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#50483 05-23-2003 04:42 AM
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This post originally put up by DQKCK
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Member # 552 , and moved to a new topic thread by Brian HIll

Just a little update on my husband. He had an MRI last week and the results showed the Chemo and radiation did there job. He had Stage 3 or 4 bbase of tongue cancer with 3 lymph nodes involved. He was very stubborn about the peg tube and fought to gain wgt . He lives on Xylocaine viscous and gained 10 pounds on lots of Ensure Plus using the gel each time he swollowed. His stubborn ness worked because all he thought was " noone was going to put a hole in his stomach" No matter how I explained he still thought this. What I'm curious about is unlike other postings here he didn't get any great thrill from the positive results.Does it come latter for some or do some always worry about what may come latter.
He has never read any info choses to stay as unknowlegable as he can . Asks no questions of the Dr . Just feels that cancer cells will hide and come out when they feel like it. He no longer takes any anti depressants refuses along with any other pills.So I quess a lifetime of the glass always being half empty stayed . I have not enlightened him on recurrence statistics . I do give him a lot of credit for managing in general all of this and do not interfer with his choices.
I just wanted to post this so any other caregivers would know sometimes people don't always see the good side after this experience.I hope to stay a part of this Forum while we are on this repreave . So if I can help anyone with what I have learned from this journey I will. I want to thank all of you for the support you have given me. You have been the only ones I could "talk " to thru this. Kinda sad to say that but welcome to our cyber world and thank God for all of you.. Best to all of you
Diane


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#50484 05-23-2003 05:57 AM
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Diane,

Everyone has their different ways of getting through this, I see in your husband some of the same attitude as mine; I hate taking pills, I put up with the pain, I really pushed myself to not loose weight, I avoided asking certain questions of the Doctors (the answer they would give wouldn't help anyway) I think more time needs to go by before things are back close to normal. For me I knew I was making progress mentally when my sense of time returned. From the time I was diagnosed to many months after treatment ended Time went by very slowly. Weeks seemed like months, months like years...After 6 or 8 months went by I started to notice days and weeks were starting to go by a little faster. Now they go by too fast (but that is another subject)

My point is the Mental part of this takes a longer time to heal than alot of the physical treatments. I also noticed a bit of new fear when all the treatments ended. You loose any sense that you are actively fighting the disease. That is itself a new sourse of stress. If he needed antidepressants before I would suggest he may still need them. Get some help figguring that out.

Take care


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#50485 05-23-2003 09:34 AM
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Hi Diane, I know just what you mean. My brother in law is very stubborn about taking any meds. He got the feeding tube with no problem but still doesn't like the pills for this and the pills for that. He says they just lead to others to correct one side effect or another. At first he had a very bad outlook on this whole thing. After speaking to two of my husbands family members who are cancer survivors, he changed. Hope is something anyone going through this needs. I came here for information and found the most wonderful people. You can't imagine how they have helped my whole family. As far as not being thrilled with good results, maybe it's just caution. Today is my brother in laws last rad treatment and he feels terrible. A ct scan yesterday showed that his tumor is almost gone but he didn't excactly jump for joy. (I DID) I guess we just don't know how they feel. Hang in and hold on. My prayers are with you. God bless you and watch over you both. Gwenny

#50486 05-23-2003 11:15 AM
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Thank you all for your responses. I'm thrilled too Gwenny. All I can do now is watch and wait . I think he thought his progress as far as feeling better would be quicker. We are a fast pace world . I wish everyone would have some good news as well and all of you and your loved ones will have an end to this battle. Im sure it's feels like the war in Iraq It's over but a lot of loved ones aren't home yet.Take care
Diane

#50487 05-23-2003 02:30 PM
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Hi to All. I just had to mention that my husband was basically the same way....when the doctor mentioned that the radiation did a "better job than expected" I was thrilled beyond words...and Johnny seemed rather quiet about it, to my surprise. But I think that was due to the fact that there was a lot of problems yet at that time - with mouth sores, radiation burns, etc. and that initself made him less-than-thrilled at anything. Then after his surgery - the doctor mentioned that everything was good so far....and I was elated, but John was rather blah-say. I didn't know what to make of that, but I think it's his way of being "cautiously optimistic" - since even though things are Ok now...we're not of the woods yet. All we can do is hope and pray for the best...and take it one day at a time. I'm glad though to know that others have had their loved ones react the same way....I figured it was pretty much just my husband and his moods like that!


