Do you ever stop worrying

jackflash22
jackflash22 Member Posts: 524 Member

now I'm swallowing again, which im over the moon with...I've started to worry ....what if.....the liquid or food dribbles into my lungs while it's going down. Do you know/feel if it's going the wrong way. I shouldn't be worrying about this, I read about people going into hospital because they get pneumonia from food going into their lungs. I've managed sips of water and after I had my third dilation yesterday I tried a drop of formula through a straw. I do have a little cough after each try but it could be because my throat isn't used to having anything down it. I've been told by the doc that did the dilation I can try things like shakes, soft foods etc but I'm a little scared. When I drink cold water I can feel it going down my throat to my stomach but still worry some may be going the wrong way. Can I ever  stop feeling that something is going to go wrong. I want to get on with the rest of my life without these worries but they pop up into my mind........is there any one out there who feels 100% secure after H&N.

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Comments

  • MarineE5
    MarineE5 Member Posts: 1,029 Member
    J 22

    You posted a good question, anyone feel 100% secure after H&N cancer. I can only give you my feelings. As I got further out from my surgery and treatments, I felt better that more than likely I have beaten the beast. Unfortunately, a different cancer popped up and it just hit me harder then the first one. That was roughly one year out.

    I had gone a good spell reaching the 5 yr mark without anymore issues. I looked over my shoulder less and looked forward more at that point. But, I have to honestly say, I am not 100% comfortable as I am aware of what I have been thru, much like everyone here, it is part of our history. Each of us wrote a chapter in our book of life that we didn't want to. But, we have adjusted to what we have been dealt and move on.

    Each day I am reminded by the scars on my neck, so we will never forget, I don't worry now, but I keep an eye open to what could possibly happen again. I feel that if I worry all the time, that takes away from the time I can be happy and enjoy myself with family and friends.

    I am retired now, so I have plenty of time to worry if I wanted to. I choose to volunteer with a Marine Corps League and tinker around the house to keep my mind busy. I recently passed my 10 yr mark.

    My Best to You and Everyone Here

  • Grandmax4
    Grandmax4 Member Posts: 723
    Worrying lets the beast win

    JackFlash22, I did end up in the hospital with asperation pneumonia, it was very early after my surgery for epigottis cancer. The epiglottis is a flap of muscle, that opens when you swallow and shuts to keep food out of your lungs. I no longer have one and honestly thought I'd never eat regular again. I had extensive speech therepy after healing, it included relearning to swallow...when I first started swallowing soft food, I didn't realize I was asperating until one morning, I could hardly breath, a trip to er and admittance confirmed it. I then was given a barium swallowing test and to my therepist surprise, I was one of few people, that did not need to tuck their chin...anyway, it's been 3 years 4 months and I'm eating everything...I don't worry, I refuse to let the beast win...am I aware, yes..like everyone on this board, we've fought the toughest battle  and I'm sure we're all aware...you've had some difficult problems, but, try not to worry...ask about speech therepy..

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    jf, i'm ecstatic that you can

    jf, i'm ecstatic that you can swallow!  i'm sorry that you are worrying.  but i do understand.  i often wonder when I swallow and cough really bad if that has happened to me.  i don't know what its like so i can't say for you or me but I hope your are not and that you can finally enjoy eating again.  sending prayers and positive mojo your way.

    God bless you,

    dj

  • BudStamm
    BudStamm Member Posts: 19
    Im new.....but I cant imagine

    Im now but I cant imagine ever now worrying. It very much part of your life now and always will be....forever. Yes you can say worrying etc lets cancer win....what lets cancer win is if you let the worry disrrupt you life....change your life...your realationhips with family and friends. Living each day one day at a time....cherishing each moment with friends and family....what will be will be....making the best of life

     

    Bud

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Good Question

    I honestly think the short answer is "No".

    Whether its "scanxiety" or the many ramifications of mental afflictions associated with serious illnesses or just the every day challenges we face outside of our health, we never really stop worrying. The difference is the degree in which we devote to it. 

    For me, at nearly two years out, I'm finally getting to a place with my "new normal" that's comfortable. I've been told by my team that for all intents and purposes, my cancer is gone. If something is going to take me out, it won't be a recurrence of the original cancer. Does that mean I don't worry? No. Mets to other sites, a different cancer, heart disease etc. These are all possibilities. BUT... the original cancer at this point? No. I feel a huge weight lifted off my shoulders. 

