new member 1 year post surgery. still need help

slocook
slocook Member Posts: 5
in Head and Neck Cancer #1

Last December I had a total Laryngectomy and Lymph Node removal. I kept /keep a P.M.A. But I'm still very depressed.

I see A Doctor for this I'm on meds but they don't seem to make much of a change in how I feel.

I've read some books and talked with the surgens they assure me I'll be fine. every night I go to sleep thinking I not waking up. I take hours to fall asleep. I take sleeping pill chase that with a liquid sleep aid and just lay there. I lisyen to classical music I play that softly to try and relax me.

I still wear a tube. i try to remove it for periods time, but the stoma shrinks so much i have to force it back in even lubed up. when does the stoma stop shrinking and settle in to size? I haven't been able to get a straight answer. 

I have a lot moe questions , but don't want to sound like a baby. I'm not. 80% of the time I'm upbeat happy glad to be walking among the world.

come the end of the day...

your new friend

Carl

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Hang in There Carl..

    I can only offer to stay focused on the positives that you already have.. And even though it's been said many times, it's basically truth.. Live your life to the fullest, concentrate on what you have and try not to dwell on the what ifs..

    There's nothing that you can do anymore than what you are doing and have done.., you have no control on the future, other than what you make of it.

    Think positive and stay positive.., believe me, that in itself will help you more than you realize..

    Best,

    John

  • wmc
    wmc Member Posts: 1,804
    #3
    Welcome to the H&N Group

    Welcome to the group, but sorry you need to be here. I had my Laryngectomy Oct 2013 and neck dissection on both sides, took 86 glands. I hace been lucky as I never had a lary tube ot button even after the surgery. My stoma took a litle while and just took shape and is almost round. Falling asleep can be hard as when you lay down and it's quite is when your mind starts raceing everything. Do you get out and go to stores? Also do you have a support group near by as it can really help. If you are nor aware of the WebWhispwer which is world wide for Laryngectomee and throat cancer you might look into it. This is the best for cancer and we do have a few larys. http://www.webwhispers.org/  This is a link to WebWhispers. They also have a forum, and a Facebook page that is Secret. They did that so the members can be free to talk openly and only members can see it and also you can't see members names and bother them unless you are a member. If that is something you might like or help let me know and I can get you set up on the facebook group, and assist on the forum as well.
    It is so often that cancer patients get PTSD and Lary's as well. It is very hard to find a SLP to work with. If I may ask what form of speach do you use, ES, EL, TEP, or writing. 
    You are not alone in this. You have found the best support group you can find. Let us know how we can help. It helps just knowing people do understand how you feel and are going through.

    Bill  Oct 2013

  • lornal
    lornal Member Posts: 428
    #4
    Hi Carl!

    Hi Carl.  I'm a lary too - had my surgery January 2014.  It was my second H&N cancer. The first was tonsil in 2007, with surgery, chemo, and rads.  THis time, just surgery.  Thank goodness!

    I'm 53 now - never a smoker or drinker.  Just "unlucky" I guess.  I went back to work part-time.  Don't have the endurance - physically or mentally - to handle 40 hours a week.  Forturnately, my company has long term disability that allows me to work part-time.

    If your doing well 80% of the time, I'd say you are doing pretty well.

    After two years - I have my moments.

    Have you been involved with a laryngectomy support group?  I don't know if support is the right word for most groups.  It is good to socialize and learn from people like us!  I am an officer for NuVoice of Greater St. Louis.  We are getting our group active again after being defunct for a couple of years.

    You should look into it - and into WebWhispers.org.

    Lorna

    2007 & 2014

  • slocook
    slocook Member Posts: 5
    #5
    Skiffin16 said:

    Hang in There Carl..

    I can only offer to stay focused on the positives that you already have.. And even though it's been said many times, it's basically truth.. Live your life to the fullest, concentrate on what you have and try not to dwell on the what ifs..

    There's nothing that you can do anymore than what you are doing and have done.., you have no control on the future, other than what you make of it.

