Very discouraged

It's not easy getting through it, and I'm sorry that you seem to have had some additional road blocks on the way. Keep focused on the light at the end of the tunnel and all of the great things in life that you will enjoy once you get through this.

One day (sometimes one hour) at a time...and always remember that there is a season for everything, this too shall end.

Jamie

You're getting it worse than many....the whole PEG tube thing was a big mess (wasn't it your Dr. who didn't want to put the tube in through the troat because of the possibility of pulling cancer cells down with it?).....If it was you, remember none of us ever heard that before....I'm thinking that once you heal from the "attemps" at outside delivery of the tube, you might want to rehash this topic with the Dr. and get a regular tube that has a disk on it, which is placed via the throat so you can get you nutrition and hydration via it, and just concentrate on using your swallower for swallowing something everyday without have to suffer through trying to get everything down that way. 

Don't give up.....getting discouraged now and again is common.....but keep that one day at a time in mind.....one step in front of the other....concentrate only on what is in front of you at this moment, and don't start looking ahead.....it's a good habit to learn, and one that will pay off long after treatment is over and regular life comes back into focus.  YOU WILL GET THROUGH THIS.....that is a fact....a promise.....BELIEVE!!

p

PJ47 said:

thank you all for your comments

I guess the thread about how long AFTER treatment people are suffering really got to me as I am not even 1/3 of the way thru treatment.  The are reducing the amt from 33 to 28 treatments I think.    

I fully expected it to get bad by the 3rd or 4th week which would have been hard enough but so early you have question how one can possible sustain the pain for that long of a period.  The tunnel looks like a very long one for me.  My surgeon who removed the tumor and did the neck dissection did not even think I needed rad to my tongue base as all margins were very clear 2mm out, so I went into it questioning the necessity in the first place.  

The general surgeon locally who did the lap gastrostomy tube now wants me to go to an interventional radiologist and have him place one in the same spot but not until I heal from this mess (about 2 weeks).  Meanwhile, I just keep numbing and trying to get the calories down.

After meditation tried some yoga and boy did the stomach hurt where they had the tube.  Supposedly it is stitched up to the abdominal wall.  I am serouisly thinking of asking for an ultrasound to ensure it is in the right place before I let them cut on me again.  

Took a Tylenol and will go out to a Contra dance just to get distracted from the pain.  Of course I will have my MM with me and paper towels at all times.

 

PJ 

 

Dear Lord, we ask that You touch PJ with Your hands of healing and that You guide her doctors in their decisions. Keep PJ in Your loving arms of comfort and provide the strength of a strong tree that sways in the stong wind but does not break. We ask in the name of Jesus and thank You for hearing our prayers. Amen.

PJ47 said:

thank you all for your comments

I guess the thread about how long AFTER treatment people are suffering really got to me as I am not even 1/3 of the way thru treatment.  The are reducing the amt from 33 to 28 treatments I think.    

I fully expected it to get bad by the 3rd or 4th week which would have been hard enough but so early you have question how one can possible sustain the pain for that long of a period.  The tunnel looks like a very long one for me.  My surgeon who removed the tumor and did the neck dissection did not even think I needed rad to my tongue base as all margins were very clear 2mm out, so I went into it questioning the necessity in the first place.  

The general surgeon locally who did the lap gastrostomy tube now wants me to go to an interventional radiologist and have him place one in the same spot but not until I heal from this mess (about 2 weeks).  Meanwhile, I just keep numbing and trying to get the calories down.

After meditation tried some yoga and boy did the stomach hurt where they had the tube.  Supposedly it is stitched up to the abdominal wall.  I am serouisly thinking of asking for an ultrasound to ensure it is in the right place before I let them cut on me again.  

Took a Tylenol and will go out to a Contra dance just to get distracted from the pain.  Of course I will have my MM with me and paper towels at all times.

