it all begins; update

mokus

Thank you to everyone for your support and information.  I am not very good at keeping up with things like this and socialization in genera, but I want everyone to know how appreciative I am of what I have found in this community.

 

That being said, an update is in order.  Finally, I go in at 6am to have my PEG tube done.  On Thursday I will go have my make fitted/manufactured... There has been no further talk about a trach tube that had me so worried.  Dunno what to make of that other than to say that for now, it has taken a lot of pressure from my shoulders.  I do my first chemo on Aug 4th and radiation treatments the following week.

 

Been reading the forums and getting info on what salves, lotions, rinses, nasal sprays etc will benefit me during tx, and stocking up pre-battle as much as possible.

 

Will try to drop by and update here depending on how I feel each day.

 

Thank you again,  EVERYONE!!

robswife87

Good Luck

This treatment sucks big time, but you shall make it through the tunnel and see the light. Keep up with the Superthread for all the great information. 

Come here with any and all questions on how we can make it easier for you in this battle. Prayers going up for a fast recovery for you

Sandy

debbiejeanne

mokus, I'm glad the plan is

mokus, I'm glad the plan is in place and will be started very soon.  the sooner it starts, the sooner it ends!  we will be here for you whenever you need us.  i will be praying for you too.  put on your battle gear and look forward to the finish.  you can do this.  we will be on the sidelines cheering you on.

God bless you,

dj

CivilMatt

and it begins

Mokus,

The best advice I got and the easiest was to start drinking water and swallowing, swallowing, swallowing. It doesn’t sound like much but it goes a long way to helping you get through treatments.

Good luck,

Matt

wmc

Time to start....

It's good you are starting the Tx. Always know you are not alone in this and ask anytime you have questions.

The best advice has already been given by Matt, Drink and swallow. Stay hydrated and swallow often even if just small sips. You can really forget how to swallow, sounds crazy but you can and it does not take that long if you get any swelling in the throat. Thoughts and prayers always..........

Bill

mokus

wmc said:

Time to start....

It's good you are starting the Tx. Always know you are not alone in this and ask anytime you have questions.

The best advice has already been given by Matt, Drink and swallow. Stay hydrated and swallow often even if just small sips. You can really forget how to swallow, sounds crazy but you can and it does not take that long if you get any swelling in the throat. Thoughts and prayers always..........

Bill

Time to start

Thank you for the tips and prayers.  Got PEG  today.  Some residual pain taken care of by pain meds.  Fitting for mask tomorrow.  Could you please tell me if there are any breathing issues beause of the radiation?  It seems I have a lot of open time between now and start of radiation.  I am still worried they are going to suddenly call me in between and say I need to be scheduled for trach even though it has not been mentioned since day of biopsy.  I don't really have any breathing issues now but the epigglotis is the target,  I dont know if throat swelling is going to prevent passage of air..The surgeon today said my breathing and lungs are clear. I wish I did not have these OCD tendencies and could just relax and accept what comes.

 

thank you again for your help

CivilMatt

mokus said:

Time to start

Thank you for the tips and prayers.  Got PEG  today.  Some residual pain taken care of by pain meds.  Fitting for mask tomorrow.  Could you please tell me if there are any breathing issues beause of the radiation?  It seems I have a lot of open time between now and start of radiation.  I am still worried they are going to suddenly call me in between and say I need to be scheduled for trach even though it has not been mentioned since day of biopsy.  I don't really have any breathing issues now but the epigglotis is the target,  I dont know if throat swelling is going to prevent passage of air..The surgeon today said my breathing and lungs are clear. I wish I did not have these OCD tendencies and could just relax and accept what comes.

 

thank you again for your help

1, 2, 3

mokus,

The mask fitting tomorrow will be like a warm facial. I hope they give you eyeholes, that way you can look around.

Your RAD technicians will help you every step of the way. Most of us had fantastic RAD technicians.

You might think about getting some music CDs to listen to or you can count, pray, dream or a whole host of other things.

As far as not being able to breathe, they will not let you undergo treatment if you cannot breathe. It becomes routine and all of us have our own criteria for set up.  Once, when my throat was at its worst I had to stop everything, take the mask off, get up and get a drink of water and start all over, but I made it

Actually, for me it was one Lorazepam 30 minutes before treatment and the healthy swish and swallow of magic mouthwash in the parking lot minutes before treatment. I was downright indestructible then. 

