For Daisylin, LeeInLondon, Chemosmoker

TerryV
TerryV Member Posts: 887
in Esophageal Cancer #1
Chantal, Lee and Eric,

I have been intending to write this for a few days. MrsBotch's thread made me realize the time is right.

I have seen all of you exemplify grace, courage, and faith from what you relate in your posts. Your experiences have brought true meaning to these words for me.

I have followed Chantal posts and have tried to learn how to be a supportive caregiver from what she posts. I was grateful when Lee joined and shared; his comments helped me refocus and calm. I have learned the value of when to bite my tongue from Eric’s posts about Michelle’s silence in the decision making process. I read Joann’s loving posts about Steve’s journey with EC IVb and marveled at how he remained in control throughout. I see both Lee and Eric making similar strong choices - doing things their way.

You write well and have so much to share. I hope that you continue to share your feelings, your experiences, and your support for those with EC. Your anger at EC is justified, you words inspiring.

I may not “get it” at the level you do, but I do understand Love, Marriage, Commitment, and Partnership, and the fear of losing that too early. I pray daily for medical miracles and extended quality time and health for all.

Blessings to you all. I wish you peace and joy in your days.

Comments

  • Daisylin
    Daisylin Member Posts: 365
    #2
    Thank you
    Thank you so much for the kind words, but honestly it's a lot easier to sound graceful and courageous when you can sit here for hours on end editing and re-reading your words before you hit 'post comment'. Honestly, some days I want to get on here and swear, cry and punch the screen. If I wrote what I truly wanted to say, I'd have been banned long ago!

    I also am amazed by everyone here, William and Sherri who don't need to be here helping out, but do it anyways. Cheryl fighting the stage iv battle, Callaloo, Mary, and everyone else who has touched my life so many times, in so many ways.

    Jo-Ann has been a rock and my personal role model on how to handle tragedy. We joined here around the same time, and I've been following her journey closely, both in a personal sense and as a friend supporting a friend. (even though we'll never meet)

    Chemosmoker, who allowed me to finally completely accept that deciding not to do chemo can be a good thing. I admire his wife Michelle for being so strong and loving to allow Eric to make his own choice, without guilt, pressure or well intentioned advice. I often wonder what would have happened if we chose that same exact path. Lee was feeling overall very healthy up until day one of chemo. Things have drastically gone downhill since. Perhaps it would have been the same, perhaps not. I will not allow myself to wallow in the what if's though. We made the best choices that we could and are learning more and more about the power of 'choice'. I suppose if we chose no chemo from the start, I'd be what if-ing about that too.

    As for my dear husband Lee, he is an amazing man, both intelligent and brave. (he hates being called brave about cancer, but truly, anyone who can face the miserable side effects for months on end is brave in my books) I can't imagine what he goes through every day. He feels extreme guilt because I have become caregiver and nurse. But on the other side, I feel extreme guilt that I am eating, drinking and physically healthy. I wish more than anything that I could take his pain away, if only for a minute. We have only been married for a little over a year, I feel robbed. I am only 39 and not ready to lose the love of my life. We had such grand plans!

    There are so many of you here that I admire, respect and am insanely jealous of. I so envy those of you who can have surgery and kick this thing in the butt. I don't envy the process you have to go through to get there, but, at least you get the chance. I want so badly to be part of the graduating class. I follow your stories and look forward to the updates and celebrate with you from afar. I've cried for all of you, and of course wish the best for all of you. You are all so courageous, supportive and loving. I'm glad to be part of such a fantastic group, even though we all hate being here. I am so sad to see the recent addition of so many newbies, and wish them all the best.

    You don't have to be a stage iv to get it, you all get it, that's why you're here. We are all terrified, sad, overwhelmed, exhausted and angry. We do the best we can with what we've been given. It helps to have people who KNOW, who GET it, and who will cry with me.

    Thanks for the kind words, really means a lot.
    Take care, be well
    Chantal
  • chemosmoker
    chemosmoker Member Posts: 501
    #3
    WOW and WOW...ok and WOW
    Damit, you've BOTH got me crying now.

    Those were two of the most touching, beautiful anf moving posts I have ever read.

    I don't deserve any of the compliments but I am always grateful if anything I have rambled about has helped anyone in any way.

    I could not agree with Chantal more, you GET IT. The dues we have paid to join this (and ANY of the cancer boards) is WAY TOO HIGH!! I think at times that the CAREGIVERS have it a LOT harder than us cancer carriers. From what Michelle has taught me and what I see and feel, it has got to be the HARDEST thing in life to have to be the one who wakes up the next day, the one I do not get to have, and try to go on. THAT is strength, that is courage. I do not dwell there long, as that one is a killer.

