I need some Radiation Mask advice--Please Help
Comments
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the mask
Not sure anyone could like the mask, so you're not alone. Mine was not overly-tight, but did make it hard to swallow, so they cut a little clearance away at the base and front. The idea is to make sure you don't move, so it has to fit real snug over your skull. Keep in mind that it's not like you're gonna be clamped to the table for an hour or two. My sessions lasted 20-25 minutes, on average, with the longest probably a little over 30 (on an Xray day). If you can breathe okay, and am able to swallow in between zappings, then it shouldn't be a big deal.
Does it literally bite into your cheeks? Are you a large man? If you are overly-large, perhaps they just don't have a mask large enough.
As for the Ativan- I took a 1/2-tag of Xanax about a half-hour before my scheduled start time, and it did help in a major way. Others also used a similar-med the cope with the rads.
Give it your best shot.
kcass1 -
Had the same feeling at first
The mask left a waffled effect on my face and was uncomfortable the 1st week. Ativan 1/2 tablet was used for 3 days and the tech cut the eyes out so it was not so clustrophobic. As I lost weight it fit just fine and the 15-20 minute sessions flew by.
Hnag in there, all will go well.
Ed0 -
mask impressions
The mask used to leave a waffle impression on my forehead and cheeks after each treatment. My treatments only lasted 15-20 minutes, and you will get used to it. Talk to your techs, make sure that if you raise a hand, or give the sign, that they will be there. Once you trust them, it'll be easier. After I lost weight, my mask loosened up. I never told anyone, I thought they'd forgotten to do one of the snaps at first. As for recovery time, it will be a long road, and my only advice is to deal with one session at a time, and recover week at a time. Try not to be discouraged by time taken to heal. Unfortunately, it takes as long as it takes, and taking care of yourself and being patient, and positive, provide the fastest track back to health.
best with everything, Hal0 -
You can do itEd_PortOrange said:Had the same feeling at first
The mask left a waffled effect on my face and was uncomfortable the 1st week. Ativan 1/2 tablet was used for 3 days and the tech cut the eyes out so it was not so clustrophobic. As I lost weight it fit just fine and the 15-20 minute sessions flew by.
Hnag in there, all will go well.
Ed
They make those things tight, that's for sure. I tried listening to the technicians' music to distract me at first. I will never like Neil Diamond after that experience. In the end, you just learn to mentally "go somewhere else" while that thing is on. At least I was lucky enough to learn that mental trick. And I had serious waffle head after each day!
You are probably right in thinking that the Dr's comment about 6 months before returning to normal did not help things for you mentally. Everyone has a tipping point, and thinking about things that far out may just be too much right now. My advice would be to forget about what is going to happen in six months and break things down into smaller bits. Maybe weeks, or even days. You may soon find that morning to the evening is the longest time frame that is worth thinking about. And that's OK, because it will get better. You can do it.
This is a great place to come for support, cuz we know what it's like... it sucks. But, treatment won't last forever.0 -
Like the others
Just like the others mentioned, my mask gave me checkered marks on my face. The Children's Hospital is next door and when the young kids would be in their rolling beds ready to get their radiation, I would say that I was " Snakeman ", they would just give a little smile.
Broke my heart to see them have to go thru this. You can do it as mentioned above, ask the Tech's to cut a little piece here or there to relieve the pressure on your nose or mouth a bit so you don't feel sooo closed in. Tight spots normally don't bother me, but that Mask, the first couple of times played heck with me until I put my mind in another place. As mentioned, as we loose weight, it loosens up a little bit.
I would treat myself to the biggest chocolate milk shake after each treatment for as long as I could.
My Best to You and Everyone Here0 -
Radiation Mask
I do not want to upset your karma any more in regards to returning to normalcy as you once knew it in six months. I am now out of treatment for stage four for almost three and a half years now and am not close to be normal again and according to my doctors never will be. There is what we head and neck survivors call the new normal after this devasting treatment is over with. This is a long hard road and I don't want to mislead you. So far as the mask goes I freaked out when they were making the thing. It took two times for me to go through it just to get the mask made. Once treatment started (35 treatments) I was terrified every time they bolted me down on the table. Through the grace of God and praying all the time I was receiving radiation I got through out and did not have to take any drugs. I pray for everyone I read about on this website getting ready to go through this ordeal. My life as I previously stated is not the same or even near the same but I do get to wake up everyday and see my family and friends. God Bless you as you face this.0 -
MarineMarineE5 said:Like the others
Just like the others mentioned, my mask gave me checkered marks on my face. The Children's Hospital is next door and when the young kids would be in their rolling beds ready to get their radiation, I would say that I was " Snakeman ", they would just give a little smile.
