Hello - just checking in

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the_wife
the_wife Member Posts: 184
edited July 2017 in Head and Neck Cancer #1

Hey peeps!

I haven't been on this forum for a very long time. Just thought I'd drop by and say HELLO and to let you know that hubby is doing quite well. In August he will be getting a PET scan since it will be his 2 year anniversary since completing treatment. He was diagnosed with Stage IV HPV positive tonsil cancer and underwent chemoradiation with cisplatin. He had a rough time with the chemo, was hospitalized twice, fought constant dehydration, had mild aspiration during a swallow study, endured the dreaded feeding tube, along with all the usual side effects of that nasty treatment regime. Lymphedema - been there, done that. You name it, he had it. 

The only reminders of his cancer now are his weight, the dry mouth and the frequent hacking noise he makes to clear his throat. I still haven't gotten used to that. Oh and hearing loss - for me this is the hardest. Oh well....small price to pay, right?

It's nice to see some familiar names still here. Seems like the membership just keep growing (not good!). Back when I joined there weren't as many people and not as much activity as now, or so it seems. Those were some dark days and nights! In the midst of hubby's treatment, I don't think I've ever felt so alone in my life. Coming here made it bearable. Many of you were my life raft that kept me from drowning in the Sea of Cancerland. So, THANK YOU!

Phrannie - sorry to hear of your recurrence

Hondo - so very sorry to hear of his passing

Matt - congrats on reaching your 5 year mark! 

Bill - nice to see you're still here helping others through this "stuff"

Barbara - my 'twin' buddy, lol!

And everyone else who helped me along the way - just want to say thanks so much and I wish you all the best of luck!

~The Wife

 

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  • soonermom
    soonermom Member Posts: 155
    edited July 2017 #2
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    Good news

    Thanks for sharing your story.  Gives those of us still struggling lots of hope. 

  • Tilly26
    Tilly26 Member Posts: 30
    #3
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    Thanks you for sharing

    i, too, am the wife, and I agree on that hacking sound. Breaks my heart each time he has to do that. But hearing his voice sound more and more like himself, well Makes my heart patter:) I just found this site, but agree with you how it makes me feel less alone, and I often feel very alone as we are in our 30s and not many in our small town are in this boat. 

    Take care!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    Hi yourself

    The_wife,

    I think the last time we spoke was March 22, 2016 and the struggle was  eating.  I am glad that is behind him.  I do not cough as much as I did, but it is sometimes difficult to clear my throat (new normal item #44).

    Cancerland is just how you left it, but with new faces.

    Matt

  • the_wife
    the_wife Member Posts: 184
    #5
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    new normal

    Matt, yes, we're adjusting to our new normal as well. When I think back on those days of struggling to get him to eat - my only regret is that I obsessed over it a little too much. Food is a big part of our culture where we live, so it was hard to break away from tradition. But the smaller meals are a welcome change and now when I say, "I don't have anything for dinner." He says, "That's okay" and I manage to throw something together that's mostly healthy and light. 

    To all the caregiver wives - if I had to give just one piece of advice it would be to take care of yourself first because this is going to be a long journey and you can wear yourself out stressing over every little thing. Just remember you are not alone - there's lots of us out there! And we are surviving to tell about it! :)

    All the best!

     

     

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