Hello Caregivers

I've often wondered about the reasons why some patients join OCF while others do not, only their caregivers do. This does seem to me to be mostly male patients who don't join and female caregivers who do join.

Obviously there must be very good reasons why this happens.
Is it because there is really no other good support group for oral cancer caregivers?
Is it just males being stubborn and stoic (but I'm ultra both and I'm here )
I know there is not one reason but perhaps there is a commonality amidst the individual and personal reasons.

I'm curious and also curious as to whether you would want the patient to be here?

Charm

I've set Matt up a log in and book marked it for him. I find the site to be such a valuable tool during this battle and wish that he would reach out to everyone.
The reasons he wont use it are unknown to me.
Perhaps he hates to type?

Hi Charm,

The reason I joined this site and not Ron was because Ron is not a computer "guy". I relay all of the information I receive to him. We've both learned so much from this site and I know he's grateful that I'm on here.

All the best,

Shelley

Thats a very easy question to answer Charm.I joined after hours of trawling the internet for all the information i could find about Oral Cancer.To me knowledge was power and the best information i could find was here.I actually became a member to get good advice and information about products to relieve the problems of radiation burns ,feeding tubes,nutrition,thrush and all the 101 other problems that arose with surgery and radiation treatment,this of course developed into friendships formed and emotional support when times got impossible.

I took complete control of everything with Robs illness,from advocacy to personal care.I spoke for him,asked all the questions,liased with all the medical team,drove him back and forth to every appointment and treatment,i fed him through his tube administered his medication,collected his meds,applied for financial help,paid the bills,kept house,walked the dog,put up with his moods,his abuse,his destructive idiotic behavior,answered the phone dozens of times a day because he wouldn't speak to anyone monitered visits,made excuses and sat by his side for 21 days while he died.

Did i need support ....bet your ass i did,and being seperated from my family this was it.


Why didn't he join? Thats easy too he didnt give a stuff!!! He didnt want to know anything about it EVER He didnt want to ask questions and he didnt want to hear the answers.Worse than that he didnt want me to ask either and hated me for always forcing the issues,and he sure as hell didnt want me telling him anything i found out.

charm it is time you wised up.You,Eric,David are exceptions not the rule

CMM, Shelley and Liz

thank you all for your candid replies. I have some opinions and conjectures of my own, but I'm not a caregiver.
I hope more caregivers share their patients reasons but it could be just these three ones you articulated.
Charm

Hi - I am on this site because my situation is very much like yours Liz, in terms of my husband's response to this cancer. It is almost like I wrote your story.

I have also talked and shared info. from the site but he will only read items if I insist and he would not consider reading on his own or posting. He is very active on the computer with his interests, research, farming, winegrower etc. which I am thankful for as that means he is planning for the future. He would never have gone to the Dr. at all if his dentist hadn't set up the appt. for him. While there are times he thanks me mostly he is angry at having to "deal with it". He is subbornly not doing anything to help his recovery, except in recent months brush his teeth. He says he wants to eat again, get back to his "normal" life but every encouragement I try to give is met with irritation and resistance. Next week I plan to get him emotional help but he doesn't want that either.

I am on this site as you are my only support group. We recently retired to a rural area and we have made aquaintances but no deep friendships here and our friends and family are 3 hours away. Our adult children live across the country and this weekend is the first time we are all together since Emmett's surgery. They have expressed concern and shock at his change in demeanure, and it is sad for me to see their reactions. Over these past months they have called often but he refuses to talk to them for the most part. So different than before and upsetting to them being so far away.

I am also on this site for knowledge, to know that what we are going through medically, emotionally is normal. It is what I can do to understand what Emmett is going through as he does not share his feelings much either.

We will be married for 40 years this fall and I would never have expected Emmett to act this way. It is so totally opposite the man I have known and love. Well educated, in leadership positions, well liked, caring, loving and an exciting person to be with. We would travel and come home with new friends we have kept in touch with. He has had over 10,000 views on his Caring Bridge site (which he does post on when feeling good) but most have no idea how extensively our lives have changed with this reoccurance. He also does not answer the phone, prefers not to see most friends or travel, surprisingly he will go out to dinner so that and medical visits are our big events away from home. He is happiest when he is on his tractor, alone on his farm.

Boy I kinda went off on a long winded road. Sorry. So the bottom line is Emmett doesn't want to know much about the journey ahead of him and he is fine with me leading the way. Even if he gives me crap at the time. I would like to know what caused this drastic change in his personality - medical reasons, emotions, anger, actually the treatments, or all of the above? I haven't given up hope Emmett will be back.

