Coming to terms

goty2001
goty2001 Member Posts: 71
edited August 2012 in Esophageal Cancer #1
Before my diagnosis of stage 4 inoperable EC that's spread too far for radiotherapy, I found it hard to believe others in similar positions seeming to be facing up so bravely to what the docs were predicting for them. And then I joined the gang. After maybe 2 days of shock or something (can't remember now) I entered a 2-week zenlike phase of calm acceptance. Detecting that this was not doing my family much good, I made the conscious decision to overlay that with a proper good old fight. Bring on the chemo. Juice that veg. Vit-C gluttony is good. Maybe I'll astound the oncologist with two more 'Auld Lang Syne's. All with that safety net (if you can call it that) that I've gotten my head around a not-so-good outcome.

If there's one chink that can't be ignored in my otherwise perfect safety kit it is the thought that maybe (or pretty much definitely, according to docs) I won't be here with their mother for either of my boys when they reach adulthood, and that by even seeing the younger one reach 5, then I will have beaten the odds.

My point is not very original or radical - it is this. I think that people who are unquestionably nearing the end must be most comforted by knowing, and being told, that they have given their loved ones enough. Difficult to rationalise when they're so young (I have work to do) ... but hopefully very doable for patients with grown up families. Tell them you're ready when you know they are. I think I'd like to hear that.

In the imaginary scenario where I don't cure myself, that is.

Comments

  • jaycc
    jaycc Member Posts: 122
    #2
    well said
    Well said goty2001.
    Definitely the work on your 4 year old's bike counts. Give yourself tons of points.

    Glad to hear your work is flexible. I can't say I fully understand how you are feeling, but familiar from a spouse perspective. Husband was also 50 diagnosed, Stage IV, we have 2 sons and a daughter.

    His 2 sayings that follows along with your multi approach armor - "I will not surrender" and "you can live a lifetime in 80 years, a month or a day the choice is yours."
  • Unknown
    Unknown
    #3
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  • TerryV
    TerryV Member Posts: 887
    #4
    unknown said:

    This comment has been removed by the Moderator

    Once again your words hit home...
    These words...

    "My husband too was concerned for his family. He was 48 at diagnosis and actually apologized to me for destroying our dreams, for our hurting and pain. But I must say as a surviving spouse and mother of age 13, 18 and 20 at the time, We are okay and know in our hearts that he is and will always be with us. He didn't fail us, he made us and still today continually makes us proud."

    echo in my heart. I heard similar from Nick. Nick was also diagnosed at 48. Near his end, he too apologized for coming back into my life. Apologized for for only giving me 2 1/2 years of marriage before losing him. Apologized being my kids' 2nd loss of a dad - they lost their bio dad to strokes 2 1/2 years before Nick passed.

    Nick gave me 6 1/2 years of WONDERFUL lifetime and 2 1/2 years of absolute joy in our married life. I hope where he is now that he knows what a blessing he was in my life, in the lives of the littles. I wouldn't trade a moment of our short time away....

    Thanks to you again, Sherri, for being so able to share your thoughts. You help me put my feelings into words.

    Terry
    PROUD wife to Nick, age 49
    lost battle to EC, 06/19/12
  • ryckej1
    ryckej1 Member Posts: 28
    #5
    Wow
    You, and everyone else on this post are amazing. I am blown away at what people are capable of in the worst of times.
    God Bless
  • Freida
    Freida Member Posts: 182
    #6
    What moving posts by the
    What moving posts by the three of you. Thank you for sharing your thoughts and feelings. Sounds like goty and Nick and Jim are cut out of the same cloth as my Bill. The first thing he did when he was diagnosed was look at me and say "I'm sorry for scaring you" - makes me cry just typing it that his first though was of me.

    Keep fighting the fight while you can and while it seems right to do so goty. The more I am on this site, the more I think that, while obviously great doctors are important, there is also just an element of sheer luck as well in how one responds to treatment. You only have to look at Bill & I and Judy & Don who started this journey at almost exactly the same time with almost exactly the same diagnosis to realize there is just no rhyme or reason about how this all turns out. As Terry once told me when I needed comforting - someone has to be in that small percentage.

    Good luck and Hugs
    Freida
    Wife of Bill, diagnosed 11/8/2011 T3N2Mx, not a candidate for surgery due to other comorbidities, 2 months induction chemo (bi weekly carboplatin and taxol by infusion and 5FU by continuous 48 hour pump) followed by 6 weeks chemo/radiation (bi weekly carboplatin and taxol by infusion and weekly 5FU by continuous 5 day pump concurrent with radiation). 1st 3 month check up August 2012 good. Living life until 2nd 3 month check up in November.
  • Bermudagirl
    Bermudagirl Member Posts: 114
    #7
    Freida said:

    What moving posts by the
    What moving posts by the three of you. Thank you for sharing your thoughts and feelings. Sounds like goty and Nick and Jim are cut out of the same cloth as my Bill. The first thing he did when he was diagnosed was look at me and say "I'm sorry for scaring you" - makes me cry just typing it that his first though was of me.

