Facebook group

llohman
llohman Member Posts: 3
in Esophageal Cancer #1

How can I join your Facebook group? I tried searching for it but couldn't find it. I am a wife of newly diagnosed esophageal cancer patient and I would love to be part of your group and share our journey. thanks, LL

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    Facebook Group

    This is the URL for the Facebook group. https://www.facebook.com/groups/Csnesophagealcancer/

     

    It is a private group. If you send me a friend request I can add you to the group.

     

    Paul D. Adams

  • hot4moritzy
    hot4moritzy Member Posts: 3
    #3
    paul61 said:

    Facebook Group

    This is the URL for the Facebook group. https://www.facebook.com/groups/Csnesophagealcancer/

     

    It is a private group. If you send me a friend request I can add you to the group.

     

    Paul D. Adams

    Could you add me? You can

    Could you add me? You can search me by my email address hot4moritzy@hotmail.com

  • llohman
    llohman Member Posts: 3
    #4
    paul61 said:

    Facebook Group

    This is the URL for the Facebook group. https://www.facebook.com/groups/Csnesophagealcancer/

     

    It is a private group. If you send me a friend request I can add you to the group.

     

    Paul D. Adams

    Hi Paul,
    I believe I sent a

    Hi Paul,

    I believe I sent a friend request to you over the last weekend. Please let me know if you don't see it.

     

    Thanks.

    LL

  • paul61
    paul61 Member Posts: 1,392 Member
    #5
    llohman said:

    Hi Paul,
    I believe I sent a

    Hi Paul,

    I believe I sent a friend request to you over the last weekend. Please let me know if you don't see it.

     

    Thanks.

    LL

    I am sorry I have not seen your friend request.

    I have sent you a private message via CSN Mail with my contact information.

     

    Paul

  • hot4moritzy
    hot4moritzy Member Posts: 3
    #6
    paul61 said:

    I am sorry I have not seen your friend request.

    I have sent you a private message via CSN Mail with my contact information.

     

    Paul

    were you able to find me with

    were you able to find me with that email address? 

  • paul61
    paul61 Member Posts: 1,392 Member
    #7
    hot4moritzy said:

    were you able to find me with

    were you able to find me with that email address? 

    Private Message

    I have sent you a private message with my contact information

    Paul

  • jaycc
    jaycc Member Posts: 122
    #8
    Facebook group getting to others

    Connecting with others. There are wonderful people on the CSN group. If you need it here is a link to a list of EC discussion groups. where you can find people actively talking about EC. Also a list of survivors .

    http://www.ecaware.org/ecsurvivor/discussion-groups/

  • mandarm77
    mandarm77 Member Posts: 2
    #9
    paul61 said:

    Facebook Group

    This is the URL for the Facebook group. https://www.facebook.com/groups/Csnesophagealcancer/

     

    It is a private group. If you send me a friend request I can add you to the group.

     

    Paul D. Adams

    Friend ship Request

    My mother is suffering wiht Esophagus cancer. Pl. add me to this group. Can be benificial to me

    Regards,

    Mandar Mahajan

    India

    Email- mandarm77@gmail.com

  • AllisonM688
    AllisonM688 Member Posts: 1
    #10
    paul61 said:

    Facebook Group

    This is the URL for the Facebook group. https://www.facebook.com/groups/Csnesophagealcancer/

     

    It is a private group. If you send me a friend request I can add you to the group.

     

    Paul D. Adams

    facebook group

    Can you add me to the facebook group?  My name is Allison Held Mosele.  My husband's surgery was unsuccessful as the tumor was outside the musclular wall and is wrapped around some important organs.  Currently looking for another course of treatment.

     

  • paul61
    paul61 Member Posts: 1,392 Member
    #11
    AllisonM688 said:

    facebook group

    Can you add me to the facebook group?  My name is Allison Held Mosele.  My husband's surgery was unsuccessful as the tumor was outside the musclular wall and is wrapped around some important organs.  Currently looking for another course of treatment.

     

    Allison, I have sent you a message to join the Facebook Group

    Allison,

    I have sent a message to your Facebook account to send me a "friend" request and I can add you to our EC Facebook Group

    Paul

  • Iatorf
    Iatorf Member Posts: 1
    #12
    FacebookGroup

    can you please send me an invite - Joan Drisdale Powell

    My husband has stage 2 and begins week 4 of chemo and daily radiation on Monday. We are trying to find out the best surgery options - full removal of his esophagus.

    Thank you.

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #13
    Iatorf said:

    FacebookGroup

    can you please send me an invite - Joan Drisdale Powell

    My husband has stage 2 and begins week 4 of chemo and daily radiation on Monday. We are trying to find out the best surgery options - full removal of his esophagus.