    Think positive and stay positive.., believe me, that in itself will help you more than you realize..

    Best,

    John

    hanging in there

    Thank you Skiffin 16 for your kind and encouraging words.

    I've always nkown that I have no control over my life.(even though i'm a control freek). I've always tried to let God take care of most of that. however we've been on poor terms lately and are working on a resolve.

    If you hel me stay on my positive side, I'm sure things will turn around.

     

    thanks, slocook

  • slocook
    slocook Member Posts: 5
    #6
    wmc said:

    Welcome to the H&N Group

    Welcome to the group, but sorry you need to be here. I had my Laryngectomy Oct 2013 and neck dissection on both sides, took 86 glands. I hace been lucky as I never had a lary tube ot button even after the surgery. My stoma took a litle while and just took shape and is almost round. Falling asleep can be hard as when you lay down and it's quite is when your mind starts raceing everything. Do you get out and go to stores? Also do you have a support group near by as it can really help. If you are nor aware of the WebWhispwer which is world wide for Laryngectomee and throat cancer you might look into it. This is the best for cancer and we do have a few larys. http://www.webwhispers.org/  This is a link to WebWhispers. They also have a forum, and a Facebook page that is Secret. They did that so the members can be free to talk openly and only members can see it and also you can't see members names and bother them unless you are a member. If that is something you might like or help let me know and I can get you set up on the facebook group, and assist on the forum as well.
    It is so often that cancer patients get PTSD and Lary's as well. It is very hard to find a SLP to work with. If I may ask what form of speach do you use, ES, EL, TEP, or writing. 
    You are not alone in this. You have found the best support group you can find. Let us know how we can help. It helps just knowing people do understand how you feel and are going through.

    Bill  Oct 2013

    welcome to H&N

    Thanks for the greetings.

    We seem to have very simular procedures- except you were lucky with your stoma resulys. Mine is still forming.

    whn I remove the tube for as little as 1 hour it's a fight to put it back in.I have a new tube as of last week. It does not require a collar. It's con-cave at the stoma opening, thinner and much softer. With out the collar I'm able to use my electronic larynx(EL) but still do a lot of writing. 

    i guess the hardest thig for me to get over is the feeling of uselessness. I tried to return to work last July. It didn't work out so well. People complained they couldn't understand me and by the time I had written it out the subject had moved on. as the department lead this was hard to take, I had one person just walk away while I was trying ti explain something. my efficiencies were down, I was frustrated so I resigned. Now I contribute nothing to the household.

    I am working on activities. There are no groups here in Minneapolis. I'm sure I'm not the only one around here with a Laryngectomy. so I'm going to try ang start my own group. If I can find a few people to meet for breakfast or lunch we could just talk, about anything. Price of gas, weather, corn crops who likes Walmart or maybe even our troubles.

    so if you know of anyone up here give them my e-mail carlschram@gmail.com 

    thanks for everything, it's nice to talk to someone thats not a family member or a doctor.

    I'm sure we will be in touch.

    slocook

     

     

     

  • slocook
    slocook Member Posts: 5
    #7
    lornal said:

    Hi Carl!

    Hi Carl.  I'm a lary too - had my surgery January 2014.  It was my second H&N cancer. The first was tonsil in 2007, with surgery, chemo, and rads.  THis time, just surgery.  Thank goodness!

    I'm 53 now - never a smoker or drinker.  Just "unlucky" I guess.  I went back to work part-time.  Don't have the endurance - physically or mentally - to handle 40 hours a week.  Forturnately, my company has long term disability that allows me to work part-time.

    If your doing well 80% of the time, I'd say you are doing pretty well.

    After two years - I have my moments.

    Have you been involved with a laryngectomy support group?  I don't know if support is the right word for most groups.  It is good to socialize and learn from people like us!  I am an officer for NuVoice of Greater St. Louis.  We are getting our group active again after being defunct for a couple of years.

    You should look into it - and into WebWhispers.org.