Wow, Charm...that was quick! J is much like Emmett, sometimes like Robin. I am much like Cookey and somewhat like Karen...but, again we are all individuals. What you are looking for isn't going to fit neatly into the box you planned for it. It is a messy disease that involves individuals. There aren't just 3 reasons...there may be 30 or 300. Cookey is right...wise up. You three men are proactive. Your stubbornness and your singleminded approach to this disease have served you well. What you don't understand is not everyone has your will, not everyone is a fighter, not everyone is you.

I hope you are not intimating that caregivers are only here by default--or worse, not welcome here. OCF is a valuable resource. I have learned a great deal. I have also broadened my life lessons of compassion, forgiveness, and acceptance.

Why should you even ask if we would even want the patient to be here? That question seems rather inappropriate. I can't think of any reason why a CG wouldn't want their loved one to be here. I certainly think it is a great resource for all of us.

post deleted due to massive miscommunication

Eric, I am sorry that you have a problem with me. Please stop acting this way. Charm is a big boy, he can surely defend himself. Your reverence for him is amazing though.

I took Liz's comment to wise up as a COMPLIMENT to him in the context that not all people are like you, Charm, and David. Not everyone is that strong. I was elaborating on Liz's compliment.

WARNING!!!! THIS THREAD IS ABOUT TO BE CLOSED AS WELL.

Lets agree that we dont always see eye to eye. OCF is to help people. How about we focus on doing something productive instead of wasting everyones time by arguing and being negative.

Its almost 3 AM here on the east coast and Im tired!!! I want to go to bed but must stay up to police the forum.

If anyone has something to say directly to another member ---- PM them.

Go to bed girl, I'll be nice. I've used my PM's as you've instructed and hopefully clarified what I was trying to say. Either way you'll get no more (other then the usual) sass from me.

I do find it funny when you edit my posts though by using your magical red letter, administrator powers so maybe do some editing just for my childish enjoyment?



You know I love you Christine

Eric

whoa whoa whoa. I started this thread because I have long been curious quite a while about the preponderence of female caregivers on a board for a cancer that impacts men at least threefold over women plus some HPV studies show that 80% of HPV oral cancer will be men. But I never actually started it because I was concerned that so many of the caregivers here are so mama grizzly protective of their male patients that I knew many would ascribe dastardly motives to me.
Now I'm not talking about Liz's wisecrack -which I found wonderful as it's no secret I believe I'm exceptional - a literal Legend in my Own Mind. Add my over the top tough guy patter-plus my views on PEGS, Neck Dissections, Petscans that contradict some of the caregivers' doctors opinions (all of whom went to school in the 20th century ) and last but not least: smart ass comments like that last parenthentical mean I rub a lot of readers the wrong way. Boo Hoo As the country song goes:
[quote]I'm wild and a little crazy too
Some girls don't like boys like me
Aww but some girls do
[/quote] I get many more very nice PMs from the "charmed ones", then diatribes from upset ones.

I am going right to the source to see the real reasons.
Lots of caregivers here do openly vent their frustrations with their patients so my question about whether the cg prefers to be the only one on OCF is legitimate.
So back on track: please continue to share the reasons you as a caregiver are here rather than the patient. You are helping me with a mystery that my personal style makes unthinkable for myself.
OCF is a wide community and we all bring different talents to this table, and we have a surfeit of warm loving totally accepting and supportive people here, so there is certainly room for someone like me.
Keep the Faith

Charm...you and your sidekick are incorrigable.You just love to poke your sticks into a hornets nest and see what you can stir up lol.I think your question was quite a legitimate one and i answered in all good faith.Yes the throw away at the end was a british attempt at humour,but i do remember the days when i was fraught and frazzled and you and buggar lugs wound me up something rotten.

Strong minded,self confident even arrogant men you are but sometimes a little short on the tact and diplomacy gene,and unquestionably intolerant of alternative opinions and behaviour to your own.

All that said as you say there is a place for all on OCF as long as lines aren't stepped over.

love liz

Charm,

Why don't men ask for directions? Why don't they read the instruction manual that came with the power equipment? Why don't they ask for help?

Taken as a whole, women and men are just different.

Margaret.....you hit the nail right on the head.

Thank you Christine. Again, I am sorry for being party to anything that has caused you anxiety.

And nobody is worried about causing me anxiety? Oh well.
Seriously, I appreciate all the responses. It's good when things get spelled out - less miscommunication.
Margaret and Connie's point has crossed my mind.
But this is a lot less than "30 or 300" reasons so you others please feel free to chime in.

