Hanging in there

Laralyn
Laralyn Member Posts: 532
in Head and Neck Cancer #1
Wow, it can be really tough to stay positive when you're dealing with the mucus. It's been making me throw up, and it has had a big effect on my nutrition and hydration. I'm trying to give myself extra water each time I do my meds (every 4 hours) but I'm eating so little that I'm really dropping weight. I know I had the weight to spare, but it has to be slowing my healing down and it also means I sleep all the time.

When I was in the hospital the first time, they did a swallow test but never really explained the results to me (and I was too sick to pester them). I had trouble with water-thin liquids. Without keeping my chin down, I aspirated and choked. Even keeping my chin down, some water didn't make it in the swallow and made me cough. I have an appointment today with my rad onc and I'm going to ask him about the test results. I know there are thickened waters available and it might help me stay hydrated if I had them.

I'm also going to ask about an anti-depressant because I'm tired of being so sad all the time!

To focus on the positive, here are some things that have gotten better:

I wasn't able to speak more than a few sentences, between the mucus and instant dry mouth pain, but last night I had a 15 minute conversation with Charlie.

My neck burn is almost completely cleared up.

I think the mucus turned around last night and is a tiny bit better today.

I am throwing up less, overall, and last night I didn't throw up at all.


Even with those things, it feels hard to believe things will change and get better. I feel like I'm in such a dark place right now. :-( I haven't posted much here because I know people were counting on me to be a positive voice and I'm really not right now.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    Those were your expectations
    I am only happy to walk along with you and share the experience. You don't need to be happy right now. Lets just get over the next hill and see what lies ahead. I am sorry for your suffering. Please ask for some anti depressants, as it really is a dark place to be in. The medication sheds a little light on things and takes the edge off allowing you to get where you need to go. You will feel better, tomorrow and we will walk some more.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    the bad news is
    that Ratface is whipping my butt at email chess again. The good news is that this does end. I couldn't talk by the end of rads. Hurt too bad, and no one could understand me even if I tried my darndest. So I declared a moratoreum on talking. I felt pretty badly about this. Then Greg53 said to me that he had not been able to speak for about four months. Man, it felt great my disability only lasted two. Greg is really a very nice guy. He just doesn't want anybody to know that. No hurt in getting on some meds, and doing any other thing that you need to do. All of this will pass.


    pat
  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Oh Laralyn....
    I too, just want to walk the walk with you...I'm sorry you felt you had to meet anyone's expectations on your recovery....none of us know what is in store for us on this journey....We just want to BE with you, let you know we're here, and support you when things are crappy...like now!

    I'm so hoping for your sake that the nuances of change you noticed last night are THE SIGN, that things are making a turn for you, honey. If the change is slow, we're here to buck you up until they speed up.

    p
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #5
    Oh Laralyn
    No one is happy and upbeat all the time. This group allows you to be real, thank heaven.
    We are with you in the good times and in the bad times, this is a roller coaster ride and we are just in different seats. Give yourself a break. Tomorrow is a new day, and we are all thankful for that.
  • Sam999
    Sam999 Member Posts: 319 Member
    #6
    KTeacher said:

    Oh Laralyn
    No one is happy and upbeat all the time. This group allows you to be real, thank heaven.
    We are with you in the good times and in the bad times, this is a roller coaster ride and we are just in different seats. Give yourself a break. Tomorrow is a new day, and we are all thankful for that.

    Hi Laralyn,
    I echo the
    Hi Laralyn,

    I echo the views posted by everyone, we are here to walk the walk together, ups or downs. This is the only place where people really understand what we go thru as they have been thru. As Phrannie said, one small change at a time in the positive direction has started, it will get better.

    And before you know, you will be posting encouragjng notes to others behind you when they are in the same place you are right now.

    Sam
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #7
    feel better soon
    Hi Laralyn,

    I am sorry you are so sick. Believe me,it does get better, really. As for the depression, your doctor can help with that.

