Life after Cancer treatment

Elaineh
Elaineh Member Posts: 21
edited June 2015 in Head and Neck Cancer #1

Hi everyone.  I appreciate all the welcome notes from members.  I haven't been on in a while because I got aspiration pneumonia again.  If it happens again I get a J tube and won't be able to eat.  I'm doing all sorts of throat exercises, thickening my liquids (yuk), and tucking my chin when swallowing.  My swallowing dysfunction is likely related to the radiation and lymph edema of my throat, so it may improve with time.  I also still have no voice, and am beginning to accept that this may be the new normal.

I read the post by the new member asking if there really was life after Cancer treatment.  I, too, have wondered if I'll ever get back to my precancer self.  In fact, I asked my ENT doc that yesterday.  I need to remember two things:  I'm only now one year out from completion of treatment, and today, right now, is the only time that really matters.  So, I tell myself, don't focus on who I was pretreatment, or worry about who I may be in the future.  NOW is the only time that really counts.  This is not an easy thing to do.

 

I don't know if this is helpful at all, but wanted to share.  Glad to be back in touch!!

 

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    Elaine

    No crystal balls with this beast. I do have a voice but often times use a write board because I am sometimes hard to understand. Just found out they make an LCD write board, I am going to look into getting one. My brother was trying to show me how to use the notes screen on this IPad but I am not very good with computers. 

    Well wishes

    Candi

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Elaineh

    Read my story on my all about me page. I am now 13 years from my first treatment and 11 years from my second treatment. I am still alive and still going anywhere I want, I had to make a lot of changes in my life but I am still here.  You will never be 100 present what you once was but you will have a new normal you that will be 100 present you.

    Don’t be afraid to get the PEG tube I lost my ability to swallow 3 years ago so I been on Mrs. Peggy a long time and she is not the only thing closer to me then my wife. I do a lot of traveling and I am fixing to leave to Honduras in a few weeks. So on a PEG tube you can do anything anyone else can do just a slight bit different.

     

    Tim

  • wmc
    wmc Member Posts: 1,804
    Sorry you are aspirating............

    I had what they call silent aspiration. You don't know you aer until you cough and find bacon you ate four hours before. I was lucky I never got pneumonia before I had my surgery. My epiglottitis didn't work very well. 

    I do think what you said should help. I do agree that today matters. Now that I am 20 months out and really doing great, I never had chemo or radiation and that did help. Cancer took my larnyx and they took 86 glands while they were there as a precaution. The main thing that I have seen is, you need to accept the new you. Before surgery I knew what was going to happen and it would be life changing, but I still had a life to change. In most ways I am the same, but in some ways I have changed, and for the better. I do a lot for the other Laryngectomee and give them suport and videos and show them you can do things we were told you can not do. Well it is just how much you want it.

    As far as not having a voice, [that is tough to go through] you might check with your doctor and your phone company and many states supply at no charge an electric larynx. That is the round tube you hold to your neck and mouth the words and it will give you a voice. It sounds like a robot a little but it might help you. I had to use one for awhile as they took out my voice box. They put in a prosthesis and I can talk on my own. I had to use the thick it for awhile and thick water is just weird to drink. I do hope it gets better. Thank you for checking in....

    Bill

  • MrsBD
    MrsBD Member Posts: 615 Member
    Patience

    Patience. Since being diagnosed a year ago, I've probably heard that word a hundred times!  Recovery is like a game of Chutes and Ladders where you move ahead and then backslide to start over. I'm always the last person to finish eating, so I finally told my family they don't have to stay at the table and watch me eat!  One bit of advice that helped me with swallowing was to turn your head slightly to the side that seems to be giving you more trouble. It slightly enlarges the other side so food goes down more easily. It really helps with taking pills. Swallowing exercises and good nutrition are crucial too. Are you seeing a speech therapist for vocal exercises? I was told to treat my voice gently but not to whisper. It has gotten better, but it's still not as strong, much to the frustration of my hard of hearing hubby. I hope you continue to improve, even if it is ever so slowly.