PS... Liz have you been talking to my wife?

I've been reading, and reading, and reading the posts about this subject, and as a fellow forum member, all I can say is that I sure am glad we have Christine as an Administrator who keeps on top of things, and uses her "magical red letter administrator powers" to keep everyone civilized. Thanks, Christine!
julieann

Wow, arrogant and sidekick even...Liz you are so tactful yourself and as I recall so open to the view points of others as long as they agree with you. It may be the British elitist attitude I mistake for humility.

All joking jabs aside (and those were jests as I feel I have a relationship with Liz to take and receive those jabs) I agree with the difference in not just men and women but in personality types.

Liz
[quote=Cookey]Charm...
Strong minded,self confident even arrogant men you are but sometimes a little short on the tact and diplomacy gene,and unquestionably intolerant of alternative opinions and behaviour to your own.
[/quote]
And one of the differences between men and women (IMO) is that women make this sound like a bad thing instead of "tiger blood"

PS. Eric is my "brother-in-arms" and nobody's "sidekick" A sidekick would never have made Brian close down those first threads where Eric & I tangled. Finally a kindred spirit/warrior on board to balance out the dialogues.
Charm

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.

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

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.

Thank you, Gary and Brian. This is very good advice. J always likes to say the difference between me and a pitbull is... lipstick. This is one area where I'm going to have to just trust. You two are right. I have to do some accepting here and not push. I need to just follow his lead and be supportive. You two have gone through so much and understand what he's going through. Thank you for the insight.

Nothing about his whole situation has been normal and I feel like I've had to be on my toes the whole time. We were in shock when we got the 1st DX, We were so happy when we got the 2nd DX, then the 3rd DX really messed with our heads. I cried for a solid week. I've gotten so used to being Ralph Nader that I've forgotten how to be a wife. It sure doesn't help that I'm prone to being a control freak as it is.

Thank you for giving me some tough-love in a very kind and gentle way. I really needed to hear all that you two had to say. The pitbull is on a leash and I'll put away the lipstick.

You guys are the best!

Sandy

Sandy, on 5/1, you mentioned pitbull & lipstick in the same sentence. Neither are you a pit bull, or even need lipstick. I think if J doesn't want you around, move on. If he does, charge him a carers payment!!.. The men that are part of this forum are legends. The others are scared. If we were all the same, there would be no forum. I feel for those that are scared, but they need to have respect for their caregiver. Without the carer, the patients may not be still living. Makes me cranky that even my brother won't get a prostrate exam due to fear, as he is gay. I would rather have a prostrate exam than a pap smear!! Don't worry about things too much if there is no love.....there still needs to be an element of care from you if you are still there.... Jeans.... he might have to learn the hard way hon.....J....xxxxx.....Too many men think they are heros, but they are sooks.....

Oh, Jeans! Love you! xoxoxox!!! But what's a sook?

Sandy, I was wondering about the term "sook" too, so until we get confirmation from someone down under, I looked in my Urban dictionary which says it is "An Australian slang term used to indicate another person is soft, easily upset or just a plain p. . . . ." (or "wimp". Wasn't sure the "p" word would be acceptable in polite conversation).

Was waiting for Jeanna but just can't help myself = it cracks me up that we all speak English but we have so many sayings and terms that just don't translate. We don't even realise we are doing it half the time. You are right Anne-Marie, a sook is a wuss, a cry baby, a wimp. Just imagine your husband sitting in a corner with tears in his eyes, bottom lip trembling when his favourite football team loses and THAT is a sook!

ohh.... THAT P word - yes, spot on!!

Thanks, ladies! I'm thinking "because the patient is a sook" may not be quite what Charm was expecting as an answer to his original question. But, I suppose it could be a valid reason!

I admire anyone who gets a DX for OC and manages to stay sane. I'd be a sook, for sure.

I'm just learning Strine and Kiwese, so thanks for cluing me in. Jeanna has taken me on as a student. Brave woman!

Anne-Marie--hahahaha! I'm pleasantly shocked!!!