DonnaJean
#50488 05-23-2003 06:21 PM
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Dear Diane,

It is so strange how the human outlook differs. My husband got the peg tube with no problem, but then absolutely REFUSED to use it. Love nor money could make him take the fluids. The day that radiation was over, he made the surgeon remove it. (In the long run, he lost 40 lbs.)

Then he got news after his first scans that he had a spot on his lung. He made me promise that I would not, under any circumstances, let them put the feeding tube back in. I reluctantly said ok.

After hearing that the lobectomy was benign, I ran into his room! I hugged him, so damn happy that this was not a met. He didn't even register what I said. And really hasn't to this day. I think it is more of a survival instinct. "Ok, I never knew I had cancer in the first place....how can you come in and convince me that it's over?"

Hold him tight and let him know that you are there. They are under so much stress at this time that I don't think they acknowledge much at all that is happening. They are dealing with so much emotionally. But, if my husband pulled through, I know yours will too.

It takes time, and I know that's a hard thing to hear right now. But, so true.

Love,
Mandi


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
#50489 05-23-2003 07:25 PM
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Group Hug time here... It isn't a guy only thing it is a We have never been here thing...and Mandi he has a point some of us never did know...so it takes a while to get to a point where we can say it is over?

The thing we all should think about is What Is important?

PS I feel out of place because I am the husband...


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#50490 05-24-2003 03:47 PM
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Another view from the husband's/patient's side of things, maybe can shed some light as to why we do the things we do? (But I'm not giving away the "big secret")

Yep, I"m another one not big on taking a lot of pills, no PEG tube, etc. The reasons are probably on a couple of levels.

To me it all means giving in to the idea that I've got some potentially fatal disease, acknowledging my mortality, etc. Second level is that it may even be partially a "macho" thing, not sure. The toughest parts mentally to me are the times when I realize that maybe I'm not all that tough, can't eat this or that food, and have to accept that I'm not the iron man I thought I was.

Yes, I do the Ensure Plus, even though in my mind it's for old people in nursing homes. When the pain in the throat gets too much, I'll take a Panadol, but nothing much stronger, and then deal with what's left.

As far as non-reaction of good news, well, we all knew it would be good news didn't we now. What's the big deal. Again, it's the dealing with our own mortality I think. The news is going to be good and we won't allow for anything different. If it's not good, then we'll deal with that in our own way, some with anger, some with denial still, some just say well, we'll deal with it and get on with it, next issure please.

One could write a book, and probably someone has, about all the mental aspects of it all. Diane, Gwenn, Donna, I recognize a little of my self in all your posts, but if one thing, I'm not shy about yapping about all this, feelings and such in a forum such as this. So, hope my comments can give you some enlightmenment, at lest from my perspective anyway.
Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#50491 05-25-2003 04:27 PM
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You go guy....and thanks for not giving away the "big one" (cripes, you might just as well tell them the secret handshake too!)

The interesting thing is we are yapping about it I wonder why some don't.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#50492 05-27-2003 08:44 AM
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Hi All:

My take is that cancer, and it's sudden headlong plunge into facing personal mortality, gives some a quiet resolve while it makes others more extroverted. Dave has developed a sense of himself and an understanding of what the word fallible means. I'm not sure that's a bad thing. Scary, but not necessarily bad. It has made him (and by proxy, me) more real (albeit with less time for bullshit but maybe there was too much before in life anyway).

Dave goes to see the radiation oncologist for a check-up on Thursday. As always, my fear is surfacing higher than my ability to accept the unknown. I'm also not opposed to the power of a little group luck so please keep everything crossed-it's nine months out now but whose counting?

Thanks,

Kim


kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"
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