Broke my heart to see them have to go thru this. You can do it as mentioned above, ask the Tech's to cut a little piece here or there to relieve the pressure on your nose or mouth a bit so you don't feel sooo closed in. Tight spots normally don't bother me, but that Mask, the first couple of times played heck with me until I put my mind in another place. As mentioned, as we loose weight, it loosens up a little bit.
I would treat myself to the biggest chocolate milk shake after each treatment for as long as I could.
My Best to You and Everyone Here
Where you ever stationed at LeJuene or Cherry Point NAS. I live in New Bern. Finz0 -
Happy Placesportsman said:Radiation Mask
I do not want to upset your karma any more in regards to returning to normalcy as you once knew it in six months. I am now out of treatment for stage four for almost three and a half years now and am not close to be normal again and according to my doctors never will be. There is what we head and neck survivors call the new normal after this devasting treatment is over with. This is a long hard road and I don't want to mislead you. So far as the mask goes I freaked out when they were making the thing. It took two times for me to go through it just to get the mask made. Once treatment started (35 treatments) I was terrified every time they bolted me down on the table. Through the grace of God and praying all the time I was receiving radiation I got through out and did not have to take any drugs. I pray for everyone I read about on this website getting ready to go through this ordeal. My life as I previously stated is not the same or even near the same but I do get to wake up everyday and see my family and friends. God Bless you as you face this.
Finz,
I know it's not easy to deal with mask. I'm not clastrophibic but it still bothered me at first. A good friend told me to have a "Happy Place" to go, as others here have mentioned here. It really works. Every day before you go in, think of that happy place you'd like to be. By the time you lay down you should be in that zone of thinking of nothing but the place you want to be. Mine was always fishing trips, but whatever you enjoy. Some like to time the songs or count the revolutions of the machine. That just made the time go slower for me. You just need to find that place where you are relaxed. Another thing, 10 minutes before you go in, start visualizing your happy place and take long deep breaths. Hopefully some method similar to these will work. Practice before you go in, but be relaxed by the time you lay down.
Good luck.
Greg0 -
the mask
The mask: very tough but do-able with help. I had the same reaction as you, plus being confined triggered some bad, bad stuff from childhood. I used xanax like others plus a good shot of afrin to help with breathing. They let my wife in the control room which they said was highly unusual so she could talk to me. I took a pain pill before because the table was very hard and I'd busted my rotator cuff. I chose my favorite music. I did some relaxation techniques and tried to take myself to another place. Took the pills about one hour before the treatment. Always scheduled it first thing in the morning so I wouldn't fret all day. I truly know how you feel. At about the 21st treatment, I was ready to bail but just re-committed to my recovery and reminded myself of the reasons I wanted to get well. I hated every minute but am glad I did it, all 39 of them. I don't say this loosely: if I can do, I know you can do it. Use every tool you can find and tell the doc and staff what's up with you. They know how to get you through this and you will.
Vince0 -
Mask
I think we all have problems at first with the mask, sometime you can get them to modify it a little by cutting out the eyes and mouth, it makes it a little easier to handle. Also you can try and focusing on something in the room, that always worked for me.0 -
DavidHondo said:Mask
I think we all have problems at first with the mask, sometime you can get them to modify it a little by cutting out the eyes and mouth, it makes it a little easier to handle. Also you can try and focusing on something in the room, that always worked for me.
I think we can credit David with the latest terminology (or punk rock song) - Waffle Head.0 -
Happy Place Greg53Greg53 said:Happy Place
Finz,
I know it's not easy to deal with mask. I'm not clastrophibic but it still bothered me at first. A good friend told me to have a "Happy Place" to go, as others here have mentioned here. It really works. Every day before you go in, think of that happy place you'd like to be. By the time you lay down you should be in that zone of thinking of nothing but the place you want to be. Mine was always fishing trips, but whatever you enjoy. Some like to time the songs or count the revolutions of the machine. That just made the time go slower for me. You just need to find that place where you are relaxed. Another thing, 10 minutes before you go in, start visualizing your happy place and take long deep breaths. Hopefully some method similar to these will work. Practice before you go in, but be relaxed by the time you lay down.