    I do have side effects and I do have anxiety issues due to my cancer. The anxiety causes physical symptoms that are concerning. I've recently recognized a pattern. The last year, when "scope, poke and prod" time comes, I get what many call "scanxiety". At first it was intense but as time has gone on, I've not felt it as much. That being said, although I've not consciously felt the ramifications, subconsciously I have. I believe the lastest incidence of chest pain which prompted cardiologist visits and stress test was due to "scanxeity" as it coincided with my "scope, poke and prod" at JH. The test proved to be negative and while I'm still feeling the pain to a degree, it's lessening. I have a "chill pill" I can start taking a few weeks prior to the appointments but I've not done so the last two appointments. Maybe the fact that I'm coming up on the big two year mark had something to do with it but my body seems to have reacted to the stress in a negative way.

    Sorry for rambling but I think it helps me and others to put this out there. We're different. We've been to the brink and back. Especially the type of cancer and treatment we've undergone. Some say zombies aren't real. I beg to differ. As Survivors we're zombies for a period of time in our lives. That few weeks in to 3-9 month period when the treatments kick in until you start to awake from drug induced narcotic fog and try to begin to live again is a difficult adjustment. In retrospect, it's like a dream. The pain, the needles, tubes, drugs etc. WHEW!

    We all need to seek help in adjusting and not be shy to ask if we need it. We need to understand and learn coping skills. The scars are real both physically and mentally. Recovery is both physical and mental and we need to be consistent on working on both. Therapy and meds if needed for the mental aspect and exercise and PT for the physical. Like the swallowing exercises... every day for life peeps! There will always be "what ifs" in the back of our minds. In many ways that's helpful. It's our human nature to be alert to physical threats. The fight or flight response. I don't get regular scans. I was concerned about that. When I expressed my concern, my team told me that I would "know" when something wasn't right. I believe that. I'm more aware now of things that just don't "feel" right and won't be shy in bringing them up. Until then, we need to work on our "new normal", whatever that is for us and keep on putting one foot in front of the other. 

    Positive thoughts and prayers

    "T"

     

     

  • jackflash22
    jackflash22 Member Posts: 524 Member
    MarineE5 said:

    J 22

    You posted a good question, anyone feel 100% secure after H&N cancer. I can only give you my feelings. As I got further out from my surgery and treatments, I felt better that more than likely I have beaten the beast. Unfortunately, a different cancer popped up and it just hit me harder then the first one. That was roughly one year out.

    I had gone a good spell reaching the 5 yr mark without anymore issues. I looked over my shoulder less and looked forward more at that point. But, I have to honestly say, I am not 100% comfortable as I am aware of what I have been thru, much like everyone here, it is part of our history. Each of us wrote a chapter in our book of life that we didn't want to. But, we have adjusted to what we have been dealt and move on.

    Each day I am reminded by the scars on my neck, so we will never forget, I don't worry now, but I keep an eye open to what could possibly happen again. I feel that if I worry all the time, that takes away from the time I can be happy and enjoy myself with family and friends.

    I am retired now, so I have plenty of time to worry if I wanted to. I choose to volunteer with a Marine Corps League and tinker around the house to keep my mind busy. I recently passed my 10 yr mark.

    My Best to You and Everyone Here

    congrats

    congrats on getting to your 10year mark, must feel pretty good.

  • phrannie51
    phrannie51 Member Posts: 4,716
    I have noticed in the last

    8 or 9 months that my "worrying" has faded....by degrees.  It has probably always been lessening, but because it's by degrees I didn't notice it for a long time.  The space of time between the last time I was worried and the current time I am worrying has grown further and further apart.  I spend more time not fretting than fretting....must have crossed the half-way mark....LOL.  And....I can't say I did anything really in the way of getting all that worry to go away....time and good checkups and scans have done the most to lighten the load.

    p

  • jackflash22
    jackflash22 Member Posts: 524 Member
    fishmanpa said:

    Good Question

    I honestly think the short answer is "No".

