CSN Login
Members Online: 11

Did you keep your mask?

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Just wondering if everyone kept their mask and what did you do with it?
I kept mine and am collecting different animal fur to make a halloween mask (or wall hanging) out of it!

BILL

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I did keep mine. In the beginning I had mixed emotion. On the one hand I hated the mask and the treatments. Of course the mask reminded me of the treatments. But, I came to realize that the mask was in fact almost as an important part of my treatment team as any of the Doctors, Therapists, Nurses, etc. So yes, I still have mine now only 4 months later or so. I don't have it in a place of honor, but I truly feel as though a large part of my successful treatment was in thanks to the mask.

JK
PS: I still call it "IT" though. HAHA

smfitztx2010
Posts: 4
Joined: Jan 2010

I just finished up my IMRT radiation treatments on Tuesday and yes I did keep my mask. Not sure what I will end up doing with it, but after that experience I just couldn't let it go without taking an opportunity to think about it first.

dlugo48
Posts: 7
Joined: Sep 2007

This is something i would do if i was at the right state of mind.I had 28 external radiation sessions and i wasnt all there afterwards i had mix emotions everytime i saw it.plus my neck was burning up due to the radiation ,i should of kept it i would of done something good with it like letting my wife wear it when she screams at me.HAHA Did anyone panic during the mask fit.jerry mtc survivor

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

I did have a moment of panic. The techs did not explain what they were doing and next thing I know they are stretching this hot plastic thing over my face, I about flew off the dang table! After they explained what they were doing and how they were doing it, mask #2 fit just fine.

BILL

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

i got 2 masks i lost wieght so they had to make another
i use them to strain my pasta and wash my veggies

awsumtime
Posts: 10
Joined: Jan 2009

I lost50 lbs. and a year out an still under weight. I tell eeryone it took me nearly 50 years to get this skinhy. How about you. In drank water and protein shakes for 6 months and then had to learn to eat again. Bread and meat are still difficult to eat. I have my mask. I want to burn it some day.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I am a little claustraphobic and of course finding out I had the big C didn't help, but I told my Rad Oncologist and he prescribed Ativan for me. I had to take either 1/2 or a whole one for almost every treatment. But you know what? Whatever it takes to get through and Git-ur-Dun!!

HEY DLUGO48 if you are still having neck irritation try pure Emu oil. It worked wonders for me.

Be well

connie_62257's picture
connie_62257
Posts: 27
Joined: Jan 2008

im on my 2nd week i do take something ...i call it the chill pill. i wouldnt be able to put that mask on without it..lol and when im done im gonna keep mine and paint the dang thing hang it on my wall..........lmao

BIL777's picture
BIL777
Posts: 1
Joined: Dec 2008

I WENT THRU IT TWICE RADIATION 2 TIMES A DAY ALONG WITH CHEMO 2 TIMES A DAY 9 YEARS AGO & 4 YEARS AGO. THE FIRST TIME I HAD MY MASK MOUNTED LIKE A DEER HEAD AND HUNG IT ON THE WALL.
WHEN I HAD THE RELAPS. I TOOK IT DOWN AND BURNED IT. I LIKE YOU HAD TO TAKE A CHILL PILL ALSO
DO NOT GIVE UP NEVER GIVE UP!!!

awsumtime
Posts: 10
Joined: Jan 2009

What kind of cancer did you have that you got a relapse?

Defrich
Posts: 1
Joined: Jun 2009

I know the feeling.
I took zanex the first week.
Finally I could handle the anxiety( not completely, but enough to focus on the process ans not my anxiety )finished the radiation and chemo begining of april 2009
Good luck to you...Blue Skies...Richard

dlugo48
Posts: 7
Joined: Sep 2007

jkinobay that sounds like $$$ in peradise im checking out the total lunar eclipes its awesome. best things in life are free this is one of them,the heavens in motion.I had my external radiation back in nov. 2006 i used alovara gell over the counter the cheap stuff, worked better then the 8 ounce 30$ coat lotion/gell i bought.thanks for your info.jerry mtc survivor

KarCar523's picture
KarCar523
Posts: 21
Joined: Oct 2008

I was 13 when i had my mask fitted and I was so scared that i made my dad make one first. LOL

debbiejeanne's picture
debbiejeanne
Posts: 2227
Joined: Jan 2010

dlugo48, i didn't keep my mask as I didn't want any extra reminders of what I'd been thru. I did panick twice and had the girls take it off so I could catch my breath. After a few minutes I was able to get the treatment.
debbie