    It is a miracle to get through a day living like we do. I think I have it easy most days and that WILL come crashing down on me at some point in the not to far off future that is my life now. I live under NO illusions. I just chose not to do what I saw others doing, that seemed to be the norm, that was bringing so many down when it seemed that the cancer had not yet. I do not think there is a right or wrong here at all. There is only what is right for each person. We can share so much, but these decisions HAVE to be from within and from a place of peace and trust that no one should ever have to face. Much less at 30, 40, hell there is NO age that someone should have to give up their dreams and loves. It isn't fair. But I do know now that life isn't fair and this is the strongest proof I wish I had never known.

    I am a NEWBIE in a big way here. I read allot. But I own a HUGH HUGE debt to Sherri, Barbara and William, who's names I learned here fast and saw again and again, and their posts- I took the time to go back and read and re-read for weeks before I ever joined and murmured a word one here! There as SO many here that I owe that debt to for their sharing and knowledge and all those before me that have shared and that helped ME make and reach MY decision. IF I even tried to start naming any MORE names, I would leave someone out and I don't want anyone's feelings hurt; we have enough of that, daily. Just suffice it to say that I have learned anything I say that sounds good from someone here that came (and many that went) before me and I am lucky to have spell-and grammar-check to make my posts look so good.

    I know that routine that Chantal spoke of SO SO SO well, sitting here, editing and re-reading and making a thousand changes before ever hitting that "POST" button! You said it so well. I am in awe of so many here and I am grateful to my many FRIENDS who I do not need to meet face to face to KNOW them, really know them. We walk in each others shoes here daily, and it is such a wonderful, terrible, awful blessing that we all have each other, and let us not forget, this site that has been provided by the ACS. Where would we be without it?

    Thank you for brightening MY day, and Michelle's day.
    Thank you.
    Otherwise I am speechless.

    -Eric
  • jojoshort
    jojoshort Member Posts: 230 Member
    #4
    Thank you
    Sadness comes and sadness goes in my life right now. But, I feel like one of the lucky ones on this earth. My relationship with my best friend and husband was a great one. We have two wonderful young adult children. A nice home. A SAILBOAT! (of which I am skipper now--big kid stuff for sure).
    But now that we've had our EC journey, the single most important thing is oh-so-clear to me; our relationships with other people. That is what sustained us, what is making it all bearable now, is that there are people in our lives who care. It has brought out the best in everyone, and even those who it didn't learned something from this whole journey.
    To everyone who is a caregiver, or an EC fighter themselves, do yourselves a huge favor, and give yourself the gift of friends.
    The hardest thing I did today was walk into the little sailing club after the races, all by myself, and just hang out. Once there, it's great--lots of friendly and caring faces. All helpful. But the long walk in by one's self is a new thing for me, and it takes some courage to do so. For 34 years I had a partner by my side, and now I walk alone. And you know what? It's hard, but it's okay.
    If you can find the energy to invite someone over, even for 5 minutes, do it. It will lift your spirits and renew the bonds of human companionship. All the care must be done, work, housework, etc., etc., etc., but give yourself that gift of a visit from a friend. You won't regret it.
    Jo-Ann
  • birdiequeen
    birdiequeen Member Posts: 319
    #5
    jojoshort said:

    Thank you
    Sadness comes and sadness goes in my life right now. But, I feel like one of the lucky ones on this earth. My relationship with my best friend and husband was a great one. We have two wonderful young adult children. A nice home. A SAILBOAT! (of which I am skipper now--big kid stuff for sure).
    But now that we've had our EC journey, the single most important thing is oh-so-clear to me; our relationships with other people. That is what sustained us, what is making it all bearable now, is that there are people in our lives who care. It has brought out the best in everyone, and even those who it didn't learned something from this whole journey.
    To everyone who is a caregiver, or an EC fighter themselves, do yourselves a huge favor, and give yourself the gift of friends.
    The hardest thing I did today was walk into the little sailing club after the races, all by myself, and just hang out. Once there, it's great--lots of friendly and caring faces. All helpful. But the long walk in by one's self is a new thing for me, and it takes some courage to do so. For 34 years I had a partner by my side, and now I walk alone. And you know what? It's hard, but it's okay.
    If you can find the energy to invite someone over, even for 5 minutes, do it. It will lift your spirits and renew the bonds of human companionship. All the care must be done, work, housework, etc., etc., etc., but give yourself that gift of a visit from a friend. You won't regret it.
    Jo-Ann

    Here here skipper!
    You are spot on with this message! It is the single most important thing.
  • fredswilma
    fredswilma Member Posts: 185
    #6
    jojoshort said:

