Hey friends made it: 13 YEARS

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rachel12yrsuv
rachel12yrsuv Member Posts: 435
in Head and Neck Cancer #1

Hi everyone,

i known I havent checked in for sometime been hectic summer ending and Faith going back to school(which as it turns out will be last year at this school). Chris and I have decided to move in together and are buying his Grandfathers home near Allentown, hopefully my SSI comes at least to hearing before than!!! Its been almost a year since the feeding tube went in(december 19,2013) and the week before that was my last unemployment check so financially its been a long year!  Chris will have to bear the brunt till i can help in someway!  Eating some more, still dominantly the ensure and tube.  Started to see therapist and psychiatrist and it is helping me reidentify myself not as what i did or who i was but who i am now.  Really didnt realize how depressed i was, I had gotten so good at putting on happy mask and being the role everyone expected of me I never took the time to realize that somewhere along the way I lost me.  This disease has its blessings but most certainly its own version of hell too, so e deal with it better than others, i think i was good than the feeding tube pushed me over the edge, but i realized it and I am working on it and thats all that matters!  My angel Faith is doing so well and adjusting to all the changes in her young life, she prays every night that Mommy can eat again so we can have our date dinner nights again, at 9 she is such a sensitive soul,  Chris refuses to eat in a resturant with me until I can, he will even go to fast food go in and get it and depending on where we are, eat it in the car just so i dont feel uncomfortable not eating even though i saynit doesnt bother me, he says when i can he will!

SO SEPTEMBER 28,2013 i was at a family wedding celebrating her wedding day and my ANNIVERSARY 13 YEAR SURVIVOR. PRAISE GOD!

I hope this note finds all my old friends well, i think of you all often and pray for you all everyday!

 

All my Love, 

Rachel13yrsuv

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    13 years, wow!

    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

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
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    rachel, congrats!!  i look

    rachel, congrats!!  i look forward to 13.  it has been 1 yr and 8 months for me.  wow, i didn't realize that much time had past since my surgery...lol.  i'm glad that you, chris and faith enjoyed the summer.  i hope your fun continues.  thx for coming by to ckin.  its always good to hear from old friends!  take care and let us know how you do with the eating.

    dj

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #4
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    Felt

    I had felt like dancing before checking in here. 

    now i have a big time reason

    congrats!!!!!

    john

    dance, dance and dance more

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
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    It is a blessing, Rach....

    and your long long survival fills me with hope.  A year ago you weren't eating anything, so improvements are slow but sure....everything about this disease is slow and sure!!

    Congrats on your new house....sounds to me like Chris is a keeper, and Faith truly is an angel.

    p

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #6
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    phrannie51 said:

    It is a blessing, Rach....

    and your long long survival fills me with hope.  A year ago you weren't eating anything, so improvements are slow but sure....everything about this disease is slow and sure!!

    Congrats on your new house....sounds to me like Chris is a keeper, and Faith truly is an angel.

    p

    Thanks Friends, 
     
    i am so

    Thanks Friends, 

     

    i am so gratful i found this site i want to change my username to rachel13yrsuv but cant figure out! Lol thats my age showing if i was a youngone i would be zipping right through all this technology,computers came out my senior year in HSit was called "information systems" and the hard drive i guess was loud and took up whole classroom! Lol

     

    love, Rach

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
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    rachel12yrsuv said:

    Thanks Friends, 
     
    i am so

    Thanks Friends, 

     

    i am so gratful i found this site i want to change my username to rachel13yrsuv but cant figure out! Lol thats my age showing if i was a youngone i would be zipping right through all this technology,computers came out my senior year in HSit was called "information systems" and the hard drive i guess was loud and took up whole classroom! Lol

     

    love, Rach

    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

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #8
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    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

    I Like It!

    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"

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #9
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    Congrats!!

    13 years!!  THAT is something to celebrate :)  It sounds like things are going better for you each day!  Wishing nothing but happiness and more blessings for you. 

  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
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    Hi Rachel

     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

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
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    Allentown ~ Billy Joel

    Congrats ms 13year survivor.....

    Say hello to Billy Joel for me once you hit AllenTown....

    Best Always,

    John

  • cureitall66
    cureitall66 Member Posts: 913
    #12
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    Congrats!

    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

  • peggylulu
    peggylulu Member Posts: 375
    #13
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    Rachel 13 year survivor Yay !!!!

    Rachel I am so happy for you and so glad you decided to check in ! It is so good to hear that you are doing better and that you are getting on with your life. Yes Faith is your Angel and what a Blessing she is and Chris sounds like one too ! I just got a NED at MDA and I have to go back in 3 months for a CT. I asked the Doctor while I was there what my chances of getting my taste and salvia back were and he said I would probably get "most" of my taste but not so much of the salvia back .   :( That is depressing to me so I can sure see how you were  depressed ! Hopefully that is behind you now . Check Back in with us when you can .

  • lornal
    lornal Member Posts: 428
    #14
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    Congrats!

    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!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #15
    Options
    lornal said:

    Congrats!

    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!

    H&N fantsy

    Lornal,

    Lick Plates?  A person after my own heart.   I feel your determination.

    Matt

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #16
    Options
    Howdy Rachel

    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

  • Sunshine60
    Sunshine60 Member Posts: 81
    #17
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    Yay!!!!!

    So good to see you back and gear such wonderful news!   13 yrs.......... What a journey!   Hope your move goes well and you continue to bounce :). Congrats!

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #18
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    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

    Thanks Pat!

    Thanks Pat!

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #19
    Options
    fishmanpa said:

    I Like It!

    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"

    Thanks T hope you are getting

    Thanks T hope you are getting better everyday!

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #20
    Options
    Hondo said:

    Hi Rachel

     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

    I know its why i am still

    I know its why i am still here, but even though it may stay forever i am fighting and choosing no!

    Happy that you got past isolation i am as far as in front of family but not public.  Faith said her prayers tonight and she asked God that Mommy's tube doesnt hurt her tomorrow!  So sweet!  Fight on Tim! 

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #21
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    Skiffin16 said:

    Allentown ~ Billy Joel

    Congrats ms 13year survivor.....

    Say hello to Billy Joel for me once you hit AllenTown....

    Best Always,

    John

    Funny story about that, Chris

    Funny story about that, Chris took me to Bethlehem to show me the steel mill and truly it is a sight to be hold, you could not walk to give message when operating it is that big you must drive from one end to the other. so we have driven through Allentown many times and there is no steel mill so i asked Chris , why is Billy Joel(whom I love) called and about Allentown but the steel mill is in Bethlehem and he said because it sounded better in the song!  What a shocker i tell you!

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