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Finished my chemo and radiation 4 weeks ago, yes i had two panick attacks on teh table, where they had to stop, i had teh phlem thing going on and was at the pioint feeling like i was choking to death. Right now I have mixed emotions on my mask, i want to burn it emotional, yet after reading the articles here i may keep it...as a badge of honor, can anyne tell me when this phlem thing subsides or stops, I'm tired of the soreness at night, they tell me this is from sleeping with my mouth open, to drinking water and spitting all day, any positive reinforcement here. Thanks Guys, What a Great Site!

zepfreak
Posts: 24
Joined: Mar 2011

After they made my mask, which was terrible but I got through it, my Dr. told me the angle was wrong and they had to make another one. Without even thinking, I immediately backed into the corner. Dr.knew what was up and was very re-assuring. Prescribed adavan for the re making and my sessions. I tried to go to one of my later sessions without the meds and couldnt do it. I'm not claustrophobic in small rooms but couldn't handle the mask. I did keep mine. I have it hanging on a wall with a cigarette sticking out of the mouth area. Don't be ashamed if you panic, it happens to many patients.

zepfreak
Posts: 24
Joined: Mar 2011

After they made my mask, which was terrible but I got through it, my Dr. told me the angle was wrong and they had to make another one. Without even thinking, I immediately backed into the corner. Dr.knew what was up and was very re-assuring. Prescribed adavan for the re making and my sessions. I tried to go to one of my later sessions without the meds and couldnt do it. I'm not claustrophobic in small rooms but couldn't handle the mask. I did keep mine. I have it hanging on a wall with a cigarette sticking out of the mouth area. Don't be ashamed if you panic, it happens to many patients.

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

i don't know why, but yes, i did keep my mask. it is tucked away on a shelf in the closet. it reminds me of a piece of armor in my battle against cancer.

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

LOL, I never thought of it like that. I saw mine more like chickenwire, enough chickenwire to keep the big chicken on the table!

BILL

connie_62257's picture
connie_62257
Posts: 27
Joined: Jan 2008

lol.......i put a pic of me wearin mine in the gallery.....man i hate that mask.....but its still goin on the wall,,,,,lmao

janymac
Posts: 31
Joined: Feb 2010

I also don't know why I kept it....lobbed it to the back of a high clset shelf and occassionally freak myself out when i found it. Want to get rid of it, but is not the sort of thing you put in the trash! How many years do you think it would take to biodegrade? So the big question - what do you do if you kept it, but don't know what to do with it when you want to get rid?

Have to say, although I hated it, it was a turning point in my life as my life has never been the same since I had it - my whole way of swallowing, the constant sniffs, hearing aids and tinitus, my unique way of keeeping balanaced...it is really part if the new me that after 8 years shows no sign of going away.

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

I have my mask hanging on the wall of my basement like a deerhead! I look at it when I'm thinking that I am having a bad day, its a good reality check!

Coryj's picture
Coryj
Posts: 1
Joined: Feb 2008

I did keep my mask, but freaked my wife out so i put it in my office at work - good conversation piece for coworkers and visitors that smoke. Have been away from there about a year and need to get it back.

jeepie
Posts: 2
Joined: Sep 2007

No way, was just so happy to walk out of there for the last time, have no idea what they did with it, never want to see that place again. They want to do a PETscan, I don't think so. Has anyone had it?

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Definately get the PET/CT. They call it "God's GPS for cancer". It covers eyes-to-thighs. You have to fast before it, they inject a radioactive glucose. When fasting, the only cells that will uptake the glucose are cancer cells, so they show up no matter how small. It is a great way to know you are still cancer-free or to early diagnose a problem if there is one.

GET IT>......................JK

CroationGal
Posts: 5
Joined: May 2008

A Pet Scan is nothing to be afraid of......look up the procedure online. If your Doctor suggested it.....you should take his or her advice as he or she got you this far! I have had them and I would have them again if it meant preventative care. Good Luck, Good Health and God Bless!

