Any of you guys looking for something to do on the internet?? I can't find the topic

[DDD]

First and foremost this is not a NEED so don't inconvenience yourself. I just would like to find where I can read about others who either are experiencing or have experienced what I am living with since my surgery. I AM doing aok. Yesterday I saw my primary physician whom I like to death, lol, and his exam and comments are the same as the surgeon and the oncologist. Actually I'm happy because he agreed to be in charge of my health and agreed with my decision to live with-o chemo. Yeah. Believe me ALOT of people think it is "unAmerican" to avoid chemo, lol.

Anyway I don't need sympathy or support or prayers now. What I'm trying to find is a site or an expert that explains why my abdomen hurts...or, heck, another person experiencing the same symptom. All the MD's agree "everything feels fine". The Surgeon told me "in quite a few cases patients begin to get pain six or eight weeks after surgery" and "none of the experts know why...it just happens". My primary said "yeah...that's not uncommon and I think when you have surgery there is a protective layer that used to be there that is removed and so your pain threshold is lower". HUH?

Some times most of my belly feels sore. Some days (like today) I feel like an invisible knife is being stuck in my abdomen (usually due left of my belly button) on occasion and almost ALWAYS if I have to sneeze! Yikes. I "think" it would be a comfort to read about other adults who have experienced this
sensation, which by the way is intermitent not consistent. I have three cancer boards I monitor but I can't find one post about it. It's bugging me. I'm used to daily support from our CD family and just figured there would be tons and tons of cancer support info...not this problem so far.

SO if you are going nuts with your life and you love the net and you have nothing else to do..feel free to locate somebody with post op pains that started weeks after surgery. My husband tells me when he had bladder cancer ten years ago that he had pain for ten years. WTH???? Don't you just love the way couples communicate? Geez, Louise. DDD

 

[mstang67chic]

I didn't read the links but by just browsing, one looke possibly promising.

http://www.google.com/search?source....0.113.2104.20j4.24.0...0.0...1ac.5oes2ku6_UQ


Third one down.

 

[1905]

DDD- Is there a Gilda's Club near you? Google and find out! They offer a lot of interesting courses, all free. The one near me offers everything from sea glass jewlery-making to free Reiki sessions. I wish I had some other advice....hugs! There will be people in-person there you can talk to.

 

[flutterby]

http://www.healthboards.com/boards/

 

[Hound dog]

DDD

You're lucky you've as yet to run into the people (and docs) who think those who opt out of chemo are literally insane and need to be forced into it.

After nursing school 30 yrs ago, I decided I would never ever do chemo or radiation, if they couldn't remove it.......then I'd accept it and continue with dignity and as good health as I could manage. My recent run through nursing school has done nothing to change that opinion. When the treatment is worse than what you're trying to cure, then you're doing something totally wrong. in my opinion If others want to try it, that's fine, just not for me.

The pain can be caused by the mass pressing on other organs ect, it can also be affecting nerve endings, which of course is going to trigger pain. My grandma's tumor was wrapped around her aorta and vena cava (major artery and vein) in the trunk of the body. She felt pain in her lower rib cage often. You can also get what is called referred pain, it's a common thing. (think of the jaw, down the arm, up the neck pain in a heart attack as an example)

I think it's a good thing to want to talk to people going through the same things. Docs & nurses are good, but it's just not the same. I can talk to people about the symptoms I have with my kidney disease and they know exactly what I'm talking about. I try to talk to the doctor about some of them and I get a blank stare or a hmmm. It's not that they don't care, they're just not living it.

I hope you can find such a support system. There may be one via the local cancer center or the hospital social worker may know of in person ones in your area.

 

[DDD]

Thanks, everyone. I think it's nerve ending pain which is what my Primary suggested this week. It will be conforting to read of others who have it or...better yet...had it for a short while. LOL. Obviously I agree with you Hound. on the other hand if I were a young Mom and the %'s were indicative of having the odds for success I likely would have gone for it. I just read on one site recommended in this thread about an 88 year old man who is already receiving hospice care and has been talked into starting chemo because it will improve his chances by 4 %. Good Grief! His family wants him to "fight" and not give in. Sigh.

I have to go to work but I've checked out all but one of the sites already. As usual, our CD family is so important to me. Hugs. DDD

 

[DDD]

Upallnight......your suggestion was the one I didn't have time to check out. OMG..LOL..it just didn't "click" when I read it. I LOVED Gilda and the other SNL people. How awesome that they have Clubs in other locations. Nobody has an "in group" in my small area but thank you for suggesting I explore. It seems like an awesome group. Hugs DDD

 

[Fran]

Hope you can find a conversation for your topic. I love the internet for connecting people to conversations that are important for each individual.
I think you are wise about making a proactive decision about care. I, like you would go chemo if the odds were in my favor. I know many who have been in remission and have had years of good health. I would never dismiss conventional treatment since it has the best results but weighing the pro's and con's of what the outcome will be would be an individual thing. Hope your pain questions get some answers.

 

[DDD]

Thanks, Fran. The sites have been helpful. It's really interesting to me that most people enter into the recommended treatment with-o exploring the possible negative side effects. I guess a valid analogy is how we all started off with our family doctor or Pediatrician assuming, lol, they would make our difficult child's easy child's. It's disconcerting to find that life isn't quite that simple and you have to take responsibility into your own hands. Sigh. I'm confortable with my choice but sure as heck would prefer not to be in this position, lol. DDD

 

[Fran]

Isn't that the truth.