I need help with my next fear in this process

Shell_7801

Hello all,

I need help with this.  

My simulation for radiation is scheduled for the 24th.  I'm just recovering from left tonsillectomy and neck dissection.  When I woke up in recovery from these surgeries I felt like I was being choked.  I couldn't get the air into my lungs.  As I'm sure many of you can relate, this is a terrifying feeling.  Deeply terrifying! I'm slowly healing and forcing myself to swallow and eat.  I do believe I'm making progress.   So they want to start my radiation as soon as possible, no later than six weeks from the day of surgery.  

If I'm still swollen and then have radiation how can they be sure that my throat won't swell shut?!  I'm again terrified that this is going to happen and what do I do when it does?  I would never typically dwell on negatives, I just want to plow through as best I can so that I can get back to my dream of starting my business.  But I can't shake this fear.

Please help.

Shell

 

CivilMatt

they won't let you choke

Shell,

I never liked mask time, but by taking 1 Lorazpam before treatment I came to find it interesting.  Also,  I had some oldies tunes to listen to.

Once, just as the techs left the room I threw my hands up and asked for a do over.  They  are very understanding and let me up to rinse and spit and get ready all over again.  Mind you this was one of my last weeks and I was at my worst.

Some pray, others count or dream.  It is a whole procedure you customize to yourself.

Good luck,

Matt

Guzzle

CivilMatt said:

they won't let you choke

Shell,

I never liked mask time, but by taking 1 Lorazpam before treatment I came to find it interesting.  Also,  I had some oldies tunes to listen to.

Once, just as the techs left the room I threw my hands up and asked for a do over.  They  are very understanding and let me up to rinse and spit and get ready all over again.  Mind you this was one of my last weeks and I was at my worst.

Some pray, others count or dream.  It is a whole procedure you customize to yourself.

Good luck,

Matt

rads etc

I had same op and started treatment 5 weeks later. They will monitor you v. Closely. They wont start unless they think you are ready. Good luck. Still chuckling about your joke to Polish aunt. G.

Skiffin16

One Day at a Time..

You just got to take it as it comes... Some days are good, some not so much.

As mentioned, they will be checking you every day. 

If things got really bad, and they were worried, you'd get a PEG. I didn't have one, my throat wasn't swollen, just sore. So I switched over to primarily liquids.., Ensure and such... a few sliced peaches in syrup that could easily slide down... You want to keep the swallower working good too.

John

ratface

"What do I do when it does" It won't!

Hi Shell

 

Your throat will not close shut, It won't happen. You do not have to plan for this. The technicians are wonderful at what they do and take great care in preserving your safety. You will get through radiation without incident, guaranteed! When you woke up from surgery you had been under anesthesia. It is quite common to see any manner of demons while recovering from these effects. Radiation will not close your throat shut, period! This is a different event and you cannot connect the two.  Put this fear to rest today. That said this is a good time to ask for help, I was on mild anti depressents the whole time I was in treatment. They are not for everyone but I needed them. My mind worked similar to yours and some fears just crept in. The medication kept them under control. Your next steps while fearful are all doable and you can do this. Stay here and ask questions when needed. You will find great support here. Welcome to our community.

 

 

TracyLynn72

((HUGS))

I feared the same thing.  I had two surgeries and was in rads within 6 weeks.  I was so swollen and couldn't really lay flat without gagging.  I had to breathe deep, pray, and let my mind only think happy thoughts through each rad session.  I thought there was NO way I'd be able to swallow while laying there, and that my throat would surely close.  Luckily, none of that happened.  The last 2 weeks of rads was tough and I had to stop mid way through to rinse and spit, but the techs were AMAZING and would stop, help me up, let me do what I needed to, and then settle me back in to finish.  Sending lots of ((HUGS)) your way.  You CAN do this!  I promise!!

