Surviving The Mask

Hondo

Johnyjackpot said:

Thank you Hondo! May all my fears be this groundless!
Thanks

John

When I first learned about my Cancer is was about this time 9 years ago. So we now look at Thanksgiving as my anniversary date and thanks God for all the extra Thanksgivings I get to see, just so much to be thankful for.

Look like some great Turkey country in your picture.

Take care
Hondo

dennis318

osmotar said:

Mask
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.

Linda

Mask Expereince
It went well, very tight as remembered, I had 5 weeks, at first it was a breeze, well hello, it got rough on me around the fourth week, i was doing great, i turned very weak, and sickly, not all had the same as I, but my neck started to turn firey red and started to burst open, it was pretty rough, I remember the last week, they had to halt the machine. I went spastic and had my hand up in the air yelling to stop, I panicked, the smell of hot metal comes to mind, and to this day, the smell fills my nostirls, and makes me remember the episode, also the mask, i brought it home, after a few weeks, I had it removed and told my friend to destroy it, i wanted to move on, it was a nightmare. Use lots of the rad lotion before and after, and i laid moist washclothes on my neck at night. Take Care and The best. Dennis

Skiffin16

No Holes.... & ScamBuster Update
I'm one of the ones they wouldn't alter the mask....and it sucked pretty much the entire time.

I did take Xanax for the first week, but then got used to the routine and didn't need it any longer...

John, not sure where you are getting 45 minutes, usually it's more in the 15 minute range.

Dawn, LOL, I was trying to figure out about half breasts...LOL, sorry abi'normal mind was bust thunkin....

Also, since Scam started this thread, it's kind of ironic, I just got an email from him yesterday morning, as I know a few others here did...saw the email list of names.

Anyways, he is doing find and posted some photos of the "Black Salve" in action for a few spots he had on his shoulder...photo's were pretty impressive, though not something I was expecting at 7:00AM on an empty stomach, LOL...

He wishes all well and Happy Holidays.

JG

osmotar

Skiffin16 said:

No Holes.... & ScamBuster Update
I'm one of the ones they wouldn't alter the mask....and it sucked pretty much the entire time.

I did take Xanax for the first week, but then got used to the routine and didn't need it any longer...

John, not sure where you are getting 45 minutes, usually it's more in the 15 minute range.

Dawn, LOL, I was trying to figure out about half breasts...LOL, sorry abi'normal mind was bust thunkin....

Also, since Scam started this thread, it's kind of ironic, I just got an email from him yesterday morning, as I know a few others here did...saw the email list of names.

Anyways, he is doing find and posted some photos of the "Black Salve" in action for a few spots he had on his shoulder...photo's were pretty impressive, though not something I was expecting at 7:00AM on an empty stomach, LOL...

He wishes all well and Happy Holidays.

JG

Black Salve
My mom was born in the USA, but raised in the Canal Zone,my grandfather worked for the government in Balboa. When we were kids and living back in the states my grandparents would send my mom a black salve in a small round goldish tin..the dang stuff smelled like tar and had about the same consistancy,mom would put it on cuts, any tye of sore, etc, the stuff worked. I haven't seen it in years and years, wonder if it's the samr type of salve your friend sent pics of.

jtl

Mask
They would only cut out the nose for me and even then it took some convincing. One of the reactions from the chemo I was taking was a major outbreak of acne. It alternated between burning and iching. Can you imagine having that mask on an not being able to scratch an itch? How many times have you picked up something requiring the use of both hands and only to have your nose itch? You get the picture. Also, in the begining I found Xanax to be my friend.

I did not get any radiation burns on my neck until the last week of treatment. My neck looked like I had been lynched and got away. I am now 2 weeks post treatment and they are about healed.

Regards,
another John

sweetblood22

Johnyjackpot 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

Johnny Jackpot. I'm sure the Ativan helped.
The mask fitting wasn't bad. The first day of rads and being bolted down to the table SUCKED. I did not have any anti anxiety drugs. My eye holes were not cut out until the second day. They had to cut out eye holes, because not only was the mask so tight it left waffle marks on my face, but it bruised and broke capillaries under my eye brows. Lots of people do not get the eyes and nose cut out, they won't do it for them. Also, you said shoulder and under head was done separately. I don't know what that means. Mine is one big piece that covered my head, shoulders and cut across my breast.

sweetblood22

Skiffin16 said:

No Holes.... & ScamBuster Update
I'm one of the ones they wouldn't alter the mask....and it sucked pretty much the entire time.

