Sure was hoping it wouldn't be just a little over a year, but trying to stay positive...he still is saying he don't know if he wants to have the surgery or go with 18 mo doc said without, I told him we are NOT ready for the bucket list, not when doc says 50% chance reoccurance and that is 50% of more living. He admitted he hasn't been the best patient(obviously) just to shut me up he said. He does still have to go see the thoracic surgeon for the spot on his lungs so when he goes there he said he will find out what they say and go from there with his decison of waht he wants to do. He said he is "tired" I said ya, from sitting around by himself down the basement, not eating, and doing bad things to his body! Do something! Keep busy. I told him bout all of you survivors here to encourage living and life and not think bout giving up. It's on the bottom of his jaw under the chin area 2 spots. Doc told him he won't know til he goes in how much bone. He said he don't want to go thru this every year and I said well if you change your lifestyle...maybe you won't have to! I'll keep you all posted and of course come here to vent. I want to print off a couple postings and let him sit and read them. So I'm going to search around for some encouraging words for him to go forward and not give up.

very very sorry to hear this Suez. Don't know what else to say except look out for yourself and use these boards to keep your own sanity and seek support whatever Ron chooses to do. This is when words just aren't enough. Thoughts are with you.

Im VERY VERY sorry to read of Ron's recurrence. He has had a difficult time of it. The decision is his to make and its a darn hard one to decide!!!!

I almost didnt go thru with the big surgery I had in 2009 to remove my left jaw. I knew it would be a big battle and I felt defeated before I even began the fight. I felt weak and like I couldnt get thru it. Somehow I managed to pick myself up and get into the fight mindset. I went into that OR smiling and ready to deal with whatever battle I had when I awoke. It was 3 weeks later and 2 major surgeries before I woke up and knew what happened. It was the longest 3 weeks of my childern's lives. The pain was horrendous!!!! It was a total of 2 months before I was allowed to return home. After a few more rough months I began to get my strength back. It was a very long rough road til I could say I was as good as I would ever be. Now Im about 20 months cancer free and so happy for every single day that I wake up and have a day to spend however I want. It was very very hard to get thru this but with the right frame of mind it can be done!!!!

Once Ron decides he will fight and work hard to help himself get stronger he cant be helped. No matter how much you tell him it will be ok and he can do this, it wont sink in until he makes up his mind that he wants to live. I wish he could understand how much strength he could gain from being a member of this forum. Joining OCF wont change what he has or what he needs to do to help himself. I hope Ron chooses life over a terrible death. But if he would choose not to fight I can understand it 100%. To me as long as there is a chance o live then there is no other choice but to fight the beast.

Be well to both of you!!!!

Hi Suez, I am sorry that you and Ron got such difficult news. Getting news like that will knock you flat. Sometimes, it takes a little bit for the fighting spirit to kick in, to bounce back up, and to get back into the game. It's a psychological process of hearing, responding to, dealing with, and then acting on the news that's just hit you.

To me, when we were thinking J had around a 30% chance of survival, it helped to think that he really could be the 1 out of 3 who beat it. 1 out of 3 sounded better to us than approximately 30%...eventhough it is pretty much the same. So, it looked more manageable for him to do whatever he needed to do to make that happen.

I'm sure there are many things that he would like to see...lots to live for. Forgive me for not knowing much about you and Ron personally, but...sometimes remembering that there are important family events in the future--children getting married, the birth of grandchildren, etc. can help get that fighting spirit going. Who can resist the thought of dancing with a beloved granddaughter at her wedding or giving a toast to a beloved grandson and his new bride? I hope there is something you can think of to encourage him that there is so much more for him on this side of the grass.

As Charm and Christine and other folks who have been around for a long time can attest, it is not a pleasant process to let the oral cancer take its course. By all accounts, it is horrific.

If Ron won't participate on the forum, maybe he'd be comfortable with PM's or direct e-mail. I'm sure any number of survivors here would be more than happy to help.

I wish you luck. It's tough when they are stubborn. I have learned to mentally go to my 'happy place'...actually, I'm now having my mail forwarded there!

Love you, girl!

Sandy

SUEZ: Christine and Sandy's posts say a lot - maybe print them off and see if Ron will read them. I pray that he will, and know that there are others who have faced even worse things than he is going to have to do. It's a horrible battle, but it can be done and won! My heart goes out to you both.
julieann

Absolutely - what Christine and everyone here have said do far is important.. I'm sorry its back but you yourself said that a change in lifestyle - smoking in particular - would- could- make a difference. hopefully he will decide his life is worth fighting for- if not it may be hard to accept but try to respect his wishes if he chooses against the surgery.. Care for yourself, to keep your sanity. take care.

