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Mask Anxiety and Panic

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Yesterdays mask fitting did not go well.

Rob said it was like he was choking and they thought it might be because his tonsils are still swollen from the biiopsies last Thursday.

Last night he had a bit of a panic attack just thinking about it.

Pretty sure the realization of every thing is hitting him at once. We will go for mask again on Friday

From all that have been here, can you give me any tips to help him through this? I am so sad to see him suffer with this anxiety and now is my time to step up

Sandy

katenorwood
Posts: 1818
Joined: May 2012

Sandy,

I don't think any of us escaped this feeling.  I took a small dose of an anti-anxiety med.  Also I used a form of visualiztion during the beginning.  I love the lakes, so I would go to a place in my mind to relax.  As the tx's go, they usually go very fast once started.  Also, most of the techs are wonderful, and know what we go through.  Tell Rob, he'll get through it.  The worst is the fitting.  Sending positives !   Katie 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

I know the initial anxiety well...

I had anxiety for nine weeks plus (initial chemo), just knowing that once I finished the long chemo period, my next part of treatment was seven weeks of concurrent and the 35 daily mask sessions bolted to the table.

My chhemo MD always told me, if you have a problem with something I have something for it..., and she always did.

Xanax was my salvation for the first week of the mask.

The first day I took a whole tablet, and sailed through treatment..., but it left me a little lythargic later in the day. So the next day, I halfed it..., same results, less fatigue. Each day I halfed it...

By the middle of the next week, I no longer needed the Xanax as I knew the routine, and as long as nothing changed, I was good to go.

A few other things to help relax...

Most facility have a CD player or music... For me I brought in a new James Taylor CD, they kept it there and had it cued up everyday for me. And the best thing with that, time doesn't drag... You have a reference point... 3 - 5 songs and your done for the day.

Also, being in Florida, I wore very comfy clothes, loose tank tops, baggy shorts, slip off Sperry shoes..

Those are a few suggestions that definitely got me through...

BTW, the Xanax didn't impair my driving, most days I drove myself to and from treatment... Of course the first few days I had someone with me just incase...

I have also heard of a few places cutting out areas of the mask to help, eyes, mouth, etc...mine didn't though. It's a tight fit, to the millimeter actually on precision... I had waffle marks across my forehaed each day after treatment, LOL.

JG

osmotar's picture
osmotar
Posts: 953
Joined: Jul 2011

Sandy,

Prior to my mask being made I worked myself into a panic, my rad doc prescribed an anti-anxiety med, I took one the day the mask was made,,it worked. The following week when they did the simulation test, on the table with the mask, it was rubbing my eyelids, I asked if they could cut eye holes and the rad tech did, from then on it was fine , no more meds, there were times and this sounds silly that when they placed the mask it didn't hit my left nostril right, so I asked if they would lift it off and replace it...the techs are there to help you, never get to the point you are uncomfortable, there probably isn't anything they haven't heard or been asked to do. If they allow you to have your own music take that to listen to, my routine was to take a sip of water spray my mouth with stoppers 4 ( for the dryness) and my neice gave me a her toy puppet woody from Toy Story to holdm took a deep breath and away we would go....the short time on the table 10 mins went by so quickly...Rob in time will find that place where he goes while on the table. We are all different , good luck, blessings.

 

Linda

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

right before rads because I was getting Amifostine to protect my saliva glands and to prevent the mucous.  Ativan is another anti-anxiety med, and kept me pretty relaxed during radiation.  I think Matt took Ativan also, before radiation.  I couldn't drive after rads tho having taken it. 

They will give him something for anxiety....there are many folks who can't do the mask without help.  Just tell them.

p

debbiejeanne's picture
debbiejeanne
Posts: 2360
Joined: Jan 2010

i too had panik attacks.  the techs ended up cutting the mouth out of the mask.  i also took an antianxiety med a couple times to get me thru.  after that all went well.  cutting the mouth out seemed to help alot.

