WE DO GET IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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To Whitney and all the others who are on this journey.

Sometimes I felt like Vince and I were on an island all by ourselves(one very sick) and one healthy (physically, not emotionally) . We would float around not ever knowing what would happen next.


I read Lee in London's post and He sounds so much like my Vince. After awhile the chemo (Sometimes) is just too much for the body. Sometimes you have to just let go.

I truly am not sending this out to ANYONE who has EC in the early stages and who has a fantastic outcome coming up but for the rest of us who don't or who didn't like My Vince .I
GET IT. We all who have lost GET IT.

No one else can ever walk in our shoes, and anyone that says they know how you feel is lying to you. They don't have a clue.

I have had more things said to me in my journey that have just about killed me than I care to know.

Last week someone told me I need a psychiatrst as I was like a yoyo. One day up and one day down since Vince passed away 6 months ago. I didn't know what I was doing and that I was not behaving(I guess) the way she thought I should. I spoke with my hospice counselor about it and she was not surprised. The comments your so-called friends make are totally irrational at times.

So please all of you that need and want the comfort of this site you are right at home.The people here all GET IT . We know how you feel, at every part of your journey, and we all care so much.


I love all of you wand without this site I would not have survivied. Since Vinc's passing I have a WONDERFUL counselor thru hospice who has kept me going. Bart Frazzatti, from fight EC.com, has become a good friend thru the internet. He has chosen to dedicate his life to this disease as he has survivied it for 11 years.
People like this GET IT.


Just remember you are not alone EVER.


Barbara

Comments

  • LeeinLondon
    LeeinLondon Member Posts: 103
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    hi there
    Hi Barbara;

    Thanks for trusting us enough to share your feelings so honestly. I'm at the stage where I'm struggling with guilt. I feel like I'm such a burden on my wife, and all I do is complain.. the hard part is, there's not much to say good things about! When you feel like crap all the time and don't eat, it's pretty hard to say "Hey let's go to the circus!" or "What a beautiful day!" when sunshine makes you nauseous. I have to store up the energy to shower, the liquid diet makes me "gassy" so I feel gross and unattractive.

    This thing has no good points, no saving grace, no bonuses, it is just plain evil in every sense of the word, a relentless eating machine that eats our bodies, our souls and our hope from the inside.

    I definitely "get it" :)

    make your day the best it can be.

    - Lee
  • chemosmoker
    chemosmoker Member Posts: 501
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    Thank you Barbara!
    Thank you for sharing of yourself so honestly, again and again!
    You have touched me with you posts and you seem to have a way with words.

    Sometimes I feel like I am NOT part of the "group" what with everyone sharing about their surgery, and their junior class (not that I would EVER wish anything but a speedy recovery for these 'lucky ones' who get to have surgery and possibly live, at least for a while longer than I, and to their families posting here!) and especially the chemo experiences.
    I feel guilty for NOT being sick, more sick I should say, not nauseated, not exhausted but tired easily and out of breath at doing nothing (the mets to lungs I suppose) compared to what I USED to be able to do, my hair is not falling out, and then I feel so ungrateful for feeling that way. I should be grateful for being alive and not having these side effects of chemo, but I still want the freedom to complain and feel my many pains and that I am as sick. Just because I chose as an informed decision NOT to even start chemo, doesn't mean that I don't have stage IVb cancer or that I am not dying just as fast, it just means that I am taking a different route. I couldn't HELP but notice that those I was following were dying of starvation or malnutrition or malabsorption faster than the cancer was killing them, not that this is still not the cancer, but when, to my overly educated mind (not an ego thing I just do a LOT of research on ANYTHING in my life and always have before making decisions of any kind) it appears that the CHEMO has caused much more speedy problems and brought an end faster than the cancer could have spread and done such things. How, when you are so weak from the poison, are you supposed to FIGHT? BE strong? HOW? Didn't make sense to me then, and still doesn't now. I have been given 4-to-6 months to live now. I feel good, I am on pain management, but I feel good, I am eating very well, I am back up to my usual weight of 145 pounds. WHY do I feel GUILTY about that knowing I am dying? That is just as stupid as my thinking gets with this monster robbing Michelle and I of all our hopes and dreams! We were building a house, we were developing our land. Now I sit and watch TV too much and try to take it easy in the air conditioning (something I USED to be in you attic FIXING in the 150+ degree heat without a second though just last year!) and when I DO try to "help" and not let her do everything for us, I get tired and winded and feel so HELPLESS and I KNOW that everyone here with stage IV GETS IT! That's why I come here, that's why I POST here and that's why I am logged in almost every day, all day, even if I am "away" my laptop sits here, on the site, waiting for me to get back and hit "refresh" and see who's posted what and see if I can relate, help, answer, or just read and learn (the majority of the time its I am learning still). I love this site and all of you.
    It is scary to go back just a year on the board and see that other than William and the caregivers here like Sherri and Barbara and many others, all the names have changed and we have lost SO many. It is really scary to have to accept that I am not long for this world. I LOVE my life, I love my wife, and I am PISSED that I cannot complete my plans, our plans.