    Thank you
    Sadness comes and sadness goes in my life right now. But, I feel like one of the lucky ones on this earth. My relationship with my best friend and husband was a great one. We have two wonderful young adult children. A nice home. A SAILBOAT! (of which I am skipper now--big kid stuff for sure).
    But now that we've had our EC journey, the single most important thing is oh-so-clear to me; our relationships with other people. That is what sustained us, what is making it all bearable now, is that there are people in our lives who care. It has brought out the best in everyone, and even those who it didn't learned something from this whole journey.
    To everyone who is a caregiver, or an EC fighter themselves, do yourselves a huge favor, and give yourself the gift of friends.
    The hardest thing I did today was walk into the little sailing club after the races, all by myself, and just hang out. Once there, it's great--lots of friendly and caring faces. All helpful. But the long walk in by one's self is a new thing for me, and it takes some courage to do so. For 34 years I had a partner by my side, and now I walk alone. And you know what? It's hard, but it's okay.
    If you can find the energy to invite someone over, even for 5 minutes, do it. It will lift your spirits and renew the bonds of human companionship. All the care must be done, work, housework, etc., etc., etc., but give yourself that gift of a visit from a friend. You won't regret it.
    Jo-Ann

    Hi Jo-Ann
    What a stunning
    Hi Jo-Ann
    What a stunning lady you are, Steve would have been so very proud of you. Thank you for your words, thinking of you and hoping that peace and eventually joy will surround you and your family.
    Ann
  • chemosmoker
    chemosmoker Member Posts: 501
    #7
    jojoshort said:

    Thank you
    Sadness comes and sadness goes in my life right now. But, I feel like one of the lucky ones on this earth. My relationship with my best friend and husband was a great one. We have two wonderful young adult children. A nice home. A SAILBOAT! (of which I am skipper now--big kid stuff for sure).
    But now that we've had our EC journey, the single most important thing is oh-so-clear to me; our relationships with other people. That is what sustained us, what is making it all bearable now, is that there are people in our lives who care. It has brought out the best in everyone, and even those who it didn't learned something from this whole journey.
    To everyone who is a caregiver, or an EC fighter themselves, do yourselves a huge favor, and give yourself the gift of friends.
    The hardest thing I did today was walk into the little sailing club after the races, all by myself, and just hang out. Once there, it's great--lots of friendly and caring faces. All helpful. But the long walk in by one's self is a new thing for me, and it takes some courage to do so. For 34 years I had a partner by my side, and now I walk alone. And you know what? It's hard, but it's okay.
    If you can find the energy to invite someone over, even for 5 minutes, do it. It will lift your spirits and renew the bonds of human companionship. All the care must be done, work, housework, etc., etc., etc., but give yourself that gift of a visit from a friend. You won't regret it.
    Jo-Ann

    Thank you Jo-Ann
    I will share this post with Michelle for sure if she doesn't see it first!
    Thanks you for sharing such a beautiful experience and one that is so very personal and moving too. I admire your courage.

    It scares the pants off of me to think of leaving Michelle and her having to be alone, but your post say a lot to that end and I thank you for saying it.
    Sounds like you already make a great Skipper. May the winds be at your back the whole way.

    -Eric
  • TerryV
    TerryV Member Posts: 887
    #8
    jojoshort said:

    Thank you
    Sadness comes and sadness goes in my life right now. But, I feel like one of the lucky ones on this earth. My relationship with my best friend and husband was a great one. We have two wonderful young adult children. A nice home. A SAILBOAT! (of which I am skipper now--big kid stuff for sure).
    But now that we've had our EC journey, the single most important thing is oh-so-clear to me; our relationships with other people. That is what sustained us, what is making it all bearable now, is that there are people in our lives who care. It has brought out the best in everyone, and even those who it didn't learned something from this whole journey.
    To everyone who is a caregiver, or an EC fighter themselves, do yourselves a huge favor, and give yourself the gift of friends.
    The hardest thing I did today was walk into the little sailing club after the races, all by myself, and just hang out. Once there, it's great--lots of friendly and caring faces. All helpful. But the long walk in by one's self is a new thing for me, and it takes some courage to do so. For 34 years I had a partner by my side, and now I walk alone. And you know what? It's hard, but it's okay.
    If you can find the energy to invite someone over, even for 5 minutes, do it. It will lift your spirits and renew the bonds of human companionship. All the care must be done, work, housework, etc., etc., etc., but give yourself that gift of a visit from a friend. You won't regret it.
    Jo-Ann

    Powerful words, Jo-Ann
    Thank you for putting things into perspective for us.

    I have enjoyed your stories of Steve and how he faced life. I find them all so encouraging about the strength of the human spirit.

    Thanks for all you share, Jo-Ann.

    Terry
    Wife to Nick, Stage 3

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