Hey everybody! It's been awhile...
My Dad is cancer free so far - which is great!
There is a new/old problem going on..He had such a horrible time with his PEG tube throughout treatment exactly a year ago. But to our frustration he STILL HAS his Peg. Even though he has been eating normally for months he refuses to get rid of it. I think it was so traumatic for him that now that it's stable he doesn't want change.
I have not been to the doctor with him in some time - My mother says she brings it up and the doctors hedge, then Dad says he still needs it.???
He has been to the doc twice because the tube has slipped in to low and caused problems.
I think it's psychological and strange. I'm also very sad that he is not participating in life very much...Mom's at wits end. I'm just numb.
He's the generation that won't accept counseling.
I guess I'm just venting.
Treatment was gruesome and frightening but he remained positive. Now I think he's sinking into a chair.

Hi Mariam.
I have no advice to offer but wanted to say hello. I am sorry your dad is so frightened and all of you so worn out. It's not easy for anyone. We are just past a year since mom had her surgery and things are still not the same. I know that they will never be.
Just wanted to send a hug to you and will keep you all in my thoughts.
Donna

can you or your mom, call his doctor without his knowing and speak to them about your concerns?

i would think if he is doing well that having the peg is really not that big of a deal one way or the other, if it makes him able to cope but encouraging him to let go is not wrong either and maybe by speaking to his doctor, they could do this better than someone close to him, by them saying "well, time for the peg to come out, as you seem to be doing great!" or something like that.

when my dad was ill i went behind his back to his doctor a few times on issues that i had concerns over and they were very helpful. especially dads seem to get stubborn when moms and daughters/sons try to tell them what they need to do but if it comes from the doc they sit up and listen,

i think your dad is doing as you think he is - scared of any changes because everything feels stabile to him right now. he has been thru hell i am sure and this is his last bit to hold on to, to make him feel he is in control and managing so go easy, don't sweat it and talk to his doc.

hugs to ya for caring so much! he is lucky to have such a great support team in place looking out for his well being.

Wow . . . cannot imagine wanting to keep that thing in if he's eating normally and calorie in take is not an issue?! As you know, removal is quick and just a brief sting. Very surprised the doctors are not telling him to remove? Good luck on this.

Glad your father is doing well.

Ive had my peg tube since july 2007. I eat and drink everything by mouth. I use my tube to get extra fluids and to take medicine. Do I need the peg tube, NO. Have doctors suggested removing it, YES. Have any doctors advised me to keep it, YES. Do I plan on having it removed, YES.

Believe it or not, Im the biggest PEG tube hater there is. My reason for still having it is due to my last pet scan not being 100% clear. If the next one is good then goodbye to the tube. I dont want to take it out only to have it put back in. My speech therapist also advised me to hang on to it thru the winter just in case of any serious illnesses. Im sure your dad has reasons for keeping it, maybe he just isnt ready to share this with anyone yet. After going thru tx which can be so terrible, maybe he is still scared and feels like I do. Its better to have it and not need it than not to have it and need it.

Hi Christine,
I deeply appreciate your point of view on this.
He had horrendous infections at the Peg site early on..I worry about it and hate the peg too.

Thank you also azcallin, - it's complicated at the VA because the docs change every 12 weeks but will take some measure like this.

Good to hear from you Donnarose

Thank you william

My husband returned to RO for PET results and gave him the all clear. MY husband had been resisting all discussions of removing the PEG but when the RO said time to take it out we all surrounded that thought and I had his appt made in 24 hours and before he could say........wait a minute....it was GONE We just got home for the beach and all is well so far.

I think working with the doctor to make the statement and then getting everyone in the family excited was our key to getting rid of the PEG.