Six Weeks post treatment update

Kari2007
Kari2007 Member Posts: 108
in Head and Neck Cancer #1

I've been pretty absent from the forums during my recovery, but I'm trying to catch up with everyone now. Looks like some new folks have joined the club since I last logged on. 

I'm a little over six weeks past my last radiation. The first few weeks of recovery were the roughest in terms of mucus, nausea, and finding it difficult to even do tube feedings (I threw up a lot thanks to all the phlegm). Then, about four weeks ago, I decided found myself falling into a depression. I just wanted to be well; to eat and not feel tired and get back to normal life, even if it was a "new normal." On top of that, I stopped taking the Ativan I had been taking round the clock for nausea cold turkey, which threw me into horrible anxiety. I ended up spending four days on an inpatient psych hospital so they could readjust my medications and keep me safe (I was having suicidal thoughts). It was a scary time, but I'm feeling nearly 100% better now, at least mentally. 

Physically, the mucus is gone as is any nausea. I haven't used my feeding tube since entering the hospital and I'm getting it taken out next Wednesday. I'm so excited! At first I was just drinking meal replacement drinks and soups, but quickly got bored and started trying other foods. I found my taste buds weren't totally dead after about four or so weeks - mostly salty and sour things tasted somewhat normal. Not 100% full on flavor, but getting there. Sweets are definitely not there, not even fruit, although I tried a cookie today and I could faintly taste the chocolatey, buttery tones. I can taste almost any vegetable exactly as before (maybe a sign my body is giving me to eat more veggies??). I am still getting a sore throat after eating certain things, which is a reminder to gargle more and that I'm still healing. 

I'm definitely still battling fatigue, but not so bad that I can't do anything. I can pretty much carry on with my normal every day tasks this far out, but need to take lots of little breaks throughout the day. Not full on naps, but just rests where I don't do much besides read or watch TV or do a puzzle. I even started taking a yoga class and have got some small weights I'm using to try and build back some of my muscle mass (I lost about 20 lbs overall). 

Anyway, I want everyone to know that there is a light at the end of the tunnel. And believe me, I was in the darkest depths where I really couldn't believe that things would ever get better. To the point of just wanting to roll over and die. And, I'm usually a pretty positive person. Just know that if you have any history of depression or anxiety, the post treatment period could trigger another serious episode. I think we're so focused on treatment and getting through it, that when it's over we're suddenly overwhelmed by the lack of a daily plan. You're still suffering physically, but now there are no doctor appointments to go to, just time to heal and recover and that phase can feel like it's never going to end. 

Keep fighting everyone!

Comments

  • MemphisTn
    MemphisTn Member Posts: 41
    edited September 2016 #2
    Same here

    jusf chiming in regarding the taste buds. You described my sense of taste almost verbatim. Just posting for others who are searching for that 'will I ever taste again' question. While we all want it to be instant, it's going to take a lot of time to get back what ever we will get back. Also, thank you for your post, good to know when others experiences track closely with your own, so thanks. Stay positive!

  • swopoe
    swopoe Member Posts: 492
    edited September 2016 #3
    Glad to see you, Kari, and to

    Glad to see you, Kari, and to hear that you are doing better. Everyday will continue to get better- both in terms of fatigue and taste buds. Keep up the great work!

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Your tastebud story...

    is pretty much my story.  I did start eating lots of veggies because I could actually taste them....fruit was a no go....my favorite, oranges were horrible, and the rest were just too sweet to taste.  It took 3 years, but finally last January I ate my first orange and loved it!!  Ice cream started tasting good too....It was almost overnight that the last of the buds came alive.

    I figured that I might as well eat healthy while my tasters were gone....no sweets, lots of veggies...and only certain meats if there was a lot of gravy.

    p

  • RottiesMom
    RottiesMom Member Posts: 167
    #5
    I've been thinking about you!

    Hi Kari!  I've been thinking about you!  I am so happy to hear you are doing better!!  What great news!!

    Joanne

  • Kari2007
    Kari2007 Member Posts: 108
    edited October 2016 #6
    RottiesMom said:

    I've been thinking about you!

    Hi Kari!  I've been thinking about you!  I am so happy to hear you are doing better!!  What great news!!

    Joanne

    How are you?

    How have you been, Joanne?

  • LiseA
    LiseA Member Posts: 266
    edited October 2016 #7
    Sorry you had such a rough

    Sorry you had such a rough recovery.  Had wondered how you were doing. I am 12 weeks out and still battling with the dreaded fatigue.  Some things I can taste, and just like all through treatment I wanted cucumbers daily, I still do!  It's bizarre.  I've been going to the gym though nothing strenuous, and in between walking 3 miles. Hoping this helps with fatigue.  No depression.  Sores healed Nicely. Some Lymphedema.  Good appetite.  Hair at back of head hasn't grown back yet. Hoping my 3 month checkup October 11-13th is cLear.  I will definitely share the results. Best of luck. Keep well. 

  • SylMarie
    SylMarie Member Posts: 91 Member
    edited October 2016 #8
    Kari, I've been wondering how

    Kari, I've been wondering how you were faring. It sounds like you have been through so much, and yet, you're on the other side of that now. That is so good to read. May you have continued and steady improvement. 

  • RottiesMom
    RottiesMom Member Posts: 167
    #9
    Kari2007 said:

    How are you?

    How have you been, Joanne?

    I am good!

    I'm doing good Kari.  My ENT dr scoped my throat and can't see any evidence of cancer.  He said we have to wait for the petscan Nov 14, but he doesn't expect any surprises. My Radiation oncologist is very happy with the way things are healing.  I saw my Chemo Dr Friday and my blood work is excellent!  I have gained back 5 lbs (lost 10) and am eating everything..taste and saliva not totally back and still some mucous but I am not letting that stop me.  I started easing back into my exercise routine and that is going good.  I am having some trouble sleeping...maybe because it's has been so interrupted these last few months.

    Joanne

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