What a difficult time for you both and how disheartening this news is. You have received such wonderful advice above that there is nothing more for me to add - all I can say is that as humans we are programmed to fight for our lives. And with 50% odds (I'd prefer to think of it as 51%1) I would plow forward - doing what needed to be done. I remember when Christine was expressing her doubts about even going through the surgery ... so his feelings are normal. Perhaps he is going through a depression? Has he seen a doctor to deal with his lethargic view of life? Who could blame him for feeling like that and perhaps some medical intravention is needed. There is an antidepressant which has the side effect of reducing desire to smoke - so perhaps that is where he might be directed?

We are here for you both. Keep posting.

Donna

Thanks everybody. I did print off some other posts of survival and fighting this, but haven't given them to him yet to read. He's kinda pissy right now. He did just wake up and is drinking his first cup of coffee, need to get him to read them in a sober mind. I wanted to put them down where he sits and let him read at his own pace. We talked last night and yes I pointed out the reasons to live, like see our 1st granddaughter go to kindergarten, get to see my youngest daughter marry eventually, live longer than his mom, who just turned 78 the 6th of this month, hear our 2 yr old grandson finally talk, be here for our Clambake in October around his birthday that we started to do annually to celebrate it, 2 weddings to go to July and October. I've been trying to give him reasons. The cancer is under his jawbone not in it that the doc sees but never know until he gets in there, he also has the Thoracic apt for the spot on his lung and last night he was talking bout cancelling that, I'm like Oh no, you need to go to see bout what that is all about too. I am starting back to work Monday and I asked him if I should maybe not and he said no, go back to work. I don't know why when I will be taking off for his surgery(I am hoping he goes that route) we did talk yesterday and I told him it sucked I know but at least it won't be as drastic as having his tounge replaced, but he will still get the neck disection again as the 1st surgery, he also spoke about Roger Ebert and how he looks and I said he looks fine, he's alive! Doc says he feels Ron will not have any major malformation in his face, but you never know until til he gets in there. So far nothing spoke of bone reconstruction so that is a good thing with no other pain caused by this. I told him until they tell him it's terminal and nothing more can be done, don't give up for Christ's sake. He also spoke of not even making it thru the surgery and I said if that happens at least you tried! He needs to get food into him, he's eaten very little, his mindset, if it is too hard to eat it's not enjoyable so he drinks beer to stop feeling hungry...stupid I know and I can't get him to listen. Believe me I've tried. My youngest daughter is upset of his talk of giving up. She's very angry. Thanks for all the encouraging words. Ron believe it or not does not know how to work a computer. He's talked about learning but...he always has other things that he feels is more important to do than learn and I won't try to teach him when he's drinking...IF he makes the decision to live, I will make sure somehow I will get a damn doctor to listen to me to get him on medication to stop smoking AND somehow get him to stop the drinking also. He gets very mad when I try to tell Docs bout his drinking and smoking. It's really bad. But this time I will if he choses life!

It sounds like maybe some of the initial shock is wearing off and he's leaning towards the surgery!!! Yeah! (reading between the lines here but that cue about going back to work kinda heads that way so hopefully he will. Take care - and too bad you cant make him unconscious for a month or two - that way he'd get past cigarette withdrawal - and the drinking!!! Good luck!

Cheryl, he was in a induced coma with his bout of Non Hodgkins Lymphoma and as soon as he started getting better and choherant, the smoking began in the nursing home he was at for a month, and when he was hospitalized during after that he was a sonofabitch for nicotine, til they finally listened to me and gave him some gum to chew and a patch and he was poof a totally different person. He is hooked badly. And today he asked me bout what hospital stay did he have the trach in, he says he is confused bout which cancer bout was which in the hospital. I told him it was the last one with the partial glossectomy, and he said he hated that cuz he felt they ignored him to clean it and I said I would make sure they would do that for him and that he made it through that and now he knows at least how to take care of the trach, but that he hated it and I told him in just a couple weeks how he was sitting outside at his mom's with me and my daughter and grandson who was just 1 and how he tried to speak to him and my grandson mimicked his growling voice and how we all cracked up laughing and I swear to this day my grandson still makes those noises when he talks or tries to, he does not talk yet, only 1 syllabel words so I told Ron he needs to teach him how to talk this time, and he laughed. If the baby don't start talking in 6 months he will be evaluated the pediatrician told my daughter and yes he is very smart kid, motor skills and problem solving but he just won't talk in any kind of sentences. Hoping he's just lazy. lol So anytime Ron asks me any questions I am staying and giving him positive responses. I told him he's not done doing all the things he needs to finish here. I'll keep you all updated on how things are going of course!