  • lornal
    lornal Member Posts: 428
    Voice

    I lost my voice before I found out I had a second cancer - and had a total laryngectomy..

    After my surgery, I got a Boogie Board - you can write, erase, write again.  I don't use as often, but I carry it in my purse for those noisy situations.

    I had also used SprintIP for telephone calls.  It is a relay service you use from your computer.  YOu type, an operator reads what you typed to the person you are calling.  Then, the operator types back to you what the person says.    If you have an analog phone, you could get a hearing carry-over.  I have cable phone, so I can't use it.  But it is like voice-carry over, but for people you can hear but can't talk.  I use an electroylarynx now, and don't use SprintIP as much as I used to, but still do when I have a lot to say, and am not confident the person I a calling will be patient with my new voice

    Lorna

    2007 & 2014

  • lornal
    lornal Member Posts: 428
    hwt said:

    Elaine

    No crystal balls with this beast. I do have a voice but often times use a write board because I am sometimes hard to understand. Just found out they make an LCD write board, I am going to look into getting one. My brother was trying to show me how to use the notes screen on this IPad but I am not very good with computers. 

    Well wishes

    Candi

    off subject

    Just a bit off subject, but I private messaged you a question to help a friend of mine.  Have you seen it?  I couldn't find your email address.

    Lorna

  • Elaineh
    Elaineh Member Posts: 21
    wmc said:

    Sorry you are aspirating............

    I had what they call silent aspiration. You don't know you aer until you cough and find bacon you ate four hours before. I was lucky I never got pneumonia before I had my surgery. My epiglottitis didn't work very well. 

    I do think what you said should help. I do agree that today matters. Now that I am 20 months out and really doing great, I never had chemo or radiation and that did help. Cancer took my larnyx and they took 86 glands while they were there as a precaution. The main thing that I have seen is, you need to accept the new you. Before surgery I knew what was going to happen and it would be life changing, but I still had a life to change. In most ways I am the same, but in some ways I have changed, and for the better. I do a lot for the other Laryngectomee and give them suport and videos and show them you can do things we were told you can not do. Well it is just how much you want it.

    As far as not having a voice, [that is tough to go through] you might check with your doctor and your phone company and many states supply at no charge an electric larynx. That is the round tube you hold to your neck and mouth the words and it will give you a voice. It sounds like a robot a little but it might help you. I had to use one for awhile as they took out my voice box. They put in a prosthesis and I can talk on my own. I had to use the thick it for awhile and thick water is just weird to drink. I do hope it gets better. Thank you for checking in....

    Bill

    Aspiration

    thanks Bill for your comments and support.  I still get aspiration pneumonia 7-10 after coming off antibiotics so docs are considering a J tube for feeding. I  am a physician, and foolishly thought I would just have to go thru treatment, be cured or not, and go on with my life. it's amazing how powerful denial is, even in the educated. excepting the here and now can be tough.  Your fortitude gives me courage.  Thx

  • Elaineh
    Elaineh Member Posts: 21
    lornal said:

    off subject

    Just a bit off subject, but I private messaged you a question to help a friend of mine.  Have you seen it?  I couldn't find your email address.

    Lorna

    Private msg

    hey Lornal. I thought I did reply to that message but maybe not.  I'm still learning the ropes here.  Pls send ? Again.  Also I've been quiet sick again with pneumonia.  Sorry. E

  • Elaineh
    Elaineh Member Posts: 21
    Hondo said:

    Hi Elaineh

    Read my story on my all about me page. I am now 13 years from my first treatment and 11 years from my second treatment. I am still alive and still going anywhere I want, I had to make a lot of changes in my life but I am still here.  You will never be 100 present what you once was but you will have a new normal you that will be 100 present you.

