Please take heart and listen to those who know

mrsbotch
mrsbotch Member Posts: 349
in Esophageal Cancer #1
There are some wonderful people on this site who know what they are talking about regarding EC and its treatment.

I am so fearful that some newbies may listen to the advise of unqualified people who are telling them what to do and what not to do.

EC is a vicious monster that shows no mercy. I can attest to that with all that my husband Vince went thru. There are so many people on here who truly care and THEY KNOW what they are talking about.

If I knew now what I knew then I truly believe my husband and my lives may have been different and with a better outcome. He may still have passed away BUT his care and last few months may have been better than they were. The chemo killed him as he was starving to death as they did not give him a feeding tube. They put him on PTN. This literally just put more fluid on him.

My husband wanted to stay home and do his treatment in our area where there is no real big cancer center. I wanted him to go to MD Anderson, UPMC, or Sloan. No way would he listen.


I listened to all of the people who were in the know at that time,2010 , until his passing in Feb 2011.

BUT he would not. He just wanted to stay at home and have his treatments.

This site has LITERALLY saved my Life as without hearing from many who went thru what we did I would never have known this much about EC and what it does to families and have been able to survive losing my husband.


We really want EVERYONE here, who has EC or the caregiver, to hear our stories and to try to make good decisions.

NO ONE knows everything but most of us have done our research and we really want to help.

PLEASE PLEASE PLEASE take care of yourselves, go to places where they can really help you, take meds that are prescibed and may help and If they don't help you, and you can always try something else. What works for one may not work for another. Scare tactics about meds should Never be an issue.

I really care


Barbara

Comments

  • Amjosmom
    Amjosmom Member Posts: 212
    #2
    Agreed!
    I only found out about my dad and his diagnosis about a year ago. My family kinda kept the severity of this monster under wraps to protect me, I guess. So, one day I googled EC... and the reality of the situation slammed into me. I felt like I had just been hit by a truck! Since then, EC has consumed my life! I scour the internet daily trying to find answers. I read day and night. But then I was sitting with my dad at one of his chemo infusions and I clicked on an ad which led me here... and BAM!! THE MOTHERLOAD, so to speak. So many answers and people who really know EXACTLY what they are talking about! The truth about this beast. Stories of survival and stories about how this fight can't always be won. I am LISTENING. I am GRATEFUL. It has been a BLESSING to have your honesty and openess, and willingness to share your stories and advice.

    Thank you to everyone here!
  • Bermudagirl
    Bermudagirl Member Posts: 114
    #3
    Amjosmom said:

    Agreed!
    I only found out about my dad and his diagnosis about a year ago. My family kinda kept the severity of this monster under wraps to protect me, I guess. So, one day I googled EC... and the reality of the situation slammed into me. I felt like I had just been hit by a truck! Since then, EC has consumed my life! I scour the internet daily trying to find answers. I read day and night. But then I was sitting with my dad at one of his chemo infusions and I clicked on an ad which led me here... and BAM!! THE MOTHERLOAD, so to speak. So many answers and people who really know EXACTLY what they are talking about! The truth about this beast. Stories of survival and stories about how this fight can't always be won. I am LISTENING. I am GRATEFUL. It has been a BLESSING to have your honesty and openess, and willingness to share your stories and advice.

    Thank you to everyone here!

    I second your sentiments. A
    I second your sentiments. A month ago I was blissfully unaware of EC. Now I am knee deep in it. I always thought that pancreatic cancer was the one that was so horrific, but EC is just as bad. Our medical oncologist at Hopkins is heading the good fight to get more awareness and research dollars thrown at this "beast" as it is commonly referred to. I am a public librarian, and I am eager to get the word out as well. I stopped by Hopkins'library on Tuesday, and coincidentally the librarian there is part of the Maryland Library Association so we are going to try and work together to get education out there to the public not just on EC, but a wealth of other health issues.

    In just my 2 and a half short weeks here I have learned so much. I knew some questions to ask the docs on Wednesday; specifically about stents. I knew that they were not recommended by reading that here, I asked our surgeon, and he agreed. This forum is invaluable, and I am so thankful for it as well.

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