Surviving The Mask
Micktissue is about to start so these and following posts may assist.
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 go in 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 your nose. That 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 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 know you will get this Mick and others about to go in and I hope the few tips above help.
Regds Scambuster
Comments
-
Crossed up
Some times some of us need a lighter side of conversation not just facts. Yes facts are what this place is for but a little humor and life stories are needed too. We all cope in different ways. That being said, I too go for my dry run tomorrow and I find your info very helpful and will heed your direction. Thank you for you help scambuster, your posts are always helpful and uplifting. So it's off I go to get my peg and port today so wish me good luck everyone!!
Thanks Again,
Steve0 -
Thanks for the infostevenl said:Crossed up
Some times some of us need a lighter side of conversation not just facts. Yes facts are what this place is for but a little humor and life stories are needed too. We all cope in different ways. That being said, I too go for my dry run tomorrow and I find your info very helpful and will heed your direction. Thank you for you help scambuster, your posts are always helpful and uplifting. So it's off I go to get my peg and port today so wish me good luck everyone!!
Thanks Again,
Steve
I have been reading as much as I can so I can be prepared.
Steve, good luck to you! I hope I can be as strong through all of this as you and everyone else is.
Mary0 -
Good Post
Scambuster,
Very good post, allot of good information shared there. I am a person that usaully has no problem with tight areas, but that Mask messed with my mind the first 2 times. Once on the fitting of it. Just for a few minutes and I calmed down, put my mind in a different place altogether.
The other time was the first Radiation treatment. As nice as the Tech's are, I just couldn't get my breathing to calm down. Felt terrible, but toward the end of the treatment got my mind together. The rest of the treatments, I would imagine back to the times I was a kid running outside with my brother flying our kites. Anything to get my mind elsewhere.
When I would get up off the table after the Mask was removed. I always felt as if I was from a Batman movie as a character named Snakeman as the mask was that tight and the criss-cross pattern was on my face walking out to my car : )
My Best to Everyone Here0 -
the mask
Thanks for that Scambuster.
I don't have a mouthpiece. In stead I put 4 cotton spacers where my wisdom teeth are. I sort of look like Vito Corleone. This is done to separate my fillings form my cheeks. I don't know if this will be continued when actual treatment starts tonight (7:20 pm PST, for those interested).
I'm bringing The Band with me tonight. I am in a band and we cover a tune called The Weight, on which I'm singing lead. The first tune is a great one called Don't Do It which is a Marvin Gaye tune (I think) that The Band covered and it's awesome. Music really helps me relax, especially music I know well.
That's a great tip about the pre-treatment routine for getting all the stuff out of mouth and throat. I find that if I can just get into a groove of breathing (Steve, FIND YOUR CENTER!) and focusing on blasting the micro-mets, I think I'll do pretty well.
One thing that kinda bugs me is when the techs tell you not to move but they then ask you a question. It put me in a bind yesterday - "Don't move Mr Morris. Are you doing ok?" Hmmmm. How to answer that without moving. I'll chat with them tonight about what I need and see what they say.
Hopefully I'll be able to post after it's all done today (I start chemo in 2 hours) and let you know how it went.
Thanks to everyone for the thoughts and support. It is deeply meaningful to me.
Warmly,
Mick0 -
Answering questionsmicktissue said:the mask
Thanks for that Scambuster.
I don't have a mouthpiece. In stead I put 4 cotton spacers where my wisdom teeth are. I sort of look like Vito Corleone. This is done to separate my fillings form my cheeks. I don't know if this will be continued when actual treatment starts tonight (7:20 pm PST, for those interested).
I'm bringing The Band with me tonight. I am in a band and we cover a tune called The Weight, on which I'm singing lead. The first tune is a great one called Don't Do It which is a Marvin Gaye tune (I think) that The Band covered and it's awesome. Music really helps me relax, especially music I know well.
That's a great tip about the pre-treatment routine for getting all the stuff out of mouth and throat. I find that if I can just get into a groove of breathing (Steve, FIND YOUR CENTER!) and focusing on blasting the micro-mets, I think I'll do pretty well.
One thing that kinda bugs me is when the techs tell you not to move but they then ask you a question. It put me in a bind yesterday - "Don't move Mr Morris. Are you doing ok?" Hmmmm. How to answer that without moving. I'll chat with them tonight about what I need and see what they say.
Hopefully I'll be able to post after it's all done today (I start chemo in 2 hours) and let you know how it went.
Thanks to everyone for the thoughts and support. It is deeply meaningful to me.
Warmly,
Mick
Hi Mick,
When I was on the table and they would ask me a question, I would give them the International hand sign. No, not that one : ), I would give them a thumb's up or a thumb's down for yes or no. Worked for me.
