Peg and port

stevenl
stevenl Member Posts: 587
edited March 2014 in Head and Neck Cancer #1
Hey everybody,
So here I sit at 2:00 a.m. wide awake after having my new devices installed. What a joy it was. Gotta say though, it really isn't as bad as I had made it in my own feeble mind. Yea there is some pain and discomfort, but it is going to be doable. Don't know why I had so much anxiety over the peg. Just the not being in control finally setting in I suppose.

So today I go for my dry run at 10:30, and then off to the dentist for the beginning of the salvage of my remaining 24 teeth. Joy abounds huh. It is not so bad, I'll make it I know
because of my conversations with all of you. Thanks everyone for listening and helping me so far. I truly mean that, Thank You all.

Warmly,
Steve

Comments

  • cwcad
    cwcad Member Posts: 117
    Hooray for preparations!!
    I believe that it is best to be informed. I was in stupid mode when I went in for my surgery to have the port and peg placed. The double port that I had worked flawlessly and the food peg was only a problems if I did not tend to it properly. I cleaned it each time that I fed myself. Aside from knowing I had one very few people would know that I had one unless I was feeding with a pump. I found the pump was the only way to get food into me without getting sick. Throwing up was worse than anything that I had encountered previously. So I tried real hard not to get nauseous.

    Thanks for the info. I always hope and pray for the best!!
  • Hondo
    Hondo Member Posts: 6,636 Member
    Getting Ready
    Steve

    A lot of it is about attitude my friend and yours is great, all the best to you and the wife as both of you begin the journey
  • ratface
    ratface Member Posts: 1,337 Member
    Hondo said:

    Getting Ready
    Steve

    A lot of it is about attitude my friend and yours is great, all the best to you and the wife as both of you begin the journey

    couple of things to remember
    Right around now someone should be talking about having a home nurse come out and show you how to clean and care for the feeding tube. Have your wife learn also. Clean and maintain every day and you will avoid problems, the irritation on the port can get nasty if not kept clean.

    The port for chemo needs to be flushed every 30 days and with some solvent/chemical and after every use. Anyone touching it should be wearing gloves. Also read the literature about Airport security machines if you plan on traveling with it. They give you a card and band to wear for that purpose.

    The journey begins for you and you are doing well with it. keep it up!!!!
  • Greend
    Greend Member Posts: 678
    ratface said:

    couple of things to remember
    Right around now someone should be talking about having a home nurse come out and show you how to clean and care for the feeding tube. Have your wife learn also. Clean and maintain every day and you will avoid problems, the irritation on the port can get nasty if not kept clean.

    The port for chemo needs to be flushed every 30 days and with some solvent/chemical and after every use. Anyone touching it should be wearing gloves. Also read the literature about Airport security machines if you plan on traveling with it. They give you a card and band to wear for that purpose.

    The journey begins for you and you are doing well with it. keep it up!!!!

    Port
    I had a "two holer" port. When they put it in it was almost invisible. They flushed mine following every treatment so I didn't have to worry about that. They also use it now to draw blood (my mom is undergoing chem as we speak) which is nice. As I lost weight the lump on my chest became much more obvious. The day they removed it was almost like "Graduation Day". It really will make life easier for you.

    I think with your positive attitude you will do fine. Good luck on your journey and stay with us.
  • micktissue
    micktissue Member Posts: 430
    Steve
    Hey buddy. Laying here in bed dealing with a bit of nausea and strange, chronic double hiccups that are like a hiccup and an attempt to blow, but not quite. I'm on 3 or 4 anti-emetic meds including one that cast $500 for 3 pills (3 days)!

    Took adavan last night for the first rad appt and played The Band while they zapped me. It was more than tolerable. What really helped was meeting the woman coming out ahead of me who found out 3 weeks ago she had brain cancer, has two young kids, is going through a divorce ... my heart just went out to her. I gave her my card and said "I can't be your counselor, but I can listen." She was really grateful and I felt like I was back at work! Afterward I felt that is she can do it, so can I.

