One year ago today

fredswilma
fredswilma Member Posts: 185
in Esophageal Cancer #1
Mine and my families world fell apart, there we were sitting in an Oncologist's office being told to think of my husbands life in terms of months not years, the confusion still hasn't gone we told the oncologist she must have it wrong he has acid reflux he has had it all his life, I vaguely remember her explaining about barrets syndrome and how the stomach lining is different to the eosaphagus lining, even now when we visit the oncologist I still believe that she is going to say you know oops sorry we got it wrong, and I would totally forgive her.
There has been so many ups and downs (possibly more downs than ups)we have been through one round of Chemo prior to Christmas this was followed by a few months of calm, now we are back at the Chemo table again trying desperately to find another new normal.
This truly is a devastating disease, it takes over and consumes you even when your having a relatively easy time it is still there, with me I know that I hover over Mark trying not to be a nag, but watching him constantly to see what he's eating, whether his temperature is normal, just watching to see if there is any change in him. I cry at the drop of a hat, for no reason, my tolerance for stubbed toes and runny noses is next to zero.
I have learnt so much about EC, that I wish I didn't have to know, even know how to spell it., I have also learnt that life is not about possessions or money it is about those that you love, people make up this world not things, I have no idea what this next year will bring, but me and mine are going to live it and cherish every day, I cannot imagine my life without Mark, I cannot imagine my children's life without their dad, so for the time we have left we are going to pack a lifetime of joy into it, and yes I have learnt to dance in the rain, sometimes it's only a shuffle, but Lord I'm trying.
Thanks for listening guys, this is one anniversary that I wish we didn't have to celebrate, but celebrate it we will.
Ann

Comments

  • hopper52
    hopper52 Member Posts: 108
    #2
    One Day at a Time
    Ann,

    Just know that you and Mark remain in my prayers. Anniversaries are normally a time for celebration. Considering what you all have been through the past year you still should still celebrate because if you've spent much time on this board you'll see many who do not make it to that one year mark. I wish you the best of luck as you take on the beast day by day.

    Michael Daniels
    Brandon, FL
  • LeeinLondon
    LeeinLondon Member Posts: 103
    #3
    Hello Mark and Ann
    All I can write is that I know how you feel. We were married May 23, 2010 and I was diagnosed in January 2011. You want each day to be as "normal" as possible, and sometimes you even get one, and then something reminds me and I go "oh yeah, I got terminal cancer", or I see an elderly lady on the street and realize that she'll likely outlive me.

    In the early days after diagnosis when we were staggering around like a bomb hit us, I realized though, We all must die, and to expect a movie-like death experience wherein our loved ones gather around and we go as peacefully as possible, well, in a way, cancer is like that. Unlike a police officer knocking on your door with some terrible news, I appreciate that within the myriad ways I could die, I indeed will be entitled to something close to that movie-like death. After all, can we think of a more pleasant way to go when the time comes? Imagine the shock and horror of that fateful police call and the sudden mac scramble to make the million arrangements and life changes ahead. Part of me is thankful that we have time to plan, to provide as stable a transition for my wife when the time comes, and to maybe take a few extra minutes to tell those that I care about how I really feel.

    You sound like my wife about the hovering, and it's always the elephant in the room, you want to talk about it but you want to ignore it too and you just wanna kick a wall or eat ice cream or crawl under a blanket for a while. And all of the above are acceptable.

    I feel like I'm rambling but I just wanted to try to let you know that you are far from alone, and every emotion in the book is pushed to extremes, all the while trying to juggle dentist appointments and dry cleaners and all that "real life" that also needs to be nurtured.

    There is no right or wrong way to travel through these dark waters. Just take solace in your love for each other, fight the good fight, and may ultimately you all draw strength from one another.

    Best,
    Lee in London
  • jojoshort
    jojoshort Member Posts: 230 Member
    #4
    Hi Ann
    We're all thinking about you and Mark and hoping you can find some real joy in your days together. Little steps.
    Jo-Ann
  • mruble
    mruble Member Posts: 174
    #5
    LeeinLondon said:

    Hello Mark and Ann
    All I can write is that I know how you feel. We were married May 23, 2010 and I was diagnosed in January 2011. You want each day to be as "normal" as possible, and sometimes you even get one, and then something reminds me and I go "oh yeah, I got terminal cancer", or I see an elderly lady on the street and realize that she'll likely outlive me.

    In the early days after diagnosis when we were staggering around like a bomb hit us, I realized though, We all must die, and to expect a movie-like death experience wherein our loved ones gather around and we go as peacefully as possible, well, in a way, cancer is like that. Unlike a police officer knocking on your door with some terrible news, I appreciate that within the myriad ways I could die, I indeed will be entitled to something close to that movie-like death. After all, can we think of a more pleasant way to go when the time comes? Imagine the shock and horror of that fateful police call and the sudden mac scramble to make the million arrangements and life changes ahead. Part of me is thankful that we have time to plan, to provide as stable a transition for my wife when the time comes, and to maybe take a few extra minutes to tell those that I care about how I really feel.

    You sound like my wife about the hovering, and it's always the elephant in the room, you want to talk about it but you want to ignore it too and you just wanna kick a wall or eat ice cream or crawl under a blanket for a while. And all of the above are acceptable.

