Scared!! Diagonosed with throat cancer

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RE: Scared!! Diagonosed with throat cancer

by Blazin on Fri Oct 17, 2014 08:14 PM

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Hi Cheyenne,

Believe it or not, I just finished my last treatment for Parotid Gland Cancer today.  I also had to wear the mask.  I actually brought it home today.  I plan to put it at my front door for Halloween.  Ha Ha.

I'm 48, single, and for the most part I was alone for my treatments.  My parents were with me about 8 times out of 33 treatments.  Having the mask made was not that traumatic.

But I will say that when the side effects started takng effect on about the 10th day, the mask did become horrifying.  I was in a lot pain and could barely talk and I did not like being clamped down with that mask. 

I actually cussed the hell out of a few of the nurses because I was very, very mad.  I don't really have anything great to tell you.  But I would advise to try and have someone go with you for your 8-10th treatment.  That is when the sh!t hit the fan for me. 

A thread about my experience is on this board.  It's titled "What should I expect down the road".  I updated it every week.  Maybe it can be of some help.  I'll keep a look out for you additional post.

And oh, by the way, I never listed to music.  I usually just put my mind in a place to think about other things. 

RE: Scared!! Diagonosed with throat cancer

by CheyenneMoon on Fri Oct 17, 2014 08:47 PM

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On Oct 17, 2014 5:19 PM Atoms wrote:

I found the mask experience totally terrifying. I didn't stop treatment at any point but I had to ask for some time to calm down a few times. If you can't control yourself, take the drugs, I'm three years out and I still take a Klonopin occasionally when I'm really whipped. The payback is a good chance for recovery. I'm ever grateful for Dr. Kumar and his excellent management of my radiation treatment. I believe the radiation saved me from Stage IV by killing the scattered here and there cancer cells. It's worth it. Learn to deep breathe, to meditate, to pray continually, anything that lets you relax and get through the treatment.

Yes the mask totally terrified me. I have had two panic attacks since then but have come to the conclusion that it being caused by the Marinol. I went from one a day to two a day and I guess it just gets me overly paranoid. Cutting that back to a one a day pill. They have given me a prescription for Ativan so I will take one of them before I leave for my first treatment and plan on bringing the bottle with me. I appreciate your words of encouragement and support so much. Thank you and God bless you.

RE: Scared!! Diagonosed with throat cancer

by SkanJim on Sat Oct 18, 2014 02:09 AM

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Hi Cheyenne,

Below is a write up I did for our support group, and it gets shared with people preparing for RT.  I hope it helps!

SkanJim

RT Therapy: Par for the Course

I think it is safe to assume that most of us will experience some level of anxiety once we are all snug in position for the day’s RT treatment.  Based on a suggestion from my brother, an experienced MRI patient, I spent my 33 treatments playing golf! 

The first day I simply closed my eyes and imagined standing next to the 1sttee at my favorite golf course.  It’s my turn to play.  I proceed to tee my ball and stand behind it to line up my shot.  After two practice swings I hit my first shot down the left side of the fairway.  I put my club in my bag and begin the walk down the first hole to my ball.  It takes a few minutes to get to my next shot, and along the way I can smell the mown grass.  About the time I finish the first hole my treatment is over. The next day I close my eyes and begin the walk to the next tee.

The key for me isn’t golf. It is my familiarity with the golf course.  You can take a walk around your neighborhood, or prepare a different recipe every day.  A couple of days I skipped golf and went fishing.  Whatever you choose, go step by step and be sure to do it in real-time.  Every day gets easier.

RE: Scared!! Diagonosed with throat cancer

by Mercy61 on Sat Oct 18, 2014 03:35 AM

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On Oct 17, 2014 8:14 PM Blazin wrote:

Hi Cheyenne,

Believe it or not, I just finished my last treatment for Parotid Gland Cancer today.  I also had to wear the mask.  I actually brought it home today.  I plan to put it at my front door for Halloween.  Ha Ha.