granmudder

Hi Shell
I am my hubbys

Hi Shell

I am my hubbys caregiver He lso had surgery first.... he had the surgery n the 8th of April.. he opted to wait untill the 2nd of July to start radiation as our daughter got married on the 12th of July and he wanted to be well enough tobe there.. He was a little swollen and had a 5 inch gash so painful .....it is scary i wish i could hold your hand ...talk to the drs about your fears they are great at putting them at rest.... hang in xo

phrannie51

I've read what everyone else

has said, and Yup....it's true!  We all went into radiation with a list of "what if's"......radiation is scary.  My list was long..."what if I'm claustrophobic and just don't know it?"  "What if I feel like I'm going to throw up?"  "What if I get an instant case of the runs?"..... I'm a bona-fide worry wort, so my mental list had the possibility of being endless.... but they do take very good care of you.  Like Matt, I took Lorazepam every day before rads.....and basically dozed through that 20 minutes.  Hubby would take me home, and I'd nap for a couple of hours and all was well.

The simulation was interesting....and it felt like a facial to me.

p

Bart T

BRING YOUR BRAIN TO A DIFFERENT PLACE

Your fear is very real, but the likelihood of anything like that happening is zero. I was terrified of something like that happening to me, and I didn’t have even a hint of how claustrophobic I was until I went for the fitting of my mask. I don’t know if you’ll need to have it, but in addition to the mask, I had a stick type of device stuck into my mouth to keep my tongue in position, and plastic molds over my teeth, so swallowing was almost impossible. I convinced myself that I was going to vomit and choke to death on my vomit, or if I was lucky, I would just choke to death on my saliva. 

I was told I could be given tranquilizers if I wanted, but I really wanted to avoid drugs as much as possible. The hospital had a complementary medicine department where I went for a hypnotherapy session. It helped a lot. I made it through all 30 sessions without dying even once. A key element of the hypnotherapy was to focus on some place or scene that you found calming and relaxing, and to relax fully while visualizing yourself in that place. To a large extent it worked. I would go into the session nervous, and slowly my mind would drift away to a happier place (for me, it the was bike course of the Lake Placid Ironman race). I could picture myself flying down a mountain road, as one with my bicycle, and after a few minutes, I swore I felt the wind in my face. The noises of the machine as it shifted position would bring me back to reality for a few seconds, and each time it did, it served as a reminder that I was that much closer to getting out of the machine.

 I still hate and fear the machine, and get the creeps thinking about it, but this technique enabled me to get through it without drugs or incident. Only during one session, I did get a bit un-nerved, and raised my hand and they stopped, took me out of the mask, and allowed me to regain my composure before resuming treatment.

 You might look into the hypnotherapy thing, or some type of meditation thing, or if you’re not uncomfortable with drugs, go the tranquilizer route. Whichever way you go, bottom line is you’re guaranteed not to have your throat close up. Good luck. I’m sure you’ll do what you have to do and get through it. 

Shell_7801

CivilMatt said:

they won't let you choke

Shell,

I never liked mask time, but by taking 1 Lorazpam before treatment I came to find it interesting.  Also,  I had some oldies tunes to listen to.

Once, just as the techs left the room I threw my hands up and asked for a do over.  They  are very understanding and let me up to rinse and spit and get ready all over again.  Mind you this was one of my last weeks and I was at my worst.

Some pray, others count or dream.  It is a whole procedure you customize to yourself.

Good luck,

Matt

Which Oldie?

Which oldie was your favorite?  Ok, I'm slowly believing all of you.  I trust no one else.  My nurses were so nice and sweet but I didn't trust them at all because although they may be highly educated in what they know, they have never felt or experienced any of this.  All of you have and that's something I can trust.

 

My favorite oldies are Bob Segar and Patsy Cline.

 

Shell

Shell_7801

Skiffin16 said:

One Day at a Time..

You just got to take it as it comes... Some days are good, some not so much.

As mentioned, they will be checking you every day. 

If things got really bad, and they were worried, you'd get a PEG. I didn't have one, my throat wasn't swollen, just sore. So I switched over to primarily liquids.., Ensure and such... a few sliced peaches in syrup that could easily slide down... You want to keep the swallower working good too.

John

Thanks John

You're right about having to take it as it comes.  I'm so thankful you are here for people like me.

Shell_7801

ratface said:

"What do I do when it does" It won't!