My Best to You and Everyone Here0 -
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 :>)0 -
mask tip
I started with side effects pretty quickly. Radiation burns on my neck, and my lips. It was not long before my lips started bleeding and cracking. One day they pulled off the mask, which had stuck to my lips, and yowza, i bled for quite a while. After a couple of days of this pain and nonsense, one of the girls got a good idea, and they put saran wrap on my lips, then put my mask on. It worked well. I did not stick to it.0 -
Me, Too, Mickmicktissue said:the mask
Thanks for that Scambuster.
I don't have a mouthpiece. In stead I put 4 cotton spacers where my wisdom teeth are. I sort of look like Vito Corleone. This is done to separate my fillings form my cheeks. I don't know if this will be continued when actual treatment starts tonight (7:20 pm PST, for those interested).
I'm bringing The Band with me tonight. I am in a band and we cover a tune called The Weight, on which I'm singing lead. The first tune is a great one called Don't Do It which is a Marvin Gaye tune (I think) that The Band covered and it's awesome. Music really helps me relax, especially music I know well.
That's a great tip about the pre-treatment routine for getting all the stuff out of mouth and throat. I find that if I can just get into a groove of breathing (Steve, FIND YOUR CENTER!) and focusing on blasting the micro-mets, I think I'll do pretty well.
One thing that kinda bugs me is when the techs tell you not to move but they then ask you a question. It put me in a bind yesterday - "Don't move Mr Morris. Are you doing ok?" Hmmmm. How to answer that without moving. I'll chat with them tonight about what I need and see what they say.
Hopefully I'll be able to post after it's all done today (I start chemo in 2 hours) and let you know how it went.
Thanks to everyone for the thoughts and support. It is deeply meaningful to me.
Warmly,
Mick
Hope Chemo and Rads went well for you today.
My techs ask me questions, too. I do the thumbs up and flat hand back and forth "no" signal, but almost every time, I automatically try to move my head. Oops.
I, too have taken the Band in for rads. Also, Bob Marley "Three Little Birds" (Don't worry about a thing, cause every little thing's gonna be all right). Wanted Zydeco music for Mardi Gras, but didn't get a chance to get any.
Keep up the good fight,
- Pam0 -
during treatmentsweetblood22 said:mask tip
I started with side effects pretty quickly. Radiation burns on my neck, and my lips. It was not long before my lips started bleeding and cracking. One day they pulled off the mask, which had stuck to my lips, and yowza, i bled for quite a while. After a couple of days of this pain and nonsense, one of the girls got a good idea, and they put saran wrap on my lips, then put my mask on. It worked well. I did not stick to it.
Scambuster- excellent start of a thread. The mask is a most relevant challenge.
Two things of note helped me with the 25-minute rads in 20 places/session: 1) I did a 1/2-tab of Xanax about a 1/2-hour before the start. Did try the morph twice- did not sit right with me. 2) I found that keeping my teeth in an "overbite" position did help enormously, both with the breathing and saliva business.
Also- the customizing of the mask did happen for me- to allow swallowing between zappings during the sessions.
Again, Scambuster- excellent.
kcass0 -
MaskKent Cass said:during treatment
Scambuster- excellent start of a thread. The mask is a most relevant challenge.
Two things of note helped me with the 25-minute rads in 20 places/session: 1) I did a 1/2-tab of Xanax about a 1/2-hour before the start. Did try the morph twice- did not sit right with me. 2) I found that keeping my teeth in an "overbite" position did help enormously, both with the breathing and saliva business.
Also- the customizing of the mask did happen for me- to allow swallowing between zappings during the sessions.
Again, Scambuster- excellent.
kcass
As suggested above, during rads I had to "go someplace else" in my head. Being relaxed was so important. By the end of my 33 treatments I was even able to fall asleep a couple times. Wish I'd known or thought to put cotton in my cheeks though, I have silver fillings both top and bottom and the radiologist said that the rads were deflecting off of them and blasting the sides of my tongue. Very sore and raw by the end. Also, thick ropey mucus became a problem with swallowing. I'd always hit the drinking fountain in the hallway for a rinse and spit just before I went in. I thought for sure I'd be choking and trapped under the mask before it was all over. By the end mine was pretty loose as well from the weight loss. Good luck to all who are in treatment, you can do this.
Mike0 -
Lining up on the tableHondo said:Mask
It’s not easy but you will survive, if your mask starts to get loose make sure to let someone know about it, good tread Scambuster.
Did you ever get the Stoppers 4 you ordered?
Many more good points made above for those just starting.
Another thing I recall is the time it sometimes took for the techies to get you lined up correctly. I had the laser beams of 'Dots and Crosse's shot down from above which they used to align you and the mask exactly right. I recall there were some ridges or grooves in the table near my hands and I knew where my fingers reached when I was in the right position so that helped speed up the alignment process. It can be a pain if they have to unclip you and start again as it all makes it all take longer.
A good couple of points raised about when you lose weight, you may need a refit. I had a new mask made in week 5 (I had 70 sessions IMRT over 7 weeks).
Also as Hondo says, let the techies know if you have movement or changes. I recall my jaw would drop down a fraction as I sort of drifted off into fantasy land so let them know if you have movement. Consistency is important.
