A friend newly diagnosed

carkris
carkris Member Posts: 4,553 Member
in Head and Neck Cancer #1

hello, i am new here but not new to cancer. I have had breast cancer 3 times. I know the cancer, surgery chemo radation drill with BC but not head and neck cancer. My frind has squamous cell cancre of her tongue.It grew at a rapid rate and they thought  she would have 1/3 of her tongue removed but in 2 weeks it grew and she had 80 percent removed. She had a reconstruction flap done and is still in the ICU. She texted me she misses talking. What do i say? What can I expect in order to support her? realistically.  how will she talk, will she taste anything ever? From reading posts it seems like it will be a long course but what function will she regain? I see eating, dry mouth, are concerns. anyway. i just want to help her. we are both nurses. anything you can say will help. I have talked to someone I met on FB who was here and it was helpful.

 

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    I'm sorry you've had your

    I'm sorry you've had your battles and I'm sorry your friend is fighting as well.  I had different cancer but was unable to talk for some time and I have to say, that was the absolute hardest part of having cancer.  I don't know if she'll ever talk or eat again but as for talking, get a white board and markers for her.  Be very patient as she writes what she wants to say.  Never let her feel like you aren't interested in what she has to say.  I will be praying for both of you.  Please stick with her as she will really need you in her corner.  I truly feel bad for her knowing she cannot talk.  The lack of that ability really cuts us off from the world around us.

    God bless you both,

    dj

  • wmc
    wmc Member Posts: 1,804
    #3
    Sorry for your friend

    I can't answer your questions in a yes or no way. There is too many verables. People who have had much of there tongue removed still can talk. Not as clear as before but they can. It did take lots of work to do it but they did. I had a laryngectomy and removed my larynx, [voice box] and they put in a prosthesis so I can talk. I wanted to be able to whistle and I was told I can never do that, or blow out candles or smell. Well if I can get air in to speak then why cant I whistel and blow out candles? I can, it took two months working at it all day every day but I can whistle and blow up a balloon. It is how hard are you willing to work at it. Will she be able to tast, most likely not much. You do have tastbuds in your mouth other than your tongue so she will get some tast but most likely not much.

    For now what you can do is get her a Boogie Board 8.5 LCD Writing Tablet. You can get them on line at wal-Mart for $29.98 and all the way up to $50 dollars so watch where you get it from. They are great as when you write on it and you wany to errase it you just push a button and it is all gone. They are really neet. A white bord is good and what I used while I was waiting to get the ok from my doctor I could try to talk, 17 days. I had workers ask what that was like. That is very simple, you try to not speak one word and only write everything for just three hours and then you will have an idea what it is like.

    You are a true friend and there is not many in ones life. Just be there and you can even let her know, you don't know what to say other then you are there for her. She has to get an attitude she will beat anything and everything. Most imoprtant, she will have to accept it, which is the hardest. Once I accepted it is when I started to heal. I knew going into surgery what I had to accept so when I woke up I was ok, well as much as I could be. Never give up. I do know a person who not only had most of his tongue removed he also had a laryngectomy, and he could talk. It can be done.

    I will keep you both in my thoughts and prayers.

    Bill

  • lornal
    lornal Member Posts: 428
    #4
    Talking

    I had a total laryngectomy 1.5 years ago.  I had a couple of friends visit that were able to carry 95% of the conversation.  That was wonderful.

    While your friend cannot talk, when you visit, be prepared to carry the whole conversation.  Catch up on news, tv shows, whatever.   The company and conversaition is important.

    And that Boogie Board Bill mentioned is wonderful.  I carry one in my purse for times when people cannot understand me, or it is too loud to talk.

    Lorna 2007 & 2014

  • hwt
    hwt Member Posts: 2,328 Member
    #5
    lornal said:

    Talking

    I had a total laryngectomy 1.5 years ago.  I had a couple of friends visit that were able to carry 95% of the conversation.  That was wonderful.

    While your friend cannot talk, when you visit, be prepared to carry the whole conversation.  Catch up on news, tv shows, whatever.   The company and conversaition is important.

    And that Boogie Board Bill mentioned is wonderful.  I carry one in my purse for times when people cannot understand me, or it is too loud to talk.

    Lorna 2007 & 2014

    Boogie Board

    Got mine at Sam's Club for $20, includes case. Very lightweight. The more yes and no questions in the conversation, the easier it will be for your friend. 

  • carkris
    carkris Member Posts: 4,553 Member
    #6
    hwt said:

    Boogie Board

    Got mine at Sam's Club for $20, includes case. Very lightweight. The more yes and no questions in the conversation, the easier it will be for your friend. 

