Surviving The Mask

ballonk said:

Excellent Thread - Very Relevant!
Oh my, I haven't thought about my mask in a long time. But it still conjures up memories that caught me so off-guard and by surprise. I did well with the fitting and trial run and had no problems. For me, the worse part of having cancer is all the times where you in a holding pattern (waiting for test results, waiting for a treatment decision, waiting for a surgery date, waiting to start radiation, etc, etc, etc). I'm a pretty tough gal and was just ready to get on with the treatments.

My first treatment reduced me to tears. I am not generally a "crier" so it so surprised me. It didn't hurt at all; but by the time it was over I was an emotional mess. The nurse took one look at me and took me back to see the radiation oncologist who recommended I take a half tablet of Xanax about 1/2 hour before treatment started. I don't like to take medication but he told me "now is not the time to be a hero" so I agreed. He also said he could cut some eyeholes in the mask as that helps some people. I was a bit angry at him for not letting me know this might happen but I think they don't like to tell you a lot about possible reactions so they don't "plant a seed" - so to speak. Because of some childhood abuse issues, I felt trapped in the mask and it just triggered some of those memories and emotions that day. I only took the Xanax for about a week and then I was OK during the remaining treatments.

I kept my mask with the intent of driving over it with my car one day. It was in my garage when the storm surge from Hurricane Katrina nearly demolished my home. So God only knows where it is now; floating around somewhere in the lake or Gulf of Mexico as the flood waters receded. Should make for an interesting artifact one day!

For all those who are have started or are getting ready to start your radiation treatments, you are in my prayers. Stay strong and go with God!

Kathy

hi i am into my last 2 treatments for vocal cord cancer

ive seen what people are saying on here and i wish i came here sooner. my throatis sore and my neck is red raw cant wait for wednesday to be over.  I hope this work being honest if i had to do it over with the 29 radiation treatments dont know if i would do it . cant swallowight always feels like there is something stuck in my throat .Iuess i just came in here to vent some ty for listening  HAROLD

dncinthrain said:

Non-verbal Stroke Patient
Hi, my dad had is first radiation treatment today. They did the "dry run" and then treatment immediately following. My dad is non-verbal due to a stroke in 2006, but he communicated to me that it was very scary. The nurse and tech would not let me go back there with him... Do you think that they would let me go back until the radiation began? I would like to make sure that he is not panicking under there, and that he is not in pain. Do you think he should have a half of ativan before he goes? The other issue is that he can not make himself cough, it is only a reflex if it is necessary. I will see if he would like the nose spray... Any other suggestions of questions that I should ask him, since he cannot tell me? Thanks for all of this info, I found it extremely helpful!!

Xanax...
Welcome Dancin....

If he has anxiety, Xanax definitely took the edge off for me. After the first week I was OK with it.

A few things that helped me;
Comfy clothes, shorts a t-shirts..what ever is comfy for him.
Music, I took a CD and left it there..they'd have it playing for me everyday. Plus it gives you a reference of time.... 3- 4 songs and you were done for the day.

Here is a link to the SuperThread...search it, there is a lot of info on surviving the mask, and tons of other.

SuperThread

Others will chime in their welcomes and suggestions...

Best, John

Fire34 said:

The mask
Marine my experience was similar to yours. I was fitted back in July of 09 and started rad treatments in Sep 09. When I got on that table and they placed the mask on and locked it down I told them that no way was that the mask I was fitted for. They were able to schim it up to 6 mm for a little looser fit but that was the max. I was refitted in the middle of my third week due to weight loss and it didnt seem any better but by that time i was used to it. My fit was so tight that i was unable to breathe thru my mouth luckily I hgad not problem thru my nose. Mucous buildup was my biggest problem and was worse during the last week of treatment. But being able to see the light made it a lot easier. Iwas an inpatient during my rad treatment as I had concurrent chemo/rad
Good luck to everyone and keep a positive attitude. as I noticed there are always people that have it worse than you

concurrent treatment

Hey there, I am brand new to the site and diagnosed in January of this year. The doctor at the cancer hospital said I will have to have multimodal therapy, 3 neck nodes and "probable" ECS. I was just wondering what you meant when you said you were "impatient"? Were you in the hospital for the entire length of treatment? I apologize I have so many questions and trying to research the best i can without having to ask people. I'm finally at the cancer center, getting close to starting treatment I think. My primary so far has been occult and having tonsils removed and pandescopy and think after that  depending on what they find or don't find I will be starting after that. Thank you for our time and hope you are well.

