Squamous Cell Carcinoma

Hello! 

I am new to the site and am seeking some advice and encouragment. My mother, age 74, was recently diagnosed with squamous cell carcinoma of the tongue. She was not a candidate for robotic laser surgery as they determined it would be too extensive for her. She began daily radiation treatments two weeks ago, has a trach in place as a precaution, and takes weekly chemo treatments. She is tolerating the chemo well at this point. Her tongue is swelling and she is losing her ability to speak, which is also exacerbated by the trach and amount of mucous she deals with. I am 32 and married, have 3 daughters 7 and under, and am really feeling helpless. We live 2 hours away, so I have been able to visit. She and I can text and email, which is great. I know she needs a way for she and my dad to better communicate. She has hearing aids and my dad needs them (stubborn!) but it makes it difficult when she can barely talk and he can barely hear! You could laugh if it weren't so heartbreaking! Does anyone have any suggestions for how she can communicate while her speech is so impaired? White board and marker? Is there a machine or some technology that might help her? Anything that you can think of that was comforting to you or your family member? I would be so greatful for any advice! 

Thanks so much. 

Comments

  • stevenpepe
    stevenpepe Member Posts: 234
    Texting

    It may sound funny, but can't they text each other? Assuming they both have smart phones, this is a great way to go. Or, is your dad resistant to communication?

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Communications

    When my husband had a trach before surgery, communications were hard.  There is a piece that goes on the trach that supposedly helps with talking.  It never worked for my husband but then again he was never able to use a cellphone or computer.  Electric tools oh yes he was very good with.  So what he would do is write down what he needed.   Then he had to have his voicebox removed due to cancer.  Thankfully for that there are several methods that help people talk.  I am wondering if an electric larynx would help.  It is a device that you hold up under your chin and can talk with practice.  Talk to her doctors about it.  It does take practice and many times it was hard to understand my husband due to the mucus he produced.   It might work and then again it might not.  I know after surgery, we had a chalk board for my husband to write on and that helped until he could use the electric laryx.

    Wishing you peace and comfort

     

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    Bell

    Blaze, 

    When my wife broke her ankle shortly after I completed my Radiation treatments. I gave her a mid-sized Bell to use when I was anywhere in the house. My voice at that time was only just about a whisper. My hearing isn't the best, so I could hear her ring the Bell then go to where she was and get whatever she needed.

    My Best to All of your family and Everyone Here

  • wmc
    wmc Member Posts: 1,804
    Yes there is ...........

    The whiteboard is what I use when they removed my larynx. I used the 11 x 14 and it was very good for me as you can write fast and large enough to read from a distance. You can use the thin or the bigger thick markers and I liked them the best. It is hard for someone who can speak to understand just how much she will write. I know I was amazed and even frustrated to where if it wasn't really important, it just wasn't worth it. The thin markers would only last 3 days and the bigger ones were so much better as you could write thin or thick, the chisel tip was best.

    They do make a "Boogie Board" which you can write on and just press a button and it's erased just that fast. They are at Amazone, Target, Wal-Mart, Best Buy, Costco,and run about $25 ~$45 depending where. I do know many that have had to use them for years and really like them.  Wal-Mart is $29.98 for the 8.5"

     

    Hope this will help.

    Bill

  • lornal
    lornal Member Posts: 428
    Boogie Board

    As Bill suggested, a boogie board is a great idea.  I also had my larynx removed, and make use of the Boogie Board. 

    I found the ones on Amazon the least costly.   I also bought a small one at Walgreens - but I think that is hit or miss if they have them.

    The white board is a pain and some of those markers smell bad.  That would be an issue during chemo and rads.

     

    Lorna 2007 & 2014

  • SusanUES
    SusanUES Member Posts: 125
    edited May 2016 #7
    Perhaps a tablet?

    When I was at MSK they gave me a tablet to write with and it helped a great deal.  Is your mom facile enough to handle that?  If not, a good old-fashioned easel works just as well.  Or just a notepad.  Your mom and dad can think of it as passing love notes in school.  I sympathize with the stubborn resistance issue...my dad was almost deaf in his nineties and absolutely refused to wear them.  He would shout "speak LOUDER" and we were practically screaming at that point, LOL...and don't even get into the TV blasting at top range.  Good luck!

  • dogwhisper
    dogwhisper Member Posts: 1
    cancer in tonsil area

    My last radiation treatment was a year ago Dec.5. I am suffering from no saliva and also being able to see or balance when I walk. It took over a year not to have to drink the magic for soars and pain. Does anyone have sight problems , that had radiation on the head and throat area?