still in complete shock ...

bpell0402
bpell0402 Member Posts: 61
in Head and Neck Cancer #1
my mother NEVER used her feeding tube! i cant believe it!

i know it was still the right decision given her 107lb weight and all the stories i heard. but i am in shock that she NEVER used it. she still eats some things by mouth - eggs, oatmeal, pasta, cheerios, hot dogs, french toast... but on bad days she drank ensures and protein shakes no matter what.

the tube has been nothing but pain for her. still oozing, pain with sitting, walking and sleeping.



my mother has been very diligent about all of the recommendations i have given her through this website.

she's started using miaderm on her neck about 2 weeks before treatment. the last week of treatment her neck was really bad .. she started using radiapress gel pads and then onto silvadene. when she was able to use the silvadene four times a day on the weekend it made such a big difference instantly. her skin is about 85% better today.

she used baking soda + salt and glutamine and aloe in her mouth about 6 times a day. she used aloe in a spray bottle for when she was on the road and needed a quick relief.

she bought a water pick and used it religiously throughout the day .. it really helped her and benefited her.

when the mouth sores got bad the doc prescribed dexamethasone (steroid) swish and spit .. calmed them down instantly in 2 days.

she did neck exercises and swallowing exercises everyday.

she drank 2 liters of water every day.


i am truly amazed at how great my mother did through all this and thank god everyday it wasn't as bad as i imagined. i was certainly prepared for the worst case scenario. i thank god i stumbled upon this website which allowed us to arm ourselves with every possible weapon during this battle. things seem to be getter as opposed to getting worse ... she cannot wait until she can have a meal that she can taste!! she is craving pizza and a cheeseburger!

we see the nutritionist and GI doctor to discuss peg tube removal. Radiation doc wants us back in 4 months.

there is light at the end of this long torturous tunnel ...

Comments

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #2
    So Am I
    I too am also amazed, I have followed many thru treatment over the many years and no one I recall has been able to do what you have described and as a bonus she drank 2 liters of water per day. That is from my experience unheard off.

    May sound bad but the easiest cheeseburger to eat for me even now is the Mcdonald's double cheese burger. Almost like a slider for me. I suggest no catsup to start with.

    Continued prayers for fast recovery and strength.

    John

    I will be sharing this story with Head and Neck Cancer support group tonight.
  • arndog64
    arndog64 Member Posts: 537
    #3
    fisrpotpe said:

    So Am I
    I too am also amazed, I have followed many thru treatment over the many years and no one I recall has been able to do what you have described and as a bonus she drank 2 liters of water per day. That is from my experience unheard off.

    May sound bad but the easiest cheeseburger to eat for me even now is the Mcdonald's double cheese burger. Almost like a slider for me. I suggest no catsup to start with.

    Continued prayers for fast recovery and strength.

    John

    I will be sharing this story with Head and Neck Cancer support group tonight.

    That is amazing!!! When did
    That is amazing!!! When did she start/end?
  • Pam M
    Pam M Member Posts: 2,196
    #4
    Magnificent!
    Really, really good to hear how well your mother has done. When the time is right, I know you guys are gonna have the most wonderful pizza and cheeseburgers ever!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Light Ahead....
    Awesome news...truely a testiment on just how tough she is.....

    I didn't have the PEG and was never an issue for me, but I had a lot more weight than 107 going in.

    I too was one than certainly felt in your mother's case it was a wise decison, and still do....it wouldn't have taken more than a few days of not taking anything in before things went south fast.

    Keep heading for the end of the tunnel, almost there...

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
    Skiffin16 said:

    Light Ahead....
    Awesome news...truely a testiment on just how tough she is.....

    I didn't have the PEG and was never an issue for me, but I had a lot more weight than 107 going in.

    I too was one than certainly felt in your mother's case it was a wise decison, and still do....it wouldn't have taken more than a few days of not taking anything in before things went south fast.

    Keep heading for the end of the tunnel, almost there...

    Best,
    John

    Glad that she didn't use it, still think it was the right move.
    I am so glad that your mother has done so well! Music to my ears! Well, that would be if I could hear right now, I suppose. Lol
  • KDDavis
    KDDavis Member Posts: 34
    #7
    Amazing!
    It sounds like she is a trooper! I haven't thumbed through all the posts here on the boards but this is the first I've heard of spraying aloe for relief. I've not seen sprayable aloe - all I've seen is the thick stuff designed for sunburns and such.

    I am just sitting down to a bowl of soup and as I was eating it I was thinking it was extra painful then I realized I had forgotten to take my Mary's Magic. Now it's much better.

    We'll keep you, your Mom, and the rest of you out there in our prayers!
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #8
    KDDavis said:

    Amazing!
    It sounds like she is a trooper! I haven't thumbed through all the posts here on the boards but this is the first I've heard of spraying aloe for relief. I've not seen sprayable aloe - all I've seen is the thick stuff designed for sunburns and such.

    I am just sitting down to a bowl of soup and as I was eating it I was thinking it was extra painful then I realized I had forgotten to take my Mary's Magic. Now it's much better.

    We'll keep you, your Mom, and the rest of you out there in our prayers!

    Congratulations
    I'm truly surprised she chose not to use it, and got all the nutrition/hydration she needed without it. She did have surgery, so perhaps that plays into it with the number of places she got the rads- the specifics of her treatment enabled her to continue with the traditional way of eating and drinking. Happy for her. And I would advise you to have no regrets about advising her to get the PEG- all things considered, it was a wise and loving precaution, as a daughter would do for a Mom she loves. Many of us would have done the same.

    kcass
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #9
    Excellent
    So good to hear Mom came thru it all so wonderfully. I also was looking forward to that first slice of pizza, unfortunately for me it didn't taste anywhere near as good as it smelled. As a matter of fact it tasted like stale cardboard, but it sure tastes good now. Cheers.

    Jimbo

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