    Lorna

    2007 & 2014

    hello

    Hello,

    I like the nick-name Lary   perfect.

    My first run at this was in 2012. I had laser surgery, remover one vocal cord nor chemo or rad. I thought i was golden.

    a year went by check up good had a second biopsy thats was good, I started smoking again. checkups still good, then October 2014 there it was, now here I am.

    I'm 61 yrs old, married live in Minneapolis. Empty Nesters. 

    Minneapolis has no group and there are only two I can find in all te state and there 100+ miles away.

    so, I'm think of starting my own group. Even if it's just one other. we could meet for breakfast and talk about whatever.

    The webwhisper sounds like something I should also look into, after the laser surgery in 2012 my computer pasword was whisper   lol 

    thanks for your understanding, we will keep in touch

    slocook    carl

  • MrsBD
    MrsBD Member Posts: 615 Member
    #8
    Welcome

    Hi, Carl.

    Welcome to the group. You will find great support from the people on this site. I sure have! My experience is different from yours, but I wanted to suggest you check with some of the large hospitals in Minneapolis. Here in Milwaukee, I blog about cancer for Froedtert Memorial Lutheran Hospital, the largest regional medical center in the area. There are people who have dealt with many different cancers who share their experiences and advice. Mayo might have a similar group or be able to connect you with other patients. Because of HIPPA, you have to give permission for your name to be shared, so I told my doctors to give my information to other patients and I have since met a few. It's helpful to talk to people who understand what you've experienced. I will add you to my prayers. Here's a link to the blogs. If you need help navigating the site, send me an email. http://www.froedtert.com/together/about

     

     

  • wmc
    wmc Member Posts: 1,804
    #9
    Larys in MN

    If you join WebWhispers you can fine some in your area

    image

    image

    Bill

  • Barbaraek
    Barbaraek Member Posts: 626
    #10
    Carl

    I'm very glad you found us, but very sorry that you needed to find us. There are several posters on here who have had laryngectomies and they can give you lots of info and suggestions. Most of all, we can all offer support and encouragement.

    Barbara

  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
    slocook said:

    welcome to H&N

    Thanks for the greetings.

    We seem to have very simular procedures- except you were lucky with your stoma resulys. Mine is still forming.

    whn I remove the tube for as little as 1 hour it's a fight to put it back in.I have a new tube as of last week. It does not require a collar. It's con-cave at the stoma opening, thinner and much softer. With out the collar I'm able to use my electronic larynx(EL) but still do a lot of writing. 

    i guess the hardest thig for me to get over is the feeling of uselessness. I tried to return to work last July. It didn't work out so well. People complained they couldn't understand me and by the time I had written it out the subject had moved on. as the department lead this was hard to take, I had one person just walk away while I was trying ti explain something. my efficiencies were down, I was frustrated so I resigned. Now I contribute nothing to the household.

    I am working on activities. There are no groups here in Minneapolis. I'm sure I'm not the only one around here with a Laryngectomy. so I'm going to try ang start my own group. If I can find a few people to meet for breakfast or lunch we could just talk, about anything. Price of gas, weather, corn crops who likes Walmart or maybe even our troubles.

    so if you know of anyone up here give them my e-mail carlschram@gmail.com 

    thanks for everything, it's nice to talk to someone thats not a family member or a doctor.

    I'm sure we will be in touch.

    slocook

     

     

     

    My mom was a lary...

    ...and she did just what you're thinking of doing.  She started a group since there wasn't one.  Amazingly, right here in podunk Montana, she found 8 people that were interested in joining, and they took in new lary's as they came in from the ENT's office.  They ended up with 12 people....and they had a great time.  Summer picnics, Xmas party, plus monthly get togethers.

    There is only one ENT office here, but they were allowed to put out flyers in the waiting room. 

    p

  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    Carl

    I too Welcome you to CSN H&N, glad you are here just wish it was not because of C, but anyway glad to meet you.

     

    Tim

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