antmeme17
Posts: 2
Joined: Jun 2009

HELLO TO MY 1 ST. REPLY
YES I JUST HAD A PET SCAN 3-4 WEEKS AGO ! IT LIGHTS UP ANY AND ALL CANCER THAT MAY BE IN YOUR BODY ? I HAVE NASOPHARENGEAL STAGE 3
WORST THINGS THEY TOLD ME IS : YOU HAVE TO GET ALL YOUR TEETH PULLED AND THEN YOUR HAIR WILL MOST SURLEY FALL OUT , AND YOU ARE GONNA HATE THE DR.S AND WISH YOU WERE DEAD AND THEN HE SAID THE RADIATION WILL BURN YOUR TASTEBUDS OUT OF YOUR HEAD AND THE SALIVA GLANDS TOO ! SO, I ASKED FOR HONESTY AND THAT MASK ? O M G !!!!!!!!!!! I CANT HARDLY BREATHE OUT OF MY NOSE AND WHEN THEY PUT THAT THING ON MY FACE I THOUGHT I WOULD SUFFOCATE AND I CRIED SO HARD AND SHOOK SO BAD AND SHE FINALLY TOOK ONE OF THE PADS ?OUT AND THAT GAVE ME ABOUT 1/8 OF AN INCH SPACE AWAY FROM MY MOUYH ! IT WAS HORRIBLE ! I START CHEMO NEXT THURS. JUNE 11 TH AND MAYBE MONDAY WITH THE RADIATION >? THIS ALL STARTED WITH A LUMP ON MY LEFT SIDE OF MY NECK , WORSE PART OF ALL , I HAVE NO INSURANCE , BUT THAT IS THE LEAST OF MY WORRIES NOW ! I JUST RECEIVED MY DISSABILITY DEC. 2008 WITH NO INS. BECAUSE I AM 61 YRS YOUNG AND GOT THE DISS. IN 4 MONTHS TIME ! SOOOOOOOO>????
WHAT A GREAT RETIREMENT PARTY THIS IS GOING TO BE ! I HAVE TO HAVE 6 WEEKS OF RADIATION AND 3 CHEMO TREATMENTS AND AFTER THE RAD.IS OVER I HAVE 3 MORE DOUBLE DOSES??
MY DR. SAID I WONT HAVE A FEEDING TUBE BUT WILL BE ON ALL LIQUIDS? I GUESS I WILL LIVE OFF MY FAT ?? I HAVE BEEN HAVING A TERRIBLE TIME WITH ALL THIS HORRIBLE NEWS ! I KNOW IT COULD BE WORSE BUT GEEEEEEEEEEEEEEEEEESSSSSH ! I AM SUCH A CRY BABY THESE DAYS AND THE FEAR IS BEING PRAYED AWAY {THANK GOD ! } SO ?? ANY HELP ANYONE CAN GIVE ME AS TO HOW FAST I WILL GO DOWN HILLL AND HOW FAST I WILL START BACK UP TOWARD THE GOOD SIDE ? AND WHEN WILL I FEEL LIKE LIVING AGAIN ? MY NIECE {MY GODCHILKD} IS GETTING MARRIED IN DEC???????HELP

thunder101's picture
thunder101
Posts: 2
Joined: Jul 2009

keep your head up i was stage 4 with no chance and i BEAT IT !!!! if you need any help with any aspect of the treatment or any emotional support i am here for you

paaatriot101's picture
paaatriot101
Posts: 17
Joined: Oct 2009

Woo Thunder 101, lol this is Paaatriot101 (Coincidence on the 101?) I was so glad to see that you said you beat IV. Long story short I have just been diagnosed stage IV B, and have been unable to find anyone who had beat that stage:) You Just made my night, cool on the 101.

viking796
Posts: 4
Joined: Nov 2009

Me too. I had stage iv golf ball size tumor growing on my right tonsil. 2 chemos and 39 radiation treatments in june, July Aug of 2008 and I am still hear.
viking

Deb_Ra's picture
Deb_Ra
Posts: 8
Joined: Jul 2009

Dear antmeme17, hang in there! It's not the end of your life, even if you may think that at times. I found a wonderful product called Metagenics Medical Food. I found I was malnourished with Boost and Ensure and that is not what you need when you are trying to heal from chemo and radiation therapies. I drink it mixed with Ben and Jerry's Phish Food ice cream, whole milk, a banana and a 1/4 whole peeled pineapple. Yummy - and it provides you with all the nutrients, minerals and vitamins you need every day as well as about 1500 calories. Believe it or not, if you can keep your weight up you will heal much faster. In the middle of healing time you'll feel like it'll never end but what kept me going is "this, too, shall pass". And it does. I am now 2 and 1/4 years past my chemo/rad therapy for stage 4 tonsil cancer. I am now able to eat some soft foods as well as my Metagenics suppliment drink and am no longer struggling with malnutrition. Keep your chin up and smile, every day. You'll feel better and so will those around you. Keep your godchild's upcoming wedding in front of you as a goal to work toward so you don't get bogged down with the day to day trials. Keep us posted with your progress. What are you going to wear?

moconnor
Posts: 4
Joined: Jan 2010

Hi Antmeme17,
I was wondering how you are doing now? I know you made this post back in June so I wanted to see if you had started treatments and how that is going?
My mom was diagnosed with nasopharengeal cancer about a month ago and starts treatments on thursday. Any insight that I could pass onto her would be great!

