
    pennynl4 Member Posts: 49
    #16
    Glenna M said:

    Just stay positive
    Hi Penny,

    One of the things that is helping me get through all of this is everyone's comments on this website. I couldn't do it without the advice and encouragement of everyone here, the one thing I keep reading from a lot of people is "stay positive" and "keep a good sense of humor". I too have my bad moments but they are getting less and less each day as I approach my treatment date. When I start to get scared or have negative thoughts I just try to remember what others have been through and tell myself - if they did it I can too.

    I saw my radiation doctor on Monday and was there for 2 hours also, during this visit they made my mask. I had already seen pictures of the mask and to put it mildly I was scared to death of it. It was much easier to tolerate than I thought it would be, it's a good thing because it took 3 tries for them to get it exactly the way they wanted it, mine goes down over my shoulders for some reason. One of my biggest fears about the mask was not being able to breath, I'm already short winded due to the size and location of my tumors. Once they put the material over my face to shape it I found it did not obstruct my breathing at all, I was also a little afraid of not being able to see anything but you can see through it. I start 35 radiation treatments on the 23rd and will start my chemo (cisplatin) on the same day - 2 day sessions in 3 week cycles. I have 2 separate types of cancer at the same time so they are doing the radiation on the larynx first as this is the most advanced and the tumor is quite large. After they finish with my larynx they are talking about doing more radiation on my left lung.

    I had the G-tube put in yesterday, it was not an option for me, I was told by my oncologist that it was a necessity as I was small built to start and have already lost 14 pounds. I am drinking Ensure now to try to gain some weight back and making sure I get plenty of rest to build my strenght back up, I am still eating by mouth as much food as my stomach can handle. I've read many posts that emphasize trying to eat whenever you can so you don't lose the ability to swallow. I have a meeting with a visiting nurse who is going to teach me how to use the G-tube and care for it. Inserting the tube is really an easy procedure and nothing to worry about. I am hoping they give your husband one as I have heard so many stories about this tube being a life saver once the radiation starts to burn your throat and mouth.

    It sounds like your husband and I will be starting our treatments a day apart so if you need any encouragement or just a shoulder to lean on you can either post here or send me a private message on this website. I'm just a beginner compared to many others here but if there is any way I can help anyone I am more than happy to do it. Like I've said before - this website is a life saver especially for any of us just starting out on this long journey.

    Please stay in touch and let me know how your husband is doing.

    Glenna

    Hi Glenna,
    Thank you for all your help. I just noticed your reply. I am trying to stay positive and you are a real trooper!!!

    Who is going to take care of you while you are under going this? As mom's and wife's, we seem to take care of everyone else, but you need someone to take care of you.

    Yes, you and my husband will be starting treatments close together. We are still not sure about the radiation....maybe the 22nd. He has his mask made on the 18th. I'm not sure after that how long it all takes. His chemo starts the 24th.

    Keep up the good work Glenna and we will all be here cheering you on. And I agree, I couldn't have gone through all of this alone.....everyone has been so wonderful.

    Thanks to you, Glenna and to everyone here.
    Penny
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    #17
    Glenna M said:

    Thank you Fireman for your encouraging letter. I do have to laugh when I think back to how afraid I was of the mask, I guess it's only human nature to fear the unknown :) I have a wonderful cancer team and they are always saying kind words and trying to encourage me through all of this. They all know how afraid I have been and I think my attempts at humor have shown them that I am trying to deal with all of this in a "rational" adult manner. I also think it makes it easier on them when I joke instead of crying and that is another thing that helps me stay strong. I have always been the "caregiver" in my family and have always remained strong for everyone else so that is my plan for making it through this. I will keep telling myself at each treatment that I have to remain strong for the wonderful nurses to make it easier for them as they always look so sad when they see that I am afraid. I guess it's just in my nature to worry about everyone else first.

    I start my treatment on the 23rd so I will find out then whether I am all talk or whether I can really pull this off. I'm sure I can and I've convinced myself that it will only get easier after each treatment as I will be used to the procedure and know what to expect. I keep thinking of the childrens book "The Little Train that Could" and it makes me smile as I now call myself the "Little woman that could". It's silly sometimes what a person will think about when they have to go through something like this :)

    Thanks again and take care of yourself.
    Glenna

    Treatment
    The first treatment is the hardest, fear of the unknown. But once you go through it a couple times, you will see its the same everytime and you will create your own mental pattern of what is going to occur. I was allowed to chose what music I wanted to listen to and I chose "Faith" by George Michael. I burned it on a cd with a couple other songs and my techs played it for me. I was like a robot, Id go in, remove shirt, wrap towel, lay on table, insert mouth piece, put hands in fuzzy restraints, strech out the legs, put on mask, get attached to table, get warm blankets (I liked the blankets). The music would start, my techs would leave the room. I knew the machine would move 7 different times and I knew where it would start and where it would stop, the count down began. By the end of the session I knew exactly at what point in the song I should be done, the one time the music stopped and I was still on the table... I did freak out just a tad. I was like, Im always done by song 2, 3rd chorus... why am I still here, did they forget about me.. hello Im on a table in here and Im cold HELLLO.. they finally came in and explained that once a week, they took CAT scans for the doctor to review so thats why I was on the table longer. Im like, man you really gotta tell people this kinda stuff. I almost had a panic attack LOL

    I probably shouldnt mention the time the table got stuck up in the air and I couldnt get down and I had to lay up there for an extra 10 minutes while they called for repairs...

    Aww good times in the radiation room :)
  • Glenna M
    Glenna M Member Posts: 1,576
    #18
    SIRENAF42 said:

    Treatment
    The first treatment is the hardest, fear of the unknown. But once you go through it a couple times, you will see its the same everytime and you will create your own mental pattern of what is going to occur. I was allowed to chose what music I wanted to listen to and I chose "Faith" by George Michael. I burned it on a cd with a couple other songs and my techs played it for me. I was like a robot, Id go in, remove shirt, wrap towel, lay on table, insert mouth piece, put hands in fuzzy restraints, strech out the legs, put on mask, get attached to table, get warm blankets (I liked the blankets). The music would start, my techs would leave the room. I knew the machine would move 7 different times and I knew where it would start and where it would stop, the count down began. By the end of the session I knew exactly at what point in the song I should be done, the one time the music stopped and I was still on the table... I did freak out just a tad. I was like, Im always done by song 2, 3rd chorus... why am I still here, did they forget about me.. hello Im on a table in here and Im cold HELLLO.. they finally came in and explained that once a week, they took CAT scans for the doctor to review so thats why I was on the table longer. Im like, man you really gotta tell people this kinda stuff. I almost had a panic attack LOL

    I probably shouldnt mention the time the table got stuck up in the air and I couldnt get down and I had to lay up there for an extra 10 minutes while they called for repairs...

    Aww good times in the radiation room :)

    You're right - the blankets are the best!! I'm always cold and having those warm blankets wrapped around my shoulders has always been a small source of comfort. Makes you feel all safe and snug.

    After hearing about your experience (getting stuck up in the air) I think I'll ask the technicians when was the last time the table had a service check up :)

    Take care,
    Glenna

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