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Got the mask today

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Well, I got the mask formed today - made it through it - almost felt like I was going to panic twice but didn't - kept trying to breathe and lower my heart rate - the techs were nice and helpful - one in training - the nurse for the contrast was great - it changed me though - I told my wife who was waiting that it was slightly terrifying and I could see how people could panic espcially when the mask continues to dry and pull tighter - when they pulled it off my face was full of sweat - I got up and relaxed - they had to put it on again for the contrast shot - it seemed not to be as tight the second time - an although they cut eye holes at my request I closed them for the entire procedure - it was still a little tight around my nose and mouth but I managed it - I kept singing Look for the Bare Necessities - from Jungle Book - I pictured Baloo and Bagheera and kept singing to myself in my mind over and over - but I never want to go through that part again -

According to the techs I have to wear it for about 30 minutes for the first time then less after the first time - I start treatments in 2 weeks - this changed me - we left and went to get something to eat - I kept eating and drinking and finally I settled down a little then more -

I think it would have been worse if I hadn't read posts on this network from all of you commenting about it  - so thank you all  - it helps again just writing this - I am gonig to beat this

Gotta go - my wife and little one want to watch a movie

My best to all

Steve

lornal's picture
lornal
Posts: 241
Joined: Sep 2013

Glad you made it through getting the mask made.  It was a tough one for me.  After 6 years, I still remember the appointment in detail.  That is pretty amazing for me to remember, because I needed 5 valium to make it through the CT scan.  I am extremely claustrophobic.  Probably a 12 on a ten point scale.  They made the mask just a half mask - so it covered the lower part of my face - but not my eyes and above.

Just 30-35 mome times wearing it - you'll make it fine.

 

Lorna

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

(or for the duration of rads, if you need).....there is Ativan.  I took a half of one everyday before rads, and basically dozed through every session.  It didn't make me like them more, but something about getting snapped into place on my back under a heated blanket....the music playing....my eyes would close and the next thing I knew it was over. 

p

CivilMatt's picture
CivilMatt
Posts: 2977
Joined: May 2012

 

Steve,

 

I traveled along mask lane with you.  While I was able to find it interesting, I still took 1 Lorazpam tablet for every rad treatment.  You will develop your own procedure to make it manageable.  If you like, you might take a music cd to play.  I had eye holes too, many do not.

 

You should be able to breeze right through the first few weeks without many concerns.  If you develop any issues, drop us a line and we will see what we can do.

 

Matt

 

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

I feel your pain, brother...

 

Today was my 4th rad treatment... nothing like being forced into your sarcophagus while still alive. I had some spit or something move a little bit in the back of my throat just as the treatment was about a minute or two from ending. Enter full fledge panick mode. I have no idea how I stayed under that mask when everything in my body was screaming at me to make the stop and get up. It was only God, as I tried to focus on Him and calm down. It was difficult, but I made it through.

What has been helpful for me is a slow count... counting to 100 at about half the pace of a second. When I get to 300 the treatment is either over of soon to be.

louhou13
Posts: 26
Joined: Nov 2012

Hi Steve, glad to hear you made it through the mask fitting; love the Jungle Book.  Can  you please comment on the surgery to move your saliva glands? I am considering radiation and would like more information. Thanks!

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

The Head and Neck doc recommended it in order to spare one gland the amount of radiation the other received - so on my right side they perfomed surgery and moved it - the surgery does not take long - alone about 45 minutes I am told - I had a port put in the same time so surgery lasted about 1.5 hours - they make an incision about 4 inches long at the base of the neck on the side where I do not have swollen lymph nodes - then they move the gland up, under the chin slightly and below your jaw line - in my case anyway - in order to move it out of the proposed radiation beam as much as possible.  My surgeon used stitches and a glue - supposedly the glue surface flakes off in two weeks or so - it is really only a little uncomfortable and unless I move my head fast in an upward direction it is just a little restrictive left and right - I am 1 week out of surgery - one day later I drove and back to work - two weeks though of non strenuous activity - so normal stuff and nothing strenous - not a big deal - I have a little bit of a crooked look to my mouth at the moment, one side opens a little more than the other - the doc says it should completely right itself over time and the normal sensations should return, it feels strange when I try to shave it with my electric razor - although it has gotten a little better in a week - I could eat anything afterwards just couldn't open real wide like I use to  - like I said it is a little better now already- but can't wrap my mouth around a big burger - but I am fine with a smaller mouthful - small price to pay if this works - it is supposed to work anyway - they have had good results with this and I have read online about it as well - According to the H&N nurse that works with patients at this practice - the gland takes a little time to start working again after it has been moved - so at the moment I don't notice any change in the amount of saliva in my mouth if the other one is working and this one is not - so this seems like a good sign that if the moved one is spared and comes back working after treatments then it was easily worth it - I hope this helps - sorry to go on so much but I guess if I can begin to help others along the way like all of you have responded and keep responding to me then well that's a good thing - let me know if you have any other questions I can comment on - I use this site to gain strength and prepare - everyone is terrific and I want to give back - I am trying to figure out an electronic hug!

