Introduction - Stage 1 Vocal cord cancer, total newbie

donka
donka Member Posts: 15
in Head and Neck Cancer #1

Hi all,

 

I've been reading the board extensively and so far I've gained a ton of knowledge from you!  I wanted to say thanks, and introduce myself because as crappy as it is to be a member of the 'club', here I am.  I think I might need you guys for support, who knows, but I feel like I've already got so much from the SuperThread and various posts. 

I had my radiation mask molded yesterday and I think I made it through in large part because of comments here, so thanks!  I am pretty anxious about feeling trapped, cried before the ordeal started, but I had it fitted and went through a 10+ minute CT scan with it on and I made it, no issues!  Feeling pretty proud about that considering my anxieties :)

Anyhow, just wanted to say thanks again, and well...here we go!  Radiation starts Monday, I'm expecting the worst but I find that helps me cope better.  If I expect the worst, it's only up from there, right?

Cheers,

Donka

Radiation Mask

Comments

  • Steve5
    Steve5 Member Posts: 147
    #2
    Hi Donka

    Okay, take a deep breath and let it out, then repeat, and repeat again.  I am, as my mentors have taught me, sorry that you have to be here  - but welcome.  You are starting down a difficult path but as many of the wonderful sage and caring people on this net will tell you, you will make it through to the end.  It will be a new end, a new start and a new you when you are done, but you will make it through. It will get tough and lousy but you must do it.  You can gain knowledge, help, support and strength from those on this end.  AND, you can lean on them, us, when you need to. 

    The mask can be a terrifying ordeal and there are those that get use to it, learn to love it, learn to hate it, run over it with their trucks when the treatments are done or take sledge hammers to them, or mount them somewhere.

    To share my own personal way of dealing with it, I took a small dose of valium 20 minutes before each treatment, it helped settle me down.  I never opened my eyes after it was strapped down until they unstrapped it.  I spent 35 treatments going over my kitchen and dining room renovation.  The other thing I did was ask the rad onco techs to talk me through the treatment.  I asked them to let me know what stage we were in - okay doing the scan, scan looks good, first treatment, second treatment, almost done, done, coming in, unstrapping - they were wonderful.  By the 25th treatment I was ready to go in without the valium, I made it through the last few without the drug.  The last week can be hell, the week before can be a rough - but when you are done, you are done.

    Okay that's all for now - write whenever you need to, if you are sad and want some help write, if something goes well and want to tell us, write, this is a wonderful bunch and they educated me, carried me, loved me, prayed for me and got me through. I am a little different but I am here!!!!!!!!  The new me!!

    Thinking good thoughts your way, start the countdown.

    All the best, talk to you soon again

    Steve

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #3
    Welcome

    Donka,

    like you, I am relatively new to this forum yet I have already made so many, wonderful and supportive connections. I'm glad you found this place of support. 

    I go in next week for my simulation. The week after, I start treatment. As of this moment, I am not really anxious but that maybe subject to change! Next week is when I get my mask made. Then, I go inpatient for 5 days with chemo and daily rad treatment. 12 week program. Some in and some out patient. 

    I know this is all scary and a lot to take in. I have a good understanding what to expect, but the caveat is everyone is different. So despite my understanding of what to expect, I really don't know how the treatment will effect me. The advice I will suggest is what i am doing...take it one day at a time, even one minute at a time if that's what it takes. 

    i'm told hydration is very important. My goal is to keep eating and swallowing. 

    Again, there are so many supportive people here. I wish I could give them one giant collective hug! If you have concerns or questions, start a post and before you know it, you will see just how many people care and will offer their support. 

    I wish you the very best. Stay strong. You can and will make it through it. This is a place where you will find many who have gone before us!

    BunnyMom

  • patricke
    patricke Member Posts: 570 Member
    #4
    NEWBIE

    Hey Donka,

    I'm sorry that you have to join us, but this is a great group to be with on your journey of battling the beast.  Catching the invasion at stage I is much to your advantage in getting an early beginning to defeat it.   It sounds like you are off to a good start in being able to conquer your fears and anxieties to get through the mask making and CT scan; excellent!  I like your approach of expecting the worst, so as you say, it can only go up from there.  Just remember that this is a marathon, not a sprint, so pace yourself; and that some days will be better than others.  On your worst days, remind yourself that "I can do this."  Best wishes.

    PATRICK  

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    WELCOME

    Donka,

    Welcome to the H&N forum, where almost all of us wore a mask and if that is your mask you have a very nice profile.

    I never enjoyed “mask time” very much, but with 1 Lorazapam and a few rock n’ roll tunes I found it to be interesting.  My mask had eye holes to watch the line-up lasers.

    The first few  weeks are easy and the last few doable (to be nice).  You never know how easy or hard your body will react to treatments.  Let’s hope it is smooth sailing for you.

    Drink plenty of water and keep swallowing, it is important.