    I feel like I'm rambling but I just wanted to try to let you know that you are far from alone, and every emotion in the book is pushed to extremes, all the while trying to juggle dentist appointments and dry cleaners and all that "real life" that also needs to be nurtured.

    There is no right or wrong way to travel through these dark waters. Just take solace in your love for each other, fight the good fight, and may ultimately you all draw strength from one another.

    Best,
    Lee in London

    Very well said
    Lee -
    Great post, Lee -- not rambling at all!

    Ann -
    It's such a gift that Mark is here for this unwanted anniversary. My husband was IVa at diagnosis and I agonized that we would not see another year together. We even renewed our vows on our 24th anniversary because we didn't think there would be a 25th. But he's still here 22 months later and we've made the most of our time. I hope you and Mark are able to do the same!

    Mary
  • sandy1943
    sandy1943 Member Posts: 824
    #6
    Hi Ann, The job of a
    Hi Ann, The job of a caregiver can be very mentally and physically tiring. I have been a caregiver and know how tough it can sometimes be, but we do it out of love. \

    When I went through treatment my husband was my caregiver most of the time and my daughter when he couln't be there. They traveled the journey with me. My husband refer's to my cancer as our cancer and it truly is. It effects every member of the family.

    When I experienced some mild depression after surgery, my daughter was experiencing more. It is very trying for our loved ones to watch us go through this battle.

    I thank God for the ones that are fortunate enough to have a close loved one that can be there for them.

    I mentioned A SONG A couple of weeks ago by Martina Mcbride " i'm going to love you through it". If you haven't heard it, go online and watch the video. I dedicate it to you and all the caregivers,
    Sandra
  • mrsbotch
    mrsbotch Member Posts: 349
    #7
    Ann and Mark
    I so agree with you Ann that once on this horrific journey you learn way too much about EC.
    The only saving grace is hoping that you can either help your loved one or someone else that may read something that you posted.

    The one thing I have learned the most is to make sure you always go to the best surgeon who has done many MIE'S, go to a major cancer center who can treat this properly, Don't sweat the small stuff, be happy whenever you can, and that MONEY means absolutely nothing once you are dealing with EC.
    I mean that only in the way that we focus so much on what we have or need monetarily and when cancer strikes we realize how little possessions mean.

    I did all the things you do now. I would hover over Vince constantly, press him to eat and do all of those things constantly. When you love someone so much it is just the normal thing to do.


    I am so sorry for everyone in this journey now. Its not a nice place to be .

    Please take care of yourselves and know I am here if anyone needs me.


    Love

    Barbara
  • mrsbotch
    mrsbotch Member Posts: 349
    #8
    Ann and Mark
    I so agree with you Ann that once on this horrific journey you learn way too much about EC.
    The only saving grace is hoping that you can either help your loved one or someone else that may read something that you posted.

    The one thing I have learned the most is to make sure you always go to the best surgeon who has done many MIE'S, go to a major cancer center who can treat this properly, Don't sweat the small stuff, be happy whenever you can, and that MONEY means absolutely nothing once you are dealing with EC.
    I mean that only in the way that we focus so much on what we have or need monetarily and when cancer strikes we realize how little possessions mean.

    I did all the things you do now. I would hover over Vince constantly, press him to eat and do all of those things constantly. When you love someone so much it is just the normal thing to do.


    I am so sorry for everyone in this journey now. Its not a nice place to be .

    Please take care of yourselves and know I am here if anyone needs me.


    Love

    Barbara
  • Daisylin
    Daisylin Member Posts: 365
    #9
    mrsbotch said:

    Ann and Mark
    I so agree with you Ann that once on this horrific journey you learn way too much about EC.
    The only saving grace is hoping that you can either help your loved one or someone else that may read something that you posted.

    The one thing I have learned the most is to make sure you always go to the best surgeon who has done many MIE'S, go to a major cancer center who can treat this properly, Don't sweat the small stuff, be happy whenever you can, and that MONEY means absolutely nothing once you are dealing with EC.
    I mean that only in the way that we focus so much on what we have or need monetarily and when cancer strikes we realize how little possessions mean.

    I did all the things you do now. I would hover over Vince constantly, press him to eat and do all of those things constantly. When you love someone so much it is just the normal thing to do.


    I am so sorry for everyone in this journey now. Its not a nice place to be .

    Please take care of yourselves and know I am here if anyone needs me.


    Love

    Barbara

    Hi Ann,
    We have unfortunately all become experts in EC. This is certainly a bitter sweet (with the emphasis on bitter) anniversary. You must be so very happy and thankful to still have Mark by your side one year later. When we are told to think in terms of months, it makes every day so much more important. It makes it even harder when we are constantly doing the one step forward, 2 steps back dance.

    I know exactly how you feel, half expecting the doctor to tell you that they made a terrible mistake. I fantasize about that all the time. "oh, so sorry, we read the scans wrong, newbie doctor reading the scans that day" wouldn't that be nice!

    It sounds like we caregivers have all turned to hovering wives. I hate doing it, but of course, it has to be done. At least we feel like we are doing something to help. Some days I'm sure you feel more like a nurse than a wife. It's such a sad feeling. I hate everything that ec has stolen from us. All of us, not just Lee and I. I feel your love and pain, as well as your sorrow. It can sometimes be so hard just to get through a day, and the minor little things just seem impossible. I hope you celebrate many more milestones and anniversaries together.

    Hang in there, you are doing a spectacular job!
    Chantal

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