On considering radiation - my options were surgery plus chemo/rad or just chemo/rad - my doc recommended chemo/rad - he did not feel the invasiveness of the surgery was any benefit and that they see good results with the chemo/rad treatment for my situation - I was offered a choice but immediately went with my H&N drs recommendation - I just like his approach and the way he talks and explains things to my wife and I, there seems to be a genuine caring for my welfare - okay I will stop there

Steve

yensid683
Posts: 232
Joined: Apr 2012

To NED!

I found my mask fitting to be nasty, not because it was tight or clastrophobic, but because the gel was hot!

I was lucky though, I never needed something to get me through rads, though like you , I kept my mind occupied with things.  Songs at first, but then I started playing with the numbers, timing the exposures, timing the machine moves, counting how many were done, how many to go and then finally doing the percentages.

I noticed that you said it helped to write the comment regarding the fitting.  It does help to journal your experrience.

I started one when I got the first assesment, that the odd metallic after taste was from a tumor on the base of my tongue.  I've kept it going through treatment and recovery and it is now up to 165 pages!  From time to time I go back and read it as it lets me see how far I've come from the side effects of rads.  It helped me keep going through treatments and it lets me vent even now, though I don't face as many challenges as I did.

Hope you continue to be positive through your journey, we'll be here to help you whenever you need it.

TracyLynn72's picture
TracyLynn72
Posts: 717
Joined: May 2013

Making the mask was way worse (for me) than the actual treatments.  I tend to get freaked out in tight spots, so I would go in and start praying as soon as they put the mask on me.  I prayed for the doctors, rad staff, nurses, my family, friends, co workers and all of the CSN family.  I noticed my prayers started taking up the entire treatment time and made me feel very peaceful.  I did have to make them stop on by last couple of treatments so I could spit a lot of thick junk out, but they gladly did, and started right back up.  The techs are WONDERFUL people!  Wishing you all the best!!

longtermsurvivor's picture
longtermsurvivor
Posts: 1804
Joined: Mar 2010

I have been through a total of 69 treatment sessions with the mask.  Early on, I decided to put the time to good use.  So each session I meditated, visualizing (symbolically) the little guys running around clearing out the cancer cells, then rerpainting the landscape with health.  It really did help, and the time always passed in a blink.

 

Pat

hwt's picture
hwt
Posts: 1944
Joined: Jun 2012

I think you will be pleasantly surprised at how quickly a session passes. I counted the songs and then I got so that I knew the rotations of the machine and could tell by the positioning how much longer I had. I was great with the making of my 1st mask because the tech told me it would feel like a facial with the warm wax and it did.  Prayers for an easy journey!

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

Getting the mask made was pretty weird. I finished my treatment in August and brought the mask home. Not sure what I'll do with it..art project! Treatments only last several minutes. I counted the "zaps". Towards the end I developed a lot of mucus and a cough which was hard to control while lieing there. Good Luck! I did ok with the rad treatments, it was when they were done that I felt sick for a few weeks

donfoo's picture
donfoo
Posts: 1245
Joined: Dec 2012

There was a great thread a few weeks ago where artists had made over the masks into works of art. Given your talent, I know you can do a super job of communicating how we feel and what we experience going through the treatments. don

Duggie88's picture
Duggie88
Posts: 542
Joined: Feb 2010

I still remember the mask days. I pull mine out of the basement every now and then to make a withdrawal at the bank. (just kidding) I did OK during my treatment by counting the stations (7 for me) and the total zapps ( 13........2 at each stop except for the last which was only one zap). I also use to think about one of the grand kids and some of the funny memories of each. We all find our own ways to get through it. The last day actually came quickly as it will for you.

   Jeff

Roar's picture
Roar
Posts: 241
Joined: Mar 2013

I would take a sedative before every treatment and while they made the mask- I forget what it was but it was close to a Valium - keep eating and drinking as much as you can as you are about to go on the best diet in history. Build up as much fat as you can now

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