    Whether its "scanxiety" or the many ramifications of mental afflictions associated with serious illnesses or just the every day challenges we face outside of our health, we never really stop worrying. The difference is the degree in which we devote to it. 

    For me, at nearly two years out, I'm finally getting to a place with my "new normal" that's comfortable. I've been told by my team that for all intents and purposes, my cancer is gone. If something is going to take me out, it won't be a recurrence of the original cancer. Does that mean I don't worry? No. Mets to other sites, a different cancer, heart disease etc. These are all possibilities. BUT... the original cancer at this point? No. I feel a huge weight lifted off my shoulders. 

    I do have side effects and I do have anxiety issues due to my cancer. The anxiety causes physical symptoms that are concerning. I've recently recognized a pattern. The last year, when "scope, poke and prod" time comes, I get what many call "scanxiety". At first it was intense but as time has gone on, I've not felt it as much. That being said, although I've not consciously felt the ramifications, subconsciously I have. I believe the lastest incidence of chest pain which prompted cardiologist visits and stress test was due to "scanxeity" as it coincided with my "scope, poke and prod" at JH. The test proved to be negative and while I'm still feeling the pain to a degree, it's lessening. I have a "chill pill" I can start taking a few weeks prior to the appointments but I've not done so the last two appointments. Maybe the fact that I'm coming up on the big two year mark had something to do with it but my body seems to have reacted to the stress in a negative way.

    Sorry for rambling but I think it helps me and others to put this out there. We're different. We've been to the brink and back. Especially the type of cancer and treatment we've undergone. Some say zombies aren't real. I beg to differ. As Survivors we're zombies for a period of time in our lives. That few weeks in to 3-9 month period when the treatments kick in until you start to awake from drug induced narcotic fog and try to begin to live again is a difficult adjustment. In retrospect, it's like a dream. The pain, the needles, tubes, drugs etc. WHEW!

    We all need to seek help in adjusting and not be shy to ask if we need it. We need to understand and learn coping skills. The scars are real both physically and mentally. Recovery is both physical and mental and we need to be consistent on working on both. Therapy and meds if needed for the mental aspect and exercise and PT for the physical. Like the swallowing exercises... every day for life peeps! There will always be "what ifs" in the back of our minds. In many ways that's helpful. It's our human nature to be alert to physical threats. The fight or flight response. I don't get regular scans. I was concerned about that. When I expressed my concern, my team told me that I would "know" when something wasn't right. I believe that. I'm more aware now of things that just don't "feel" right and won't be shy in bringing them up. Until then, we need to work on our "new normal", whatever that is for us and keep on putting one foot in front of the other. 

    Positive thoughts and prayers

    "T"

     

     

    Thanks folks

    thanks for your replys.  I'm reassured with your remarks. I will get used to swallowing again. My kids are getting me a Nutribullet blender so I can make healthy soups and shakes. Already I feel more socialable at meal times, my partner and relative are as relieved as me that they were able to open my throat after so long. My partner often forgot I couldn't swallow and when he got up to make. A coffee he'd say. "Do you want one" and at Christmas I was given 3 boxes of chocolates, two from my brother. It's difficult for them to know what it's like to be unable to swallow. The chocs I'm keeping for a rainy day if my great granddaughter doesn't find them first. I'm sure she can smell out my hiding places. She's only three and yes I do give her one or two now and again.....

  • thennies61
    thennies61 Member Posts: 285
    A year ago I was worried.I

    A year ago I was worried.I was just out of surgery and in an after care hospital and all I got was food for the peg tube.I then went to a speach and swallowing specialist and she did the swolling tests to show if that flap was opening or closing the right way.Lucky it was but kind of weak so she had me just drink smoothies and soups things like that.But you will know just as you cough and gag when something went down the wrong pipe.I still take my time eating and do chop up my food before I eat just to be sure.But then again they took my teeth out during the operation and don't have the hang of trying gum my food yet.My problem is more of trying to get the food up and over the tounge since it is now tied down to the front of the jaw and moves very little.But with the help of the new denist I'll be getting the dentures with thicker plate to help the tounge move the food down the throat.

  • wmc
    wmc Member Posts: 1,804
    Now to answer: Do you ever stop worrying.

    I feel I had it easyer with my treatment and surgery than most everyone here. I never had to go through chemo or radiation and have the pain or side effects. Yes they removed my larnyx and 86 glands, but it does not compair to what so many of you have and are going through. 