 

PJ 

 

I hit a wall with just 6 treatments left.  I told my hubby, the doctors and everyone that I WAS DONE!!!  This wonderful CSN family encouraged me and pushed me through the rest of the way.  I agree 110% with Phrannie.  Many of us had the PEG down the throat with minimal issues.  That darn thing saved my life as my rad onc didn't want me to "bother with one" after I had thrown up for 7 days and couldn't keep water down.  I was so sick I missed an entire week of rads. Minus the PEG issue...I had HORRIBLE side effects and problems with my rads.  They started on day TWO with a clogged salivary gland and I was rushed into a CT scan.  I feel for you...I truly do, and I am so sorry you're having so much pain.  I rinsed all day long with salt/soda, magic mouthwash (went through 4 bottles) and I even rinsed with liquid hydrocodone (after the mm!!!!) to numb me completely up.  It was horrible and it seems like you are trapped in radiaiton hell...but I promise to you you can do this.  You can survive it.  I will be praying for you! 

I didn't have a tube so I can't answer about that - I can say that I too had sores in mouth very early on in treatment- mine was caused by thrush and not the radiation early on- but what did I know? wasn't lucky enough to know about this forum. Some things that worked for me: not sure what the tube is for but it seems you are still swallowing food in some form- for me soggy French toast worked well, chicken broth with pastina, instant maple and brown sugar oatmeal, green tea with some honey, for me the trick with the magic mouth wash was to  drink it swish it around and eat immediately after as fast as I could Before i ate or drank anything- There were also some canned soups that worked well with pasta and broth. I didn't like the percocets, but when I was where you are at right now I was taking 5 or 6 a day and when I would eat I would add one to a couple of tea spoons of warm water and gargle with that as well for as long as I could- as I progressed the percosets  didn't help so they put me ona phentanal patch(not sure if I am spelling it correctly) and even that with the percocets didn't relieve the pain fully. But the pain meds did seem to make the days fly buy. Soon as my treatments were over I discontinued the pain meds- I don't advise you to do that- your doctors will wein you off them so don't worry about being a drug addict. I lost 40 lbs during my treatment and narowly missed needing a feeding tube and most of the weight I lost was in the last two weeks of treatment. Everyone here got through this crap and you will too. Will it suck? Yes. Biut you will survive - I am almost 1 year 12/10/12 was my last treatment- I hope you get through your treatment with no more complications. 

Stay strong and positive- stay hydrated - make sure you get high amounts of protein- and you keep your caloric intake high as close as 2000 calories a day as you can - buy stock in ensure and we will be proud to call you a member of the survivors club. Be strong my fellow warrior and good luck

Ralph

debbiejeanne said:

PJ, I'm so very sorry u r n

PJ, I'm so very sorry u r n so much pain and that you've had so many set backs with the tube fiassco.  Please don't give up, it will get better.  Poor Tracy was where you are now.  She had her mnd made up SHE WAS DONE!  we all felt bad for her and gave her the encouragement she needed to continue on her journey.  Today, she is very thankful she did even tho she still had to suffer thru the last of her tx.  We're very thankful she didn't give up also.  Yes, it is an extremely rough road and you've even hit extra pot holes, but PJ, it will get better, I promise.  Like the others said, stay up on the pain meds and if they aren't working, ask for stronger ones.  If u need to sleep, then sleep.  Do whatever it takes to get u thru each day.  Come here and vent, complain, cry, whatever, we will be here for you.  We may even cry with you, we do that sometimes.  We truly feel your pain and truly care and want to help you thru this tough time.  So, say prayers, stay ahead of the pain and NEVER GIVE UP!  We will be here to cheer u on.  We are also saying prayers for you.  Prayers really do help.  Hang in there and be strong.  We are with you.

God bless you,

dj

I got hit week one with sores on my lips that remained thru tx. As soon as I finished tx they started to heal. I don't wish them on anyone as I recall the pain. Somehow got thru it, just like you will. I was unable to do the baking soda or salt as it burned too bad. I loaded my lips w/Aquaphor and to this day, still do.

spector551 said:

A small prayer for you...

Dear Lord, we ask that You touch PJ with Your hands of healing and that You guide her doctors in their decisions. Keep PJ in Your loving arms of comfort and provide the strength of a strong tree that sways in the stong wind but does not break. We ask in the name of Jesus and thank You for hearing our prayers. Amen.

This is my prayer as well.

Debbie

in five years you will remember more of the milestone of the first great thing you were able to eat after all this! Mine was a beef & cheddar from Arby's. You will make it and you will truly enjoy your food more than you ever have because you will definitely know how it is to do without! God bless and just pray for patience to get through this. God is a great healer and He's healed many here and He will you to, but you have to show a little faith in Him also : )