Jil
Posts: 5
Joined: Jul 2010

So sorry and no doubt like everyone here, I know the fear and the shock of it all. I cried every day for months - the whole family got used to it, often cried with me, and learned beautifully how to just let whatever needed to come out that day express itself and we'd move on.... Initially I felt so much shock, I felt as if all of a sudden I had been robbed of my good health and terrified of the future. But somehow getting started on treatment helped, I thought of it as getting on board the train to wellness. Doing what needed to be done and taking the very best care I could of myself, letting others help, and NOT thinking about the future was all of great benefit. Mine was staged T4 and it is possible I have metastatic nodule, but it is too early to tell. It has only been 7 months since my journey with this cancer began - it took me roughly five months to really start feeling stronger again. Today I am in better shape than I had been in a few years - so I would definitely plant some goals every few months, like plan on enjoying that wedding. Be strong, walk tall, and look for a little joy in each day. All the best to you! jil

Jil
Posts: 5
Joined: Jul 2010

So sorry and no doubt like everyone here, I know the fear and the shock of it all. I cried every day for months - the whole family got used to it, often cried with me, and learned beautifully how to just let whatever needed to come out that day express itself and we'd move on.... Initially I felt so much shock, I felt as if all of a sudden I had been robbed of my good health and terrified of the future. But somehow getting started on treatment helped, I thought of it as getting on board the train to wellness. Doing what needed to be done and taking the very best care I could of myself, letting others help, and NOT thinking about the future was all of great benefit. Mine was staged T4 and it is possible I have metastatic nodule, but it is too early to tell. It has only been 7 months since my journey with this cancer began - it took me roughly five months to really start feeling stronger again. Today I am in better shape than I had been in a few years - so I would definitely plant some goals every few months, like plan on enjoying that wedding. Be strong, walk tall, and look for a little joy in each day. All the best to you! jil

Jil
Posts: 5
Joined: Jul 2010

So sorry and no doubt like everyone here, I know the fear and the shock of it all. I cried every day for months - the whole family got used to it, often cried with me, and learned beautifully how to just let whatever needed to come out that day express itself and we'd move on.... Initially I felt so much shock, I felt as if all of a sudden I had been robbed of my good health and terrified of the future. But somehow getting started on treatment helped, I thought of it as getting on board the train to wellness. Doing what needed to be done and taking the very best care I could of myself, letting others help, and NOT thinking about the future was all of great benefit. Mine was staged T4 and it is possible I have metastatic nodule, but it is too early to tell. It has only been 7 months since my journey with this cancer began - it took me roughly five months to really start feeling stronger again. Today I am in better shape than I had been in a few years - so I would definitely plant some goals every few months, like plan on enjoying that wedding. Be strong, walk tall, and look for a little joy in each day. All the best to you! jil

Jil
Posts: 5
Joined: Jul 2010

Sorry for the double entry - it was so slow to post...is there a way to delete an entry?

finz2lft
Posts: 43
Joined: Jun 2010

First, dont write in caps in represents you hollaring at everyone. You will be fine, hang in there. I have been through it all, and still here.

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hello Jeepie

Yes, I did have a pet scan. I am 6 years out and was DX in 2003 with SCC and had 3 lymph nodes removed. I now see my docs twice a year. The first 5 years it was every 3 months. I alternate between PET scans and CT Scans with contrast. Neither one is a big deal. If you have had an MRI or CT scan you can get a PET scan. The only difference is that you get a small amount of Nuclear medicine injected into your arm, sit quietly for 2 hours, which go by quick, have the scan and they do the entire body versus just the effected area with CT and MRI and it takes about another 1 to 2 hours and your done. The thing that is great about the PET scan is it gets down to cellular level and tells the docs if you have any cancer cells in your body before they turn into a tumor. I insist on this scan every other year and my doc. tells my insurance company it is needed and viola they approve it. Trust me, it is the best first defense in detecting cancer and stopping it before it starts. It is not painful, just boring.