    Thanks for letting me vent. I hope this is not as all over the place as my head tends to be!
    If my posts look good, it's only because of spell and grammar check.
    My typing is terrible!

    -Eric

    I GET IT, I KNOW you get it, I know so many here do get it.
  • NikiMo
    NikiMo Member Posts: 342
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    Thank you Barbara!
    Thank you for sharing of yourself so honestly, again and again!
    You have touched me with you posts and you seem to have a way with words.

    Sometimes I feel like I am NOT part of the "group" what with everyone sharing about their surgery, and their junior class (not that I would EVER wish anything but a speedy recovery for these 'lucky ones' who get to have surgery and possibly live, at least for a while longer than I, and to their families posting here!) and especially the chemo experiences.
    I feel guilty for NOT being sick, more sick I should say, not nauseated, not exhausted but tired easily and out of breath at doing nothing (the mets to lungs I suppose) compared to what I USED to be able to do, my hair is not falling out, and then I feel so ungrateful for feeling that way. I should be grateful for being alive and not having these side effects of chemo, but I still want the freedom to complain and feel my many pains and that I am as sick. Just because I chose as an informed decision NOT to even start chemo, doesn't mean that I don't have stage IVb cancer or that I am not dying just as fast, it just means that I am taking a different route. I couldn't HELP but notice that those I was following were dying of starvation or malnutrition or malabsorption faster than the cancer was killing them, not that this is still not the cancer, but when, to my overly educated mind (not an ego thing I just do a LOT of research on ANYTHING in my life and always have before making decisions of any kind) it appears that the CHEMO has caused much more speedy problems and brought an end faster than the cancer could have spread and done such things. How, when you are so weak from the poison, are you supposed to FIGHT? BE strong? HOW? Didn't make sense to me then, and still doesn't now. I have been given 4-to-6 months to live now. I feel good, I am on pain management, but I feel good, I am eating very well, I am back up to my usual weight of 145 pounds. WHY do I feel GUILTY about that knowing I am dying? That is just as stupid as my thinking gets with this monster robbing Michelle and I of all our hopes and dreams! We were building a house, we were developing our land. Now I sit and watch TV too much and try to take it easy in the air conditioning (something I USED to be in you attic FIXING in the 150+ degree heat without a second though just last year!) and when I DO try to "help" and not let her do everything for us, I get tired and winded and feel so HELPLESS and I KNOW that everyone here with stage IV GETS IT! That's why I come here, that's why I POST here and that's why I am logged in almost every day, all day, even if I am "away" my laptop sits here, on the site, waiting for me to get back and hit "refresh" and see who's posted what and see if I can relate, help, answer, or just read and learn (the majority of the time its I am learning still). I love this site and all of you.
    It is scary to go back just a year on the board and see that other than William and the caregivers here like Sherri and Barbara and many others, all the names have changed and we have lost SO many. It is really scary to have to accept that I am not long for this world. I LOVE my life, I love my wife, and I am PISSED that I cannot complete my plans, our plans.

    Thanks for letting me vent. I hope this is not as all over the place as my head tends to be!
    If my posts look good, it's only because of spell and grammar check.
    My typing is terrible!

    -Eric

    I GET IT, I KNOW you get it, I know so many here do get it.

