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#13324 - 06/07/02 09:05 PM Hi there everyone
Anonymous
Unregistered


Well, my dad sent me this site. I don't know if he posts here or not. He's been very private about his cancer, and I have not pressed. But since I'm here, I figured I might as well post, and be involved. My dad is working on 4 yrs of cancer free, but he had a tumor in his gums, that had been seen, but undetected for quite some time. The surgeon had reccommeded a radical surgery, involving some serious facial and neck surgery. He bucked the system, and got second opinions. He ended up having about half of his upper jaw removed, and a prosthesis put in place. He has problems eating still, but he seems to be coping with it. Notice I didn't say COPING WELL. I think he's depressed. He's been very private about the whole thing, and I haven't pressed. IT'S HIS CANCER! I love him tremendously, and I would never impose. Anyway, I'm here to make sure I am doing the right thing. I am here to make sure that I shouldn't be pressing. That I should just be holding his hand. That I should just love him, and ask no questions. Maybe he wants me to ask questions. But, I'm sure the people here can give me the advice I need.

At least I hope!

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#13325 - 06/07/02 11:21 PM Re: Hi there everyone
Brooke Offline
Supporting Member (50+ posts)

Registered: 04/15/02
Posts: 52
Loc: Toms River, NJ, USA
Daughter,
I think in your heart you know what your dad needs....if he is a private person, then maybe he prefers to remain that way. It's a tough call...and you are doing all you can by just being there for him. My mom was extremely private, and I am complete opposite! I want to know details, and rip everything apart until I'm aware of situations. My mom, on the other hand, prefered to keep her head in the sand and remain in the dark about cancer as well as most other things in her life. Everyone has their own way of dealing (or not dealing) with things, and now, after a long struggle, my motto is.." to each his very own".....just know that you can't do anything to make him feel or think differently, and be there for him, even if all you can do is hold his hand and say I love you.
_________________________
Hope is the one thing no one can take away from you!!!

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#13326 - 06/09/02 07:34 PM Re: Hi there everyone
Anonymous
Unregistered


I guess maybe that's where my confusion lies. He has always been the kind to rip it apart and figure it all out. And he has, to some extent, he sent me here after all. He goes to survivor meetings, and has spoken a few times. He even wrote an article taht was published in the survivor newsletter about bucking the system, not accepting the doctor's prognosis, and looking for alternitive treatments. I think that's theraputic for him. At this point, he's doing okay. I just worry about him and his lifestyle, high stress, schmoozing clients (ie, drinking socially) and like I said I know he still smokes, and hides it. But you're right, I'm powerless there. He will make his choices, and he does it knowingly. So, I will sit back and watch and step up when prompted. Thanx for your reply.

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#13327 - 06/09/02 08:19 PM Re: Hi there everyone
Brooke Offline
Supporting Member (50+ posts)

Registered: 04/15/02
Posts: 52
Loc: Toms River, NJ, USA
Knowing when to step up and when to back off is important. I honestly do understand where you are coming from....although my mom didn't research or go to many groups, she asked for advice when she wanted, and other times, I felt like it was a guessing game! Email me anytime if you ever want to talk, or IM me if you want...seems like we have much in common....good luck!
_________________________
Hope is the one thing no one can take away from you!!!

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#13328 - 07/30/02 11:51 PM Re: Hi there everyone
Cowboy Offline
Member

Registered: 07/30/02
Posts: 2
Loc: Texas
Okay Sweetheart, here I am.......Sent you here and I've only now arrived....ha

I'm not private. I'll answer ANY question you have. I choose not to burden you with my situation nor do I choose to force my views on you, my lovely daughter, or anyone else around me. One of the absolute worst things in life is to be introduced to a reformed alcoholic or a newly born again Christian.....No offense intended for either please. You can just be totally unbearable in your crusades.

Cancer is a personal thing to some degree. It's something you have to learn to deal with on a personal level. It's traumatic, it reminds you of your mortality or in my case makes you realize it, it does a lot of things to your mind, some of which are impossible to share.

It's very difficult to explain. I've always thought I had a better than average command of the language and written word, but there's a lot about the emotion of cancer that escapes that. I don't know that I can properly or efficiently ennunciate what a person goes through, once diagnosed.

I'm gonna stop right here. I'm getting hungry and the night is wearing on. Love and compassion to all who have the patience to read this.

Cowboy

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#13329 - 07/31/02 08:40 AM Re: Hi there everyone
youngerag Offline
Platinum Member (200+ posts)

Registered: 03/19/02
Posts: 234
Loc: Wilmington, Delaware
Cowboy,

Welcome aboard. You are so right about the emotional aspects that come with the diagnoses of cancer. Two years later, I still have problems dealing with the fact that things will never be the same. By the way I agree with you on born again Christians and recovering alcholics. I being a former smoker just try and keep my mouth shut when it comes to talking about cigarettes.

Again, Welcome aboard. Take care Anne.
_________________________
Anne G.Younger
Life has never been better.

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#13330 - 07/31/02 08:49 AM Re: Hi there everyone
Packer 66 Offline
Platinum Member (200+ posts)

Registered: 04/11/02
Posts: 273
Loc: Maine
I totally agree, no born agains for me either.................and while we`re all being honest and letting it all hang out, I seem to have a perverse desire to check this board daily..........and usually get angry.....so many people on this board seem to be their disease, instead of a person with a disease..........my husband has had lower face removed and rebuilt.........in the mirror, his identity is gone, but he`s still the person and not the disease...........people worry about ever tasting food again...guess what? he never will taste anything again..........but he`s alive, and the cancer will not be the center of our lives........as a practicing Buddhist, I consider it a gift that I have the opportunity to care for him.........it`s not easy, but who said life was gonna be?

