Frustration, depression...and guilt...

JC F
JC F Member Posts: 74
in Head and Neck Cancer #1

Now at 11 months post tx and the taste and saliva issues still suck big time. Better than last summer I suppose, but barely... 90% of everything I eat and drink tastes like crap or not at all. Eating the same things over and over that I know have some semblance of a taste. Nothing has helped the saliva, have tried everything, very difficult to adapt to. Still have the neuropathy in right hand. Able to ignore the tinnitus most of the time. Well aware that it takes time but thought I would see better improvement at this point, hence the frustration and depression...and the guilt arises because I know so many here and elsewhere have it much worse with the initial diagnosis or the after-effects of the tx...just venting...

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    you have good taste in subjects

     

    JCF,

     

    I did not eat seriously for seven months. I was always trying things, everything , all the time, even when I was living (mainly) on protein drinks.  As Sonyk72 put it so eloquently, “I had no sense of taste”.  Ever so slowly food, some food started to have decent taste and feel.  Now, at 3+ years post I am still tasting the improvements to many foods. One thing that still eludes me is clam chowder, I used to love the stuff, that  now find it different.

     

    I guess I was lucky that I enjoyed the protein drink so much, I was just happy to still be kicking.  You are right, no two of us are the same, some are far worse and  some are of far better.  It’s just making do with what you got. Who knows maybe you’ll continue to see improvements in your taste as I have and still do.

     

    As far as dry mouth I use as I Xylimelt tablets every night,  it helps with my dry mouth and the extra saliva I think helps my teeth.

     

    I hope you continue to see improvements with all the side effects of treatment. Now, I’ve got to go find some clam chowder.

     

    Matt

     

     

     

  • lornal
    lornal Member Posts: 428
    #3
    talk to your doc

    You should talk to your doc.  When I had tonsil cancer in 2007 - I really did not start healing and improving until a new doctor put me on anti-depressant.  It took me a couple of weeks to start taking them - and then suddenly, I started to heal - all aspects of this cancer and treatment started to improve.  I stayed on them for about a year.

    In 2014, I had another cancer - hypopharnx.  This time, I started the meds while still in the hospital.  I was back working (parttime) in just a few months.  Unforturnately, I still need to take them this time - but life is good!

    Lorna 2007 & 2014

  • Elaineh
    Elaineh Member Posts: 21
    #4
    Depression and guilt

    Hey JC F.  You are not alone on this one.  I'm 14 months post treatment and NED but have had many post treatment issues, as most of us have.  I've have numerous episodes of pnuemonia and now have a feeding tube again, and cannot eat or drink anything. So I find myself moaning about my fate until I realize that, like Matt says "I'm still kicking"!  I agree with others who commented to you that antidepressants can really help, as can time and the reLization that we all have to accept a new normal.  I, too have felt guilty for complaining about my "fate" when so many others are worse off.  It really is just wasted energy, but when one is depressed it's hard to see that.  Good luck with your new normal

  • Elaineh
    Elaineh Member Posts: 21
    #5
    lornal said:

    talk to your doc

    You should talk to your doc.  When I had tonsil cancer in 2007 - I really did not start healing and improving until a new doctor put me on anti-depressant.  It took me a couple of weeks to start taking them - and then suddenly, I started to heal - all aspects of this cancer and treatment started to improve.  I stayed on them for about a year.

    In 2014, I had another cancer - hypopharnx.  This time, I started the meds while still in the hospital.  I was back working (parttime) in just a few months.  Unforturnately, I still need to take them this time - but life is good!

    Lorna 2007 & 2014

    Two H & N cancers

    lornal--  I can't imagine what you've been through.  Your courage is an inspiration to me.  Keep fighting!!

  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Vent we all need it sometimes

    I think we all go through the depression stage some of us sooner some later all depends on our chemical makeup I guess. I agree with lornal & Elainah time to talk to your doctor and get some professional help, he should be able to line you up with the right doctor. I was very lucky I was able to talk to my ENT about everything and she put me on the right med the first time and really made a big difference in my life.

     

    PS: Taste is what it is I been on the PEG for a little more then 3 years now never tasting anything I eat. I am just thankful for having a PEG tube in my belly and not running a hose down my throat to eat.

     

    All the best

    Tim

  • wmc
    wmc Member Posts: 1,804
    #7
    Venting is always good ....

    Venting is good just a diferent form of medicine. Just being able to get it out and on papes [same thing] helps take pressure off you. Also helps that so many have been there as well. Yes it can take time, and some just takes lots of time. I had tinnitus before I had surgery, and I always will. Before they found the cancer I would hear loud bangs when it was quite and trying to sleep. It was like a gunshot, but only in my left ear and I knew it was nor real. Some nights were real bad and I would even set up to listen, but I knew it was not real. I had pain in my left ear as well that got worse, which was a side effect of the cancer. I still have tinntus, but all the loud gunshot sounds were gone when I had my surgery. I have never heard them again. Just remember to celabrate every little step on your recovery, because to others it may seem small. But to a survivor it is major.

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    JC F, no need to feel

    JC F, no need to feel guilty.  We, above all, understand your feelings.  Yes, we all have our issues but that doesn't make ours any easier to accept, so NO need to feel bad.  I pray things get easier for you and that you will soon be like me again, able to eat and gaining weight, I don't want to be the only one who is gaining back all the weight (not needed now).........lol.  I hope you are feeling better soon.

    God bless you,

    dj

  • JC F
    JC F Member Posts: 74
    #9
    debbiejeanne said:

    JC F, no need to feel

    JC F, no need to feel guilty.  We, above all, understand your feelings.  Yes, we all have our issues but that doesn't make ours any easier to accept, so NO need to feel bad.  I pray things get easier for you and that you will soon be like me again, able to eat and gaining weight, I don't want to be the only one who is gaining back all the weight (not needed now).........lol.  I hope you are feeling better soon.

    God bless you,

    dj

    Thanks for the responses...

    Thanks for the responses. Not having debilitating depression but it definitely comes and goes. Just frustration and disappointment sets in at times but will keep giving it time of course and keep fighting the good fight...

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