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Better days!

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hey peeps! Sorry haven't posted in a while; I have been reading but didn't really have much to say! I was really inspired by the caregiver posts; but being single I didn't really feel like I had much to add!

Anyway, I am on week 6; haven't used feeding tube since last Friday. I am eating but it's slow process and have to wash everything down with water. I do have some taste already, I'm thinking that's because I had tonsil and not tongue; who knows. I can taste the peach and blueberry in yogurt. Was able to taste the beef in a hamburg. Can taste orange juice. I still have pain on my right side of throat; but that is where I got zapped the most. They actually agreed to take the feeding tube out next week along as I maintain my weight. Also, went to the dentist and he said everything looks good. The soft tissue necrosis is healing on it's own; so I was stressing for nothing!!

I'm not gonna lie, the mental aspect is still tough, i see young/middle aged adults out at ball games or functions and I get pissed off; why me; why not them!!! I guess I have to just accept that I have bad luck and got this. I am going to my first young adult cancer survivor group tonight and hopefully it will help meeting other young people have dealt with cancer. Anyway, best of luck to everyone. Also, check out the oral cancer foundation blog; they have a lot of really good survivor stories..

Charles

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Stop beating yourself up....it is what it is.

LOL, no body deserves to get the disease, and nobody wants it either...LOL.

I'm glad you are regaining some of your tastes, more will follow, as will the lessening of the necessity of having water constantly.

At least in this day and age, where the technology and MD educational levels are huge. If we have to have this situation, it's probably the best time in history to be going through it.

Andddd as you are your own main cargiver, put your photo up. Either the new you, or your boating photos from the past.

Best to you Buddy,
John

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

You know, I'm so proud of you.

And after going through as a caregiver, I know it was especially hard.

You're going in the right direction.

Be well
Lisa

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hey Lisa, Thanks for the positive remarks! I saw Glenn yesterday; he looks great. He didn't seem like he wanted to talk much; but it was good seeing him. Looks different without the beard! :)

Charles

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

He's tired of making appointments every week, being examined, getting new instructions, etc.

They made a big fuss over him yesterday and he didn't really "get it". I told him it was because you're doing good and your MD really had no way of knowing how well you'd do so she's pleased.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

I am glad that you are starting to taste again. I hope everything continues to improve.

Kathy

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Charles, your progress sounds great. I'm glad to hear you're going to meet with some others your age with similar diagnosis. I was a young adult myself once, though it seemed to pass pretty quickly. Anyway, I'm glad your symptoms are lessening, and your eating is improving. Keep it up.

Hal

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I am happy that you are experiencing better days! May they only continue to improve.

rozaroo
Posts: 667
Joined: Apr 2010

I really believe you are doing great Charles! You are bouncing back in the taste department much earlier than I did. I understand how our confidence suffers with this illness but you will come out of it ok! I was going crazy with this waiting game but after five month's thing's are much better for me. Plus you were on your own with your recovery,
you certainlly do deserve a pat on the back for that in itself! Keep doing what you are doing Charles. Now you have me thinking about Pot Pies lol. I haven't tried those as of yet!
Hugg's Roz

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

You are normal, I go back a week from Monday, for I hope the big removal of this trach, the last time they did this i had a over radiated infection that was not healed and my breathing tube closed up....that was a nice ambulance ride, and the trach put back in. I did get rid of 2 doctors since the last posting, I kept two, this has truly helped in stress reduction, I even ditched a few drugs, I just hope this ends soon, I can heal my throat, and keep what I have left as a voice, it ain't pretty. but hell, i wasn't going to cut any records soon. So I'm happy to be a live and to move on without the PVC piping hanging from my throat...Life could be worst, and it took alot of people to persuade me to get on with it..Charles hang in there, we are all walking by your side...The Best. Dennis...latest weigh 158, from 140....

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Great photo Charles, you look great dude, keep up the good work.

John

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

It sounds like you are doing well Charles and I could not be happier for you!

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

That's a real milestone. if you can handle the acidity of orange juice, you're on the road back.
Good news!

--Jim in Delaware

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hey Charles,

Sounds like you are doing really well, though without a comparison, it can be hard to detect. Rest assured your recovery is on a good track.

Things will just keep improving and the normal parts of your life will return. I went out with a bunch of guys for a business lunch yesterday. I had soup and salad while they chowed down on big meaty dishes and pastas. It took me longer to finish, but I am healthier and still enjoyed it all.

As time goes by, the little annoying 'C' guy on your shoulder appears less and less.

Cheers
Scam

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

All you great people have been my inspiration; you have really helped a lot. I wish i could buy u all a round of a nice cold one!! :) BIG HUGS!!!!!!

Charles

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I am glad to hear you are doing well, and don't worry about the why me, I beleieve we all ask the same question at times.

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