God bless,

debbiejeanne

Laralyn's picture
Laralyn
Posts: 437
Joined: Apr 2012

I worried about anxiety from the mask when I first started because I'm mildly claustrophobic, mostly when I feel like the air is stale or I can't breathe. The mask had lots of holes in it so it turned out OK for me. Some folks reported that the techs would cut out the eyes and nose or even larger sections of the mask to make it easier--do you think that would help?

I second the recommendation for medication for anxiety. I had a prescription for lorazepam for nausea, but it also helps with anxiety so the first week, I took it before radiation. I took it again later in treatments when I was super nauseus and throwing up a lot because I kept envisioning starting to throw up while trapped under the mask. 

Tell your husband that he isn't trapped, though. The techs are right outside, watching the whole time. They can be back in that room in a few seconds if you gesture or call for them. You're not as isolated as you sometimes feel.

Another recommendation is for meditation. It's been shown to help cancer patients in a bunch of ways. There are relaxation tapes that can help you be in a calm state that they can probably play during treatments. Plus once you learn the breathing techniques, you can start meditation breathing and feel the anxiety start to diminish. It might really help him!

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

Sandy,

 

I hated mask time, but came to embrace it for what it was.

 

I took 1 Lorazapam tablet 30 minutes before mask time, 35 times, I never went bare.

 

I had a whole procedure, Lorazapam at home, followed by Magic Mouth Wash in parking lot, take a pee (wash hands), drink water, spit, gargle, then chose music (60’s & 70’s rock), rub my face, get rid of all itches and lay back for mask placement, then wiggle my head to get a good fit.  If the mask does not feel right have them take it off and try again.  My mask had eye holes so I could watch the line-up lasers and begin my counting.  I never liked mask time, but I had great techs and I came to appreciate what was happening

 

You need to take as much control of the situation as you can.  Once, toward the end when my throat was very swollen and the techs had gone around the corner, I had to throw my hands up and stop everything so I could get up and breathe, then after a drink, gargle and spit I successfully completed a rad treatment.

 

If you take 2 Lorazapams you will sleep through mask time.

 

Matt

 

Also, the techs can talk to you while being zapped, if that helps

hwt's picture
hwt
Posts: 1882
Joined: Jun 2012

Probably easier for a woman to imagine but when they made my mask I was told it would feel like a facial...it really did, it was warm and flexible when they molded it to my face and did not take long at all. During the actual sessions, I timed how much longer I had by how many songs had played. With time, I learned how much time I had left by the position of the machine. Like Matt, Lorazapam was my friend but I took mine at night. The radiation sessions themselves never hurt and went rather quickly, it's the side effects that get you.

lorig01
Posts: 67
Joined: Jul 2012

Hi.  I had anxiety too.  I took an Ativan everyday prior to treatment. Also,  I asked for music and knew how many songs would play until it was over.  Also, I closed my eyes during the entire time that I was in the machine.  Once I opened my eyes and saw my reflection in the mask and it was not pleasant. From then on my eyes were shut. Tell him it is OK to panic and be anxious. I think more folks are than are not... :)

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

Lorig01,

 

I could also see myself in the machine at one point, but I would look away, too freaky.

 

Can you imagine what dreams those techs must dream?

 

Matt

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Try having your dr RX something for anxiety, lorazepam, Ativan or even some good ole Valium. My dr gave me Valium and it worked like a charm. I ended up having to cut it in half so it wasn't too strong but it helped so much. I took it for treatment for a while too until I decided I didn't need the crutch any longer.
Good luck and know, this is very common.
Billie

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

Lorazipam and Ativan are the same thing....Lorazipam is the generic word for it.

p

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

I too can relate to the mask being bolted down to the table.  I took a CD of my favorite music, soul, and listened to the CD during treatment.  Abut 4-6 songs is the length and the time flew by while I was singing in my head!!!  I had a stick in my mouth to hold my tongue still during RADS.  I think many had this too, but for me it was the thought of being tied down and out of control, but when I realized the RADS were actually KILLING the cancer, I got on board and just listened to music.  ONly had to stop the treatment once to cough up spit and that was in the last few sessions.....