    Peace,

    Matt

  • Goyca
    Goyca Member Posts: 220
    #6
    hello  donka .. welcome. i

    hello  donka .. welcome. i wisj u didnt have to deal with this stupid disease. But now that u r here, u r welcome, i wish u all the luck in the radiations.

    I cant give u any advice since i haven't started radiation yet, but my thoughts are with u.. Best of luck and stay strong. :)

     

     

    Goyca.

  • Guzzle
    Guzzle Member Posts: 710
    #7
    Goyca said:

    hello  donka .. welcome. i

    hello  donka .. welcome. i wisj u didnt have to deal with this stupid disease. But now that u r here, u r welcome, i wish u all the luck in the radiations.

    I cant give u any advice since i haven't started radiation yet, but my thoughts are with u.. Best of luck and stay strong. :)

     

     

    Goyca.

    Mask

    Donka, I really didn't find it as bad as I thought. A couple of songs on the radio and its over. You can breathe freely through the the mask. Good luck. G.

  • wmc
    wmc Member Posts: 1,804
    #8
    Welcome to the H&N

    Yes welcome, and sorry you need to be here. But here, is a good place to be for support and just getting your frustations out as well. I think Steve said it so well, I'll just have to agree with him. You are going down a bumpy road for sure, but you will get through it as well. 

    wmc  Oct 2013

  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Hi Donka

     

    Welcome to CSN H&N sorry to see you have this crap but glad to have you here with us. I still have both of my mask I keep them to remind me of the past so my putlook of tomorrow always looks better.

     

    Hondo

  • donka
    donka Member Posts: 15
    #10
    Thanks everyone!

    Thank you everyone, I will keep you posted on my progress.  Oops, in my original post I said radiation starts Monday, it starts in 2 Mondays, June 2nd.

    Bunnymom, if I could do the mask making and simulation, you can too!  The radiation therapists were really great and talked to me almost the whole time, and when they weren't talking I just went to my 'happy place' and imagined I was lying on a beach in the tropics waiting for a server to come by so I could order a cerveza :)  They assured me the mask making and CT scan both took longer than my treatments would, and I did both in one day.  woohoo!  I actually found the mask making part to be kind of fascinating and sort of just pretended I was getting a spa treatment facial...it's warm and they are massaging your face so it's not a huge stretch.

    Thanks again all, I can see I was lucky to have found you all.

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #11
    donka said:

    Thanks everyone!

    Thank you everyone, I will keep you posted on my progress.  Oops, in my original post I said radiation starts Monday, it starts in 2 Mondays, June 2nd.

    Bunnymom, if I could do the mask making and simulation, you can too!  The radiation therapists were really great and talked to me almost the whole time, and when they weren't talking I just went to my 'happy place' and imagined I was lying on a beach in the tropics waiting for a server to come by so I could order a cerveza :)  They assured me the mask making and CT scan both took longer than my treatments would, and I did both in one day.  woohoo!  I actually found the mask making part to be kind of fascinating and sort of just pretended I was getting a spa treatment facial...it's warm and they are massaging your face so it's not a huge stretch.

    Thanks again all, I can see I was lucky to have found you all.

    Good attitude!

    You are showing good signs of having a great atttitude and some positive coping strategies in hand.  Keep that up and be as involved in your treatments as  you can--don't be a victim!

    Mike

     

  • KB56
    KB56 Member Posts: 318 Member
    #12
    Radiation

    Donka, the mask looks great!    I got one just like it in my garage as the day of your last treatment they will give it to you to take home.   I remember getting fitted and it was a wierd feeling as they were making it.   They asked "are you claustrophobic?  No not me, why?".... When they snap the mask in place for the treatment it's a bit tight but honestly you do get used to it.

    I never had to take anythign to relax before mine but I would always go somewhere in my mind as I was getting the treatment.  I would think about great times with my family, great times with my wife, vacations, or whatever and really put myself somewhere else.   It is really a pretty quick process and they techs operating the equipment will get you unsnapped from the machine as quick as possible.   you will get to know the noises of the machine so you will know how much time you have left by the noises and how many passes the machine has done.  

    Just take a deep breath, take a sip of water, and try to relax before you get snapped down.  There is no pain at all so just calm yourself as much as you can, and take a little journey in your mind and before you know it you'll hear to door opening and the techs coming in to unsnap you from the table.   Remember, no lotions or anything on your face/neck before your treatment but afterwards you'll want lotions or something on it.  My radiation oncologist always had a bowl of free samples of Aquaphor lotions so I would grab some while i was there and it worked pretty good at first.   They'll perscribe some stuff as you get further along that will help as well.

     

    Good luck!  I know you dread getting started but in order to get this behind you, you have to take that first step/first treatment.   Before you knw it you'll have one treatment done, then one week, and then like Guzzle, you'll be in your 5th week with only 1 or 2 to do.

