Hey Anne Marie

Make it Three men who ask directions that you've now heard of.
Guess it depends on how you were raised. My Dad loved to stop and meet new people and talk to them. As a kid, I thought everybody got their directions from the gas station attendant. Heck my family still remembers when we were hiking in Canada and I got us lost on the trail and I even asked a local bird chirping away for directions. Left little buddy or right? I asked and sure enough he tweeted (literally not cyber) me when I pointed to the correct path.
Charm

On a serious note... Matt doesn't read the forum because it scares the hell out of him. He doesn't want to know the statistics, the possibilities. He just wants to focus on one day at a time.

Meanwhile, I have a strong desire to know what to expect and a need to vent to my peers during this journey.

I had never participated in message boards until 6 years ago when my mom was diagnosed with pancreatic cancer. In doing research to gain information and get her to the best hospital for surgery (JHU) and treatments I discovered the Johns Hopkins Pancreatic Cancer Message Boards. They were a huge help just as this site is. I had never known anyone with pancreatic cancer and those message boards were such a wealth of information and support while my mom was battling her cancer.

When John was diagnosed with "base of tongue" cancer once again I was faced with a loved one battling a cancer I knew nothing about. I jumped onto the internet and reasearched everything I could find which lead me here.

John DOES ask for directions. He has his own business and before he goes anywhere he goes on Mapquest and gets directions. Whenever he is buying anything he researches it to death. When he was diagnosed and I found this site I encouraged him to join and participate and he wanted nothing to do with it.

John is a VERY PRIVATE person, hates the idea of Facebook and sharing personal information with anyone. He encouraged me to stay on the message boards for my own sanity and whenever he had an issue or question he would ask me to post a question.

He didn't want me "sharing" anything I read and didn't want to know what was going to happen through treatments unless he asked me. This is so not his personality. He is the type of person who freaks out when he isn't in control. He wanted me to spoon feed him information on a "need to know" basis which is what I did.

I think part of John not wanting to know anything was a combination of denial since he had never been sick a day in his life and he doesn't believe in statistics. He just wanted to take one day at a time and deal with things as they came along.

Having been on other health related message boards I know that when people are through treatments, life goes back to normal and they aren't having "issues" they tend to not come back. I stay here to share my experience with other "caregivers" and to let patients starting out on this journey know that there is life after this diagnosis.

John was officially out of treatments two years April 15th and life is good. Thank you all for being here!

I fully understand not wanting to know. I always want to know everything, but have searched the web with such trepidation regarding my husband's throat cancer. I also have to spoon feed him what he needs to know - he can only listen to a little at a time. I feel bad when I have to keep him out of the loop, but if I give him everything at once (including what the doctor already told us together), he gets overwhelmed.
Cancer is never in our control - it is always the unknown - always the enemy. We are new at this and our feelings are all over the place.

Hey Friends,

It has been a little bit but I have been trying to reconnect with society as well as fight my crazy mental thoughts. Not one day goes by where the damn disease I just fought whispers into my ear. The doctors tell me I am clear, and everything feels and looks good but once I get an ache, pain or soreness I freak out for days. Point of the matter is, I would not know much of how to keep moving if it was not for you guys. When my friend referred me here, he said " The best advice comes from experience ." And low and behold If I wasnt getting all points of the entire spectrum I was finding someone I could really relate to. I am always looking for advice here and am so glad I have become close with a few of you, thank you for all you do.

Your Friend,
Nate

Ha, I stand corrected... he is actually using his log in today! WOOHOO!!!!

Wow Karen, Wendy, Diane, Eric, Nate, CMM, thanks for spelling it out. As readers of this thread realize, certain themes are emerging despite all the individual stories.
Please join in, especially if you just usually are a ROM member (Read only- that sounds so much better to me than the standard cyber forum term: lurker ) Every forum has many many more members who read and laugh and gasp then those who post all the time. Here is a fun thread to say hi and share with OCF about why you are here and your patient/caregiver is not or is. It's all good. Add one more post to your total and chime in.
Keep the Faith
Charm

I have found it helpful to read the posts, because I haven't always known what questions to ask. When I read what many of you are going through, it helps me to ask my docs more questions.

I have the opposite situation as you caregivers on here. I am the patient and my two caregivers, my daughter and granddaughter, are both RN's. They have completely discouraged me from being on this forum from the beginning. They just say "Everybody is different. Just listen to your doctors."

They are completely wrong. My doctors may know what the books say about cancer, but they don't have a clue what it's like to really have it. If I hadn't come on here and found out about the "mask", I would have completely freaked when I got to the radiolist's office. When I got my feeding tube, they just stuck it in and sent me home. No instructions. I learned it all on here. When I complained about the pain I was having to FOUR doctors, they just dismissed me saying a little pain was normal. It was the members on here that said, no, it shouldn't hurt that much and I should get an x-ray and lo and behold the tube was out of my stomach and in my abdomen. Who know how long I would have walked around with that pain if not for this forum.

My caregivers have since quit telling me not to come on here, but they still don't want a part of it. They will, however, listen to my concerns about something I've learned here and then they will ask my doctor about it, as if she knows. I only have an Oncologist now and she is doing what she feels is best, but she still doesn't really know what it's like to have cancer. And she has had to adjust and delay my chemo every single time so far, so her book recommendations aren't working on me. I'm still a believer in everyone is different, but I feel way more connected with fellow cancer people than with learn by the book people.

Bloop.

All so very true. In fairness to your RN relatives, OCF is exceptional for cancer forums on the internet. Brian, David, Gary, Christine keep OCF free of not only all the snake oil and wishful thinking but also the nasty personal stuff that pollutes most boards. You can't rely on what you read elsewhere but you can count on the OCF forum for accurate information based on more than "book learning".

it is so crazy how the PEG is basically DIY in terms of care and upkeep. It seems like all they teach in medical school is how to put them in and pull them out with zero knowledge of how it should feel, fit or anything else.

Now, you add another factor into this mix. There are many more female posters here who are patients not caregivers than men patients who post regularly.

Last but not least, I have not forgotten the male caregivers who have posted here. Unfortunately many of their patients have passed away but both the caregivers and their loved one are still in my memory.
Charm