    My answer to Jackie is NO you never stop, it does go deeper back in the mind, but it is there. It is still deep in the back of my mind every day. I see the Med alert bracelet I must ware and I do think about it everytime I swallow liquid.

    Bill

  • jackflash22
    jackflash22 Member Posts: 524 Member

    A year ago I was worried.I

    A year ago I was worried.I was just out of surgery and in an after care hospital and all I got was food for the peg tube.I then went to a speach and swallowing specialist and she did the swolling tests to show if that flap was opening or closing the right way.Lucky it was but kind of weak so she had me just drink smoothies and soups things like that.But you will know just as you cough and gag when something went down the wrong pipe.I still take my time eating and do chop up my food before I eat just to be sure.But then again they took my teeth out during the operation and don't have the hang of trying gum my food yet.My problem is more of trying to get the food up and over the tounge since it is now tied down to the front of the jaw and moves very little.But with the help of the new denist I'll be getting the dentures with thicker plate to help the tounge move the food down the throat.

    Good luck

    good luck that you have success with your new dentures. I can't imagine what it's like to have your tongue tied down and no teeth, I guess your mainly on soft foods. I hated puréed foods after my dissection, one plop of green stuff, one plop of a muddy colour and one plop of something unimaginable. The taste was unrecognisable and as horrid as the sight of it. I used to wait till no one was looking and run to the loo to flush it away, I then asked for double yoghurts They praised me up for eating it all ha ha. 

  • jackflash22
    jackflash22 Member Posts: 524 Member
    wmc said:

    Now to answer: Do you ever stop worrying.

    I feel I had it easyer with my treatment and surgery than most everyone here. I never had to go through chemo or radiation and have the pain or side effects. Yes they removed my larnyx and 86 glands, but it does not compair to what so many of you have and are going through. 

    My answer to Jackie is NO you never stop, it does go deeper back in the mind, but it is there. It is still deep in the back of my mind every day. I see the Med alert bracelet I must ware and I do think about it everytime I swallow liquid.

    Bill

    reading your posts you have been through a lot more than most. I like the way you handle it and give good advice and encouragement to others. I'm over the moon to be coming on in leaps and bounds now my throat is open a little. It gives me a real good feeling to swallow liquid real food. Soon I hope I'll be off the formulas.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member

    Good luck

    good luck that you have success with your new dentures. I can't imagine what it's like to have your tongue tied down and no teeth, I guess your mainly on soft foods. I hated puréed foods after my dissection, one plop of green stuff, one plop of a muddy colour and one plop of something unimaginable. The taste was unrecognisable and as horrid as the sight of it. I used to wait till no one was looking and run to the loo to flush it away, I then asked for double yoghurts They praised me up for eating it all ha ha. 

    JF, you sneaky little thing

    JF, you sneaky little thing you!!!  your post made me laugh out loud.  several here have done different things to fool the nurses.  it really is funny.  i know P put on steel toed boots to add weight to her.  people here are definitely very creative!!

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    what, me worry?

    JF,

    I wish you continued, successful and every improving swallowing.   Keep it simple, keep it wet and keep it small and you will do well.

    As for worrying (or thinking) about cancer.  As time passes without (real) hiccups,  I do ok, but the sore throat I had or a little excessive edema and I start to worry.

    Even if I am vigilant, I did not catch it early the first time around, but I am in a quest for that stellar, cancer fighting blood test (first line of defense).

    I wish you the best,

    Matt

  • sunshine_64
    sunshine_64 Member Posts: 50
    Fishmanpa and the others got it right

    The worrying - much like the grieving process - comes in "waves" - but they come more and more infrequently over time...and, as others said, sometimes the worrying is caused by something real that needs attention - like vitamin deficiency, thyroid problems, fibrosis, and other "late side effects" that need attention. Sometimes the anxiety is caused by check-ups, other times by some other trigger, like post-traumatic stress syndrome.

    The good news is that sometimes - really - you don't think about the experience at all - it's like it happened to someone else!

    One antidote to worrying is to go this website and assure yourself that you're not the only one with these worries, and, sometimes that alone makes them dissipate.