    Keep fighting the fight while you can and while it seems right to do so goty. The more I am on this site, the more I think that, while obviously great doctors are important, there is also just an element of sheer luck as well in how one responds to treatment. You only have to look at Bill & I and Judy & Don who started this journey at almost exactly the same time with almost exactly the same diagnosis to realize there is just no rhyme or reason about how this all turns out. As Terry once told me when I needed comforting - someone has to be in that small percentage.

    Good luck and Hugs
    Freida
    Wife of Bill, diagnosed 11/8/2011 T3N2Mx, not a candidate for surgery due to other comorbidities, 2 months induction chemo (bi weekly carboplatin and taxol by infusion and 5FU by continuous 48 hour pump) followed by 6 weeks chemo/radiation (bi weekly carboplatin and taxol by infusion and weekly 5FU by continuous 5 day pump concurrent with radiation). 1st 3 month check up August 2012 good. Living life until 2nd 3 month check up in November.

    It is indeed scary
    to contemplate what may happen. What scares me the most is that so many of you go through grueling treatment and surgery, have good outcomes, but that this cancer can come roaring back. So unfair. I try not to think about it too much, and indeed we all are a statistic of one. And Freida I like your outlook of living life until the next check up in November. I think we can sometimes be so frozen by fear that we forget to live. Much easier said than done, but once Dave is finished his treatments next week thats exactly what he and I plan to do.

    Sandy
  • Unknown
    Unknown
    #8
    Bermudagirl said:

    It is indeed scary
    to contemplate what may happen. What scares me the most is that so many of you go through grueling treatment and surgery, have good outcomes, but that this cancer can come roaring back. So unfair. I try not to think about it too much, and indeed we all are a statistic of one. And Freida I like your outlook of living life until the next check up in November. I think we can sometimes be so frozen by fear that we forget to live. Much easier said than done, but once Dave is finished his treatments next week thats exactly what he and I plan to do.

    Sandy

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  • Bermudagirl
    Bermudagirl Member Posts: 114
    #9
    unknown said:

    This comment has been removed by the Moderator

    Oh my goodness...
    I am so sorry, I hope that I did not offend or upset anyone with my insensitivity! I wasn't even thinking, and if I did I sincerely apologize. I know how people have said that it truly is a gift to be a candidate for surgery. Now I will remove my foot from my mouth...
  • Unknown
    Unknown
    #10
    Bermudagirl said:

    Oh my goodness...
    I am so sorry, I hope that I did not offend or upset anyone with my insensitivity! I wasn't even thinking, and if I did I sincerely apologize. I know how people have said that it truly is a gift to be a candidate for surgery. Now I will remove my foot from my mouth...

    This comment has been removed by the Moderator
  • minikit
    minikit Member Posts: 23
    #11
    Goty, thank you for the
    Goty, thank you for the gentle poignant post - having so years ago, when the deck was stacked against the odds of surviving I was able to say its ok if you need to go but this time I have done everything to avoid this conversation.

    My wonderful, caring man has suffered horribly not from the cancer but from the damage of radiation and chemo. His bowel,lung, spine and so on, sitting here typing I can hear his struggle to take in enough air, time to say again we will be ok, thanks for the wonderful memories, always being there, its ok, if the time is right.



    kit
  • Unknown
    Unknown
    #12
    This comment has been removed by the Moderator
  • betsi7
    betsi7 Member Posts: 20
    #13
    unknown said:

    This comment has been removed by the Moderator

    Struggling--need your input
    Two hours after esophagectomy initiated were told liver met found--liver met resected, esophagectomy stopped. Complications (ilieus)-manageable. Visit from surgeon with basically "Good luck--won't be seeing us again.hemo is your new savior," message. Met with oncologist who was incredibly smart and empathic and spent an hour with us late Friday. Ed being discharged and starting chemo Weds. We had come to a certain acceptance before surgery came into the picture and our hopes soared. Now we are back to trying to regain realistic but forward moving perspective. Yesterday I just didn't think I could dig it out again--there were medical issues with our diabetic daughter, Ed was still stuck with an NG tube r/t an avoidable ileus. Today--there is a small glimmer to work with. I so respect the wisdom you have gained on this journey and just need something--comfort? advice? Not to have to reinvent the wheel when devastated?
  • Unknown
    Unknown
    #14
    betsi7 said:

    Struggling--need your input
    Two hours after esophagectomy initiated were told liver met found--liver met resected, esophagectomy stopped. Complications (ilieus)-manageable. Visit from surgeon with basically "Good luck--won't be seeing us again.hemo is your new savior," message. Met with oncologist who was incredibly smart and empathic and spent an hour with us late Friday. Ed being discharged and starting chemo Weds. We had come to a certain acceptance before surgery came into the picture and our hopes soared. Now we are back to trying to regain realistic but forward moving perspective. Yesterday I just didn't think I could dig it out again--there were medical issues with our diabetic daughter, Ed was still stuck with an NG tube r/t an avoidable ileus. Today--there is a small glimmer to work with. I so respect the wisdom you have gained on this journey and just need something--comfort? advice? Not to have to reinvent the wheel when devastated?

    This comment has been removed by the Moderator

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