Well we made it ten years, but it's back

Em11
Em11 Member Posts: 15 Member
in Head and Neck Cancer #1

In late 2010 to early 2011, my husband had basal tongue and salivary gland cancer.  He went through chemo, robotic surgery, and radiation, and all the follow up therapy.  We thought we had gotten past it and were home free.   We've been traveling, eating whatever my husband wanted, he's been singing and playing music, speaking publicly, and living life for ten eyars. But in February of this year, 2021, he was diagnosed with stage 3 laryngeal cancer. We've sought several opinions, but resigned ourselves to him having a total laryngectomy. Due to all the radiation and surgery of ten years ago and the mess it left, doctors said simple removal and radiation was not an option again. They said it would only be palliative. So here I am, three days after his laryngectomy surgery, sitting here with him in ICU, and I am heartbroken for him. He sings, he's a chef, he speaks publicly, and where do we go from here. I'm scared for him.  What is his quality of life going to be like?  He's never been a smoker.  Doesn't over drink.  His first cancer was HPV based.  I just can't believe this is happening again.  This group was so helpful for us before.  I learned so much.  And now I'm back.  He's alive though, thank goodness.  I guess I'm just sad and scared. 

Comments

  • ERomanO
    ERomanO Member Posts: 323 Member
    #2
    Very sorry to hear this...

    And after 10 years I can only imagine how disheartening it must be.  I know it's easy for me to say, but life is what we make of it.  Sometimes our lives are changed in ways we never imagined (and not in a good way) and all we can do is make the best of it.  I've been a guitarist most of my life and it's a big part of who I am.  All it would take is to develop a rapidly advancing case of arthritus in my left hand to end that.  At that point I would have to turn to something else to occupy the need for artistic expression.  I have no idea what that would be, but I would have to replace that part of my life with something else.  Maybe your husband will become a prolific writer.

    I wish nothing but the best for you and your husband.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #3
    Em11 We Are

    Glad when you visit the forum but not this way I am sorry this evil disease came back on your husband again. We just never know. There was a lady on our local support group that was 8 years past treatment and she got cancer again. I myself was almost 5 years out from throat cancer treatment and ended up getting a spot on my tongue that was removed with clear margins. Then about 1 1/2 years later I got lymph node cancer in the neck that was operated on. Each time we hope it's the last but sometimes it isn't. I say all this to let you know you are not alone as there are a number of people here that have had a second bout with cancer. When you are that many years out you can feel confidant but maybe not as seen in your husband's case and that's why once we have cancer we are never 100% comfortable deep inside again there is always that tiny what if lurking in the back of our mind. I am glad his operation is over and that they got all the cancer. I realize this is very upsetting but believe you folks will find a different pathway in life and keep going. Granted there may be some major changes but I don't think your husband will let this get him down. Lean on your cancer team for any help or other things you may need and when I had my first cancer I had a Nurse Navigator and maybe you do too, she was and is still a great help. Also, please private message Bill known on here as (wmc) as he had a full laryngectomy and other procedures. He also runs a support group or 2 in support of laryngectomees. Please contact him he is a great supporter and is happy to help. Here is his CSN page and just click contact user and follow the instructions.   https://csn.cancer.org/user/218705

    Also here is a link to a discussion of this site pertaining to your situation  https://csn.cancer.org/node/306376

    And here is an excerpt from Bill in that discussion about his laryngectomy--

    Your husband has gone through the Radiation and might have been given what is a full dose. There is only so much a body will take. Now I'm no doctor, but I was only given one choice to live. My lungs have severe Bullous emphysema and chronic bronchitis. Stage 3 COPD. I was told this was my only hope. I had the surgery Oct. 2013 and have been cancer free ever since. Having a full laryngectomy is a major change in life, but it is something you can live with. Much of what you might read is incorrect in that "they" say you can't do this and can't do that. I was told so many things that I can't do because I am a "Neck Breather". Ony one problem, I can do just about anything I want. So much so my doctor and SLP [Speech, Language, Pathologist] asked if I would make videos on YouTube so they could share them with new patients.

    AS Lornal said, you might want to look at WebWhispers.org  I put a link for you. I do recommend joining, but you can look through the library without joining. I understand his reluctance to having the surgery as it is for life. The key word here is Life. Yes, I have lost being able to really smell, but I still can detect many smells, and there is a way you can draw in air with your cheeks to smell. Me, I made a crazy device that lets me smell and blow my nose which they say you can't do. I can even blow my nose without any device. I also can whistle which I am told I can't do. You should have seen their faces when I blew up a Balloon, thought she was going to fall over. That was right after I was told it can't be done.  WebWhispers has their website and a forum as well [all free] I host the Forum and an Admin for the Facebook Group. We support worldwide throat cancer, Laryngectomee's and caregivers too. I will include a video for you, which is me talking [I have no vocal cords and removed my layrnx] and blowing up a balloon. We even have one member who had to also have all of his tongue removed and can not speak at all. He still works as a Cashier at Lowes.  Take a look at the website as we have over 1600 in our email list and 600 on the Facebook Group. IF you are interested in the facebook Group it is a Secret Group and it was done so you can be free to say what you need to and only members can see it. No one can even see who is a member. If it's something you might be interested in you can reach me on Facebook. Type in   william.cross.752  Send a friend request and also message saying you would like to join and I can take care of that. I don't get on this one like I use to. I keep so busy with the other so much with the Forum and their Facebook Group.  For me, having the laryngectomy has been a gift of life.
    I hope this will help answer some questions as to why they are recommending it.  Have him record his voice now. He may want it later to listen to, I do mine.

