Four weeks after treatment

Laralyn
Laralyn Member Posts: 532
in Head and Neck Cancer #1
Well, yesterday marked four weeks after the end of treatment. For some reason, I've been having trouble staying positive, even though I think things are going well. The mucus is pretty much gone, and I haven't had any problem with nausea since reducing the narcotics. I'm consuming around 1100 calories a day (via PEG), which is a HUGE improvement over the ~300 a day I was eating during the 3-4 weeks of the worst nausea.

I'm in some pain, because I'm trying hard to take a minimum of Norco. I'm on the 25 mcg patch and Aleve, which leaves me with a sore feeling in the back of my throat. It's not unbearable, though--just distracting. My doctor suggested I hold off on Norco unless the pain is a 5, and it doesn't usually get that bad until my patch starts wearing off the day before I change.

I guess the mood problems come down to impatience, which I know is a flaw I have (understatement). It may also be that I focused so much on staying positive and kicking butt during the early stages that I never really dealt with having had cancer, emotionally, and now I am. More than anything, though, and it feels silly to even say this, I think I'm being driven crazy by the fact that I can't eat or drink anything by mouth. With my mouth so dry, I would be SO much happier if I could just drink some nice cold glasses of water.

I was hoping the appointment with a speech pathologist would be made for next week, but they still haven't called me. I'm sucking on ice chips, which helps. I also got some thickener and I'll keep trying it to see if I can get thickened water down without coughing.

So that's where I am. It feels like treading water even though logically I know I'm getting better. Funny how the brain works, huh? ;-)

Comments

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #2
    Hi Laralyn
    So glad to hear from you ...I think you are doing great to have the mucouse gone already ....it took me 2 months .

    Over the time you have posted I have felt you are one really strong person (though I completely get where you are coming from with the mood and treading water statement).

    I have had you on my nightly prayer list for quite some time....and will keep you there till you tell me to take you off :)

    Best,

    Tim

    I have not been able to check my message boards much in the pm and have to do it at work bc I spilled a water bottle on my laptop!!!! :)
  • mike_haus
    mike_haus Member Posts: 1
    #3
    eating and "liking" it
    Laralyn, I am new to this site, having only discovered it this past Thursday. I have been out of treatment the past 4 weeks (radio and chemo)for neck squamous cell cancer that attached itself to my neck nerves. No lymph involvement neck but the pain is pretty intense. Trying to keep the drugs down so I don't sleep so much. I have been occupying my time with cooking- not that I eat a lot of
    it but some of my fellows seem to enjoy it. One item I found that has workede extremely well, and I am not kidding you, is the use of Hersehy's Special Recipe Dark chocklate ( it's in a squeeze bottle just like the reqular stuff. For some reasoms the bittersweet flavor, added to just about anything ( including pasta ) goes down pretty well. Must be the old Mary Poppins
    song about a litle bit of sugar makes the medicine go down. Hope this gives you some relief makes eating enjoyable again.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    So glad to hear from you!!!! :)
    I honestly think that hitting that place where we REALLY want to eat something is a true "stage" of this...where that was not so important before, it starts worming into our heads. Told hubby last night that I'd sure be a lot happier if I could munch...LOL.

    I'm wondering if you could be able to swish milk and spit it out now that your mucous has abated? It gives me pretend spit for about 30 minutes after I drink it (I know you can't drink it), but just roll it around your mouth, maybe? Have you tried tucking your chin to your chest when you sip anything? My therapist showed me that when I saw her...it helps block your windpipe.

    Yes, the mind is funny thing...sometimes it has more power than it should have, tho...it has saved my butt, but it has also made me more miserable than I needed to be...that's a fact!

    p
  • CajunEagle
    CajunEagle Member Posts: 408
    #5
    Girl......
    I'm so proud of you. Been following along on your treatment, and you have done quite well. Get that appointment with the Speech Therapist ASAP, but until then, I recall a few physical excersises that were prescribed to me that you can start working on. I was on my Peg Tube for about 7 months, and had to be re-taught how to swallow. Had to get that epiglottis working again and the muscles strenghtened to get even the most miniscule bits of food and sips of water to get down my throat. They had me lay on my back on the floor and just lift my head to peek at my toes, and hold for a count of 10. Did 5 reps of these, and did this around 4 times a day.....initially. Then vocally saying "EEEEEEEEEE"....starting low in the voice, then getting higher and higher....till your cat says, "that's enough" LOL. Did reps of theses 4-5 times a day, then tried the best I could to take Baby sips of water....5 reps of these (initially). After 6-7 weeks of this, I had made lots of progress, and got the tube out within the next month and a half. I don't know, but try it.

    Larry
  • hwt
    hwt Member Posts: 2,328 Member
    #6
    Swallow test
    I was unable to pass the swallow test after a 2 week hospital stay and was extremely disappointed. Like you, I was unable to have water or even ice chips. My ENT told me his therapist was better than any swallow test. I scheduled an appt. and she tried applesauce and pudding. I left the office able to drink water and on a soft diet. Until you get the go ahead to eat and drink, the suggestion above to swish and spit cold milk might be a good one. Early on, cold milk and chocolate milk were very helpful to me when I started eating. I hope the change comes soon for you.
  • Grandmax4
    Grandmax4 Member Posts: 723
    #7
    My thoughts
    are that our minds go into survival mode as soon as we hear the word " cancer" Now that the treatment has been completed, the healing is on-going, we are getting back to our life, it suddenly hits us, gosh, I've been on the brink and back. I wish you only the best with your speech therapy, my girl was wonderful...I was kinda a whiny cry-baby for awhile, " I hate applesauce", "why are you dying it blue, it makes my tongue look grosser, if that's possible" "God, if I never see another Ensure, I'll be happy" and on and on. She just laughed and went on...I really miss her now that I'm on my own, tho I do see her when I have scopes, her and that "da*n" blue applesauce.

    Under big chilis post, I posted how I was taught to swallow, mine is for the rest of my life, as I now have no epiglottis to protect my windpipe.

    Hang in there, you're doing great, and allow yourself to be moody, but only for a short while....we all have a new chance
  • ooo
    ooo Member Posts: 105
    #8
    I haven't seen
    I haven't seen post-treatment impatience being properly discussed on this board. I was way more whiny than usual for several days after ringing the bell (without having major medical reasons to be like that). I just took off my fighting armor and became a baby.

    Laralyn, you have all the reasons in the world for not keeping up with the mythical figure of the think-positive cancer fighter. I'm not sure what the best way of dealing with this is. Personally I just let go for a few days, got bored of hearing myself whining all the time and moved on to be a decent person.

    A big big hug. Now go whine like a boss for a while, make me proud! :)

    Dre.

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