     

    Best of luck,

    Keith

  • Guzzle
    Guzzle Member Posts: 710
    #13
    KB56 said:

    Radiation

    Donka, the mask looks great!    I got one just like it in my garage as the day of your last treatment they will give it to you to take home.   I remember getting fitted and it was a wierd feeling as they were making it.   They asked "are you claustrophobic?  No not me, why?".... When they snap the mask in place for the treatment it's a bit tight but honestly you do get used to it.

    I never had to take anythign to relax before mine but I would always go somewhere in my mind as I was getting the treatment.  I would think about great times with my family, great times with my wife, vacations, or whatever and really put myself somewhere else.   It is really a pretty quick process and they techs operating the equipment will get you unsnapped from the machine as quick as possible.   you will get to know the noises of the machine so you will know how much time you have left by the noises and how many passes the machine has done.  

    Just take a deep breath, take a sip of water, and try to relax before you get snapped down.  There is no pain at all so just calm yourself as much as you can, and take a little journey in your mind and before you know it you'll hear to door opening and the techs coming in to unsnap you from the table.   Remember, no lotions or anything on your face/neck before your treatment but afterwards you'll want lotions or something on it.  My radiation oncologist always had a bowl of free samples of Aquaphor lotions so I would grab some while i was there and it worked pretty good at first.   They'll perscribe some stuff as you get further along that will help as well.

     

    Good luck!  I know you dread getting started but in order to get this behind you, you have to take that first step/first treatment.   Before you knw it you'll have one treatment done, then one week, and then like Guzzle, you'll be in your 5th week with only 1 or 2 to do.

     

    Best of luck,

    Keith

    Thanks Keith

    Donka, just finished week 5. One and a half weeks left. Still eating and had Shepards Pie for lunch. As the good advice here will direct you keep eating keep drinking and ask for pain meds if you need them especially to assist with eating. It will become a routine and be coming to an end before you know it. Let me know if I can help. G.

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #14
    hi, and welcome to our family

    hi, and welcome to our family even tho nobody would willingly choose this family.  you will find much help and advice here to help you along your journey and get you thru tx.  being stage one is great if you have to have cancer.  we will be here to cheer you on.  post whenever you have feelings you want to share, rather they are happy, sad, or inbetween.  we will listen no matter what your mood.  i didn't keep my mask as i never wanted to see it again but now i kinda wish i would have kept it.  think about what you want to do with yours before you are finished with it so you know.  crying is understandable.  being told you have cancer is very hard to hear.  i can't remember but i'm sure i must have cried.  but now you have moved on and you are ready to start tx.  the sooner you start, the sooner you're done.  keep you're good attitude, it will definitely help you thru.  let us know how you do.  we'll be on the sidelines.

    God bless you,

    dj

  • KB56
    KB56 Member Posts: 318 Member
    #15
    Guzzle said:

    Thanks Keith

    Donka, just finished week 5. One and a half weeks left. Still eating and had Shepards Pie for lunch. As the good advice here will direct you keep eating keep drinking and ask for pain meds if you need them especially to assist with eating. It will become a routine and be coming to an end before you know it. Let me know if I can help. G.

     

    Week 5 in the books!

    Guzzle, your abiltiy to continue to eat amazes me!   They must build them big and strong in the UK but if you grew up eating curry what else could you expect!

     

    Here's to 6 weeks being in the books before you know it... Then the last and final one and then the body can start repairing itself.

     

    Good luck my friend and I hope you continue to do as well as you have up to this point,

    Keith

  • Guzzle
    Guzzle Member Posts: 710
    #16
    debbiejeanne said:

    hi, and welcome to our family

    hi, and welcome to our family even tho nobody would willingly choose this family.  you will find much help and advice here to help you along your journey and get you thru tx.  being stage one is great if you have to have cancer.  we will be here to cheer you on.  post whenever you have feelings you want to share, rather they are happy, sad, or inbetween.  we will listen no matter what your mood.  i didn't keep my mask as i never wanted to see it again but now i kinda wish i would have kept it.  think about what you want to do with yours before you are finished with it so you know.  crying is understandable.  being told you have cancer is very hard to hear.  i can't remember but i'm sure i must have cried.  but now you have moved on and you are ready to start tx.  the sooner you start, the sooner you're done.  keep you're good attitude, it will definitely help you thru.  let us know how you do.  we'll be on the sidelines.

    God bless you,

    dj

    Breakfast

    Keith/Donka, Just had weetabix and two boiled eggs (not together). Moving towards slightly softer foods. Est everything you can now Donka. G.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #17
    Welcome Donka!

    I just want to reinterate that as you go through treatment, come here and ask anything/everything you're puzzled about, nervous about, or curious about.....your questions will be answered! 

    There are many people who have traveled this road and done with treatment......and a few, like you, who are just starting.....it's nice to hold hands with your "bus-mates", as you all go through treatment.....The best part about this forum, is that what works for one might not work for another.....but with all the answers lined up, you'll be able to try different things to help you get through treatment.  This forum is the bomb when it comes to information!! Laughing 

    I used Lorazapam, like Matt..... during rads.....closed my eyes when the mask went on.....counted 5 songs, and it was over.

    p

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