    Wishing You The Best-Take Care-God Bless-Russ

     

  • Kimmy Poo
    Kimmy Poo Member Posts: 32 Member
    edited April 2021 #4
    wbcgaruss said:

    Em11 We Are

    Glad when you visit the forum but not this way I am sorry this evil disease came back on your husband again. We just never know. There was a lady on our local support group that was 8 years past treatment and she got cancer again. I myself was almost 5 years out from throat cancer treatment and ended up getting a spot on my tongue that was removed with clear margins. Then about 1 1/2 years later I got lymph node cancer in the neck that was operated on. Each time we hope it's the last but sometimes it isn't. I say all this to let you know you are not alone as there are a number of people here that have had a second bout with cancer. When you are that many years out you can feel confidant but maybe not as seen in your husband's case and that's why once we have cancer we are never 100% comfortable deep inside again there is always that tiny what if lurking in the back of our mind. I am glad his operation is over and that they got all the cancer. I realize this is very upsetting but believe you folks will find a different pathway in life and keep going. Granted there may be some major changes but I don't think your husband will let this get him down. Lean on your cancer team for any help or other things you may need and when I had my first cancer I had a Nurse Navigator and maybe you do too, she was and is still a great help. Also, please private message Bill known on here as (wmc) as he had a full laryngectomy and other procedures. He also runs a support group or 2 in support of laryngectomees. Please contact him he is a great supporter and is happy to help. Here is his CSN page and just click contact user and follow the instructions.   https://csn.cancer.org/user/218705

    Also here is a link to a discussion of this site pertaining to your situation  https://csn.cancer.org/node/306376

    And here is an excerpt from Bill in that discussion about his laryngectomy--

    Your husband has gone through the Radiation and might have been given what is a full dose. There is only so much a body will take. Now I'm no doctor, but I was only given one choice to live. My lungs have severe Bullous emphysema and chronic bronchitis. Stage 3 COPD. I was told this was my only hope. I had the surgery Oct. 2013 and have been cancer free ever since. Having a full laryngectomy is a major change in life, but it is something you can live with. Much of what you might read is incorrect in that "they" say you can't do this and can't do that. I was told so many things that I can't do because I am a "Neck Breather". Ony one problem, I can do just about anything I want. So much so my doctor and SLP [Speech, Language, Pathologist] asked if I would make videos on YouTube so they could share them with new patients.

    AS Lornal said, you might want to look at WebWhispers.org  I put a link for you. I do recommend joining, but you can look through the library without joining. I understand his reluctance to having the surgery as it is for life. The key word here is Life. Yes, I have lost being able to really smell, but I still can detect many smells, and there is a way you can draw in air with your cheeks to smell. Me, I made a crazy device that lets me smell and blow my nose which they say you can't do. I can even blow my nose without any device. I also can whistle which I am told I can't do. You should have seen their faces when I blew up a Balloon, thought she was going to fall over. That was right after I was told it can't be done.  WebWhispers has their website and a forum as well [all free] I host the Forum and an Admin for the Facebook Group. We support worldwide throat cancer, Laryngectomee's and caregivers too. I will include a video for you, which is me talking [I have no vocal cords and removed my layrnx] and blowing up a balloon. We even have one member who had to also have all of his tongue removed and can not speak at all. He still works as a Cashier at Lowes.  Take a look at the website as we have over 1600 in our email list and 600 on the Facebook Group. IF you are interested in the facebook Group it is a Secret Group and it was done so you can be free to say what you need to and only members can see it. No one can even see who is a member. If it's something you might be interested in you can reach me on Facebook. Type in   william.cross.752  Send a friend request and also message saying you would like to join and I can take care of that. I don't get on this one like I use to. I keep so busy with the other so much with the Forum and their Facebook Group.  For me, having the laryngectomy has been a gift of life.
    I hope this will help answer some questions as to why they are recommending it.  Have him record his voice now. He may want it later to listen to, I do mine.

    Wishing You The Best-Take Care-God Bless-Russ

     

    Now that I can see through the tears

    Bill that was the most inspiring video I have ever seen. 

    You CAN blow up a balloon. 

    You CAN do more than you think you can do; just gotta practice.

    AMEN.

    I want to show hubby Bucket this.

    He is just now finishing up last 3 radiations and prognosis is good.

    I want to show him how others with worse situations can overcome "you can't do that"!

    Oh yes you can!

    It's just brutal watching him go through the pain.

    No! He won't take pain meds after the trip to Emergency last week and waiting the 8 hours for the turbo enema.

    I am 6 time cancer survivor and I've learned not to curl up and die.

    SMILE.

    JOKE.

    LOVE.

    LIVE.

  • Mainestateofmind
    Mainestateofmind Member Posts: 16 Member
    #5
    You are not alone

    I have no wise words to add to those above; know that you are not alone and that many of us are holding your hand as you go through this.  I know what you mean when you say you are sad and scared.

    My husband's HNC is his 4th cancer diagonosis.  We are focusing on getting through this treatment and then heading out into a hopefully more Covid-free time to visit family and friends.

    Blessings to you.

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