Thank you to all who post!

 

i posted for the first time this spring when I was frantically searching for a place I could read through other people’s experiences with H and N cancer. My husband was diagnosed with stage iv HPV + Tongue-based cancer on feb 17. He had robotic surgery one week after finding out he had cancer. He did 30 treatments of proton beam radiation. He lost 50 pounds in less than 3 months. It was awful. It was terrifying and horrible and stressful. He couldn’t talk much. He couldn‘t eat or drink. He was in so much pain and yet his pain meds made him feel more awful. He never did get a feeding tube. He should have, but it was one more thing he didn’t want to go through. He did his best to play on the floor with our two little boys, but it was tough.

Fast forward to today. He has gained ten pounds back. His hair grew back quickly in the back where the radiation had swiped through. He is eating almost everything. Pretzels and bread are still hard. He can drink a beer, but water is the easiest. We bought a juicer and are trying to get veggies and fruits in him that way (he has never been a big fan of them). He is working and playing with our boys and smiling more. He continues to have 3 month check-ups, which have been a mix of scans and scopes. 

That cancer changed his outlook on life. A busy, self-driven guy now knows to take a break and enjoy the little things. But there is always a fear of that dang stuff coming back, a fear of not living to 100. And this is why I continue to come back to this site. It is the only place I can ask questions and share my fears and ... hear a response. And I appreciate it so much. I come here to read what others have gone through and how they live their lives today. I come back to read the positive posts. I really need those. 

Some days I forget the hell we went through. And other days I tear up watching our Boys with him and praying they’ll have him in their lives til we’re all old and gray. 

 

So, thank you, all, who open up on this forum, Who respond to those in need of encouragement or truth. 

Cheers to all for a healthy 2018 and beyond!

Comments

  • grace2017
    grace2017 Member Posts: 28
    edited December 2017 #2
    I agree!

    There aren't many places where you can speak to others going through the same things, and I'm thankful for this forum and its archives. 

    My husband has two weeks left in his seven week treatment for state IV, tonsil, SCC, HPV+ and we are in the home stretch.  He is doing fairly well considering where he could be at this point, but we are defnitely entering the awful zone from which we hope to emerge victorious in another few months.  It is hard in the festivities of the season to be away from our kids and in a whole different frame of mind than most people.  We are staying at an apartment connected to the hospital, since it is too far to travel back and forth.  But God is good and reveals Himself to us constantly.  And all the prayers help immensely. 

    Thanks for coming back to post today.  It gives hope that things will get better with time and patience.  And I'm so glad your husband is doing well! My best to you for 2018! 

  • Tilly26
    Tilly26 Member Posts: 30
    grace2017 said:

    I agree!

    There aren't many places where you can speak to others going through the same things, and I'm thankful for this forum and its archives. 

    My husband has two weeks left in his seven week treatment for state IV, tonsil, SCC, HPV+ and we are in the home stretch.  He is doing fairly well considering where he could be at this point, but we are defnitely entering the awful zone from which we hope to emerge victorious in another few months.  It is hard in the festivities of the season to be away from our kids and in a whole different frame of mind than most people.  We are staying at an apartment connected to the hospital, since it is too far to travel back and forth.  But God is good and reveals Himself to us constantly.  And all the prayers help immensely. 

    Thanks for coming back to post today.  It gives hope that things will get better with time and patience.  And I'm so glad your husband is doing well! My best to you for 2018! 

    Thank you!

    thanks for your response! Our best to you and your husband and family! The home stretch is such a good feeling!

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    You're Welcome

    Tilly and Grace, 

    The road traveled has not been easy, nor will it lead completely back to the super highway we once were on. We move foreward the best way we can with what we have to work with. Like Grace's husband, I was going thru treatments over Thanksgiving, Christmas and New Year's. This was after Surgery for Base of Tongue cancer and part of my tongue removed. I had no choice in the matter about the PEG Tube as I needed nutrition. 

    I completed my treatments the first week of Jan. 2005 so in one week, I will be out of treatment for 13 years. Yes, we all look over our shoulders after treatments end. The thought of this beast returning plays on our minds, but each day out from treatment is another day we look forward and less backward. It takes some time to think about it less, both of you will be thinking about it more often currently as you continue the tight schedule of Doctors visits. When things return to a more normal schedule, you may catch yourselves thinking less about what you have been through although it never really leaves us completely. 

    There are some other posters that are 20 plus year survivors, and as Tilly mentioned 100, I am one of those that tell myself that I hope to reach the 100 year mark. I don't smoke, but I want to smoke a cigar like George Burns and Bob Hope if I get there. 

    My Best to Both of You, Your Families and Everyone Here

  • Tilly26
    Tilly26 Member Posts: 30
    Perspective

    thank you for these words. 13 years! That’s great to hear! These are the stories I thrive on. Happy 2018 and cheers to us all on the road to 100!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    MarineE5 said:

    You're Welcome

    Tilly and Grace, 

    The road traveled has not been easy, nor will it lead completely back to the super highway we once were on. We move foreward the best way we can with what we have to work with. Like Grace's husband, I was going thru treatments over Thanksgiving, Christmas and New Year's. This was after Surgery for Base of Tongue cancer and part of my tongue removed. I had no choice in the matter about the PEG Tube as I needed nutrition. 

    I completed my treatments the first week of Jan. 2005 so in one week, I will be out of treatment for 13 years. Yes, we all look over our shoulders after treatments end. The thought of this beast returning plays on our minds, but each day out from treatment is another day we look forward and less backward. It takes some time to think about it less, both of you will be thinking about it more often currently as you continue the tight schedule of Doctors visits. When things return to a more normal schedule, you may catch yourselves thinking less about what you have been through although it never really leaves us completely. 

    There are some other posters that are 20 plus year survivors, and as Tilly mentioned 100, I am one of those that tell myself that I hope to reach the 100 year mark. I don't smoke, but I want to smoke a cigar like George Burns and Bob Hope if I get there. 

    My Best to Both of You, Your Families and Everyone Here

    HooRah

    Semper Fi..

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    Skiffin16 said:

    HooRah

    Semper Fi..

    Semper Fi

    Hey Marine, how are you doing? Glad to see you posting, think of you often. I guess you are busy fishing Smile

    My Best to you and Everyone Here

  • Mom68
    Mom68 Member Posts: 108 Member
    Man I loved reading this

    Isn't this a great group? I love reading posts from people. This is such a compassionate forum. We've got this! Happy 2018! 

  • Tilly26
    Tilly26 Member Posts: 30
    edited January 2018 #9
    Absolutely!!!

    Sure do!!!

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    Good Bye 2017

    T26,

    There is a lot to learn when you join this club, that is if you want too.  I used to be oblivious to cancer, but I don’t have that luxury anymore. 

    Fear of not reaching 100?  Has he crossed 50, 60, 70, 80 & 90? I’d take it one decade at a time, but dream big.

    It sounds like the tough  times are  behind him  I hope he enjoys his new normal.

    Matt

  • JAL23
    JAL23 Member Posts: 88
    I am 29 with Stage 4 tongue

    I am 29 with Stage 4 tongue cancer and entering week 6 of treatment of a total of 35 rads and 3 cisplatins. I plan on living to 100. :)