    Eric
    Eric,


    I don't think I have ever written to you directly, and I just wanted to take a little time to write you a note. I want to first say that I enjoy reading your posts, you are honest and upbeat and that amazes me. You seem at peace with the decision you have made for your treatment plan and ultimately that is what is needed when making such an important decision in life. Your wife sounds like a wonderful woman, and how truly blessed you are to have each other. I can't imagine what you are going through right now as a couple, I am in a different journey with my husband as we prepare for surgery. While I can't completely understand what you and your wife are going through, I do understand what it is like being a family member of someone who battled stage four cancer. I lost my grandmother (who raised me) ten years ago to stage IV lung cancer, I was 17 and I was devastated by the loss. I shutdown on a personal level and wouldn't allow myself to become close to anyone for a long time, in fact I pushed most of my friends and family away and escaped to college 7 hours away from my home town. I thought that just not dealing with the feelings I had would be easier and I that I would never have to deal with this kind of loss again for a very long time. Obviously this was not healthy, and I am certain that you are dealing with your cancer and your family in a much different manner. I wasn't even made aware that my grandmother's cancer was not curable until she was in a comma, I was completely blindsided. I appreciate your honest approach to this disease, ultimately it is healthier for your entire family. And it doesn't sound like you dwell on all of the downsides of cancer, obviously not by the choices you have made.

    Jeff and I had been married six years when he was diagnosed. Our life was upended by this disease, I try to stay positive as his was caught at an earlier stage, but I still live in fear of what could happen. That is terrible and I wish I could make that go away, but I can't it is always at the corner of my mind. I know that we should feel like we are 'lucky', but I absolutely do not feel that way. I hope that you do not feel alienated by the folks that are having surgeries. We may not completely understand what you are going through, but I can attest that I feel angry, scared, sick to my stomach, and PISSED! That sounds familiar right? Unfortunately we are all apart of this group, some of us just have different paths.

    Again I admire your strength in the face of EC,

    Niki
  • chemosmoker
    chemosmoker Member Posts: 501
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    NikiMo said:

    Eric
    Eric,


    I don't think I have ever written to you directly, and I just wanted to take a little time to write you a note. I want to first say that I enjoy reading your posts, you are honest and upbeat and that amazes me. You seem at peace with the decision you have made for your treatment plan and ultimately that is what is needed when making such an important decision in life. Your wife sounds like a wonderful woman, and how truly blessed you are to have each other. I can't imagine what you are going through right now as a couple, I am in a different journey with my husband as we prepare for surgery. While I can't completely understand what you and your wife are going through, I do understand what it is like being a family member of someone who battled stage four cancer. I lost my grandmother (who raised me) ten years ago to stage IV lung cancer, I was 17 and I was devastated by the loss. I shutdown on a personal level and wouldn't allow myself to become close to anyone for a long time, in fact I pushed most of my friends and family away and escaped to college 7 hours away from my home town. I thought that just not dealing with the feelings I had would be easier and I that I would never have to deal with this kind of loss again for a very long time. Obviously this was not healthy, and I am certain that you are dealing with your cancer and your family in a much different manner. I wasn't even made aware that my grandmother's cancer was not curable until she was in a comma, I was completely blindsided. I appreciate your honest approach to this disease, ultimately it is healthier for your entire family. And it doesn't sound like you dwell on all of the downsides of cancer, obviously not by the choices you have made.

    Jeff and I had been married six years when he was diagnosed. Our life was upended by this disease, I try to stay positive as his was caught at an earlier stage, but I still live in fear of what could happen. That is terrible and I wish I could make that go away, but I can't it is always at the corner of my mind. I know that we should feel like we are 'lucky', but I absolutely do not feel that way. I hope that you do not feel alienated by the folks that are having surgeries. We may not completely understand what you are going through, but I can attest that I feel angry, scared, sick to my stomach, and PISSED! That sounds familiar right? Unfortunately we are all apart of this group, some of us just have different paths.

    Again I admire your strength in the face of EC,

    Niki

    Thank you!
    Niki,
    Thank you for writing to me in such a caring way. I am touched.

    I hope I didn't give the impression to you or anyone else that there is anything wrong with being a surgical candidate. That is just not something to feel guilty or bad about-ever!
    THAT is a blessing. A BIG blessing. I am in awe of those that I feel have a whole lot more courage than I, those who have endured or are about to endure a THE, TIE, TTE, MIE, there are so many initials and I am sure I messed some of those up, but I am serious when I say it takes a TON more courage than what I am doing (basically, palliative pain management) to face this beast and to face those major, life changing surgeries.

