Introduction

Hello all,

I joined a few weeks ago and have been reading your very helpful hints, which have been invaluable.  My husband was diagnosed in March, Stage 3 SCC of the right tonsil.  He has had 27 radiation treatments and two rounds of Cisplatin, no surgery, no peg. Fortunately, he is still eating some solid foods with the assistance of Magic Mouthwash, and lidocaine.  A little nervous of what the next few weeks will be like since everyone keeps telling us how rough the end of radiation and subsequent weeks will be like.  You are wonderful group with so much knowledge!

Thanks,

Pat

Comments

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    Welcome Pat

    As Phrannie often states, welcome to the club no one wants to join. There are as you have already mentioned, some very knowledgeable people here that have walked the path your husband is traveling. With that all said, feel free to ask your questions as there are those with answers.

    You touched on it a little, the harshness of the effects after treatments are done. Not everyone gets the same effects as the next person. Age, health, etc count on how each of us react afterwards varies.

    My Best to Both of You and Everyone Here

  • kdot2003
    kdot2003 Member Posts: 143
    I didnt anticipate the mucous

    I didnt anticipate the mucous.  I had read about it but wasnt prepared.  My friends acquired me a suction machine.  The rest of the time I just spit ALOT.  I read and read about the mucous and it did end about 3 weeks after treatment.  I wanted to go back to work and I thought how in the world can I do this if I keep spitting every second...not to mention I was dog TIRED.  I didnt try Mucinex because I couldnt keep down squat, tried to push fluids...through my tube.  Just remember if the Mucous comes its not permanent...and there is hope!!!  I think the mucous made my end of treatment worse.  Then again some people dont have much mucous and have to contend with some other stuff!!!! Best Wishes, count the days til the end!!!!!!  You've come such a long way!!!

  • wmc
    wmc Member Posts: 1,804
    edited June 2016 #4
    Welcome to H&N group

    Welcome Pat to the group, and also we wish you never needed it. It sounds like things are going good for now. You will see that you are not alone in this. It can be hard to talk with friends as they do mean well. They just can't image what you are going through, and many will drift away because of that. That is one of the reasons this site is so good, we do really understand how one can feel, scared and just hard to explain what happens when a doctor says, you have cancer. It is like being in an elevator on the 50th floor and the bottom just dropped out. 

    This is even so much harder on caregiver/loved ones. You feel there should be something you should do, but you can't. You can feel his pain, even when he has none. What I found that worked best with my wife was for both of us to talk honestly about what we feel and going through. 

    For me, I only had surgery and they removed my larynx but I still can speak. My wife treats me the same as before. That is what I want and works best. I have a prosthesis in my throat that allows me to talk, tho hard at times, and I breathe through a hole in my neck. So to talk I block the hole and it diverts air. This it the only times she has to treat me a little different as if both hands are full or wet, she has to wait for the answer as I need one hand to block the air. We do get to laugh a lot as several times a day she will ask a question when my hands are full. She just smills and says, I know, take your time.

    Remember we are open 24/7 if you ever just need to vent or an ear to listen.

    Bill

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited June 2016 #5
    welcome

     

    Pat,

     

    Welcome to the H&N forum, 27 is a rough age, but a good rad number.

     

    Your husband is almost through and his procedures for rads seems to be working.  It may get rougher before it is over, but the techs are great (at least mine were).

     

    On my last rad treatment I asked if my wife could watch and she did and she understood what the 7 weeks were about.  Watching is not for everyone, but…….

     

    Keep drinking water and swallowing.

     

    Try eating everything until you find what works best.  Smoothies are a life saver.

     

    Don’t be mad, be happy, no matter what.  If the treatments are successful the “new normal” is right around that big stinking corner and will be ok.

     

    Matt

     

  • Raddude
    Raddude Member Posts: 84
    Hi Pat

    As others have said, the end is tough. My last two weeks were tough, the last one was very hard. I remember the last day when they took the mask off and I  was literally had tears coming down with joy that it was done. It was done but not over the next few weeks were difficult but manageable. Time begins to feel different after a few weeks and the new normal begins to set in and it is pretty darn good.

  • Barbaraek
    Barbaraek Member Posts: 626
    Hi Pat and welcome

    I am a caregiver too - my husband had nasopharyngeal cancer, stage 4. We had a rough time of it duriing and after treatment for a while. I think our turning point was about 4-6 weeks following treatment. Everyone is different. He had really severe mucositis. Hang in there and visit this board often for questions/answers, suggestions, support, and a safe place to vent. Try to do something nice for yourself as well - take a walk, read a book, do a craft if you like. You don't realize what a weight you are carrying until you put it down for a few minutes.

    It helped me to zoom in and out with my perspective - zoom in and go day by day when it's really tough, zoom out and look at the progress you've made when it seems like you are going nowhere. Sometimes change and progress is so slow you don't realize it unless you take a broad perspective. Other days you just have to put one foot in front of the other. The key concept is you don't have to do it alone - we're here, and hopefully you have some support in the form of family, neighbors and friends. Don't be afraid to ask for support!

    Barbara

  • ocallaghmp
    ocallaghmp Member Posts: 2
    Barbaraek said:

    Hi Pat and welcome

    I am a caregiver too - my husband had nasopharyngeal cancer, stage 4. We had a rough time of it duriing and after treatment for a while. I think our turning point was about 4-6 weeks following treatment. Everyone is different. He had really severe mucositis. Hang in there and visit this board often for questions/answers, suggestions, support, and a safe place to vent. Try to do something nice for yourself as well - take a walk, read a book, do a craft if you like. You don't realize what a weight you are carrying until you put it down for a few minutes.

    It helped me to zoom in and out with my perspective - zoom in and go day by day when it's really tough, zoom out and look at the progress you've made when it seems like you are going nowhere. Sometimes change and progress is so slow you don't realize it unless you take a broad perspective. Other days you just have to put one foot in front of the other. The key concept is you don't have to do it alone - we're here, and hopefully you have some support in the form of family, neighbors and friends. Don't be afraid to ask for support!

    Barbara

    Thank you

    Hi Barbara,

    Thank you for your kind words.  Some days are very stressful, I am sure you know.  My husband does not have a peg tube and fortunately has only lost about 10 lbs. But that being said, he is pretty much off solid foods and trying to get the necessary calories in each day is a constant struggle. He still has three more radiation treatments and from reading these boards and what the doctor's told us, the worse is yet to come after treatment.

    These boards are a great resource with wonderful information.

    Pat