    Thank you.

     

    Best surgery option is Minimally Invasive Esophagectomy MIE

    Hello, I am not part of the FACEBOOK group, although I know many of them that are on there.  The Ivor Lewis Minimally Invasive Esophagectomy pioneered by Dr. James D. Luketich at the University of Pittsburgh Med. Ctr. is totally laparoscopic.  It has the quickest recovery and the least morbidity.  Glad to hear your husband is Stage 2 and not a later stage.  My husband is now in his 14th year of remission without any recurrence.  We highly recommend going to a major hospital where the MIE is routinely used as their main surgery for Esophageal Cancer.  Paul 61 will be along soon and give you the info you need to join the group.  My husband I simply refuse to "tweet" or do "Facebook".  Otherwise, you would see me there.  Many of them know our story.  And before they moved to form a private facebook group we had great communication, sharing and caring.  I'm sure you will be helped greatly. 

    Loretta Marshall, wife of William Marshall, diagnosis Adenocarcinoma at the GE Junction, EC Stage III (T3N1M0), Ivor Lewis Minimally Invasive Esophagectomy by Dr. James D. Luketich @ UPMC on May 17, 2003!

  • coffeepoet
    coffeepoet Member Posts: 9
    #14
    Facebook Group

    I'd like to join too, Paul, but there are too many people with your name for the Facebook search to narrow you down enough. 

  • dodger21
    dodger21 Member Posts: 85 Member
    #15
    Facebook

    Hey!

    i haven't been on this site since the 'drama' happened and the Facebook page was formed. I read that FB page daily.

     

    i just came back onto this site as a friend of a friend was diagnosed, and I checked to see if this site was active again. I am so glad William and Loretta are going strong. That made my day.

    if you still are having trouble accessing the FB site, send me a private message and I'll add you.i am Dani TR on FB and I'm holding up the leaning tower of Pisa in my profile pic.

     

    but trust me, you won't get better advice than what Loretta posts here

  • Imreelfun1
    Imreelfun1 Member Posts: 1
    #16
    paul61 said:

    Private Message

    I have sent you a private message with my contact information

    Paul

    Join Your FB Page

    Hi Paul, my husband was diagnosed with IV EC in July 2016. Would love to join your FB page - but can't seem to find it or you. Could you please friend me? Laura Williams-Smith Thank you Paul!

  • dodger21
    dodger21 Member Posts: 85 Member
    #17
    Loretta

    Hi Loretta,

    i just told the old CSN FB gang you say hi.

     

    i cut and pasted the bottom of your above post, especially your famous dancing in the rain quote.

     

    but I had a little chuckle. It's been that long ago since William was diagnosed you are now getting the decades wrong...lol! It was 2002, not 2012!  Isn't it wonderful  that you can have that 'great' mistake of mixing  the decades up!

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #18
    Dodger~U might want to share this poem with the FB group!

    Hello again “Dodger”

     You’re so right, I got the dates wrong.  It’s good to hear from you again.  William's diagnosis was in 2002--mine was in 2012.  Glad you remembered. 

    You might also want to share this poem by Erma Bombeck with the FB group.  You know we think we value life, but not until we’ve had a cancer diagnosis do we really begin to feel like we’ve let too much time pass by and put off simple pleasures until “tomorrow.”  As each day dawned, how many of us thanked God for a sunrise?  I’ll confess to taking that for granted.  And even for the ability to be able to “see”.  Life does become more precious when it seems there will be less of it. 

     And then when the “tomorrows” are no longer taken for granted, we come to the same conclusion as did Erma.  And once we’ve had cancer ourselves, we are able to sympathize with another patient in a way that others who are still healthy cannot.  Some have said to me, “Oh well, we’re all going to die sometime.”  To which I say, “Yes but it takes on a new meaning when your name is near the top of the list.”  Actually well-meaning people should be more careful in their choice of words when speaking with cancer patients, would you not agree?  Actually, I’m not despondent because I’m a firm believer in Psalm 23, but there’s never a time when I want to just “pack up and move on.”  (That is until cancer becomes so invasive that quality of life is no longer a possibility.) 

     Okay I thought this poem by Erma wraps it up in fine fashion.  And perhaps others who read it will take her words to heart, and live life and love life every day, and not put off anything that you’ve been wanting to do.  Tomorrow isn’t guaranteed! 

     Love Loretta

     ___________________________________________________________________

                                                              If I Had My Life To Live Over

     “If I had my life to live over, I would have talked less and listened more.

    I would have invited friends over to dinner even if the carpet was stained and the sofa faded.