    When I was diagnosed, early on when the thoracic surgeons were still seeing me, I had to decide if I could endure and face those choices as an option for recovery. I will be completely honest with you and admit that if I WERE stage III or earlier caught, I do not think I would go through with any of those surgeries anyway.

    Yes, it is terrifying to wake every day, basically waiting for my cancer to consume the next part of my life. Will I start loosing blood today? Will I lose my eyesight or have heart complications (I already have heart issues and that was another factor in my ability to face surgery and chemotherapy) or will today be peaceful and will I get another repeat of yesterday? I hope for the latter each and every morning. I am grateful when I wake up without some new pain or fear brought on by those pains. I don't want this to be a pity party, I am just relating a day in the life.

    I am SO happy when someone gets a positive CT or PET (as Michael just did) or NED or staging comes back as III or even II and they start the search for a surgeon and scheduling of surgeries and all those fears. THAT is courage in the face of adversity. I am not that brave as I decided I could NOT live with the life they have AFTER the procedure. It is more than I could face. I have not had many "major" surgeries other than when I was 14 and had a bad motorcycle wreck and tore up my leg and arm and skull and teeth, but between Legionnaires and my defibrillator implant and the 11 days in CICU with the diagnosis of Long QT, I have lived in hospitals before. It is not for me, and the thought of having a procedure that all but guarantees that I will have a lifetime of follow-ups and complications (not to make it sound all bad, but honestly) that would almost make certain my worst fears of being in and out of hospitals was a big part of that choice, before it was even taken away by stage IVb results.

    I truly celebrate those able to face this choice and extend their lives. I have researched that as much as my beloved chemotherapy choice. I was told by thoracic surgeons and oncologists that the mortality rate for post-op in stage III or 'resectable' cases was 30%-100%. In MY case it was made clear before the spreading was apparent that MY expected results would almost certainly be a recurrence after surviving the most traumatic surgery they do. They made clear that this is somewhat experimental compared to open-heart or other high-risk surgeries, and that even a quadruple bypass or organ transplant has a higher success rate, based primarily on the fact that almost without exception this nasty beast rears its ugly head again and again in all the cases they see.

    Sure, there are five years survivals and more, many more. But at some point, at least with my cancer, I was almost guaranteed a recurrence and therefore had to make MY decision on enduring that type of operation and then facing the same pain at a later date. I had already decided LONG ago that I would not be kept alive by machines or external resources, ever. This life I live now is just an extension of those decisions and feelings. I have had a DNR since my heart trouble and my wife has known what to do should I go into a coma or worse on the table or on the couch. We HAD planed to go together, long before we were burdens to society so to speak, as neither of us wants wheelchairs, colostomy bags or diapers. We had this down pat, and it IS part of the reason I do have so much peace about my choices and chances. I am at peace with death. I am OKAY with whatever time I have and I am making to most of it now, thankfully without vomit, fatigue, mouth sores, hand and foot syndrome, chemo brain, and infinitum. For this, I am grateful. It is the UNFAIR part that kills me now, the not getting to LIVE out our lives, together, and share in our plans and dreams, and to have her taken away from me, and me taken away from her (which IS worse I can see) is just so unfair and so maddening I could SCREAM. It won't fix it to focus on it and it makes me crazy so I try to retain some composure for those around me, but it isn't easy at all.

    I am just as happy to read about people who will get to enjoy years more than I will. Everyone has their own tolerance and level of acceptable pain and suffering. Mine is low. Most are much higher. I always joke it's a good thing that women have the babies, or there may not be another generation of us around. I have begun to rethink that theory watching the men on these boards endure these procedures and chemotherapy and continue to fight and go on.

    I just never felt I was giving up or not fighting. I am just doing it differently. I am also not trying to impress ANYONE, here or in my house. I am trying to stay alive and comfortable for as long as I can, within reason. Then, hospice and acceptance will take their marks and I will stop posting. I have asked Michelle to post if I go so you will know. I hope it's a LONG time from now, but that is the one thing NONE of us know, or have any control over.

    I hope this makes sense and says what I was trying to. I may have to edit, lol.
    Thanks for the nice post and for the chance to rant, again! And remember, everything I say here applies only to ME. This is right for ME. I am not suggesting this for anyone else or advocating my way as right. Please, make you own decisions based on your own research before beginning or ending ANY cancer treatment. Except pain management.

    -Eric