discouraged about using this site.......

Get that feeling too
I don't write very good , So I am not shocked that few answer my post. I don't always know how to spell the words or thoughts in my head. I am sorry that you also feel that way. I lost my mother and father to cancer and now my husband has Ec T4 N1 MO. Metastis to the lungs.
I have never felt so alone in my life. Even when I was alone . I feel sorry for myself but I also know their are people on here that have it just as bad. Some are really hurting , but try to paint a pretty picture to make it easier pn others. I don't know how to do that. I wish I did. The sad truth is that everyone on here has a sad story or their heart is broke. They are looking for answers help friendship.
Just keep writing Maybe no one has the answer to the question , or don't want to tell you for fear you will loss hope.
If you want you can email me. I can never have enough friends.

Hope you will be feeling better soon
Nancy,

We certainly don’t mean to be a closed membership. As Sherri suggested, sometimes weekends can be a bit quiet because people are busy and don’t have as much time to check the web site.

I know if must be frustrating to struggle with post operative issues alone. Like you, I had a surgeon in Charleston, SC, my oncologist in Augusta, GA, and my primary care physician in McCormick, SC. I was not sure who was responsible for my day to day well being. Chemotherapy has a tendency to affect how even your normal medications work and when I had new issues I was not sure who to consult with to get a suggestion of what to do. I finally decided to use my primary care physician as the point of control. I insured he agreed with that approach, and from that point on I made sure he was copied on all test results and insured that any medication additions or changes were sent to him. That seemed to work better. At least it made me feel like someone was in control.

I had the usual post operative issues relating to difficulty eating, dumping, and getting used to sleeping in an upright position. I found that since I was not feeling well that eating six or seven times a day became a real challenge, particularly when it seemed like half the time I lost what I ate either because of nausea or because of diarrhea. I lost a substantial amount of weight. Then; through this site, and from research on my own, I found some things that seemed to help.

I found some suggested diet recommendations for foods that seemed to be easier to eat and digest. I will include the web site address for the document below:
_____________________________________________________________________
http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf
______________________________________________________________________


I also found a document with suggestions on how to manage my diet to reduce dumping or diarrhea. I will include the web site address for the document below:
______________________________________________________________________
http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf
_______________________________________________________________________

I also found if I created a menu for the week based on the documents referenced above that defined what I would eat for six times each day I was more apt to not forget to eat because I was busy or just did not feel hungry. I know that sounds a bit over structured but it helped me to keep on track even when I became discouraged.

It does get better Nancy, I know it is hard to believe now but I am now 8 months post surgery and have gained back 10 pounds of the weight I lost and can eat most things without issues now, except things high in sugar. I still eat six times a day; but my meals are now pleasant, instead of something I dread.

I would also like to suggest a web site where we have online chat sessions on Sunday and Wednesday evenings. Sometimes it is helpful to be able to have an immediate dialogue rather than waiting for a response to your post. I will include the reminder below:
__________________________________________________________________

Reminder: EC Live Chat!

Date: Every Sunday and Wednesday
Time: 8:00pm to 9:00pm [Eastern Standard Time!]

Note: Make sure JAVA is downloaded on your computer.

When asked for a USER ID, write in whatever you want. (Some variation of your
name is best, but if you do not want your name known, make one up,
but [hint], plain "Bob" or "Jane" is easier for us to type and remember
than "KQrxT9x", or "SjnFLPq").

Location: http://ngc1514.com/chat

Comment: Join the Chat Group, comprised of patients, care givers and
survivors, where experiences are shared, and make new friends.

For Help Contact: Eric at eric@ngc1514.com

Your hosts are Eric and Mickey
______________________________________________________________

Even if you don’t get this in time to join us this evening, maybe we will see you Wednesday evening. People who come to the chat are both EC patients and caregivers. There is no structured format, we just talk about whatever comes up.

I hope you will be feeling better soon.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0
12/03/2009 Ivor Lewis
2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

crystalbay said:

Thank you!!!
I appreciate your responsiveness and will stay with this site after all, Bailey. In answer to your question, my Onco doc is somewhat divorced from playing a key role because I chose to go to the Mayo system two hours away from here. He's only in charge of chemo (long since over) and quarterly PET scans. The Mayo docs aren't in charge of my care here in Mpls, so they're not closely following my case either. I have a primary care doc who's overseeing all meds and general medical concerns. Too many cooks in the kitchen, I guess?

Thank you for checking out my CB web site!! I'm so glad to have one other CB address to connect with (yours) now & will read the whole thing. I'm sure there are many similar journeys going on but if I don't know the names on CB, I can't read them. Please give me more if you know of any?

I'm doing better than ever the last few days now & have decided to stop allowing FEAR to run my life. So, instead of dreading having to eat/drink several times a day, I'm just telling myself that I look good this small and will make it. Just changing this message to myself has gone a long way towards stabilizing my weight already:)

Nancy

In Mpls
Hi Nancy,
I also am new to this site and a caretaker and live in Prior lake, MN. These last few weeks I have been off this site because of so much going on with my husband. He has the EC and going through much of what you went through or are going through. The best thing on this site is so many other people have already been there and you can pick up alot of information. Our doctor was a resident doctor of Mayo and was highly recommended by my husbands doctor. He is with Minnesota Oncology, Southdale clinic, Dr. Louis Jacques. They also have their own dietician that can give you so much info. I have asked questions, read info and asked more questions and read alot of info on this site. There are many here that have wonderful advice and or ideas to help. It has helped me so much. Stay connected!
Blessed be,
Barbara