I have been researching and educating myself about oral cancer since Matt was first diagnosed back in July 2009.
He has been going with the flow and taking things as they come along. He did finally visit with a counselor last week and last weekend discussed with me the possibility that he may only have a few years with us left. I of course have been privy to this knowledge for quite a while now.
He's thought that the docs have been 'under treating' his condition. I knew they were doing all they could, and in the case of three lung surgeries, they went above and beyond normal protocol. Now, as they tell him to wait out the current lesion on his right lung to see if something else comes up in the next month or so, he's beside himself with the waiting. I know no treatment is curative for him.
He is just now coming to terms with it and is freaking out.
I did my freaking out last summer. His turn is over due.
I hope I can hang in there with him as this sinks in.
On one hand, I really don't want him to give up on us, on the other, I really don't want him wearing himself out chasing a cure that doesn't exist with the time he has left.
Is it acceptable to ask his doctor to lay down a time schedule? Can I ask how he thinks things will progress from here? How reliable can that information be?

Hello, first I would like to that I wish you and your husband didn't have to go through this and will keep you in my prayers.

Many have expressed truthfully that no one really knows the answer to those questions. That there are always exceptions to the rule and that you should never give up hope. I can give you what was my experience after having gone through my wifes diagnosis as terminal in April of 2009. Our course of action was to pursue any and all treatment that would extend her life and in a manner to not lose her quality of life. I would want to be sure that you would like this information before going much further and I should let you know that she lost her battle this past summer.

Let me know if you would like to know what the doctors told me and in our case how accurate they were. Remember that everyones case is different and the results from treatment can vary greatly for patients.

Great post Tom.

I'm so sorry you have to face this difficult situation. I also came to the reality before my husband did. He, too, thought that he was being undertreated. I often begged his doctor to be blunt and honest with him but he didn't want to take his hope away. I feel that this can be a disservice to the patient and the family but then again, I wasn't the one faced with death. I think as caregivers we see the hard truth because we will ultimately be the ones to pick up the pieces.

He finally decided that he'd had enough treatment after the last round of chemo made him sicker than any of the other treatments had. His body had had enough long before his spirit did. It is such a hard thing to deal with-quality vs quantity. I can give you more detail if you want. My husband also lost his battle so I would give you more info in a pm.

I don't know about other caregivers, but I need to hear these things... I need to know how this cancer progresses. I need to know how to help my husband with acceptance and with the final stages that may be to come.
I am a very realistic person, and odds aren't good when its diagnosed late staged with mets. already forming.
So, if anyone would like to share information with me but you may feel it wouldn't be good for the general forum, please feel free to PM the info to me. I can take it.
Perhaps some other CGs might chime in and tell me if I'm alone this wondering, or if you would be interested in hearing this information as well.

When my cancer came back the second time, I found these articles on the American Cancer society web site. Nothing you don't already know from bitter experience, but perhaps it will help to read them
Nearing end of life It's the first of thirteen little snippets, you just click on next to read them all.
Please take care of yourself also in this terrible time.
Charm

Thank you

I guess in some respects i was luckier than you.I never knew Rob wouldn,t make it until 21 days before he died.He was given 90% chance of 10 year survival and then no chance when his recurrence occured 3 months after he finished treatment.On the other hand robin never expected to survive from the day he was first diagnosed.In his ignorance cancer meant dying.After an initial drunken rant and tears the day he was told he had cancer he was the most stoical man i have evr met.His terminal diagnosis brought nothing but acceptance and a blitz of organising,then he just wanted it over.

For us caregivers its quite a different story,and you can read mine in my blog "walking towards the light".

Several of my lovely girlfriends here went through a long and protracted demise and i think that was so much harder.Mine was more like ripping the dressing off in one hit,but that brought its own challenges afterwards.

this is a subject many of us are comfortable talking about so don't ever be afraid to ask any questions you may have now or in the future.

love

today the docs told him they don't want to treat the one lesion they found via ct because they are almost certain it isn't the only one. They advised us to wait until next month to have a PET that would give a better picture of what they are dealing with.
He is crushed. He still held out hope for being cancer free someday. The RT doc said... you haven't been cancer free since we met. (Jul 09) At that point, Matt stood, shook his hand, and walked out.
I hope he can find peace within to enjoy the holiday season, I hope that our road trip to New Mexico will still happen and he will have fun. I hope that he can learn to live each day. One at a time, and not worry about being free from the cancer, but learning how to make the best of the days it allows him.

I'm praying you have a wonderful holiday season. Put yourself wholly into the moments you have together. Try not to let the small troubles of everyday life get in the way.