I did take Xanax for the first week, but then got used to the routine and didn't need it any longer...

John, not sure where you are getting 45 minutes, usually it's more in the 15 minute range.

Dawn, LOL, I was trying to figure out about half breasts...LOL, sorry abi'normal mind was bust thunkin....

Also, since Scam started this thread, it's kind of ironic, I just got an email from him yesterday morning, as I know a few others here did...saw the email list of names.

Anyways, he is doing find and posted some photos of the "Black Salve" in action for a few spots he had on his shoulder...photo's were pretty impressive, though not something I was expecting at 7:00AM on an empty stomach, LOL...

He wishes all well and Happy Holidays.

JG

JG
Breasts. I thought I should use that word and not one of the others I would normally use. Doesn't seem to matter though what word we women use to refer to that area. You boys all get Bevis and Butthead about it. I just meant the mask covered half my chest, but not in the most comfortable way.

Glad Scam is doing ok.

NJR

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 :>)

Keep it
Greend,

I was under strict orders not to deface my mask and make sure I kept it for my Grand Daughter. The little fashionista promptly attached 50 silver stage nails to it and added a couple of velcro straps, a black body suit and small jar of pearl white face paint and sold it for 500$ as a Halloween costume! (I wish I would have held out for a picture)

jim and i

Thanks
Thanks Scam, I wish we had this info when Jim was going through RADS, would have been a big help.

Debbie

ggpierce

Mask
I had the mask too, this last time. 20 years ago when I had radiation my first time, they just told me to hold real still.

Hondo

osmotar said:

Black Salve
My mom was born in the USA, but raised in the Canal Zone,my grandfather worked for the government in Balboa. When we were kids and living back in the states my grandparents would send my mom a black salve in a small round goldish tin..the dang stuff smelled like tar and had about the same consistancy,mom would put it on cuts, any tye of sore, etc, the stuff worked. I haven't seen it in years and years, wonder if it's the samr type of salve your friend sent pics of.

Hi Linda
You described it pretty good so yes it must be the same stuff, now days you can’t get it in the USA you have to go outside to get it.

Thanks
Hondo

Hondo

ggpierce said:

Mask
I had the mask too, this last time. 20 years ago when I had radiation my first time, they just told me to hold real still.

Hi ggpierce

They also marked your face up and you could not wash it off until treatment was finished or so I was told.

Glad for the mask
Hondo

Army_Guy

THE MASK...
One thing that helped me was I learned to meditate (it's really easy) and was able to "Zone Out" while wearing the mask. Another thing that helped was to smear Aquaphor on my neck immediately after treatment; it really mitigated radiation burn.

dncinthrain

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!!

CivilMatt

helped me
Ask the technicians to talk to you while wearing the mask

One Lorazapam 30 minutes before the mask.

Music CD

Clear throat get rid of all itches

Shake head (a little) while the mask goes on to get a good fit.

If mask is over snug or too tight, raise your hand and have them refit it, it was always better after that and the technicians are there too make this doable.

Count if it helps

Matt

basil

CivilMatt said:

helped me
Ask the technicians to talk to you while wearing the mask

One Lorazapam 30 minutes before the mask.

Music CD

Clear throat get rid of all itches

Shake head (a little) while the mask goes on to get a good fit.

If mask is over snug or too tight, raise your hand and have them refit it, it was always better after that and the technicians are there too make this doable.

