Charm - You posed the question... would we want the patient to be on the boards... As many of you know, I don't hold much back when it comes to voicing my frustrations. I was nervous introducing Matt to this site, but as he read my posts he learned the things I am concerned about and it's helped him to understand my thoughts and feelings as a caregiver/spouse.

Being one of the ones who have signed onto the site, not a care giver I have to say. I Fight a battle daily between coming in here and not. It's a scary place, and even though I know that everyone has their own outcome it's still hard to read about all these recurrences, and lung mets, and everyone's battles. I greatly admire all that everyone here has gone through and suffered through to survive this disease, but sometimes it's just hard because it can affect you mentally to live in constant fear of recurrence and to lose people you become attached to to a disease that you are suffering from. So I attribute that to why some patients prefer to allow their caregivers to peruse the forum instead of themselves. But I am also a head on type of person, who believes that educating ones self, on what to expect, what to look for, and the whole process, because to me knowledge is power. So I do come here. I also hope that in some way by sharing my journey it will help others who are just at the beginning of theirs.
I do know of one person who has been on the forum and finds it very hard to come back because to her, this battle is terrifying and reading other people's situations scares her. Take care everyone

Same for caregivers Cheryl. I totally "get" your feelings as I also have days when I just can't face the site.

Alex is moving towards that place where he just wants to forget the last 12 months. The 3 monthly "group hug" with the docs are stressful for him as it forces it all back into his consciousness. I have to be very careful not to raise issues that upset his emotional recovery (my tongue is red raw from biting it).

I am still here because I have the advantage of a partner who has attempted to elucidate his feelings about everything and I hope I can share those insights with others when they need it. We are also world experts on cisplatin, have experienced induction chemo which is a little on the less trodden path and struggle along with many others with weight, nutrition and PEG issues. I believe our experiences can help others when they come up.

I also seek out the inspiring and entertaining posts. Yesterday I shared the self removal of PEG stories with Alex and we both had a giggle although Alex didn't appreciate it quite as much as I did (I forgot he is a bit squeamish with medical procedures and certain bodily functions).

I think that we have to be careful not to sterotype the roles of men and women, in general.

When I first came here I was a patient and seeking help with tough decisions and issues/problems during and after treatment. I received responses from both male and female fellow patients and remain friends with most of them to this day.

It seemed like there were more patients, in the beginning, but that has changed to more like 50/50. It is quite understandable why many patients don't want to know any sort of information and their caregivers are here for help and knowledge of what to expect.

I started the survivor thread when there were a spate of deaths and there needed to be hope on the forum. Life is really a balancing act so I would suggest that the survivor stories be read as well to balance the grim reality some face here. One must also remember that the total, annual, dx'd cases is around 30K/year and we have no where near that number joining up so the perceptions may be skewed a bit. I also have a theory that many who come here are seeking solutions to unusually severe problems and side effects, and may not be reflective the of collective experience of the total community. So that may need to be factored in as well.

There will never be a "correct" answer to this topic.

37000 in 2010. And Gary is right. There is significant bias on the boards. The most obvious is we are all computer literate. Many oral cancer patients are in their 60's and more. They use computers in general, and forums like this almost not at all.

Gary, Please look at my Facebook photos and check yourself out in the early days of Las Vegas�..

I am the cancer patient and I was my own caregiver (long story). I didn't find the forum until the last 2 weeks of my treatment, which is probably a good thing as the information would have scared me to death and who knows if I would have completed treatment. I told my boy friend and close friends about this forum and asked them if they wanted to read any of the information so that they would know what was happening to me and what I was going through. They all said no and asked me repeatedly not to read "all of this stuff". Thank God they were the ones in denial and not me!

I have spent many, many hours reading the forums here. I have laughed and cried. The knowledge I have gained here as been invaluable. It gave me information for questions to ask my doctors. Green fields, lilacs and God was one of the first forums I read. To me it was like a novel I couldn't put down. How I came to love those ladies! Glad to see that it has regained life!

Cathi

Yesterday morning, J and I were talking about OCF (or rather, I was sharing information and stories with him.) He became really quiet and said he needed to get away for awhile. When he came back several hours later, he asked me not to say anything about OCF to him again. He seemed on the verge of tears. I agreed not to but it makes me really sad. He won't come back to the site--not because of anyone or anything in particular. The information and stories just upset him. I am always thirsty for more knowledge about OC. But, it is so frightening for him. I don't know if it is worse that he's had a taste of treatment and then a reprieve. I'm pretty tenacious (yep, really) and I won't hesitate to push and pull him all the way through treatment. I am hoping he has the emotional strength to get through it. OCF Forum is a God-send. Not only is there a mountain of information here, but also support for whoever needs it. I feel sad that I can't share it with him. I really don't know how that's going to work.

Sandy,
Any good counselor would suggest to you to respect his feelings - and we are all "allowed" to "own" our feelings (it's the only thing you CAN own, really)- that is a God given right. From my counseling training, I can guarantee you that if you don't respect his feelings it will not work.

Instead of trying to fix him, why not seek a CG support group so you can get fixed. I know that you mean well and have the best of intentions but sometimes you just have to bite the bullet.

My wife never came to the forum for help as my CG, but did find books, took detailed notes, drove me to virtually every appointment and put up with my craziness for over a year (and still is although to a lesser degree). I am also in the medical device industry and had well established relationships with many health care professionals going into this.

There are issues when the reality of the finite nature of our existence no longer exists in a theoretical world perspective. You have to be the patient, in the foxhole, or whatever, to get it I think. Caregivers understand it, but respectfully said, not the same way that patients feel it. Give him space to come to it in his own time, in his own way. As to the getting him through treatment, it is also his experience, and for you it is a function of supportive understanding, and lots of patience.

I have been afraid many times, and most of them involved realizing that my situation might cross paths with my subsequent death in some respect. If he wasn't scared, if he wasn't afraid of the unknown, he would not be normal.

Besides these very real situations, he is also revealing his vulnerability, in all its nakedness, in front of the woman that he has always been the tough guy, can get through it guy, make it happen whatever it takes person. Men hide their vulnerabilities skillfully from those whose opinions they care the most about. He is going through something where he cannot do that effectively. He is uncertain what you think of this new aspect of him, and that is unsettling.

So there are likely multiple things at play. Don't push, he knows the board is here, he knows to seek out what he needs to know to make good decisions. He doesn't have to learn that by reading lots of potentially negative things that may not apply to him, which his unconscious will still consider to be possible negatives in his future�whether they are or not.

Thanks for that Brian!
I look like I came out of "Night Of The Living Dead" back then ;-) I can't put weight on - even with all of the In-n-Out, pizzas and milkshakes. Maybe I have a tapeworm ha ha. Who am I to complain, at least I'm not fat, I'm still on this side of the grass and all of my labs look good.

Chiming in with Brian, men don't do helpless well. We either get angry or depressed and there is a fine line between the two.

Confronting your mortality is daunting to say the least - I had friends who dissapeared because they couldn't handle facing their mortality because of my disease.

I might also suggest that information you glean here be used in the context of fine tuning the dialog with his medical team since you are, essentially, his advocate. You don't necessarily need to mention that you got the information from OCF, especially if your husband is in the room. More often then not many CG's just want some validation that the issues their significant others are having are to be expected and not abnormal.