    Thank you all for your

    Thank you all for your answers. I know she is a determined person and this is a blow and will not be easy. I hope she can be a nurse again becasue she is wonderful at it, the best. We did buy her a Ipad, and a I phone and raised money for her. i will get her the boogie board too. i will try to talk but she was a big talker before but also a good listener. She is going to find out how uninteresting I am !! LOL i wish they had gotten her in immediately. i really hate cancer! Love you all!!!  Keep thriving and surviving. As Chen said (you may know her from chat rooms) "We do what we have to do so we can do what we want to do"!  (Chennie passed but  but she lives with us still)

     

  • carkris
    carkris Member Posts: 4,553 Member
    #7
    carkris said:

    Thank you all for your

    Thank you all for your answers. I know she is a determined person and this is a blow and will not be easy. I hope she can be a nurse again becasue she is wonderful at it, the best. We did buy her a Ipad, and a I phone and raised money for her. i will get her the boogie board too. i will try to talk but she was a big talker before but also a good listener. She is going to find out how uninteresting I am !! LOL i wish they had gotten her in immediately. i really hate cancer! Love you all!!!  Keep thriving and surviving. As Chen said (you may know her from chat rooms) "We do what we have to do so we can do what we want to do"!  (Chennie passed but  but she lives with us still)

     

    My friend is not tolerting

    My friend is not tolerting the tube feedings. Any suggestions?

  • lornal
    lornal Member Posts: 428
    #8
    carkris said:

    My friend is not tolerting

    My friend is not tolerting the tube feedings. Any suggestions?

    Slow

    Need to go slow.  And make sure the food is NOT cold.  I tolerated warm water for flushing and meds.  Formula needed to be room temp.  If some was coming out of fridge, then I mixed it with room temp formula before using.

    lorna 2007 & 2014

  • hwt
    hwt Member Posts: 2,328 Member
    #9
    lornal said:

    Slow

    Need to go slow.  And make sure the food is NOT cold.  I tolerated warm water for flushing and meds.  Formula needed to be room temp.  If some was coming out of fridge, then I mixed it with room temp formula before using.

    lorna 2007 & 2014

    Tube feeding

    Back in 2011 I did very well but when I needed another feeding tube within the last year, I had a terrible time adjusting. I was unable to tolerate jevity at all. I went to Ensure Plus (the plus has an extra 100 calories) and use a kangaroo pump. I was hospitalized twice with malnutrition trying to get it figured out. I can't do bolus or drip. They started the pump out at 60 and I slowly was able to increase. My insurance is providing the pump. You should not lay down while feeding or half hour after. I wanted to feed at night and not be thethered to a pole all day so I use several pillows when I sleep and feed and it has worked out fine.  I always get in 4 cans but with 5 I maintain my weight and with 6 I can actually gain. Hydration and nutrition are key to success. Hopefully, they will figure out what works for you friend quickly. Like Lorna, I kept my formula at room temperature.

  • carkris
    carkris Member Posts: 4,553 Member
    #10
    hwt said:

    Tube feeding

    Back in 2011 I did very well but when I needed another feeding tube within the last year, I had a terrible time adjusting. I was unable to tolerate jevity at all. I went to Ensure Plus (the plus has an extra 100 calories) and use a kangaroo pump. I was hospitalized twice with malnutrition trying to get it figured out. I can't do bolus or drip. They started the pump out at 60 and I slowly was able to increase. My insurance is providing the pump. You should not lay down while feeding or half hour after. I wanted to feed at night and not be thethered to a pole all day so I use several pillows when I sleep and feed and it has worked out fine.  I always get in 4 cans but with 5 I maintain my weight and with 6 I can actually gain. Hydration and nutrition are key to success. Hopefully, they will figure out what works for you friend quickly. Like Lorna, I kept my formula at room temperature.

    her sister says it just sits

    her sister says it just sits in her stomach. I wonder if things are slowed down form the surgery. i am trying to be delicate here. i will pas on the room temp formula.

  • hwt
    hwt Member Posts: 2,328 Member
    #11
    carkris said:

    her sister says it just sits

    her sister says it just sits in her stomach. I wonder if things are slowed down form the surgery. i am trying to be delicate here. i will pas on the room temp formula.

    no helpful answer from me

    Sorry, no experience with that, my issues were the opposite, it was going right through me. 

  • wmc
    wmc Member Posts: 1,804
    #12
    carkris said:

    her sister says it just sits

    her sister says it just sits in her stomach. I wonder if things are slowed down form the surgery. i am trying to be delicate here. i will pas on the room temp formula.

    Not much help...

    I only had a NG tube and it went past my stomach and into my intestines and I did not do well with feeding. When I was hocked to the machine and it was slow I was better. When I had to use the syringe to feed it was very rough. First they keeped it cold and I finily got it to room temp which helped. They wanted me to take 280cc at one feeding. Did not happen as I got sick and cold and shake and almost pass out at 150cc and a water push of 60 cc. I even got into fights with them and said I was not going to make myself sick and take any chance of throwing up as I was not allowad to swallow even sliva I was not going to dammage all the surgery they did. Just take it slower when feeding and more often if needed. Best of luck with it. 

    Bill

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