Hey friends made it: 13 YEARS

Rachel,

There truly is a learning and acceptance curve to all that cancer bestows on us.  I am glad to hear you are working on your issues and having success.

It is a fine line we each walk with mental and physical stability.  What is around the next corner is reality.

Love your check in,

Matt

I had felt like dancing before checking in here. 

now i have a big time reason

congrats!!!!!

john

dance, dance and dance more

longtermsurvivor said:

I was going to call you

Rachel13yrsuv, but you beat me to it!  Unfortunately, I don 't think you can change your username.  So  we will just have to  call you  PLUS 1.  Its all good news.  YOu have the right attitude, moving forward.  Life is still great if we don't obsess on the little parts we have lost.  That's where you are winning.Keep up the good work.

Best

Pat

Rachel12yrsuv PLUS 1!  That works for me! Congrats and continued success on the journey. You have so much to be thankful for. Focus on the blessings. They're a lot bigger than you realize!

Positive thoughts and prayers

"T"

 Life on the PEG

You touched on a subject that is hard for others to understand. Having a PEG tube for a few months is not a hard thing, but knowing that you will have it for the rest of your life is something totally different. It is very hard to explain how different I feel and how my life has been affected by not being able to eat as normal people do. I do my best to show a happy face but when all the family is over and eating all things I once loved to eat and all I can do it to put it in my tube without tasting it, the feeling is hard to explain. At first I did not want anyone to see me eating like this but then I realize the only way I am going to make it is to get over this isolation I am putting myself into. So I started feeding myself with my children around and even got my grandchildren involved. My little 5 year old granddaughter helps me push the syringe because sometime it is too hard for papa to do by himself. I also started to take my Wife out to eat again; I bring my Nutribullet with me and when the food comes I put it in the bullet and add water and find a 110 plug and blend it up and come back and eat just like anyone else. Sometimes people stare but I find now I am use to it and it don’t bother me anymore. Yesterday I had to travel to one of our Ships to upgrade their maintenance system. So at Lunch time I walked into the galley and pulled out of container of food my wife made me and got the syringe out the bag and my PEG tube out of my shirt and started eating. By now everyone knows me and knows what I been through so to them my fellow workers I am just as normal as they are. Living with the PEG has it problems and times of depression still; but then I think of how life would be if there were no PEG tubes at all. I enjoy every day that God has giving me as extra and my friend Alien the name I gave to my PEG tube is the reason I am still here.  

Thanks for sharing with us your story: Take care and God bless and keep you in His tender care.

Tim Hondo

Congrats on your 13 Years! Sorry you have had to endure so much with this disease. Thank you for sharing your life with us and giving the newbies some hope!

God Bless,

~C

Contratulations Rachel!

You got your PEG tube last year - when you were 12 years out?  Were you to the point you couldn't swallow at all - or getting close to that?

I am 6 years out from tonsil cancer, and just got a PEG tube this week.  I've had 9 dilations since April.  There was 7 weeks between the last two - and lost alot in those weeks.  I have also lost my voice in the last few weeks, and my now non-functioning vocal cords are obstructing my airways.  My throat also hurts (for 15 months) - and I'm only eating if I'm on pain meds.  With all this going on, the doctor wanted to get the tube in before he can't use the kind he likes, and I can start getting hydration and nutriion again.  The doctor will continue to dilate so that I can swallow my saliva.  (Thank goodness - i have always had a fear of water and drowning - I don't know if I could handle that)

I'm can still take liquids, and will trying to "eat" something once a day.  I have also volunteered to lick plates if there is a yummy sauce!

Congrats again!

Gaining control and acquiring an edge while moving forward.  12 + 1 means you will always be on the plus side and you should strive to enjoy every day of it and it sounds like you’re doing just that.

I was thinking about you a few weeks back while having lunch with some of the lawyers I work with and I brought up SSD and they said basically that in more cases than not it drags on for a while. That sigh of relief should come for you soon.

I will soon be able to call you neighbor. Occasionally I drive up to Allentown and negotiate a construction agreement for the eastern part of PA or just to have lunch with some of the guys at the Allentown local. We can maybe do that coffee thing or better yet if you feel up to the challenge we can do the frozen yogurt thing like John and I did.

Haven’t been on here for a short while but being this was the first post the morning started out with a smile. You can only acquire success by moving forward.

Life is good

      Jeff