Hi Shell

 

Your throat will not close shut, It won't happen. You do not have to plan for this. The technicians are wonderful at what they do and take great care in preserving your safety. You will get through radiation without incident, guaranteed! When you woke up from surgery you had been under anesthesia. It is quite common to see any manner of demons while recovering from these effects. Radiation will not close your throat shut, period! This is a different event and you cannot connect the two.  Put this fear to rest today. That said this is a good time to ask for help, I was on mild anti depressents the whole time I was in treatment. They are not for everyone but I needed them. My mind worked similar to yours and some fears just crept in. The medication kept them under control. Your next steps while fearful are all doable and you can do this. Stay here and ask questions when needed. You will find great support here. Welcome to our community.

 

 

Ratface

I believe you.

And I'm ready for that anti depressent for sure.  My thoughts are not the same, or should I say my reaction to my thoughts are not the same.  This tells me I need some help.

Shell

Shell_7801

TracyLynn72 said:

((HUGS))

I feared the same thing.  I had two surgeries and was in rads within 6 weeks.  I was so swollen and couldn't really lay flat without gagging.  I had to breathe deep, pray, and let my mind only think happy thoughts through each rad session.  I thought there was NO way I'd be able to swallow while laying there, and that my throat would surely close.  Luckily, none of that happened.  The last 2 weeks of rads was tough and I had to stop mid way through to rinse and spit, but the techs were AMAZING and would stop, help me up, let me do what I needed to, and then settle me back in to finish.  Sending lots of ((HUGS)) your way.  You CAN do this!  I promise!!

I will take that HUG!

You know exactly what I'm talking about!!  Thank you for responding.  It means so much.

Shell

Shell_7801

granmudder said:

Hi Shell
I am my hubbys

Hi Shell

I am my hubbys caregiver He lso had surgery first.... he had the surgery n the 8th of April.. he opted to wait untill the 2nd of July to start radiation as our daughter got married on the 12th of July and he wanted to be well enough tobe there.. He was a little swollen and had a 5 inch gash so painful .....it is scary i wish i could hold your hand ...talk to the drs about your fears they are great at putting them at rest.... hang in xo

Wedding

I'm glad he got to go to the wedding!!  I know how he feels, my daughter is due with our second grand child on October 18th.  I'll be sick but I'll be there.

 

Shell

Shell_7801

phrannie51 said:

I've read what everyone else

has said, and Yup....it's true!  We all went into radiation with a list of "what if's"......radiation is scary.  My list was long..."what if I'm claustrophobic and just don't know it?"  "What if I feel like I'm going to throw up?"  "What if I get an instant case of the runs?"..... I'm a bona-fide worry wort, so my mental list had the possibility of being endless.... but they do take very good care of you.  Like Matt, I took Lorazepam every day before rads.....and basically dozed through that 20 minutes.  Hubby would take me home, and I'd nap for a couple of hours and all was well.

The simulation was interesting....and it felt like a facial to me.

p

P

I just adore you!

Ok, I might have the runs all over the table, but will definitly not die from my throat closing.  I can live with that.

 

Shell

Shell_7801

Guzzle said:

rads etc

I had same op and started treatment 5 weeks later. They will monitor you v. Closely. They wont start unless they think you are ready. Good luck. Still chuckling about your joke to Polish aunt. G.

Polish Aunts

These women are a dying breed.  I need a standup show just about things they say!  So my doctors at the Mayo Clinic told me I did NOT have the HPV virus.  I was so upset to hear this and when all the progress reports were relayed to everyone, the aunts conversation went something like this:

"What do you mean she is upset she does NOT have a STD??!"

"Well this could mean her survival rate past 5 years is better if you have this strain of the STD"

"Well surely she knows someone with an STD, why can't she just go get it??!!!"

 

Shell

Shell_7801

Bart T said:

BRING YOUR BRAIN TO A DIFFERENT PLACE

Your fear is very real, but the likelihood of anything like that happening is zero. I was terrified of something like that happening to me, and I didn’t have even a hint of how claustrophobic I was until I went for the fitting of my mask. I don’t know if you’ll need to have it, but in addition to the mask, I had a stick type of device stuck into my mouth to keep my tongue in position, and plastic molds over my teeth, so swallowing was almost impossible. I convinced myself that I was going to vomit and choke to death on my vomit, or if I was lucky, I would just choke to death on my saliva. 