Matt

mokus

CivilMatt said:

1, 2, 3

mokus,

The mask fitting tomorrow will be like a warm facial. I hope they give you eyeholes, that way you can look around.

Your RAD technicians will help you every step of the way. Most of us had fantastic RAD technicians.

You might think about getting some music CDs to listen to or you can count, pray, dream or a whole host of other things.

As far as not being able to breathe, they will not let you undergo treatment if you cannot breathe. It becomes routine and all of us have our own criteria for set up.  Once, when my throat was at its worst I had to stop everything, take the mask off, get up and get a drink of water and start all over, but I made it

Actually, for me it was one Lorazepam 30 minutes before treatment and the healthy swish and swallow of magic mouthwash in the parking lot minutes before treatment. I was downright indestructible then. 

Matt

1,2,3

thank you matt.  I feel like an insecure little child running in here all the time for somehing to hold onto, but maybe thats normal.  Trying to find some way to sleep now.  tyvm

phrannie51

mokus said:

1,2,3

thank you matt.  I feel like an insecure little child running in here all the time for somehing to hold onto, but maybe thats normal.  Trying to find some way to sleep now.  tyvm

Mokus....

Do not feel like an insecure child.....there isn't a one of us who was sitting in the seat you are in now, who wasn't scared and wondering what was going to happen next.  You run in here any and everytime you feel you need help!!!  That's what we're here for.  I was here every day when I started treatment, picking brains, asking questions, and letting the people here carry me....I was scared to death. 

Since they are doing the mask today, and you haven't heard a peep about a trache, then I think you can put that fear to bed.  Chances are that your Dr. originally mentioned the trache, because he was bringing up all possibilities....and that is one possibility that didn't come to pass.  Instead of fretting about this, you might just ask the Dr.....and take all reason to worry off your shoulders.

This mask fitting is actually kind of pleasant....like Matt said, a warm facial. 

And remember....we're here to tuck you under our wings, take your hand....and help you get through this....never ever hesitate to ask questions, vent fear or frustration...no topic is off limits.

p

donfoo

phrannie51 said:

Mokus....

Do not feel like an insecure child.....there isn't a one of us who was sitting in the seat you are in now, who wasn't scared and wondering what was going to happen next.  You run in here any and everytime you feel you need help!!!  That's what we're here for.  I was here every day when I started treatment, picking brains, asking questions, and letting the people here carry me....I was scared to death. 

Since they are doing the mask today, and you haven't heard a peep about a trache, then I think you can put that fear to bed.  Chances are that your Dr. originally mentioned the trache, because he was bringing up all possibilities....and that is one possibility that didn't come to pass.  Instead of fretting about this, you might just ask the Dr.....and take all reason to worry off your shoulders.

This mask fitting is actually kind of pleasant....like Matt said, a warm facial. 

And remember....we're here to tuck you under our wings, take your hand....and help you get through this....never ever hesitate to ask questions, vent fear or frustration...no topic is off limits.

p

humm.... topics

who wears underwear? LOL

mokus

phrannie51 said:

Mokus....

Do not feel like an insecure child.....there isn't a one of us who was sitting in the seat you are in now, who wasn't scared and wondering what was going to happen next.  You run in here any and everytime you feel you need help!!!  That's what we're here for.  I was here every day when I started treatment, picking brains, asking questions, and letting the people here carry me....I was scared to death. 

Since they are doing the mask today, and you haven't heard a peep about a trache, then I think you can put that fear to bed.  Chances are that your Dr. originally mentioned the trache, because he was bringing up all possibilities....and that is one possibility that didn't come to pass.  Instead of fretting about this, you might just ask the Dr.....and take all reason to worry off your shoulders.

This mask fitting is actually kind of pleasant....like Matt said, a warm facial. 

And remember....we're here to tuck you under our wings, take your hand....and help you get through this....never ever hesitate to ask questions, vent fear or frustration...no topic is off limits.

p

the mask

TYVM.  The mask was a breeze and I got more information about my schedule for treatment

 

phrannie51

donfoo said:

humm.... topics

who wears underwear? LOL

LOL Don....

Leave it to you to come up with a topic no one has asked before!!!

p