  • wmc
    wmc Member Posts: 1,804
    JACKIE...Do not worry about that!

    Jackie, please, please don't worry abour this. It is called Aspiration. I had or was Aspirating all the time before my surgery. I had Silent [Unaware of] aspiration. I could not tell I did. IF you do aspirate you will turn red and cough it out. I never did I just kept going. Liquid would go down and I might cough, but I've hade small pieces of bacon and did not cough it out for four hours. With all that being said, and this went on for six months, I never got pneumonia which was my bigest worry. Yes, it can happen, but YOU'RE odds are very very small. Your mouth would have to have bactiera in it from poor hygiene, as one of my Dr told me. This is also why they took out my larnyx as that is where my cancer was , not from hygiene. Today I still can aspirate because I have a valve that I use to talk with that can leak, and has. It is always on the back of my mind, but you are not going to do it. I have to squirt 3ml of water down my neck every day, twice at least and as soon as one drop goes in I cough so hard. You have the worry of it now because you have not been able to swallow. Go slow, like your Dr said, but you will be fine. It might take some time for you're worry to go away, but it will. Pudding, milkshakes, chicken broth, and my favorate, cream of chicken soup. Try your favorate drink like tea or a soda pop and put it in a blender with lots of ice and make a smoothe. It is thicker and will feel good going down and it is very hard to aspirate thick liquid. Scrambled eggs are good as well. I now take all most of my liquid at room temp and I feel better that way for me. I can eat anything I want to now.

    You have been through so much, I do hope this might ease your mind some. Your doctors are good, and correct, you will be fine. Just hang in there my friend.

    Bill

  • jackflash22
    jackflash22 Member Posts: 524 Member

    Fishmanpa and the others got it right

    The worrying - much like the grieving process - comes in "waves" - but they come more and more infrequently over time...and, as others said, sometimes the worrying is caused by something real that needs attention - like vitamin deficiency, thyroid problems, fibrosis, and other "late side effects" that need attention. Sometimes the anxiety is caused by check-ups, other times by some other trigger, like post-traumatic stress syndrome.

    The good news is that sometimes - really - you don't think about the experience at all - it's like it happened to someone else!

    One antidote to worrying is to go this website and assure yourself that you're not the only one with these worries, and, sometimes that alone makes them dissipate.

    Worry

    I'm not worrying about Cancer at present, I've told myself it's not coming back, maybe I'm burying my head in the sand but it's my way of coping, my worry was the swallowing because it's quite alien to me at present as I haven't had to do it for 18 months not a thing except mouth rinse went into my mouth. I was just worried the liquid/food would leak into my lungs without me knowing and I'd get pneumonia , but thank to everyone that's answered I'm much more confident. I've had chicken soup, mushroom soup, yoghurt and coffee. I want to try ready brek and banana and peaches and icecream. I blitz it first. thanks all....jackie

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Yes

    I think about it alot but do my best to drink and eat slow. I've had my moments when liquid went down the wrong pipe but with a few coughs all was OK  Nothing is 100% except for our last day on earth so I would remain aware but I wouldn't allow it to control me.

          Jeff

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    Sort Answer is No

    We are human and that is the best we will every be.  Of couse we will continue to worry for as long as we are here.  Some days less, some a lot more.  We are not alone and there are many people who care.  I suggest a cancer support group if there is one close to you.  It is a big help to me.

  • patricke
    patricke Member Posts: 570
    WORRY

    Hey Jackie,

    Congratulations on the success of your dilation procedure, that is awesome!  I was very anxious about swallowing after my esophagus was reconstructed, but with my doc and SLP's encouragement, I pushed myself, in spite of my fears, to pour those liquids down.  I believed them when they told me that it was important to use my esophagus to maintain its' effective functioning.  I started slow and gradually increased the amount and thickness of the liquids that I was swallowing.  Initially, I had a voice prostesis that was placed in the wall tissues between my trchea, and esophagus which was very problematic for me leading to a host of issues topped with a couple of stints in the hospital with asperation pneumonia.  I had that opening sealed a year and a half ago, so no more problems with asperation.  Jackie, since you are not a laryngectomee, you probably won't have the same asperational issues to deal with.  I'm sending my best wishes for continued progress on swallowing with less anxiety, and more comfort.

    PATRICK