Going for changes in my care

So yesterday was supposed to be the last of 6 cisplatin treaatments. My dr and I decided to cancel it because I am NOT tolerating them well. Any how thanks be to God for that. Also as you know I have started to use my peg and what a debaucle that has also been. Cant keep the Boost down no matter how I try so as of now I am starting to blend my own. I actually just tested malt o meal, peanut butter, sugar some milk and other things and guess what-it stayed with me. As of today, I am taking charge of my care and do I ever feel better. The best news though is as of next Wed I will have finished the last of my radiation also=Whoot Whoot!!

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    You go girl!!

    You're in the single digit countdown now....and that's glorious!!  Everyday during the "less than 10" countdown, my husband would let me know how many I had left to go before I rang the bell.  The first day I got up and didn't have to go to rads was a huge relief!

    p

  • Sailor123
    Sailor123 Member Posts: 97
    Hi.  Good for you.  Not sure

    Hi.  Good for you.  Not sure why you want sugar since you can't taste it and its not great for you.  Have you tried putting a raw egg yolk in?  It is so good for you to get the protein and will help you maintain your muscle mass.  I put one in a smoothie everyday.  Do you use whey powder?  That will help to.  So glad you are putting good nutrition into your tube.  this will help you get better much faster.  If you have a vitamix you can add beets and avocado to.  I used all of the above.

    Life will be much better when you are finished with rads.

  • Sailor123
    Sailor123 Member Posts: 97
    Sailor123 said:

    Hi.  Good for you.  Not sure

    Hi.  Good for you.  Not sure why you want sugar since you can't taste it and its not great for you.  Have you tried putting a raw egg yolk in?  It is so good for you to get the protein and will help you maintain your muscle mass.  I put one in a smoothie everyday.  Do you use whey powder?  That will help to.  So glad you are putting good nutrition into your tube.  this will help you get better much faster.  If you have a vitamix you can add beets and avocado to.  I used all of the above.

    Life will be much better when you are finished with rads.

    P.S  I'm so glad your taking

    P.S  I'm so glad your taking your nutrition into your own hands.  Peanut butter is GREAT!!

  • sharon 1
    sharon 1 Member Posts: 50
    Sailor123 said:

    P.S  I'm so glad your taking

    P.S  I'm so glad your taking your nutrition into your own hands.  Peanut butter is GREAT!!

    Sailor

    I laughed because I didnt think when I threw all the ingredients this morning. It is so typical for me to put sugar in cereal that I just did it naturally. I am soooo fed up with the nutritionist telling me that if I slow down the peg I can get the Boost products thru. I just decided that my body doesnt accept the crap and to do things different. I am experimenting now so if there is anything that I shouldnt put in, please let me know.

  • wmc
    wmc Member Posts: 1,804
    That's it, you take charge

    You might want to rethink the sugar. If it is for flavor, your stomach doesn't tast. If it is for enegery, you might want to switch to honey as it will be absorbed so much faster and with less effert.

    Remember the hardest things to digest and what you will produce more acid to digest is; Milk, cheese, chocolate, and fats.

    Glad to see you take charge.

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    good for you Sharon.  i think

    good for you Sharon.  i think its best when we take charge.  The docs don't know our bodies like we do.  as long as you keep it down, that is all that matters.  so you now see the light at the end of the tunnel!  fantastic!! know that we are all on the sidelines cheering for you and we will be there in spirit when you ring the bell.  won't be long now and you won't know what to do with all your extra time!  woooowhooooo.

    God bless you,

    dj

  • jackflash22
    jackflash22 Member Posts: 524 Member
    sharon 1 said:

    Sailor

    I laughed because I didnt think when I threw all the ingredients this morning. It is so typical for me to put sugar in cereal that I just did it naturally. I am soooo fed up with the nutritionist telling me that if I slow down the peg I can get the Boost products thru. I just decided that my body doesnt accept the crap and to do things different. I am experimenting now so if there is anything that I shouldnt put in, please let me know.

    Formulas

    I have the same problem with formulas I had mine changed 5  times and still have problems. When I don't eat and when I get up in the morning my stomach is flat and no nausea but as soon as my formula hits my stomach it bloats and hurts and makes dreadful loud noises. It goes through my stomach at a great rate Of knots. I'm just going through dilations to get my throat opened once I can swallow again I will go on real food. I'm pleased to hear your blended foods are suiting you.

  • hwt
    hwt Member Posts: 2,328 Member

    good for you Sharon.  i think

    good for you Sharon.  i think its best when we take charge.  The docs don't know our bodies like we do.  as long as you keep it down, that is all that matters.  so you now see the light at the end of the tunnel!  fantastic!! know that we are all on the sidelines cheering for you and we will be there in spirit when you ring the bell.  won't be long now and you won't know what to do with all your extra time!  woooowhooooo.

    God bless you,

    dj

    Sharon

    Once tx is finished things will begin to improve. It is good that you can manage real food in your PEG. I could not tolerate jevity and ended up with malnutrition and dehydration in the hospital. I was always able to do Ensure Plus but this time have to take it at a slow pace. If things don't sit well, you might want to try slowing down the feedings, it worked for me.