As usual, the overseas component of OCF tells it like it is. I started this thread because I had preconceived notions of the answers and these answers have validated the majority of them. It was very helpful for others to spell out these apparently disparate reasons especially the more controversial ones (like "sook'). Like in racial issues, comments by the actual class members are acceptable where the same comments by a non class member evoke criticism and outrage. So primarily female caregivers acknowledging issues that keep their male patients off the board can articulate them as just part of their loved ones character or in some cases, out of character. Were I to say the same things, they would be misconstrued as attacks. It's no secret that I favor the indomitable fighter model exemplified by ChristineB, EZJim, EricS, DavidCPA, Brian and many others too numerous to list individually (but you know who you are!)
I'm in the process of drafting an article that teases out the threads of these comments and weaves these disparate motives into a understandable narrative on this but if my current production timetable (as opposed to contemplation timetable) on my other writing projects holds true, it will be a year before I;m finished. It will be my opinion but one confirmed by your responses.
In the meantime, thanks to everyone for responding so honestly and candidly. And for those on OCF still reading, The thread is still open so it's not too late to add your story.
Keep the Faith

I have to say sometimes denial plays a big part too.... When my mom was diagnosed with terminal lung cancer - being the only child I had to face it head on and deal with it - at one point near the end of the whole thing - I said to my husband - well my mom is going to go - I have to make a few decisions. My husband is the king of denial - he said don't talk like that. - it wasn't negotiable. I knew it was going to happen -particularly because at that point I had seen the scans of her head with the brain mets and 6 tumors...

Don't get me wrong - my husband is a great guy. But he is also someone who would choose to ignore the stats and do what he was told by the Drs. And not want to know the rest. That's just his makeup - he's very lucky that his parents are in their 70s and still healthy so he's never had a hit home experience - to this point - he was very upset when I got my diagnosis, but knowing the type of person I am - he "knew" I could handle the details. He came with me to Drs. Appointments and surgery and all that - but he was never actively involved in my treatment or the decision process. I had him drop me off on chemo days, but other than that I drove in for rads by myself everyday. If the tables were reversed. I would still be the one here researching for him. That's just the way he is.

I've often wondered why it is that I've come to this forum and Gordon never has. He never wanted to read anything about the cancer, treatment, care, or anything even remotely related to it. I've been the one who has done all the research, tried to convey information that I thought would help him, advised him on how important the dental care is, etc., etc.

I'll never understand what's going on with him and probably never will. Maybe he left all of the above up to me because he could barely cope with the idea that he had cancer and that he had to go through treatment. Maybe he couldn't deal with anything more than just getting himself into that radiation room every day.

Sure, I would have liked him to be on this forum, be more proactive and take more responsibility for his treatment and recovery. But he didn't, and that, I think, is that.

Charm, I think your question is really one of the great imponderables. I like to think that if I were the patient, I'd want to get all the information and support I could find, but maybe not...
Anne
PS - Gordon's surgeon said recently, "you're going to die of something, Mr. W., but it won't be tongue cancer." He has a weird sense of humour.

Charm - I, too, favor the indomitable fighter group. I am awed by them. Their strength and compassion and knowledge have been instrumental in helping my son to survive. I am more than grateful every day that we have them. That goes for all the caregivers who fight on, gathering research and doing all the things they do to help their loved ones to survive. They have given me a courageous example to follow. I don't know if I'm the only one, but there were many times, when I was glad my son was not a participant on this forum. It "depressed" him, he said so he was on here only briefly. And I understood because I only needed to remember the anxiety I felt when faced with the shocking diagnoses of cancer and the possibility of losing him - and I was only the caregiver! I was glad that I could be here and freely express my fears away from my son to whom I presented the "fighter Mom" mode and only cried when I was away from him.
Anne - Maybe Gordon left the research up to you because he knows your strength and love for him, and has the confidence in you to be able to allow him to use all his strength to do the surviving part of the fight. I'm glad he has you.

Charm, I came to this site for much the same reasons as many of the wives/caregivers here. To find out as much information as I could about OC from a valuable resource- the ones going thru it. Doctors can tell you what you will experience, but they do not HAVE OC. Stats scare me to death, and of course they have to tell you what they know, which is enough for John and perhaps why he does not log on here himself. I do not press him to join in, admittedly somewhat reluctant to have him learn more than he needs to know. Perhaps it's the mother in me. Perhaps it's just fear in him. More likely a combination of both. All of the posts help me learn that we are not alone in this fight and this is a safe place. Thank you to all.

Oh Charm....you ask the toughest questions! I came because it was the absolute best place to get info and answers from those of you who have been there and done that! Mike's diagnosis was December and he was in treatment a couple weeks later. It was a scramble and then he had an allergic reaction to the chemo so was knocked silly on Benadryl a lot. Gave me a lot of time on my hands to ponder so instead I chose to educate myself. He isn't here because of his anxiety and because when it might have helped him most, he just wasn't on the computer at all. I have been blessed to find this place and although I don't come back and post often, I still read.