    Best of luck Steve. You know we're at the same amusement park and on the same roller coaster. We just gotta hang on.

    Best,

    Mick
  • MaryRC
    MaryRC Member Posts: 114
    HI Steve
    A persons mind can make you feel all kinds of things I am finding out. I am glad the tubes arent as bad as you thought. I will probably be going through that soon myself. Even thou I am a nurse and one of my pediatric patients has a feeding tube, it will be diferent with one of my own.
    I forget..... how many weeks for the radiation and chemo?
    I hope I can handle it... I am such a big baby. I havent even had surgery yet and I am already complaining about everything.
    oh.... to get the tubes and port do they do it in doctors office or hospital outpatient?
    Mary
  • Greend
    Greend Member Posts: 678
    MaryRC said:

    HI Steve
    A persons mind can make you feel all kinds of things I am finding out. I am glad the tubes arent as bad as you thought. I will probably be going through that soon myself. Even thou I am a nurse and one of my pediatric patients has a feeding tube, it will be diferent with one of my own.
    I forget..... how many weeks for the radiation and chemo?
    I hope I can handle it... I am such a big baby. I havent even had surgery yet and I am already complaining about everything.
    oh.... to get the tubes and port do they do it in doctors office or hospital outpatient?
    Mary

    Port Mary
    I didn't have a tube but the port was done in the hospital. I was proud I had a Two Holer (if you are from the rural south you will appreciate that)- You will do fine. Every day I went in feeling sorry for myself and then you would see somone like discussed above who has it so much worse. I firmly believe ATTITUDE, ATTITUDE, ATTITUDE

    I just refused to let it beat me.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    steve if i knew you were up
    steve if i knew you were up at 2am, i would have posted then. i am a terrible night owl. lol

    glad you are doing okay. hope the dentist appt goes well. i was so mad about them having to yank a chunk of perfectly good teeth out of my head. i never had a tooth pulled before that. i was glad they knocked me out. i had my wisdom teeth, and the ones next to them pulled.

    mick: hang in there. sending you good thoughts and best wishes. i have always hated hiccups, now with the peg tube, i get cramps and spasams there when i hiccup. not pleasant.

    you guys hang on tight and keep your arms and legs inside the vehicle............

    :)
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    steve if i knew you were up
    steve if i knew you were up at 2am, i would have posted then. i am a terrible night owl. lol

    glad you are doing okay. hope the dentist appt goes well. i was so mad about them having to yank a chunk of perfectly good teeth out of my head. i never had a tooth pulled before that. i was glad they knocked me out. i had my wisdom teeth, and the ones next to them pulled.

    mick: hang in there. sending you good thoughts and best wishes. i have always hated hiccups, now with the peg tube, i get cramps and spasams there when i hiccup. not pleasant.

    you guys hang on tight and keep your arms and legs inside the vehicle............

    :)

    Mary- the tube
    Mary- the tube is done outpatient in a hospital. Most like to do the Port and tube with the same outpatient Op. I did have w/seperate Ops., though, so such is not uncommon.

    Mick- the Band? I never could much get into anything during treatment. Hope the music stays good with you thru this.
    Steve- welcome to the reality most of us have known. Again- you will survive, as we have.

    Believe.

    kcass
  • Scambuster
    Scambuster Member Posts: 973
    Kent Cass said:

    Mary- the tube
    Mary- the tube is done outpatient in a hospital. Most like to do the Port and tube with the same outpatient Op. I did have w/seperate Ops., though, so such is not uncommon.

    Mick- the Band? I never could much get into anything during treatment. Hope the music stays good with you thru this.
    Steve- welcome to the reality most of us have known. Again- you will survive, as we have.

    Believe.

    kcass

    Mick n Steve,
    Well done guys. You are both doing fine so far and I am sure you will get through the next couple of months and be able to look back and say you slam dunked it. Remember to get assistance of you need it. You may encounter a few bumps in the road ahead so be easy on yourselves. Rest plenty and keep hydrated.

    Sending you all good vibes and wishes for a speedy and smooth treatment and quick recovery.

    Regds
    Scambuster