Good luck.
Greg
Thank you Greg, I had sent you an Email, so thank you for your advice, I will try that tomorrow. This delayed Chemo and Rads by a day. I am having Chemo on every Wednesday for 7 weeks and 35 total Rad treatments. The Doc said that Chemo-Rad day would be long and I would end of hating it, but he promised me that it would end. Thanks Greg, have a great day. LLoyd0 -
Cut out!Greg53 said:David
I think we can credit David with the latest terminology (or punk rock song) - Waffle Head.
Not sure what kind of machine you are using! I was using a TOMO IMRT machine they were able to cut out the eyes and nose for me; it helped alot. Yes, this cancer is no joke they tole me 6-7 months from work too!
Charles0 -
Mother lode of advice !
Hi Finz,
Seems you have heap already but I dug up an old post on this and have added a couple of things. Hope it helps.
============
For all about to start radiation with the 'Mask', I thought to start a separate thread as it appears many threads these days are getting too 'crossed' up and lose track of the original purpose or the poster.
Make sure the mouth piece you have has a large enough hole (and clearly cut) to allow easier breathing. The Techies on hand can fix this if the hole is not adequate..
You can ask to have some parts of the mask trimmed if there is too much pressure on any point or area but it should be firm so you don't move and let the rads hit a non-target area. It shouldn't hurt though. Too much pressure around the nose and throat will cause more distress as your body tells you instinctively that your breathing is threatened.
I used a nasal spray before each session to allow easier breathing. You can breath through both nose and mouth at the same time. Learn how to switch between the two and to use both at the same time. This will be important if you start getting heavier mucus build up later.
Learning how to breath is important and also helps you relax as you can focus on something other than the big humming machine. Breath deep and steady and visualize the cancer cells being chomped up like a Pakman or .... just think of something nice.
Hack and spit as much as you can 'before' you get on the table as mucus may increase as the weeks go by. As said earlier , if you feel your throat blocking a little with mucus during a session, you can usually breath through your nose. That's why you are best to practice consciously changing between the two to avoid any panic.
Learn a pattern or relaxation and you will find it will become easier and the sessions will be over quickly.
Music really does help and I used a compilation of classic and classical non vocal music but whatever gets you through is good.
Use relaxation meds if they help and you find it necessary but as with anything, the less medication the better as your body will be dealing with enough.
In the later weeks I rinsed my mouth with a Saline mouthwash and also used a bit of Mouth Gel (Biotene) along with the Nasal Spray as part of the pre-session routine as you will start to get a dry mouth later in treatment.
Other related tips are to get an electric razor (for guys) and get and use good quality 'baby' shampoo and face wash products / solutions (Not Johnson & Johnson). Your skin will become more sensitive. And I do mean stuff you use for infants
I hope the few tips above help.
Regds Scambuster0 -
The Mask
I freaked out when they snapped it on me. It took all I had to lay there with the mask on. It really shocked me when I had a panick attack. But like you, the doctor gave me Ativan. Take it 45 minutes before you go in for treatment. It takes that long for most meds by mouth to get in your system. Close your eyes and concentrate on something. Me, I kept saying prayers and before I knew it, I was done.
Doctors told me the same thing. Six months before you're feeling "normal". Everyone is different when it comes to the side effects and how long they last. I'm 5 months out and most of the side effects are gone. Dry mouth I still have. But it's slowly getting better. I'm on Salagen for saliva. Biotene has helped alot with this. I have the mouthspray, the gel and still use the mouthwash. I would say that after 5 months, I'm about 70% of what I was before treatments.
But the side effects will pass in time.0 -
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.
John0 -
Same hereSkiffin16 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
That was my first thought also.there is no way this is the one they fitted me for. They were able to shim mine up about 5 mm to loosen it up a little.
They also had a CD player and plenty of music that was just my style. Helped immensely. I was unable to keep my eyse open as the mask was so tight for me when it hit my lashes your eyse had to close.
I got refitted the middle of my third week and when they put the old maks on, I couldn't believe how loose it was, there must have been something between the tables.
I had them turn the music up quite a bit as I tried to drown out the sound of the gun moving around. Still couldn't drown out the thud the door made when they closed it though. LOL
As everyone else had said just concentrate on something other than the mask and it will be alright. I slept thru most of mine Best Wishes & Prayers
Dave0
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