Count if it helps

Matt

Mask
I just had my 10th treatment. The mask is the biggest problem with the treatment. Too tight and they will not cut any eye holes or mouth hole. Did get them to cut a hole for
the nose. I used the nose drops yesterday and they helped as I cannot breath thru my
nose due to old fractures of the nose.

hwt

basil said:

Mask
I just had my 10th treatment. The mask is the biggest problem with the treatment. Too tight and they will not cut any eye holes or mouth hole. Did get them to cut a hole for
the nose. I used the nose drops yesterday and they helped as I cannot breath thru my
nose due to old fractures of the nose.

rads
Explain the situation to the techs and ask for their suggestions. If they are half as good as the ones that did my tx, they will do everything in their power to make this as easy for your Dad as possible. Try to assure him, if he panics he can wave his hand and tx will stop so someone can come in, however, then it will need to start again. Maybe he can give a thumbs up or down as to whether the mask is too tight. There are plexiglass pieces under the head that can be removed one at a time to give more room if needed. At least that is how mine was.

hwt

basil said:

Mask
I just had my 10th treatment. The mask is the biggest problem with the treatment. Too tight and they will not cut any eye holes or mouth hole. Did get them to cut a hole for
the nose. I used the nose drops yesterday and they helped as I cannot breath thru my
nose due to old fractures of the nose.

rads
Explain the situation to the techs and ask for their suggestions. If they are half as good as the ones that did my tx, they will do everything in their power to make this as easy for your Dad as possible. Try to assure him, if he panics he can wave his hand and tx will stop so someone can come in, however, then it will need to start again. Maybe he can give a thumbs up or down as to whether the mask is too tight. There are plexiglass pieces under the head that can be removed one at a time to give more room if needed. At least that is how mine was.

TracyLynn72

My mask

I'm halfway finished with my radiation (yay!) and the mask hasn't bothered me too much.  The day I had it made I was almost in tears because I was so scared, but I have had the most INCREDIBLE rad techs and they put me at such ease.  Laying totally flat on that table with my swollen face and mouth/throat full of thick saliva is the worst part for me.  I hack, cough and spit as much out before treatment as possible and then close my eyes and pray the entire treatment time.  I pray for all cancer patients and for their fight against this awful disease.  It calms me and seems to give me strength to get through it.  I only have a hole cut out for my mouth and I hold a breathing tube between my teeth for the treatment.  No eye holes as I keep mine tightly closed the entire time!! 

cadharose

TracyLynn72 said:

My mask

I'm halfway finished with my radiation (yay!) and the mask hasn't bothered me too much.  The day I had it made I was almost in tears because I was so scared, but I have had the most INCREDIBLE rad techs and they put me at such ease.  Laying totally flat on that table with my swollen face and mouth/throat full of thick saliva is the worst part for me.  I hack, cough and spit as much out before treatment as possible and then close my eyes and pray the entire treatment time.  I pray for all cancer patients and for their fight against this awful disease.  It calms me and seems to give me strength to get through it.  I only have a hole cut out for my mouth and I hold a breathing tube between my teeth for the treatment.  No eye holes as I keep mine tightly closed the entire time!! 

They cut eye holes in mine as

They cut eye holes in mine as well as a mouth hole and they also stretched out the neck area for me because I freaked out so badly about the mask the first time they went to put it on me. They tried to put it on me three times and each time I ripped it off and bolted upright. The tech was scared I was going to fling myself off the table. Fortunately, that was just for the PET scan and so they let me do it without the mask on that occasion. After that I went home and resolved in my mind that I would deal with it. I practiced putting my son's ski mask on and then lying down on my bed and pulling it tight around my head. I thought if I can deal with this I can deal with that. One is cloth, one is plastic and a little stiffer and that's the only real difference. And it worked! But the eye holes might as well not be there because I always keep my eyes closed, too, the entire time. I also flush out my sinuses and drink lots of water right before treatment so I don't have thick saliva or junk in my nasal passages. Did they offer to give you Ativan? Every time I have to wear mine I have the Ativan in me, plus I have pain medication and antihistamines in my system, and the combination of it all helps me to really relax when I'm on the table. I bring in my CDs of my favorite relaxing music to listen to. Plus, they scheduled my rad time for late in the afternoon which is the time I'm usually ready for a nap anyway. Now, the mask is no problem at all. In fact, I'm usually dozing and so comfortable by the time it's over and wish I could have a few minutes more.  At this point, I consider wearing the mask for the radiation to be the easiest part of my treatment.