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Not what I want to hear...

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Everyone following my dad's progress kind of knows where he is.  I was talking earlier about him not wanting to eat and that is the biggest obstacle.  Now there is talk of a feeding tube.  I will probably know more tomorrow, but it is somewhat upsetting to hear that it's still early sort of. I know that most of you say, it's nothing and vital.  I just need some words of encouragement to make us all feel a little better if you have anything to add.  TracyLynn your posts about that really seem positive, I hope my dad does as well with it if he has to have one. I'm also going to read the PEG post, but I'm not sure if that is the type he will be getting, I don't know.

Thanks in advance...and please keep the prayers coming for dad, mom, and us girls (3 of us).

Cherie

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

Hi Cherie.  As you know, my brother is just  couple of days ahead of your dad.  He got the tube in prior to treatment.  He is using it.  I may have told you that getting it in was no big deal, but he did have a couple of terrible days of cramping.  No one warned him of this, and when he left the hospital they only told him to take a Tylenol for pain.  What a joke!  He started to use the tube last week.  He has named his tube "Seymour", ("Feed me Seymour!", from "Little Shop of Horrors") and now says, "Seymour is my friend".  Don't worry about the peg.  I would be more worried about malnutrition and dehydration!  Wish your dad well for me.

~Shawn~

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks Shawn, I felt better about it when it wasn't a reality. I do know its necessary though. I was defintely worried about dad not eating, I know he will get what he needs.  Thanks for trying to cheer me up, Seymour is funny nickname. I used to love that movie!

phrannie51's picture
phrannie51
Posts: 4003
Joined: Mar 2012

They didn't know if I was going to need it for sure, but because I started at 97 lbs, they were concerned about weight loss....The actual putting the tube in....the surgery part is no big deal....they use the same drug for a PEG as they do for a colonoscopy...semi-twilight.  I had pretty severe cramping the first day, but by day three it was all but gone.  There are lots of people here, tho....who had only light cramping to none at all really....I was lucky, I was already in the hospital because they'd punctured my lung putting in the port.  When the cramps started I asked for something STRONG and got diladid Smile....

The thing with the PEG is....he doesn't have to "taste" anything if every thing tastes bad.....he can eat what he wants and supplement with the tube....if his throat gets too sore for food, he can reserve swallowing for water, and pump everything else via the tube.  It's a win win.....and up to his discresion how much or little he wants to use it. 

I didn't even start using mine till after radiation.....but boy oh boy was I glad I had it then.  I won't even tell you guys what I call mine....LOLOLOLOL

p

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Phrannie,

I have to know, what did you used to call yours?

CivilMatt's picture
CivilMatt
Posts: 3263
Joined: May 2012

Cherie,

If he needs the PEG, so be it.  It is an in and out thing.  When I was using one  I would get all set-up in my recliner, hang a few cans of Jevity on fast drip and go to sleep.  As P51 said it makes taking meds easy also.

Remind your Dad that he must keep swallowing and drinking water, it is helpful in the long run.

In the whole scheme of treatments the PEG is just another coping tool, with the power to put your Dad back in charge.

Matt

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

I can't wait til he can be done with treatments and start healing... no one deserves to go through this crap. 

He is drinking a lot of liquids from what I can tell.  When I'm around I push extra fluids too.

So if he goes to the doctor today and they say he will need one will they do it that day or schedule it? I am just up in the air with everything... how long does the surgery take?

Duggie88's picture
Duggie88
Posts: 622
Joined: Feb 2010

The feeding tube is just a stepping stone. As you mentioned TracyLynn can certainly attest to how it helped her. Please stress to Dad Matt's point and have him keep swallowing. Lessons the chance of swallowing issues later on.

WOW a household with 4 females guess there wasn't much football on the non feeding TUBE on Sunday afternoons.

Take care..................T's and P's

      Jeff

 

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Jeff,

Thanks. Lol, yeah he we watch football.  We are proud Buckeyes!

Actually, I watch a lot of shows with my dad like Swamp Boys and American Pickers.  He likes stuff like that! I watch those shows with him.  River Monsters...

fishmanpa's picture
fishmanpa
Posts: 1157
Joined: Jan 2013

Hi Cherie,

I went from ringing the bell down to surgery to have a tube put in. It was no big deal. Sore for a couple days and I was hydrating and eating through the tube. Being that I couldn't take anything by mouth except water, it was a life saver. 

Truly.. don't sweat it. Your Dad will be fine and better off having it. The beauty of it is that you don't have to feel like eating to eat! AND you can talk while you're eating and not be impolite ;)~

Positive thoughts and prayers

"T"

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Thanks T! You have a great outlook on things. I"m trying to hang in there.

