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.