Tell your hubby he can do this.  It KILLS the cancer.  Keep reminding him of this

All the best,Steve

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

I didn't think so :(

After 14 treatments, those snaps attaching that mask like a second skin is still a bit of a shock regardless of knowing it's coming. Mine has a mouthpiece built in which makes it even more restrictive.  

Breathing is the most difficult aspect and that can be aggravated by sinus issues. One tip I use, is cheap and works is Afrin! A cupla squirts 30 minutes prior to treatment clears my sinuses and makes it easier to tolerate the routine. Good tunes cranking out helps too. Some old Beatles got me through #14.

"T"

 

 

Duggie88's picture
Duggie88
Posts: 535
Joined: Feb 2010

My best day of rads was with Boz Scaggs..............I think it was Oxycodone look what you've done to me.

Dam T your gettin closer now.

      Jeff

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Worked during my HS and college years... glad to see some things don't go out of style ;)~

"T" 

Duggie88's picture
Duggie88
Posts: 535
Joined: Feb 2010

I remember the mask days. I had more of a problem being strapped down than I did with the mask. I would ask about doing it John's way in finding that comfort zone.  I am sure they will work with you and Rob on trying to make it as easy as possible. Keep telling him the fitting gets him closer to treatment and every treatment gets him closer to completing the task. I use to lay and sometimes close my eyes and daydream about one of the grandkids which helped alot.

On a lighter note I did pull the mask out and wore it to the bank the other day. The teller couldn't understand a word I was saying because I forgot to remove the mouthpiece so i left empty handed. The newspaper made fun of me so now I have to think this out before my next attempt.

Remind me after Rob completes his radiation I will tell you a funny story about radiation. I am sure he will enjoy it. Why not tell it now??????  Because now he has something to look forward to upon completion.

      Jeff

Ron Silver
Posts: 73
Joined: Apr 2013

Same issues with the anxiety.  What helped was reaching up with both hands and touch the snaps telling myself I can take this off anytime I want.  Make them take it off and put it back on a few times in a row.  (Oh, a little Xanax helps also).  Key-the mask is on because you haven't taken it off.  Your in control.  Eyes closed before mask is on and closed until it is off.

ditto1
Posts: 630
Joined: Mar 2012

I think I may have posted more threads after I found out about the Mask than anyone, I tried to think of ways to get around it, NOPE, part of the plan.  So many folks again came to my rescue with suggestions and even the Super Thread (top post) had good information.  However until the day came to get the fitting I was just freaked at the thought.  When I went in to get fitted and they did the markers I was under the at first warm moist netting as it was formed to a mask, surprisingly not so bad.  First Rad treatment it felt totally different, I did get permission to have the eye openings which helped a little but I kept my eyes closed most of the time anyway.  As others may have said they listed to music or the sound of the machine,, I personally asked the techs to speak to me ever 4 or 5 minutes to know the world was still out there to get me out of the mask.  I learned from the noise of the machine as it went around my head about how much longer I would be under the mask.  After a while I had down to the minute, but I still just prayed ,, or sang to myself, waiting to hear the requested voices.  To my overall surprise it was not nearly as bad as I thought it would be.  I pray your experience will be that way to after you get used to it. 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

I thought something didn't look right on my post..., spelling, LOL.

Yep, forgot to mention that...

By the time you'll have finished several rads sessions. You'll know every buzz, hum, zap, click, twirl, position and sound that machine makes... You'll know the session is over before they techs even tell you...

I use to drive them nuts, because I had let go of the straps they had me pulling on to keep my shoulders down and in the same position... I was ready to blow that joint for the day...un-mask me so I could get my azz out of there...

JG

 

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

Makes grown men cry.  Seriously, ask Stevenl.  I'm a woman.  I was too scared to cry. They cut the eyes out for me, which helped.  I couldn't have the nose or mouth cut out, because they had targets on those areas...  I listened to Navajo flute music.  Unexpectedly, they already had the CDs.