Cherie

TracyLynn72's picture
TracyLynn72
Posts: 756
Joined: May 2013

AND you can talk while you're eating and not be impolite ;)~

 

I told my husband this and he LOVES that saying.  He's telling everyone how I eat and talk without being rude!! HAHA  Laughing

michdjp's picture
michdjp
Posts: 206
Joined: Sep 2011

Hi Cherie 

my dad too was diagnosed with scc tonsil stage IV on 8-1-11. We finished treatment in 10-11. It was a rough treatment but we got through it.  We also did not want the peg but when someone on this site said...you'll know you need the peg when swallowing feels like glass and sure enough not far into treatment I shared a salad with my dad and the Tiny piece of lettuce I gave him felt like broken glass when he tried to swallow.  That was the last thing he ate.  He did get the peg and relied on it for nourishment and hydration for about a year.  I am thankful he had it because he got worse before he got better.  my advice during the tough days is to just be ther for him but as soon as you see a better day keep him swallowing...anything..just not to lose the function. It sounds silly but it happens.  When my dad felt better after treatment sometime around December 11, he had a lot of trouble swallowing.  We went for swallow therapy, then throat stretches and finally vital stem therapy.  He is eating most things now just not the same.  My dad at the time iif his diagnosis was healthy and strong 69 years old.  He turned 71 this year and every day I am grateful for.  This site and the wonderful people on it got me through some very tough nights it is good you are here.  My dad had two different pegs.  The second one he had was called a button because it was literally a button hole instead of the tube one.  The button was easier and less noticeable through his shirt.  

I wish your dad a speedy recovery and send you emotional support as I know it is the hardest thing to watch your dad go through this. Have faith.

michelle

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Michelle,

Thanks for all the kind words. I'm glad your dad is a survivor and healing! He sounds like a strong man! It is extremely hard and it's even harder some days just feeling helpless.  My dad is one of the greatest men alive (in his daughters eyes) he has such a kind heart and does anything for everyone, it is hard to watch him change before my eyes.  I truly feel that God is with him right now pulling him through all of this every step of the way, but I just want to see him back to normal. Sooner the better.  Thanks everyone for encouragement. I will keep everyone posted as they come. 

Cherie

TracyLynn72's picture
TracyLynn72
Posts: 756
Joined: May 2013

I really, really didn't!!  But the way I felt before getting it was horrible.  I was vomiting all the time (couldn't get any food past the nasty saliva/mucus crap) and I was terrified to go under again and get this tube.  I love it now.  It's easy to use, hasn't caused me too much discomfort and it saved my life. It was sore a little at first and the thought of USING it freaked me out...but I caught on after the first time and other than being a little boring....mealtime is no big deal!  I certainly don't want it forever, but it's been nice to have to build my strength back up.  2 weeks ago I was in misery and today I'm back at work!  I'll be praying for y'all, and I promise it wasn't anything like I had dreaded!  I honestly wish they would have done it earlier than they did (looking back now) because I could've saved myself a lot of misery.  One oncologist is set against them and one is for them.  By the time I got mine, I actually ASKED for it!  

 

 

I'm very unimaginative and usually call mine Peggy.  Or Tubey Tubular.  I told my kids it felt like an alien or something at first :)  Plus, it freaks my boss out so I love to "flash" the tube to her!!  hahaha

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Tracy,

Lol, thanks... you really put it into great perspective knowing its not as bad as imagined.  I am such a worry wart.  I worry constantly about dad and even mom cuz I know its hard for her too.  Im going to hope that I can get mom on here to read this and feel a little better if it presents itself.  Love that you can have humor about flashing your tube!

Thanks again,

Cherie

p.s. I can defintely tell you are in better spirits! Praying that continues and you heal quickly Tracy

Duggie88's picture
Duggie88
Posts: 622
Joined: Feb 2010

Back when I had my feeding tube I use to think WOW I could drink a whole bottle of whiskey and pass a breathalyzer test. Goes to show you what the sensable people think about (eating while talking) compared to what the abi-normals think about doing.

 

Just an observation

fishmanpa's picture
fishmanpa
Posts: 1157
Joined: Jan 2013

So last Saturday Marcia and I went to a party/gathering of friends. It was a musical jam party and many of my/our musician friends were there. It was an awesome time :) 
We brought a bottle of white wine. I thought I'd give it a try. Unfortunately, it wasn't to be. The first sip hit the back of my mouth and sent shivers of pain throughout my head and neck. Nope... not to be for now :(

However... we have most of that bottle left in the fridge. I'm thinking a slow drip would be doable and help clean the tube in the process ;)~

"T"

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