Pete

dlugo48
Posts: 7
Joined: Sep 2007

I consider myself lucky to go to a place like this when in need.I had the best technichians in the world they were funny and careing.I will never forget Dr. Carlos Hernandez and his staff, its funny but when I pass away 100 years from now they will be in my heart.I threw mine away I guess im a big scary cat.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

By the way, I did keep my mask. I consider it a very valuable member of my Cancer Cure Team that saved my life. I also showed it to one son and several friends who smoke......various reactions. GREAT NEWS.....my son quit after watching my treatment from the control room. That was October and he has not smoked since. So, my mask is still working. JK

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

I have posted a few pictures of mine on a talk back board elsewhere in my life. Anytime someone posts that they just can't seem to quit smoking I post it along with a VERY detailed message of what comes with it. So far about 4 people have said it haunts them when they even think of lighting up!

BILL

dlugo48
Posts: 7
Joined: Sep 2007

im realizing that i made a big mistake i should of taken my kids to see what i was going through during my external radiation treatment,while i was being strap down to a table with the mask.but i did not want to infringe in their privacy or scare them.plus im so freaking private.maybe by seeing this they would consume the right foods and see life in a different way.i should of kept the mask as a reminder.live and learn.

RonInScotland's picture
RonInScotland
Posts: 3
Joined: Jul 2008

Hello USA from Bonnie Scotland.

Yes I kept mine - had it since 1995 - and when Im a bit down I go and look at it and remember what bad times really were. It soon brings me back into line!!! I lost (what we call here in Scotland) my "lollipop" that I used to have to put in my mouth every radio blast. God knows what the guy who bought our house will think if he found it!!!

I had nasopharyngeal cancer with 4 tumours in my neck but Im now clear.

The reason im on this site is that I cant find one similar in GB.

Great site here and look forward to more visits to share with others the trials and tribulations of The Big C

Regards to all

Ron

dedesert's picture
dedesert
Posts: 17
Joined: Aug 2008

It is called http://share.macmillan.org.uk/Share/Forums/?topic=1006252

oh by the way, I didn't keep my mask. My neck was so burned , I mean

burned like a crisp I almost couldn't go through with the last treatments

a reminder of which, personally, I can do without!

deepappas
Posts: 1
Joined: Sep 2004

Hi,

My husband didn't keep his mask and didn't even think about it.....possibly because on the way for his last day of radiation my doctor left a message on my cell phone that I had basil cell carcinoma which totally freaked me out. I am fine and treatment went great; unfortunatly my husband is still suffering greatly! Cancer over but keeps getting aspiration pneumonia and now they want to replace his peg tube with a J tube and am having a very difficult time finding info out on that................one dr said he wouldn't do it and others say go for it! Our daughter who is now teaching nursing does not want him to get the j either??????? Very confusing!

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

There is most likely a picture of you on the table in your file, they use it for alienment(sp?) during your treatment, it is not your mask, but shows you in it.

BILL

stevelfun's picture
stevelfun
Posts: 17
Joined: Dec 2007

Yup.... I have it....

RE: mixed emotions - That says it all right there. Mixed emotions. LOL You hit the nail on the head with those words.

I hated those treatments. The techs were great though. I couldn't have had a better crew of people (Barbara, Rebecca and Tony you ROCK!!!)

BTW, anyone else stop by and visit the people (nurses/techs) in the chemo and radiation suites when you go back for follow up appointments????

I do.

I remember them telling me - esp. the radiation techs - that they see these people daily for weeks. You get to know them. Become part of their lives, what they do, enjoy, spend their time doing, etc... (Barbara liked to 'borrow' her daughter's ear rings... LOL)

Then - poof - you finish.

They see you when things are so very bad for you and you might well have a difficult time even mustering a smile. And they don't often get to see people when they are better. I remember them telling me this. They often wonder how people are doing.

I like to go back and 'smile' for them every time I can.

As for the mask - I am torn between burning it in my fireplace - to 'vent' some emotion per se and keeping it as a constant reminder - not that I will soon, if ever, forget any of my journey through my cancer treatment(s).

Best to all.

Steve

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

I stop in the chemo area to see my favorite nurses! The biggest problem I have as a "big strong man" is not breaking down and crying my eyes out when I am in there talking with the people I see as Heros in my life, I love them each and every one!

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

Yes, I have my mask in my closet. My wife hates it when I get it out but I can't seem to part with it and it's been over 2 1/2 years. I alsways thatght that scanner type LEDs to make a "Cylon" mask ala "Battlestar Gallictica" would be cool but I would have to get motivated and do work. lol

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

I had it for years after I was done but my house was damaged in a hurricane and with all the mold I had to get rid of it.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network