One day, I was still on my feet when the techie opened the double doors of a cabinet, to pull my mask out.  The cabinet took up the entire wall, and it was FILLED with masks.  It was horrible.  They were stacked like sarcophagi in there.  I said 'oh my god, you're like the crypt keeper!'  The image is still in my mind.

Deb

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

Deb,

 

I have seen the cabinet full of masks too.  Each mask as creepy as the next.

 

Matt

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Sandy

Tell Rob that even Superman himself would be freaked out by the mask and the whole process !  Definitely get him a script for some anti-anxiety meds...just ask the med team for them.  Get them TODAY so he has them for Friday.

Ask about the extra mouth and eye holes...sometimes they can't as extra holes would make the mask too loose....but ask anyway.

Bring a CD with you -- or see what music they have.  I was lucky and they had a great Rolling Stones CD for me and I just told them to turn it up as loud as possible.....most days I didn't even hear the whirring of the machine.

There was a huge floor to ceiling rack with masks on them at my place -- just one look at those teeny tiny masks for the kids made me buck up and I never had a problem the rest of the treatment days....I just kept imagining being a child and having to go thru radiation.

Do check out the SuperThread...many other little tips and tricks in there that might help.

GOOD LUCK !

hwt's picture
hwt
Posts: 1882
Joined: Jun 2012

Maybe I didn't freak when they made my mask because one of my sisters told me she thought they were made out of plaster of paris. Needless to say, when I got in there, I was thrilled to find out it wasn't.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Ativan.  I think I've had to take it maybe four times in my life but it works.  Half tablet for me.  A full tablet puts me to sleep.  It does work wonders as far as anxiety though.

dales2loud's picture
dales2loud
Posts: 45
Joined: Sep 2011

Wish I had better advice, heck my memory blocks that "Mask Memory" until I read a thread on it. Yuck, is all that I can say, I just tried to get through it without showing my family how damaged I felt.

 

Cry, take drugs, listen to music, make post cancer vacation plans, count the different zaps of the machine so you know how many more are left.

Do whatever works.

Prayers

Dale/Missouri

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

It was Valium for me- 37 treatments - 37 valiums - 5 mg

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

I tried to block it out- they asked if I wanted the mask when I was done- I said to burn it. I had the eyes cut out. I had a great technician. I would watch the machine go around once to the right once to the left and then the right and the left again then the bell would ring and I knew it was over.  have him fatten up as much as possible while he can because in a few weeks he will not be eating very well.

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Went well. He did take an Ativan, but they molded a special neck block and it worked perfect. No problems with that or simulation

Down side, he had 2 teeth pulled on Tuesday and got dry socket. Tonsils are much better feeling and now the tooth goes down hill. 

He will go back to work next week as no appts. for next week. We start chemo (carboplatin and taxol) weekly for 7 weeks and 35 rads starting on April 15. One week of normal then off we go. Still got to get to Buddy's Pizza (Best pissa in Michigan)and Frankenmuth for dinner before he loses taste.

He won't have a port so that was good to hear. We are on a roll

Sandy

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

Enjoy the food while you can- fatten up- I worked all through treatment exept for the last two weeks- I had 3 cisplatin treatment and a similar rad regiment. Work took my mind off the cancer

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

As far as working, maybe 3 weeks until he is run down. He drives a gravel train and can't be on pain meds while driving and it is a strenuous job.

His boss has been great through this, he will put him in the office if he can make it to work or let him play on the bulldozer if he is up to it. 

Glad to hear some people can go to work, that is great. I just hate the idea of him staying home and this is all he has to do. He is hoping to keep some energy to ride the tractor to cut grass and keep a little busy so time goes faster.

hwt's picture
hwt
Posts: 1882
Joined: Jun 2012

Hope for the best with working but tx will dictate if Rob will need to take a break or two. Listen to your body, Rob. Better chance of less fatigue with good hydration and nutrition.

Good luck! Wondering why no port? Mine wasn't quite the same but called a Hohne, if I recall. Will Rob have something or going for "the stick" each time?

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