Hi, Everyone,

I haven't been on the boards much lately. This is an interesting topic. My reasons for being here come from my inquisitive nature to learn all I could about OC. While this site has been the best place for me to get info and support, my husband is not interested in joining. It's just not his thing. He doesn't use the computer at all, although he can. He does enjoy it when I relay info to him from this site. Many times he'll ask me what would the folks on OCF have to say about a particular topic.

Anyway, I also wonder...as a caregiver, so many of my darkest times and thoughts that accompany them, are so deeply personal and scary...it is possible that I prefer to be here without my husband. I know he could get a lot out of this site but I also know that some of my posts might upset him. I have written things through a veil of tears, when I was so sad, scared, fearful. As the eternal optimist, how would that have impacted my beloved? Some things are better not shared. Do you know what I mean???

Clark is also very private. He may have felt exposed had he read any of my posts about him. A few months ago, we had a discussion about HPV and asking his surgeon to test his tumor for it. Unfortunately, the nurse, who we both really like, asked him why he wanted to know. WHAT!!! It pissed me off because it felt as if she was dismissing him. She didn't think it mattered. Well, it matters to me, knowledge is power. And when I said that to Clark, he said he didn't want to know, he didn't want to talk about it ever again. So, I backed off. But it isn't the way I would do it.

To summarize...some caregivers may not want their patient on the same site as it might inhibit self expression from one or both.

By the way, it is nice to be back on the boards. I have missed you guys!

Anita

Well, I like Margret's answer the best. But what do I know- (I've had a marriage or two, which says something about me perhaps), I think that guys are stoic, I don't read instructions (and sometimes don't even take them well either) and Ingrid is a typical nurturing facilitator of my happiness and health, which I would like to say is a general characteristic of women/mothers�. Having just said that, it dawns on me, that two of them I was married to, decided that I was not the man they married� (someone changed, I'm still not convinced it was me), and while one has mellowed and become a friend after all the negatives, I think the other would like to see me walled up in some basement, never to be heard from again. So sweeping generalities about women, I think I will in the end, stay away from.

Ingrid gave a lot when I was sick, and even today she puts up with an enormous amount of BS, that is part and parcel of being married to me. I think we work because of her more than me. I would like to think, if the tables were turned, I would be as good a caregiver, after all I have some experience in it as a medic in a war, but my patients really didn't hang around much, which is where the real test is. They either died in my arms or soon thereafter, or moved on to more sophisticated care and long term treatment. So the chronic grind of dealing with someone who is in pain, emotional turmoil, fear, realization that life is terminal, and so much more that goes with that whole thing, I didn't have to deal with. But I HOPE I could live up to her example. I'm not so sure. I was a pain in the ass as a patient, and you know that just might be who I am, whichever role I am in. God help her if we have to find out.

Alex and I are one of the few couples who are both on this forum. Alex has never posted but uses it as an information source whereas I am quite verbose. He says it's because I can type faster than him

When I first found this forum, I though Alex was dying, his doctors were interested in treatment and uninterested in side effects and minimised the ones they DID mention; his GP also thought he was dying and suggested that smoking dope may help him with pain; my mother was ringing me daily and telling me how stressed I must be; my bosses were telling me to take all the time I needed but that I was overdue on this task and that project; Alex had no financial support having gone on unpaid leave from his job the day after diagnosis; and Alex's ex-wife (at the time wife) had gone feral.

I needed some sympathy and understanding of my own.

I also felt that I was going through Alex's treatment actively and Alex was going through passively. Like Cookey, I was the one questioning the doctors, going head to head with the welfare agencies, researching the best treatments and hospitals, what he was entitled to in terms of assistance and pushing Alex to tie up loose ends such as wills, divorces and property settlements. The wife had been out of the picture for over 4 years and Alex hadn't quite got around to finalising everything.

Like Charm, I have often wondered why it is either the person with OC or the caregiver on this site and rarely both parties. I also note that the majority of caregivers are women whereas there is a more even split between men and women who are OC survivors.

I believe it is the basic difference between men and women as already alluded to with Allan Pease's theory on why "Men don't Listen and Women Can't Read Maps". Women are the "nesters" who have social networks and are brought up to discuss everything. Men are the "hunter gatherers" who are brought up to "suck it up" and "not be a cry baby". This translates to stoicism when they are finally diagnosed with something life threatening (assuming we women actually managed to get him to the doctor in the first place).