I'm 48, single, and for the most part I was alone for my treatments.  My parents were with me about 8 times out of 33 treatments.  Having the mask made was not that traumatic.

But I will say that when the side effects started takng effect on about the 10th day, the mask did become horrifying.  I was in a lot pain and could barely talk and I did not like being clamped down with that mask. 

I actually cussed the hell out of a few of the nurses because I was very, very mad.  I don't really have anything great to tell you.  But I would advise to try and have someone go with you for your 8-10th treatment.  That is when the sh!t hit the fan for me. 

A thread about my experience is on this board.  It's titled "What should I expect down the road".  I updated it every week.  Maybe it can be of some help.  I'll keep a look out for you additional post.

And oh, by the way, I never listed to music.  I usually just put my mind in a place to think about other things. 

I am very impressed that you went through your treatment by yourself. You are a strong person. I like the idea of using your mask as a Halloween decoration. My husband also had a mask for his radiation for tonsil cancer. We were going to put his mask in our garden and have morning glory flowers grow over it. Good luck to you as you continue to heal. Paula

RE: Scared!! Diagonosed with throat cancer

by Albatross191 on Sat Oct 18, 2014 07:58 PM

Quote | Reply

hi

i finished treatment in may ,the mask making is stressfull but treatment isnt so bad,i took a soothing cd in and the staff but it on for me so i could focus on the music rather than the linac ,it work for me and many others seemed my cd came a bit hit with other patents (London Grammer ) If You Wait ,treatment seem to last only two tracks , make sure you use creams they give you on your skin to help to stop burns on outside ,hope you get better soon.x

Dave

RE: Scared!! Diagonosed with throat cancer

by CheyenneMoon on Sun Oct 19, 2014 12:27 AM

Quote | Reply

On Oct 18, 2014 2:09 AM SkanJim wrote:

Hi Cheyenne,

Below is a write up I did for our support group, and it gets shared with people preparing for RT.  I hope it helps!

SkanJim

RT Therapy: Par for the Course

I think it is safe to assume that most of us will experience some level of anxiety once we are all snug in position for the day’s RT treatment.  Based on a suggestion from my brother, an experienced MRI patient, I spent my 33 treatments playing golf! 

The first day I simply closed my eyes and imagined standing next to the 1sttee at my favorite golf course.  It’s my turn to play.  I proceed to tee my ball and stand behind it to line up my shot.  After two practice swings I hit my first shot down the left side of the fairway.  I put my club in my bag and begin the walk down the first hole to my ball.  It takes a few minutes to get to my next shot, and along the way I can smell the mown grass.  About the time I finish the first hole my treatment is over. The next day I close my eyes and begin the walk to the next tee.

The key for me isn’t golf. It is my familiarity with the golf course.  You can take a walk around your neighborhood, or prepare a different recipe every day.  A couple of days I skipped golf and went fishing.  Whatever you choose, go step by step and be sure to do it in real-time.  Every day gets easier.

I think I will try doing a similiar thing. It is very good advice.  I am so glad you have finished your treatment and I wish you all the best. This site is awesome as are all the people that are so willing to share their experience and offer support. I try to answer everyone but sometimes find it difficult to get to every one. Thank you so much for the advice and encouragement. I can do this. I will have to dig deep and with God's help and that of all of you, my husband and a couple of friends I will get through it. Oh and my absolute full blown panic attacks were caused by the Marinol.