    Don’t be afraid to get the PEG tube I lost my ability to swallow 3 years ago so I been on Mrs. Peggy a long time and she is not the only thing closer to me then my wife. I do a lot of traveling and I am fixing to leave to Honduras in a few weeks. So on a PEG tube you can do anything anyone else can do just a slight bit different.

     

    Tim

    PEG

    So Tim do you have anG tube (stomach) or Jtube(small intestine)?

  • Elaineh
    Elaineh Member Posts: 21
    MrsBD said:

    Patience

    Patience. Since being diagnosed a year ago, I've probably heard that word a hundred times!  Recovery is like a game of Chutes and Ladders where you move ahead and then backslide to start over. I'm always the last person to finish eating, so I finally told my family they don't have to stay at the table and watch me eat!  One bit of advice that helped me with swallowing was to turn your head slightly to the side that seems to be giving you more trouble. It slightly enlarges the other side so food goes down more easily. It really helps with taking pills. Swallowing exercises and good nutrition are crucial too. Are you seeing a speech therapist for vocal exercises? I was told to treat my voice gently but not to whisper. It has gotten better, but it's still not as strong, much to the frustration of my hard of hearing hubby. I hope you continue to improve, even if it is ever so slowly.

    Patience

    oh boy. Hard to yell at hubby when all one can do is whisper.  Yes I'm working with swallow therapist every week.  Thickening liquids, and tucking chin to swallow.  ENT says sweeping is going down so maybe I'll have a voice again someday.  I do need a huge dose of patience, and when I feel well it's more possible than when I've got pneumonia again like now. Nathan's for your support

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    i love the new normal?

    Elaineh,

    Pre-cancer self is like being a teenager, gone forever. It’s not that the facets of the new me is bad, just different.  We all start down a similar path, but end up in dramatically different places some good some bad.

    For me:

    Speech difficult and soft at times but took speech therapy and saw dramatic improvements.

    Edema experiences like most of us; received massage therapy and learn to do it myself, work great.  Now pretty much a non-issue.

    Eating it took seven months of hit or miss before I turned the corner and started eating normally again.  Now, it’s pretty much anything I want but with the caveat I have to have lots of water and plenty of time. I’ve gotten pretty good at stretching out the water.

    Swallowing I worked on this the hardest starting before treatment I drank and still drink lots of water every day. Though I cough and choke a little bit my swallowing is really very good night credit the advice of the H&N form for that. Especially John, Bev, Hondo and others (P51, Tim, Katie, etc.)

    Tiredness this is something I still deal with daily. My thyroid is back at normal levels with medication but I still have to work at having more energy.

    Sleep other than the few times my brain was racing at the beginning of cancer my sleep precancer during treatment and today has always been good, real good. I’m thankful for that.

    I could go on but risked becoming boring. Many here know me well as I know them.  Currently, the treatment we receive and the side effects are our best chance for a future. It is better to get along with the changes then fight them. Anyway, who has the time to waste.

    I close now,

    Matt

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Elaineh

    Life is great after cancer. I live a better and different life today than I did 6 years ago. The past is the past whether you fought cancer or not so keep the memories and move on because you can never change the past. Today is practice for tomorrow and realize that tomorrow has no guarantees. I have met people who didn’t have long to live because of cancer and told them that if they get hit by a car tomorrow and die the doc was wrong  with his 1 year prediction. I know it may sound cold but it is the truth.

    One thing I can guarantee is if you dwell on the past the future will pass you by.

    Heal on and Live on it does get better, you can bank on that.

          Jeff

  • Hondo
    Hondo Member Posts: 6,636 Member
    Elaineh said:

    PEG

    So Tim do you have anG tube (stomach) or Jtube(small intestine)?

    PEG Tube

    It is just a regular PEG tube in the stomach about 1.7cm long. I had it replaced last week and asked the doctor for the old one so I can take it apart to see who it works.

    Tim