I have been wondering if I am surviving or just in a state of existing. The pain is worse daily and getting nourishment is much harder to get into this old body. Everything is so much harder to swallow and the choices are getting to be less. Does anyone else feel this way and have these thoughts? Just some of the thoughts I have been having lately. My energy is waning too.

Jim,
Yep! I feel this way too! I berate myself for it when I see how much more people like you and Christine have been through. Yet, it's me I have to live with every day with little to look forward to and things which appear to be getting worse, not better. My trismus is getting worse despite the exercises. The therapist wants to wean me off the feeding tube but the choices of food by mouth aren't enough to motivate me. The PS says his goal is "quality of life". When? How? I think his idea of that and my idea of that are at opposite poles.
Family & friends mean well but they really don't want to hear my complaints about the pain in my legs, my difficulty walking, the pain in my jaw, the difficulties with eating; etc. They also don't know what to say when I do complain ( which I don't do often). Yep! Surviving or existing?
Pat C

[quote]Does anyone else feel this way and have these thoughts? [/quote] I have those thoughts each and every day, even though I have not had it as hard as you. I think it's only natural when things go as wrong as they have for you. I'll spare you the platitudes about being upbeat but trust me, somebody with your moxie would get bye just fine without eating or swallowing at all - just living on a feeding tube.
When those thoughts don't go away, I give in to them for a full half hour - even intensifying them by playing a sad song by Patty Griffin: Rain. I've cried so many times listening to it and I feel much better afterwards here's an excerpt
[quote]Sometimes a hurt is so deep deep deep
You think that you're gonna drown
Sometimes all I can do is weep weep weep
With all this rain falling down

Strange how hard it rains now
Rows and rows of big dark clouds
When I'm holding on underneath this shroud
Rain

Its hard to know when to give up the fight
Some things you want will just never be right
Its never rained like it has to night before
...
I just want another chance to live
Strange how hard it rains now
Rows and rows of big dark clouds
But I'm still alive underneath this shroud
Rain


[/quote]
Keep the Faith brother
Charm

The 2 of you I understand completely. I just wish I had a feeding tube and maybe I would do better. You both have had a rough go too and I would bet the 3 of us will be here for a long time yet one way or another. Charm, thanks for posting the words from the song. I really loved them and what they say. I'm sure Christine will be along side us as life continues, even if it can be miserable. Miserable but enjoyable at times . The bad makes the good more realistic and pleasurable. My kids give me the biggest down days. Move closer Dad so we can see you more. LOL Maybe a phone call every other day and a visit once every month. Maybe they are the sick ones and I'm supposed to worry about them. Glad I was raised to take care of my elders.

Jim, it's hard for me to really understand how tough things must be for you. I realize I got off easy comparatively, and I still have thoughts like yours all the time. Like Charm, I'll refrain from the rah rah. Just know that my thoughts are with you, brother.

I will say that I find your kids' conduct inexcusable. Sorry but that's how I see it. A few years back I moved across the country to take care of my dad in his last days and was honored to do it. And I still felt I didn't do enough.

Hang in there. Keep writing.
David 2

Jim

I'm glad you liked the song. While the lyrics do move me, the tune also conveys the sadness that you are posting about. Here's a link to the you tube music video - over 1 Million people have watched and listened to it. It's moving.
Rain by Patty Griffin
As for your children, it's a timeless problem: As Shakespeare wrote in 1605 in King Lear, Act 1, Scene 4
[quote]How sharper than a serpent's tooth it is
To have a thankless child! Away, away![/quote]

When my Dad needed treatments for prostate cancer and his local NJ Navy and Army hospitals would not take him since he was retired and due to budget cuts, they were only treating active duty personnel, only Walter Reed Medical in DC would treat him. I took off from work to argue with the bureacracy over getting him admitted as well as his treatments. I drove to visit him every night from Arlington Va after work for a month. Then he and my Mom stayed with my wife and I in our teeny condo for his subsequent outpatient visits and shorter hospitalizations for heart surgery. We were newly married and it was quite crowded and not very romantic but my wife never complained about me being a dutiful son. I'm glad I did it, and can still remember how proud my Dad was of me when I convinced the doctors to prescribe a couple cans of beer a night for him in the hospital.

I am like you 2 guys. I took care of a widow lady for over 20 yrs. Not a relative but a great neighbor. Then I took care of my mother and dad both until he died of a heart attack one day. The day before I had to promise to look out for my mother and a brother that got his mind screwed up in vietnam. He ended up in a rest home after my Mom died a few years later and I visited him in a rest home daily for 9 yrs. My in-laws were old and needed care so I took them under my wing too for a few years. But like you, I considered anything I did for any of them to be a pleasure. Heck, I even took residents of the rest ghome places they had never been such as Seaworld and to see Christmas lites. I wish my kids were like you guys.

Everyone on here has down days. Some have more than their share of those while others seem to sail right along. Sorry to hear you are feeling low Jim. Its probably the upcoming operation that has you upset. We all get scared, I was very nervous about my latest surgery.

Sometimes OC gets to me too. It pretty much ruined my life. I lost my house, dogs, and career of course all thru my own choices. Being very disfigured takes its toll on someone day after day. I had planned on returning to dating once I raised my children, now that isnt possible anymore. So much for that future. Im thrilled my doc fixed me but while its much better, its still a far cry from how I looked before. What helps to keep me positive is to remember all those we have lost along the way and remember how lucky I am to be here.

Nobody gets thru this easily and scar free weather you can see the scars or not. Oral cancer is just plain brutal!!!! Do your best to count your blessings. You have a whole family right here on OCF. Hope you cheer up soon

This is one time that I am either disgusted or have the feeling a little down. I really don't mind the funny looking face , the loss of so much weight, or people not recognizing me. I was always the one my kids came to for advice or when they needed something. It just burns me that they can be so unconcerened or offer help when I need some. I understand they have their own lives and families. I just have to get it into my head that I must have been raised with a different idea of helping others and especially helping family and friends. Thanks for letting me blow off steam. Like they say, "It all comes out in the wash".

Jim

That's what we are here for. I was wondering how long before Christine posted with her usual upbeat message. Bear in mind that you would have to be Methuselah for your kids to be like me I always end up cheering myself up and escaping the funk by focusing on how things could be much worse.
Here's a thought for you Remember that popular legend that the Eskimos put their old people on ice floes and set them adrift?. According to the Straight Dope web site, it's not been common since the beginning of the 20th century but in the past, here's the details
[quote]On the other hand, when food did run short, the old and sick were looked upon as drains on the community's resources. Sometimes they were killed - thrown into the sea, buried alive, locked out in the cold, or starved to death. Far more commonly they were simply abandoned to die. The victim might be taken out in the wilderness and left there, or the whole village might pick up and move away while the old person slept. If the villagers were unexpectedly restored to prosperity, they might go back to rescue those left behind. An abandoned person would also be welcomed back as a full member of the community if he could manage to make his way back to the village on his own. But usually he couldn't. [/quote]

Charm