    To better times and better feelings


    Matt
  • Ingrid K
    Ingrid K Member Posts: 813
    #8
    keep on hangin' on
    Oh, sweetie, please don't be so hard on yourself.
    As "rickface" said, you put those high expectations on yourself....those of us who've been thru this battle know what a dark place you end up in (and everyone does)

    Maybe since you were a bit ahead of some of the others (P51, sam, matt, etc.) Maybe you felt that you had to be the strong fearless leader. NOPE, NOPE, NOPE ! That's not how it works. We are all in the war together, even though we fight our individual battles. So we share what works, the little tricks and helps and also the OKAY to not be strong every day. You are doing everything right.

    AND you are seeing some improvement. It is slow, but YOU WILL GET THRU IT.

    DON'T BE AFRAID TO GET THE ANTI-DEPRESSANTS. They will make you feel so much better. They really do take the edge off so that you can focus on getting stronger.
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #9
    Ingrid K said:

    keep on hangin' on
    Oh, sweetie, please don't be so hard on yourself.
    As "rickface" said, you put those high expectations on yourself....those of us who've been thru this battle know what a dark place you end up in (and everyone does)

    Maybe since you were a bit ahead of some of the others (P51, sam, matt, etc.) Maybe you felt that you had to be the strong fearless leader. NOPE, NOPE, NOPE ! That's not how it works. We are all in the war together, even though we fight our individual battles. So we share what works, the little tricks and helps and also the OKAY to not be strong every day. You are doing everything right.

    AND you are seeing some improvement. It is slow, but YOU WILL GET THRU IT.

    DON'T BE AFRAID TO GET THE ANTI-DEPRESSANTS. They will make you feel so much better. They really do take the edge off so that you can focus on getting stronger.

    Laralyn
    If you're hurting, sick, depressed,full of pain, it is what it is and you know better than all of us how you are feeling! It's just good that we all have a place to vent to folks that are either walking with you or blazed the trail before! The darknest night is just before dawn.....you will get through this and be amazed at just how it happened. Be encouraged that it will end!! Just get through 1 day at a time. Don't borrow from tomorrow!!
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #10
    Mrs. Sarge said:

    Laralyn
    If you're hurting, sick, depressed,full of pain, it is what it is and you know better than all of us how you are feeling! It's just good that we all have a place to vent to folks that are either walking with you or blazed the trail before! The darknest night is just before dawn.....you will get through this and be amazed at just how it happened. Be encouraged that it will end!! Just get through 1 day at a time. Don't borrow from tomorrow!!

    Know expectations Laralyn..
    ..though we are delighted at how far you got and how well you held up ...there were no expectations for you to go it alone or be the poster child cancer treatment winner. You have been and still are a great inspiration ...now if you are down / hurting ...it's our turn to carry you on and honored to do so.

    Prayers for you Laralyn...my mucous stayed 3 months ......(not that yours will) but it's al gone now and I got almost all my taste back (90%).

    Hang on....the end is near for the affects!!

    Tim
  • robinleigh
    robinleigh Member Posts: 297
    #11
    Swallowing
    I think that slightly thicker liquids are easier to swallow than totally thin ones. Smoothies and shakes. Creamed soups and yoghurt.
    My husbands mucous was so bad that there was a period of time he spent half of every hour hanging over the sink. Then, he had a bucket size container always with him as a spittoon...lovely! Then a regular size solo cup just in case. Then just some tissues and now no need to have anything but his sport water bottle. It will certainly progress for you even though time seems to move slowly. Hang in there!
  • hwt
    hwt Member Posts: 2,328 Member
    #12
    There will be easier days
    There will be easier days and sunshine around the corner. Allow yourself the occasional pity party, we all need that. I spent many a day curled up in bed trying to sleep thru the worst of it. Don't hesitate to ask for that anti-depressant. Do you have a PEG?

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