    I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

    I would have taken the time to listen to my grandfather ramble about his youth.

    I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

    I would have burned the pink candle sculpted like a rose before it melted in storage.

    I would have sat on the lawn with my children and not worried about grass stains.

    I would have cried and laughed less while watching television - and more while watching life.

    I would have shared more of the responsibility carried by my husband.

    I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

    I would never have bought anything just because it was practical, wouldn't show soil or was guaranteed to last a lifetime.

    Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

    When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."

    There would have been more "I love you's"... More "I'm sorry’s" ...

    But mostly, given another shot at life, I would seize every minute... look at it and really see it ... live it...and never give it back. ”  

     

    (Written by Erma Bombeck after she found out she had cancer.)

     

     

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #19
    Dodger~Glad U checked N & thanks 4 the uplifting compliment!

     Good morning “Dodger”!

     You know my mama told me I should always say “thank you” when someone pays you a compliment.  So let me say “thank you” for remembering my husband and me.  You and I both “remember” the DRAMA back in Sept. of 2012 that resulted in the formation of the FB group.  I’m sure it’s good not to have someone critiquing your every word.  I miss the days when our “old gang” chimed in and ten or more would comment on the same patient and we really felt like one big family, all fighting the same villain, CANCER.  And never did I dream back then that I would switch roles with my husband and he would be the caregiver and I would be the STAGE IV Ovarian Cancer patient 10 years after his initial diagnosis in 2002.

     But never a day goes by that we don’t thank the Lord for 14 years of good health following his Minimally Invasive Esophagectomy.  And I am thankful that I’m still alive after my initial diagnosis of Peritoneal Carcinomatosis in 2012.  I remember “Billy” asking Dr. Conkling, “Should I say I am cured?”  To which Dr. Conkling replied, “I’d prefer you say you’re in remission.”  And so that’s what we say.  I make weekly visits to the oncology clinic.  Our “ministry” of encouragement is still going strong.  We never hesitate to discuss different cancer diagnoses with the other patients there.  They are always encouraged when they talk to a cancer patient who has lived longer than they expect to live.  I remember talking to an older lady who had been battling Ovarian Cancer for 8 years.  That was an encouragement to me.  And that’s what this whole site is supposed to be about--informing, encouraging, and lifting up the down trodden weighted down by the burden of cancer.  And so once more I thank you for remembering our former years together. 

     As you will notice, I am NOW the cancer patient, and as such, have chosen to incorporate my own remarks about my cancer with the knowledge and experience gained from being a caregiver to my husband who was diagnosed with Adenocarcinoma at the Gastroesophageal junction, EC Stage III (T3N1M0) back in 2002.  I cannot begin to name all the friends we have met, helped and prayed for during those years.  We’re still in touch with many of them.  Paul61 and JoelC are still here.  There may be other “old timers”, but Paul is faithful to respond often. 

     And who can forget “Sherri” and all her wonderful advice?  I always called her my “online doc!”  Who doesn’t need support, and that includes prayers?  And so I’m thankful for all those who were helped by us all those years.  And as long as I’m able, I’ll be checking in on the Esophageal, Peritoneal and Ovarian Cancer links to see if our experiences can help guide another lost soul along the way.

     And as William always liked to say, “I’m just one beggar telling another beggar where to find a piece of bread!”  And as long as I have life and energy, that will be my goal.  The lessons learned in life by unpleasant experiences stay with us the longest, do they not?

     And as we always said so often, “Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain.”  And so when you speak to the FB group, say hello from both of us.

     Wishing you and the whole FB group well,

     Loretta Marshall

     Wife of William Marshall, diagnosed in November of 2002, who had pre-op chemo of Carboplatin/5-FU and then the Minimally Invasive Esophagectomy by Dr. James D. Luketich at the University of Pittsburgh Medical Center on May 17, 2003.  (Other than our marriage date – a day we shall never forget because we felt we were on our second honeymoon, when he was pronounced cancer-free!) Thank God!

     _________________________________________________________________________

    P.S.  A poem which speaks volumes.  Often things we never want to happen to us happen anyway.  And out of the midst of those sorrows come lessons in life that will help us weather other storms along the way and make us stronger.  Lessons learned in the school of hard knocks stay with us long after the pain has subsided.  Sometimes the pain doesn’t subside, but God gives us the strength to live WITH it!  Sometimes HE takes it away and we live to fight another day. 

     "Along the Road

     by Robert Browning Hamilton

      I walked a mile with Pleasure;
    She chattered all the way,
    But left me none the wiser
    For all she had to say.

    I walked a mile with Sorrow ;
    And ne'er a word said she.
    But oh, the things I learned from her
    When Sorrow walked with me!"

      

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