RE: Scared!! Diagonosed with throat cancer

by CheyenneMoon on Sun Oct 19, 2014 12:34 AM

Quote | Reply

On Oct 18, 2014 7:58 PM Albatross191 wrote:

hi

i finished treatment in may ,the mask making is stressfull but treatment isnt so bad,i took a soothing cd in and the staff but it on for me so i could focus on the music rather than the linac ,it work for me and many others seemed my cd came a bit hit with other patents (London Grammer ) If You Wait ,treatment seem to last only two tracks , make sure you use creams they give you on your skin to help to stop burns on outside ,hope you get better soon.x

Dave

Glad your treatment is finished. I didn't know you could bring your own music. Well I haven't started treatment yet but will this coming week. Guess I will ask about the music cause I have a CD I would love to listen to. As far as the things that they told me I need to do for my teeth, my skin and everything else I plan on doing in the hopes that it will help. They didn't talk to me about creams though. They asked what I use for lotion and I told the Aveeno which the said was good. Every on has had such good advice....I am so thankful. God bless.

RE: Scared!! Diagonosed with throat cancer

by CheyenneMoon on Sun Oct 19, 2014 12:40 AM

Quote | Reply

On Oct 18, 2014 3:35 AM Mercy61 wrote:

On Oct 17, 2014 8:14 PM Blazin wrote:

Hi Cheyenne,

Believe it or not, I just finished my last treatment for Parotid Gland Cancer today.  I also had to wear the mask.  I actually brought it home today.  I plan to put it at my front door for Halloween.  Ha Ha.

I'm 48, single, and for the most part I was alone for my treatments.  My parents were with me about 8 times out of 33 treatments.  Having the mask made was not that traumatic.

But I will say that when the side effects started takng effect on about the 10th day, the mask did become horrifying.  I was in a lot pain and could barely talk and I did not like being clamped down with that mask. 

I actually cussed the hell out of a few of the nurses because I was very, very mad.  I don't really have anything great to tell you.  But I would advise to try and have someone go with you for your 8-10th treatment.  That is when the sh!t hit the fan for me. 

A thread about my experience is on this board.  It's titled "What should I expect down the road".  I updated it every week.  Maybe it can be of some help.  I'll keep a look out for you additional post.

And oh, by the way, I never listed to music.  I usually just put my mind in a place to think about other things. 

I am very impressed that you went through your treatment by yourself. You are a strong person. I like the idea of using your mask as a Halloween decoration. My husband also had a mask for his radiation for tonsil cancer. We were going to put his mask in our garden and have morning glory flowers grow over it. Good luck to you as you continue to heal. Paula

I couldn't imagine doing this alone. My hats off to you and the strength that you have. I too thought about keeping my mask and using it for Halloween. Guess great minds think alike :-p I also love the idea of the garden. Oh wait I just had an awesome idea...I am in the process of building a new house which will be stucco. Maybe I will incorporate my mask into the stucco. Lol

I hope you and Paula's husband both continue to heal. God bless.

RE: Scared!! Diagonosed with throat cancer

by CheyenneMoon on Sun Oct 19, 2014 12:48 AM

Quote | Reply

An update on my severe panic. I about went crazy yesterday with a panic attack but because of a couple people I am still here. I was truly blessed they were home. MARINOL is not my friend. I have quit taking it and the panic attacks have stopped. I now believe I can get throught the treatments I haven't even started yet. The reason I was given the Marinol was when they first mentioned the feeding tube for treatments I said no cause I was scared. So the doctor prescribed the Marinol to make sure I had appetite. I could not believe how Marinol made me feel. Good thing my friend and her mother were there otherwise I probably would have been seen running down the street butt naked, screaming my head off. 

RE: Scared!! Diagonosed with throat cancer

by kathyamundson on Wed Oct 22, 2014 04:05 PM

Quote | Reply

Sorry to hear you are having to go through this!!! I was the exact same way.  I am very claustrophobic and when they showed me the mask, I was like there is no way that I can do that every day, I had to have 35 radiation treatments.  The dr gave me a rx for xanax to use, and for the first week I used it every day.  I also was able to bring my phone in and turn music on so that I had something else to listen to, I aslo learned how many songs I had to go through.  So if I started to panic I could say ok only 1 more song and then I am done.  Hope this will help a little.  I am now 3 months out. 

Kathy

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