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rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi everyone,

Just thought id tell you where I am at today, after mealtime therapy(which they have become) of oatmeal and chocolate pudding, we scheduled my next swallow study for May 7 @ 8am followed by 9am therapy to discuss video. If all goes well I will be incorporating eating meals @ home into treatment and possibly discharged few weeks later. The tube will remain my main source of nourishment, due to the process of swallowing is tiring and after while not worth it, so it will take time to build up strength with new stragies, but I will be able to eat with my daughter and boyfriend and socially again! So much for NEVER EAT OR DRINK AGAIN, they should never under estimate a cancer survivor, especially when her support team includes the greatest family ever on this site! Keep praying we're not at the top of the mountain yet, but I can see it through the fog ring I ave been in!

Love you guys,

Rachel

CivilMatt's picture
CivilMatt
Posts: 2909
Joined: May 2012

Rachel,

Oatmeal and chocolate pudding, what a delicious combo.  Oatmeal feels like a challenge to swallow. 

Keep moving (swallowing) forward.

Matt                                                                                                          

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Matt, How'd you know...oatmeal brown sugar w/ 2% milk and then pudding. Oatmeal was more difficult, cleared it, but after awhile the effort wasn't worth the taste. All these years I have been praying for a solution to my constant battle with weight, and God put me on a new plan...Careful what you wish for the old dieting was way easier then this new one. But at least I can be sure the weight ain't coming back! Lol Take care Matt Rachel

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

If I had to survive on oatmeal, I wouldn't.  It isn't the easiest food to handle.  I aspirate the little kernels, so I've become a cream of wheat guy.  Just a thought or two, probably worth about what you're paying for itLaughing  Remember pureed food.  It has taken me quite awhile to come to the conclusion that almost anything can be pureed, mixed with gravy to a certain consistency, and swallowed that way.  I did fried chicken last night, which I would't be able to touch otherwise.  I have become the gravy master....

 

Also, I wonder that you will continue to need your tube.  If you can swallow liquids, you can swallow ensure/boost.  They are a complete replacement, not just a supplement.  I admit that about 2/3 of my calories come from those, because like you, it is hard to eat enough other stuff to get by.  Five boost plus per day equals almost 1800 cal, and you can drink it in place of water, for that matter.

 

best

Pat

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

If you can handle cream of wheat and milk, you can probably do grits and butter...., LOL.... for a little variety.

JG

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

cheesy grits and butter.  One of my favorites.  I can even do bacon, just careful that it is the right consistency, and that I follow each bite with grits to push it on down.  Oh, and fish, I can do fish.  IT is by far the easies meat to swallow.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

My favorite...

Hard to go wrong with that menu...

JG

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Pat,

You sound like the same way I am gonna have live, when you say puree, are you referring to chicken in blender mixed with gravy? Oatmeal was alittle difficult, I never had cream of wheat, ill have to try. When you say you aspiriate, are saying it goes into lungs or you are able to stop it at vocal cords and cough out? Lastly, I know this won't sound right, but, I have finally achieved a healthy weight(I need to tighten up alittle more and could loose a few more but docs are very happen with weight and all the other levels cholestrol etc., how do I incorporate real food and ensure plus. I know I will not eat enough to keep me nutrionally sound, but I don't want to do too much and gain weight from the calories, but I want to be healthy.

Also, when I find out after next swallow study about eating at home, yes I will be able to drink my ensure, but she wants m to hang on to tube for a awhile to make sure I am doing ok. She said it is better to have and not use than pull out and have to have reinserted. She said emotionally it is very hard for people like us to accept if that should happen again.

Anyway sorry to hit you with many questions you are just so knowledgable and I respect your opinion. You have a couple yeears on me in this survival so I feel like your my guide!:-)

Love,

Rachel

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

let me PM you some thoughts.

 

Pat

phrannie51's picture
phrannie51
Posts: 3673
Joined: Mar 2012

I knew you could do this.....never say never is perfect for those on this board.   I'm thinking that the tube might not be there forever either.....

p

wolfen's picture
wolfen
Posts: 1192
Joined: Apr 2009

Giant steps, giant steps. You go, girl!

Luv,

Wolfen

Patti1967
Posts: 186
Joined: Mar 2013

Congrats on your climb up that mountain!  I'm sure you will make it to the top:)

Patti

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Wolfen,

How r u, how are things going now that hubby is home with you. Any sign of his normal mental state returning yet. Is your infection getting any relief. I think about you often, pray that life gets easier for you both!

Thanks for being happy for me in midst of your hetic days.

Love,

Rachel

debbiejeanne's picture
debbiejeanne
Posts: 2366
Joined: Jan 2010

since the top of that mountain is in sight, it won't be long now and u'll b eating anything.  keep up the good work.

God bless you,

dj

lorig01
Posts: 67
Joined: Jul 2012

You go girl! I am so happy for you! I agree with Skiffin on the grits! One of my faves!

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Rachel , I am so excited and happy for you ! I know you can do it ! Keep up the hard work and you are going to be able to eat what you want and sit at your dinner table and eat with your family !!!!

Peggy Smile

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am so glad to hear you are still making great progress on eating.  Such an accomplishment after the grueling treatment.

hwt's picture
hwt
Posts: 1888
Joined: Jun 2012

You go girl! My family has always been planning the next meal while eating a meal so when I had my feeding tube I really missed the social aspect. I am happy to be able to eat and go to resturants but many a day, I tire of the trouble of eating before I am full.  Seems I am now the last one at the table with my 87 year old mother, not out of respect but because I'm still trying to get my meal down. I had oatmeal last night by choice because it was just easier to eat. I'm so happy for you to have options opening up. 

God Bless,

Candi

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