I suspect the male caregivers do not think to check for a forum style outlet. Clinical trials, yes. Newspaper articles, maybe. Doctors, definitely. Mates down the pub whose great Aunt Lucinda had some weird stomach thing that was probably cancer, of course!

I was amused by Alex's mates' reaction to the entire ordeal. Alex had numerous complications with collapsed lung x 3, surgical emphysema, malnutrition so was hospitalised for most of April, May and June when he was undergoing chemo. I used to take him out of the hospital for a few hours to catch up with his mates (Alex refused to have them visit him in hospital) and they would treat him as if he had been there yesterday and did not look like death warmed over. "How you going, mate?" "Not drinking schooners today?" The second he walked away they were at me - "He looks good/shithouse today", You need anything done around the house?". Their way of saying they cared. The wives were the ones who stroked him and asked him how he was feeling, what the doctors thought, how he was handling the treatment etc.

And another thing ...

After a number of weeks cruising the boards, I pushed my Alex to have a look. He initially refused, believing that he would learn more than he could cope with but eventually took a peek. I steered him towards WendyG and her Steve as our experience seemed to be mirroring theirs. He found the "normalness" of his erratic response to the disease and treatment to be so reassuring, he began following others.

Charm, Eric, RossNZ and DavidCPA are the ones that spring immediately to mind.

These people suited him as they didn't do any of that "emotional crap" that we women are so reknowned for and which he was getting in spades at home (I just wouldn't let him wallow and insisted he told me what was going through his head).

Then I realised I had been using the boards to rant ... oops... what if my Alex read some of my posts and took them badly or worse, took them seriously!! Luckily for me, we have always maintained an open and honest exchange and when he DID come across something that painted him in a less than ideal light, he did the grown up thing and recognised that I was also under pressure, had no one to talk to, and was just letting off steam.

There are times when I think it would be good to have a private section for caregivers to vent but then realise I would have missed the insights from the men on this board who pulled no punches and helped me to understand what I saw as Alex's childish and frustrating behaviours. Thanks to them, I now know this is normal(ish) and a fairly common response from a male who has lost control of his life and feels he is letting his partner down somehow.

I joined the forum because like many others I needed to be well armed with information before we waged war. It's in my makeup. I told Steve I would be by his side through everything and I felt to be the best support to him I had to know as much as I could before we arrived at each point. And to be honest, I was scared. Terrified to tell you the truth. I was looking for someone I could talk to that could relate to how I felt because there isn't another person I know personally that does. But here I found some arms to hug me and keep me going. All of which has helped me to stay strong for Steve.

As for Steve. Well he's not on here and I doubt very much he ever will be. He rarely talks to me about OC let alone coming on here and speaking to people via the forum's. Steve doesn't like to talk about OC. He says it's hard enough living with it so why make it harder by talking about it all of the time. He just accepts things, in other words why talk about it if you can't change it. . As long as I've known him (22) years he has always held the belief that if you think you are sick, then you will get sick. And up until he got OC he had, had 1 head cold in 22 years. So to me, he ignores OC as much as he can. Pretend it isn't happening and it will go away. Mind over matter, but something appears to be working for us. So will he ever get on the boards? No. He knows if he needs to know anything that I will find the answers. Other than that he doesn't need to know. He's happy just living his life, trying to be as normal as he can be and trying to forget that OC has changed our lives forever.

Also, in a way I don't really want Steve to be on the boards, although I have told him about them and encouraged him to look and learn if that's what he wants. I worry that he will read things that will upset him. Things that he may never ever go through, that may cause him stress just by knowing of them. Call it a protective part of me but he has enough to deal with. And another reason is that sometimes it's nice to know there is somewhere I can come just to get it all out. Without fear that my feelings and fears are going to upset him.

Besides, he's too busy playing computer games to ever get on any forum. For him thats what computers are for

I don't post here as I am way to busy taking care of my husband, my father and my children but I read posts everyday. My husband doesn't read or post for three reasons......1. He's not a computer guy, 2. because he's in denial most of the time and 3. because he is just too sick and too drained to get off of the chair on most days. He's 43 years old, a fireman and one of the most pig headed and stubborn and STRONGEST people I know but this cancer has taken such a toll on him is such a short time.....he is not that same person and I miss him!