-Michael 

mkwalters88 said:

concurrent treatment

Hey there, I am brand new to the site and diagnosed in January of this year. The doctor at the cancer hospital said I will have to have multimodal therapy, 3 neck nodes and "probable" ECS. I was just wondering what you meant when you said you were "impatient"? Were you in the hospital for the entire length of treatment? I apologize I have so many questions and trying to research the best i can without having to ask people. I'm finally at the cancer center, getting close to starting treatment I think. My primary so far has been occult and having tonsils removed and pandescopy and think after that  depending on what they find or don't find I will be starting after that. Thank you for our time and hope you are well.

-Michael 

new forum post

Hi Michael,

I noticed you posted your first post to an old (2010) conversation.  I did the same thing when I joined and wondered why I wasn't hearing back from anyone.  You might want to click at the top of the discussion list and start a new forum.  You may get more responses that way.

 

Best of luck to you and your journey.  You will love this site.  People are wonderful, and you will get answers to whatever it is you want to know. 

The Mask fitting and CT simulation

I assume I don’t suffer from claustrophobia, as I didn’t find any part of the mask making/fitting unpleasant. There was 3 or 4 working on me most of the time and talking all the while, first the moulding under the neck and then the warm plastic straight over my face moulded and left to set. I went out to fill some forms in and sign consent forms, back in about 20 minutes later where I was fastened down to the table (It does feel quite tight once it has cooled and set completely) they marked the mask up and did the CT simulations plus the little dot tattoo on the chest. I just kept my eyes closed they didn’t make any cut-outs anywhere.

 

Yep

Distrubed and Five Finger Death Punch got me through 37 treatments. Luckily my Rad Techs where awesome and just plugged my I-Tunes into the kick **** speaker system in the room. We let it rip and 15 minutes was done before a knew it. About 5 songs worth. My mask was super tight and I did the walk of shame with waffle prints all over my face and forehead every day for seven weeks. It did start to loosen up by the end. Mine was also a closed mask with no real openings.

Good Luck, the first few are the worst.

Greend said:

Mask after treatment
I remember when they fitted me. The mask was very snug however towards the end of my treatments I had lost so much weight it started to be very loose. When I was done they asked if I wanted to keep it and I personally thought "why would I want a reminder" and told them to trash it. To this day I still get a knot in my stomach when I hear that x-ray sound. I am proud of my one tattoo :>)

Killed It

I took mine to the range and blew it to pieces with a shotgun.

Mask anxiety

Hi--I was totally unprepared for my reaction to the mask. I just flat couldn't stand it. The fitting was unpleasan, but the trial run really freaked me out. It was the pressure on my throat that I couldn't handle. I felt I was being choked. I'm going to try again tomorrow with Ativan. I see pictures online of masks that aren't fitted tightly around the throat. Is that an option?  My cancer was squamous cell of the naso-labial fold. Thanks so much for sharing your experience. 

Hotinhere said:

It worked

Thanks to all who have posted about your experience. The posts were very helpful. I did not think I could tolerate the mask for even one minute but I made it through the five-minute trial run. I took the Ativan, used nose spray beforehand, and asked for music. 

Mask

I had 35 rads for tonsil cancer. I am super super claustophobic and had to do Ativan b4 each session. I also had them play music on the loud side. I was in the mask about 15-20 minutes each session. One other thing I had them do was tell me every 5 minutes how long I had left. A couple times they forgot to tell me and I found it much harder for me. If you do it remind them each time. I also counted to myself to keep my mind busy. Another thing I did was have them aim a fan right at me to keep me cooler.  They had a big portable one in the room. I found I was grtting hot which made me uncomfotable. I never freaked out one time and made it thru all 35 sessions without interuption, If I can do it, anyone can. You can do this. Good luck and God Bless.