Unpredictable

phillyboy
phillyboy Member Posts: 23 Member
in Head and Neck Cancer #1

20 months post neck radiation ,2 chemos and 45 days of radiation. Still no taste but some saliva coming back slowly. Can chew most foods and swallow. I wanted to give up but I just didn't. Lost 40 pounds and still do not want to eat.Certain soft foods I can tolerate with liquid to wash down. Lost most of my hearing, aids didn't help, and have neuralgia in neck and legs. Medication does not help. Fatigue and lack of interest is a real problem. I keep hoping but am aware that things may not get better. I am still alive and hoping for a better day tomorrow. For those of you that are suffering worse than me , hang in there. Things could improve at any time.

Comments

  • DarcyS
    DarcyS Member Posts: 81 Member
    #2
    Thyroid check

    Sorry hear you are struggling.  Fatigue is a very real side effect for many and it can be sign that your thyroid is no longer functioning properly.  Have you had a blood test to check your levels?  If not, you may want to check with your doctor.  My husband takes synthroid and has almost since the end of treatment over 6 years ago.  Some people also have depression after treatment.  Talking with your doctors about how you are feeling is a very important part of your recovery.  

  • bugsyboy
    bugsyboy Member Posts: 39
    #3
    Pharmaceuticals are your friend

    You've been to the gates of Hell.  Finding your "new normal" is a s-l-o-w process during which time depression was a big part of my recovery.  One good side effect of the anti-depressants I was on was appetite stimulation.  I was on them for about three months and they helped - a lot.  Are you on thyroid meds?  Between the chemo and radiation, your thyroid is probably shot, like most of ours.  Be sure to get your thyroid levels checked.  Also, look into anti-depressants.  You won't be on them forever and they helped me.  I hope they can help you find your "new normal".

    You can do this.  

    Best of luck.

    Bugsy

  • SuzJ
    SuzJ Member Posts: 446 Member
    edited April 2019 #4
    after effects

    Most of us find out we have cancer, and immediately go into *fight mode* - and we dont stop, we just keep going.

    Then after its all done, we fall apart to some degree, one way or another.

    My Doctor said she was suprised it took so long to get to me. I now take zoloft. Im doing ok, but I don't have the "joy" I once had (that make sense?)

    Fatigue is or can be, 2 things. First is thyroid, if your thyroid survives with no damage, you got lucky.

    Second is your baroreceptor. Yea, I had never heard of it either. It controls your BP. When your Baroreceptor (on your carotid) your BP doesn't stay up very well, and you are always tired.

     

    So this apparently is rare, BUT its also something discovered recently, and there are studdies going on learning more about it.

     

    Talk to your Dr, make them understand just how crappy life feels, sometimes it feels good just to actually SAY it. Because, we did treatment, we are still here, we can relax a bit now. It was a long hard fight, and took everything we had, and we did it.

     

    *hugs*

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #5
    Hard Road

    Bugsy said it all IMO.  It took several anti-depressants to find the right one but it really helped.  Was on them for less than a year.  Getting off them was the hard part until I tapered ever so slowly.  Then it wasn't bad at all. 10% every 1-2 weeks.  

    Time heals.  Some slower than others but it sounds like you are making progress.  All we can do is say hang in there.  No guarantees on the outcome but all of us have a new normal.  It's the price of staving off the grim reaper.  Every day is a gift.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #6
    What a Great Bunch of Advice

    Lots of good advice here with thyroid the biggie. My thyroid hasn't changed to any degree yet so the rads must not have hit it very hard. But I have been on medicine, Levothyroxine for an underactive Thyroid for many years. I remember being tired all the time. I even thought I was behind on sleep or just not feeling well so I started going to bed at 8:00 every evening to catch up on my rest but no matter how much I slept I was still tired. Mentioned it to the doc one time when I was in and he ordered a blood test right away and it came back that my thyroid was off. My Mother had it too. After taking Thyroid Meds for 4 to 6 weeks and the levels caught up I was feeling much better and had my energy back. We all have a new normal but if you ever think things may be off too much see your docs because something may just need a little attention, and the rest we adjust to-God Bless

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