Wow! - I am so grateful for all these wonderful, unique personalities, but as for the original question "Why isn't the patient on OCF?". Men and women are just different. Men like to be in control, be Right, not have to ask for directions or appear weak. Women like to talk, get details, see the big picture, nurture, and don't mind if they are weak sometimes. When my son was first diagnosed, he did come on this site, but not for long. It depressed him and made him sad to see what was happening to others and could happen to him. He got on only when I asked him to comment on something that would help another person. I know the horrid feeling I had when I first had to look up what I needed to know to help my son and was so afraid of bad news. When we were going through the worst of his treatment, there were times when I was glad he would not be reading what I was worried about. I was able to be very honest with my comments so that I received the much needed information. We were both helped because I printed out info and left it around for him to read. This way the information he got was not his mother telling him what to do, but something he learned for himself vicariously, thus feeling more in control. . . which men like, right? There are always exceptions of course - some men have the added advantage of having some nurturing qualities that women have. And some women also have the added qualities that men have like being in control, taking charge and getting things done. So hurray for all our unique and wonderful qualities!! (Sorry this is so long, but I am a woman.)

Wow...Karen, Wendy it was a pleasure reading your responses.

I certainly relate to both Alex and Steve in so many ways and to listen to your insights about them reminds me of my wife. Aly will never post on these forums as she says, "I'm good".

I "get" why some guys (maybe most I don't know) don't get involved with the forums. I found OCF in Nov. of 08 well after tx and surgery but didn't register until Jan of 09. I loved the information I got but wasn't ready to share and when I started my style of communication (coupled from the side effects from the opiates) rubbed people the wrong way...still does.

Myself, I don't like being "cancer boy" and unfortunately have to deal with it daily as it's literally written all over my face. Like Alex I do feel like I'm letting my partner down and have been a burden on my family...dealing with that sucks. It also motivated me to get off the pain meds even though I still needed them and also to start my own business so that I could take care of my family. It's often that I take extended breaks from the forums as really I just want to move on from cancer altogether and focus on living life, much like Steve. Usually I get an email or a message on FB from my friends here wanting me to comeback as they miss my posts and I do because I want to help...but it is a daily battle for me and some days it certainly shows in my posts, much to my regret.

Anne-Marie...the comment about men not liking to appear weak hit's the nail on the head for me. As far as directions, I actually love my GPS and don't mind asking for directions as I HATE getting lost.


Anyways, sorry for the extended diatribe...thanks again Wendy, Karen and Anne-Marie.

Thanks again for all the responses. I'm glad to see that so many regular posters here do not think that my question was too negative. Thank God most members here all have a healthy sense of both self and humor and can appreciate my entertainment value as well as my advice.
But as different as men and women are, let's remember
[quote]You and I, we all bleed red, we all taste rain, all fall down, lose our way
We all say words, we regret, well cry tears, we all bleed red
Sometimes we're strong, sometimes we're weak, sometimes we're hurt and it cuts deep
We live this life, breath to breath, we're all the same; we all bleed red[/quote]
Make no mistake about it, I can say: [quote]Damn it feels good to be me[/quote] only because my caregiver wife stood by me the entire ordeal and still makes my life worth living. She has joined the board just because I've told her about so many wonderful caregivers here and just how compelling and interesting their stories are. So we are both on OCF.
These extended replies have verified my suppositions.
But the thread is still open and even if you just post a "me too", it is meaningful in gathering facts.
Keep the Faith
Charm

Eric - You are only the second man I've heard of that admits to asking for directions. You really are exceptional! On a ski trip i was part of last winter with 3 cars travelling, I was in one with my daughter and a friend, my son-in-law was in another car with his (and my daughter's) two sons, and a 3rd car held a couple and their young son - Both GPS and Mapquest were stumped. After a few cellphone calls back and forth, my daughter's husband found us and led us to the rented cabin in the snowy woods. Before he left to find the other lost couple, we asked him how did he find us and the cabin?!! And with a sly smile, he admitted - "Oh, I stopped and asked for directions". He is exceptional, too.