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Very discouraged

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

So discouraged after reading post of what is it like when treatment ends. I honestly do not see how I can get through this.  I have only 8 rad treatments done so far, 1 failed g-tube surgery, 2 failed attemts at replacing it (it was closed up).  My mouth sores are so bad they are now on the back of my throat and both sides of my tongue that R/O is starting a new treatment plan on me Monday (missed all but one treatment this week due to the g-tube fiasco and the hyper reactive response to radiation).  Have lost 5 Lbs since Monday;s surgery and I honestly do not know how I can manage the mouth pain.

 I manage to get cream of wheat down in the am, then a protein/fruit smoothie with glutamine for lunch, some mashed thinned out sweet potatoes  and muscle milk for dinner.  It is very painful to do any of it and I take Magic Mouthwash a little while before I eat or drink and have been using the Mugard since Thursday, but cannot see any improvement. I rinse with baking soda salt and water frequently and especially after eating.  Have ordered the boost vhc from amazon but it won't come until after Thanksgiving.

I stopped taking Percocet after surgery Wed. and now take Tylenol or Nap. Sodium which sometimes burns if it gets stuck.  I may have to go back to the Percocet just for the mouth pain now but do not want to as it makes me feel worse.

I think I have read the super thread several times and most comments about how to do this and nothing seems to be working right now.  Really do not know how any of you tolerated the painful sores.  I guess I will have to go into a drug induced fog to get through it but that is not what I want to do, nor do I think it is healthy for anyone's body.  Going to try a meditatin tape and see how that goes.

 

Peace, 

PJ

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

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

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

PJ

KTeacher
Posts: 910
Joined: Jan 2011

We all did it, you can too.  Definitely not a walk in the park.  Cream of wheat was my go to food.  Drank alot of Boost and smoothies.  I couldn't count down until I was on the last week.  Don't want to discourage you but there is light at the end of the tunnel, sometimes the tunnel is longer than we think.

phrannie51's picture
phrannie51
Posts: 3672
Joined: Mar 2012

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's picture
PJ47
Posts: 332
Joined: Sep 2013

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 

 

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

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.

jim and i's picture
jim and i
Posts: 1597
Joined: May 2011

This is my prayer as well.

Debbie

TracyLynn72's picture
TracyLynn72
Posts: 677
Joined: May 2013

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! 

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

PJ,

Whatever steps you need to take to manage the side effects, take them!

If it is easier to drink your meals than eat them, then throw away your silverware and buy a straw.

If you need pain meds, take what you need, do not tough it out.  If the fog is worse than the pain then back off a little.  If you sleep, then sleep, there is no right amount.

As mean as I sound, you need to work the problems find a way to cope, work with your caregiver, nurses, doctors (your team).

Don’t get dehydrated!  Dehydration may cause a ton of problems.

Your body is just trying to protect you, but it should give in to treatments a little at a time.  Like was said, take it slow, hour by hour.  Exploit all that helps (meds, sleep, TV, music, etc.).  I have every confidence that you will make it through successfully.  Tracylynn (H&N) was once down   for the count, but she picked herself up and finished treatments.  You can too!

Hang in there,

Matt

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

Thanks for the confidence and I will take pain meds but not until it is unbearable as I need to drive and get some exercise for my physical and mental health.  I probably am as stubborn and determined as most on this site, so that should serve me well.  Happy T day!

PJ

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

to read of the pain you're in...my advice is to ask for a liquid pain medicine, I took oxycodin, don't worry if you sleep a lot, your body needs the rest,especially since you've had a few more bumps than most.

Praying for you, one baby step at a time

 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Here's the short version....

You do what ever you have to do to get through with the least amount of pain and discomfort.

Food (calories) aren't consumed because it tastes good.., it's purely survival, same with fluids..., definitely the taste of dirty sweat socks isn't appealing, but it's hydration...