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#13331 - 07/31/02 01:41 PM Re: Hi there everyone
youngerag Offline
Platinum Member (200+ posts)

Registered: 03/19/02
Posts: 234
Loc: Wilmington, Delaware
dharmacat,

Don't be so hard on the people that have this disease. Everyone reacts differently. Some are stronger that others and some are weaker. I know you are a caretaker and that is so comendable. But you have never heard the words spoken to you directly "You have cancer."

No one ever said that life was going to be easy, and let me tell you I've had a lot of bumps in my road. But the worst for me were those three little words. I have also been a caretaker for over 10 years and I know how hard that is also.

Cancer is not the center of our lives, it is just a nagging voice that is always in the back of your brain, this happens most of the time before one of our many check ups with our many Doctors.

As you will notice, I check this board one or two times a day. I try to offer upbeat advise even on those days that are not so good.

Take care and I wish you and your husband well. Anne.
_________________________
Anne G.Younger
Life has never been better.

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#13332 - 07/31/02 02:12 PM Re: Hi there everyone
Midwest Gal Offline
Contributing Member (25+ posts)

Registered: 04/22/02
Posts: 26
Loc: Des Moines, IA
Hi everyone.
I don't initiate conversation about my past cancer to others on a regular basis. I hope they don't interpret my silence as depression. Just the opposite. After awhile it becomes old news and I imagine that it's as boring for them to hear as it is for me to talk to them. I want to get on with living, and want to find new and more exciting things to hold conversations about. I haven't eaten solid food in a year, but you know what, I can think of lots of people who'd trade burdens with me any day. I know three people at work who've lost their children. My children are alive and healthy! I'm not about to let myself get hung up in a pity party just because I can't eat a hamburger!
Please don't take this the wrong way. I'm not saying it's wrong (there is no right or wrong in this game) to feel sorry for yourself, but speaking for myself, silence on the cancer subject doesn't mean I'm depressed, just means I've talked enough about that subject and am ready to move on alittle.

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#13333 - 08/01/02 09:45 AM Re: Hi there everyone
Donna Offline
Gold Member (100+ posts)

Registered: 03/20/02
Posts: 188
Loc: Plymouth, Minnesota
Hi Everyone.........Like many of you I don't talk much about my cancer experience anymore except on this forum. Why? Because it is a safe place for me to speak freely with folks who understand what a dry mouth is really like; it's nice to know that five years out I am not the only one still suffering side effects of RAD and finally, I feel like I can contribute and help folks out once in a while. Does cancer rule my life? No. Do I need to talk about it? Yes and no, depends on the day. Would I like to eat a hamburger without it being so much work? Your damn right I would. Cancer does not define me, but it is a part of the whole person I am today. How can it not be? Everyday I am reminded when I eat, speak, and look in the mirror. I am STILL me, although I am different, no question about that one! Am I complaining? No. I accept my life and even think I have a damn good life too.
However, when I was first diagnosed I was the disease. I thought about cancer 24/7 as I lay in that hospital bed with chemo dripping through my veins, a feeding tube in my stomach, minus most of my tongue and fearing not only what my life would be like in the future, but if I'd even have a life. I was the disease as I struggled to learn to re-eat, and learn how to move my poor tongue so the "sh" sound didnt come out as grunt. I remember those days clearly. I remember my struggle and yeah, I suffered. I remember looking in the mirror the first time at my "new" face and "new" tongue. Did I like what I saw? Nope. Was I grateful to be a live? More than you will ever know. I even remember having a few pity parties for myself; they didn't last long, but yeah, I still had them. I am human! Slowly, and I mean slowly I got my life back. I am not the disease anymore; I rarely if ever think about the way I look or speak. I rarely talk about MY cancer unless someone asks or unless I come to the Oral Cancer Message board knowing full well what the topic is going to be. But yeah, if I could eat that hamburger without it being so much damn work, I'd be in seventh heaven, but I can't because I had cancer and lost most of my tongue. In the scheme of things is that a big deal? Nope. Does it control my life? Nope. Do I think about it? Yep, but only when that big juicy burger in right in front of my face. LOL

I am fully aware that I survived this cancer and faired better than some. I have a great life. A life full of joy and happiness. I have a wonderful husband and great kids and I am so damn thank ful to be alive I can barely contain myself sometimes. No, I am not the disease anymore but I am part of the cancer "club" whether I want to be or not. I'd like to think that I rule cancer, that I beat it, but I don't know that anymore than I know if I'll get hit by a truck tomorrow. So cancer remains on my mind, not in the forefront and it certainly doesn't rule my life, but I think about it. I watch my oral cavity for any thing funny looking and even have this awful habit of checking my neck for bumps....my armpits for bumps (swollen lymph nodes) Still, I don't think of myself as the disease but rather a practical person who is on the ball....someone who wants to beat this disease and someone who is doing everything I can to do it. If that includes "talking" about it, then so be it!

I am not a Born Again Christian, a recovering alcholic, or a Buddhist; however, I do think we all need to be respectful of those that are. Somethings are just better off being left alone and religion, on a public forum, is one of those things in my opinion. We need to stay focused on why we're here in the first place and that is for support and knowledge with reguards to Oral Cancer. Sincerely, Donna
_________________________
SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!

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