One last point is you should also have a signal to let the techies know of you are having difficulty or are in distress during the zapping and need assistance. Mine was to raise my arm. I never had to but have an agreement with the techies on your 'panic button signal' so they know if you need to get up.
Cheers Scambuster
PS Hi Hondo, the Stopper4 spray didn't arrive unfortunately but they did a refund on the Visa.0 -
The maskMarineE5 said:Good Post
Scambuster,
Very good post, allot of good information shared there. I am a person that usaully has no problem with tight areas, but that Mask messed with my mind the first 2 times. Once on the fitting of it. Just for a few minutes and I calmed down, put my mind in a different place altogether.
The other time was the first Radiation treatment. As nice as the Tech's are, I just couldn't get my breathing to calm down. Felt terrible, but toward the end of the treatment got my mind together. The rest of the treatments, I would imagine back to the times I was a kid running outside with my brother flying our kites. Anything to get my mind elsewhere.
When I would get up off the table after the Mask was removed. I always felt as if I was from a Batman movie as a character named Snakeman as the mask was that tight and the criss-cross pattern was on my face walking out to my car : )
My Best to Everyone Here
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 you0 -
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!
Kathy0 -
funnyballonk 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
Kathy, your comment was funny about running of it, I actually laughed out! I always appreciate it when I read a post and it makes me laugh. This site is so good for so many reason. I'm glad you are now ok.
God Bless,
Debbie0 -
Maskdebbiejeanne said:funny
Kathy, your comment was funny about running of it, I actually laughed out! I always appreciate it when I read a post and it makes me laugh. This site is so good for so many reason. I'm glad you are now ok.
God Bless,
Debbie
Driving over it, Kathy? Wish I had thought of that! Sledgehammer, though, did cross my mind. Did keep mine, as I am only a Vet of one round with the rads. Problem is, I kept it on the back seat of my car. Not sure why, but I did. Last summer, one very hot day, part of it got melted out of shape. So, will not be able to use...No, I am kinda hoping another bout ain't in the cards. Still, Kathy- seeing somebody driving over a mask would be worth the price of admission.
kcass0 -
MaskKent Cass said:Mask
Driving over it, Kathy? Wish I had thought of that! Sledgehammer, though, did cross my mind. Did keep mine, as I am only a Vet of one round with the rads. Problem is, I kept it on the back seat of my car. Not sure why, but I did. Last summer, one very hot day, part of it got melted out of shape. So, will not be able to use...No, I am kinda hoping another bout ain't in the cards. Still, Kathy- seeing somebody driving over a mask would be worth the price of admission.
kcass
I must post a dissenting opinion about the mask fitting. Had mine done at U of Chicago today. Was a bit nervous after reading about it on this forum. Even took a half of Atavan before! Must say it was very easy! Only about ten minutes with the warm mesh over my face. Shoulder and under head ones are done separately. Once set up, they removed it and cut the eyes out along with the nose and most of the mouth. The chin was tight but not uncomfortable. All in all a ho hum. I know most of you had some trouble with it, and I sympathise, but wanted to let future maskies know that not everyone has the same experiance. I may feel differently after 45 times on the table! (no doubt the Atavan didn't hurt also)
Best to all, John0 -
Hi JohnJohnyjackpot said:Mask
I must post a dissenting opinion about the mask fitting. Had mine done at U of Chicago today. Was a bit nervous after reading about it on this forum. Even took a half of Atavan before! Must say it was very easy! Only about ten minutes with the warm mesh over my face. Shoulder and under head ones are done separately. Once set up, they removed it and cut the eyes out along with the nose and most of the mouth. The chin was tight but not uncomfortable. All in all a ho hum. I know most of you had some trouble with it, and I sympathise, but wanted to let future maskies know that not everyone has the same experiance. I may feel differently after 45 times on the table! (no doubt the Atavan didn't hurt also)
Best to all, John
Glad to hear it all went well for you, like you said its not bad, sometines we just fear the un-knowed.
Wishing you well as you get prepaired to start
Hondo0 -
Thank you Hondo! May all my fears be this groundless!Hondo said:Hi John
Glad to hear it all went well for you, like you said its not bad, sometines we just fear the un-knowed.
Wishing you well as you get prepaired to start
Hondo
Thanks0 -
MaskJohnyjackpot said:Thank you Hondo! May all my fears be this groundless!
Thanks
I had my 12th treatment with the mask today, they cut the eyes out for me after my trial run as at first the mask was tight/rubbing on my closed eyelids. Once the eyes were cut out everything is fine, I don't use the adtivan at all, even though the rad doc gave me script for it. The fit of the mask is great, tight as it should be and leaves waffle marks on my forehead and chin, they fade rather fast. I'm only on the table for 10 mins and for me it goes rather quickly. Pre mask ritual , I make sure my lips are moisturized really well with aquaphor ... Walgreens sells it, and then I spay my mouth with either Biotene or Stoppers4 , I think I prefer the stoppers after trying both.
Linda0
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