I was told I could be given tranquilizers if I wanted, but I really wanted to avoid drugs as much as possible. The hospital had a complementary medicine department where I went for a hypnotherapy session. It helped a lot. I made it through all 30 sessions without dying even once. A key element of the hypnotherapy was to focus on some place or scene that you found calming and relaxing, and to relax fully while visualizing yourself in that place. To a large extent it worked. I would go into the session nervous, and slowly my mind would drift away to a happier place (for me, it the was bike course of the Lake Placid Ironman race). I could picture myself flying down a mountain road, as one with my bicycle, and after a few minutes, I swore I felt the wind in my face. The noises of the machine as it shifted position would bring me back to reality for a few seconds, and each time it did, it served as a reminder that I was that much closer to getting out of the machine.

 I still hate and fear the machine, and get the creeps thinking about it, but this technique enabled me to get through it without drugs or incident. Only during one session, I did get a bit un-nerved, and raised my hand and they stopped, took me out of the mask, and allowed me to regain my composure before resuming treatment.

 You might look into the hypnotherapy thing, or some type of meditation thing, or if you’re not uncomfortable with drugs, go the tranquilizer route. Whichever way you go, bottom line is you’re guaranteed not to have your throat close up. Good luck. I’m sure you’ll do what you have to do and get through it. 

Thanks Bart

You are correct, I am willing to do whatever it takes to get through this.  

A bike race at the Lake Placid Ironman Race sounds like quite the happy place!  Mine might be casting a line into the lake hoping for a fish!  

All of you are my hero's.  Not because you endured and survived this wicked thing but because after it was all said and done you stayed here on this forum to help people like me.  

Thank you

 

shell

Guzzle

Shell_7801 said:

Thanks Bart

You are correct, I am willing to do whatever it takes to get through this.  

A bike race at the Lake Placid Ironman Race sounds like quite the happy place!  Mine might be casting a line into the lake hoping for a fish!  

All of you are my hero's.  Not because you endured and survived this wicked thing but because after it was all said and done you stayed here on this forum to help people like me.  

Thank you

 

shell

tried this recently. I am a sceptic but it was v. Relaxing. Massage also. Bart u back on the bike?

Hondo

Hi Shell

 

Don’t worry we are all afraid at times when going through this, just ask as many question as you can to the doctor or nurse attending you. Let them know of your fears and how you are feeling, a good doctor will sit down with you and explain the treatment and will be checking on you every day. Also for me when I am afraid I always pray, it gives me the strength and faith I need that I will get through this too.

 

Tim Hondo

Jeff2159

Shell

In 6 months you will be starting to feel better physically and mentally and maybe laugh at some of your worries. Now remember you could have to do chemo the same time as the radiation-thats fun or wake up from your surgery and have a trach tube in your neck. Now you want to talk about feeling like you are choking. Everyone has their limits to the pain and mental anguish and we all go through the ups and downs. One way I get through (barely as I have been through hell and back) is that no matter how bad things are for you, there is someone else worse off and I see this all the time weekly at city of hope. I just pray to God and give thanks for the things that I have and that I'm able to do

good luck

Jeff

 

wmc

Shell_7801 said:

Thanks Bart

You are correct, I am willing to do whatever it takes to get through this.  

A bike race at the Lake Placid Ironman Race sounds like quite the happy place!  Mine might be casting a line into the lake hoping for a fish!  

All of you are my hero's.  Not because you endured and survived this wicked thing but because after it was all said and done you stayed here on this forum to help people like me.  

Thank you

 

shell

You know I never had RAD's

I never had to have chemo or RAD's so I won't try to exp[lain it. I will say what my Mother always said,"God will not give you more than you can handle". I think he pushes a little hard at times, but you will handle it. 

Think about this: In a few months you will be here with the rest of us helping someone new go down the valley and fight the beast, just like you did.

Be at peace

Bill