If it's painful, use your meds, or get stronger ones... If it's unbearable, get the PEG.

In the grand scheme of things, the years you've been here, and future years to come..., a few months isn't nothing.

You'll get through, you'll find your power...

John

just2ez2004's picture
just2ez2004
Posts: 9
Joined: Nov 2013

If you mean water than "the taste of dirty swet socks" is right on the mark!! Most people don't/can't understand how water can "taste" so bad.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Yes, I was referring to water....

Water is the only thing that seems to truly quench my thirst... So not having the fresh taste of water was terrible during treatment. The water always tasted bad, at best it tasted like sweat...., LOL.

But usually it tasted more like old dirty sweat socks...

JG

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

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's picture
debbiejeanne
Posts: 2365
Joined: Jan 2010

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

hwt's picture
hwt
Posts: 1888
Joined: Jun 2012

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.

Crazymom's picture
Crazymom
Posts: 295
Joined: Nov 2011

Mine were not bad until the end.  They lasted for a a few weeks after I finished the rads.  I had pain pills for the other pain, but nothing seemed to work for the mouth problems. After the rads they eventually went away.  I lost lots of weight.  Unfortunately I have gained it back!.  Hang in there...it is terribly painful at the stage you are at, but believe me it will get better.  It may be a few more weeks before it gets better.  It is doable....you can do it......just take a day at a time.   Ann  prayers your way...

jim and i's picture
jim and i
Posts: 1597
Joined: May 2011

So sorry you are suffering so much. I don't think I have heard of HN patient taking percocet. During treatment Jim took a liquid pain killer. I can't remember the name. It made him goofy and he wandered outside naked a couple of times. He now takes liquid Hydrocodone/Acetometophen for pain. It doesn't effect him as the other pain med did. Most of the people on here had no problem getting off the pain meds after treatment so do not worry about that. Jim takes pain meds  now because he is one of the few whose cancer matastisized to his lungs; his original site was base of tongue stage four, no surgery. I know this is not good for the body but neither is radiation or chemo or cancer. A book you might be interested in is "The complete Cancer Cleanse" there is a wonderful story of how a man cleansed his body after extensive treatment of the toxins and good nutritional advice for after cancer. The author Cheri Calbon is also know as The Juice Lady.  Don't give up.

Debbie

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

I first was taking hydrocodone after my head and neck surgery.  It did not begin to handle the pain but took it down from a 10 to an 8 maybe and only lasted about 3 hours, then after the feeding tube surgery, they gave me Percocet which I too only i pill and it lasted 6-8 hours and kept me fairly comfortable following the surgery but nothing really helped the mouth pain except MMouthwas q 2 hrs.  So I did get a script for Roxycodone liquid but will not use it unless the pain has become intolerable as I do not want to scare my neighbors by wandering about naked.  They would probable tell me to move!

Viilik70's picture
Viilik70
Posts: 57
Joined: May 2012

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 : )

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

I've often thought if I had to go through what Ruben did, I couldn't. I am SO thankful he completed his treatment, as difficult as it was, and now we're on the other side, over the hurdle. He endured so much, but when asked if he would do it over again, knowing and experiencing what he did, he always says "Yes, without a doubt."

Life is not the same. Everyday is different. Everyone is different. BUT, he's alive and is happy to be here. One day at a time. There IS light at the end of the tunnel. I am in awe of the women and men on this site who are true warriors. God Bless us all.

Sending hugs, love and prayers your way.  God Blessings are coming your way.

Jude

Hondo's picture
Hondo
Posts: 5722
Joined: Apr 2009

 

We all have some very hard times to go through in dealing with this Crap. Just keep thinking in your head it will soon be over and you will start to heal. I was up late one night and just started wrighting about all I went through in dealing with cancer. If you like to read it just go to my web-site  http://www.restoringgodstruth.com/prison/ hope it helps you in dealing with your cancer.

 

God Bless

Hondo

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