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

Jim,
I am sorry that your feeling so down. I have been here for a just a little over 1 year and your one of the constants around here. I always look forward to reading your posts and hearing your bits of strength and wisdom. Is it possible for you to get a feeding tube? I know my worst days have been when I was so hungry and weak from not enough nutrition. I am sorry about your kids also, I hope I never let my folks down. They are and have alsways been my strength, My focus right now is to help them in these late years and be there for them. Unfortunately, when I was younger, I didn't always see just how much they needed me. I too was really busy working and trying to raise a family. Hopefully your kids will open their eyes and see how important it is to be here for you right now. Take care. Hopefully when this upcomming surgery is over you will feel better. I get so scared and gloomy when I have surgery's and such happening.

Thanks for reminding me about the Eskimos. I saw a documentary about that a few years ago. I have my self cheered up today. LOL Woked my butt off for awhile and am ready to go buy some flat 18 X 18 blocks to lay in front of my shed. Thank you for the boost all. I knew you guys could wake me up. (^*^)

Adopt me Jim..I would look after you
Then again I had better stay put to look after my Dad 81 with pancreatitis and Mum 82 with her pacemaker and on warfarin. At the moment thankfully both are doing OK. They have each other and live only 30min away. We have lunch out every 2nd Sunday and I organise our holidays for 3.
I have already booked for Christmas to spend it close to the rest of the family. We had to cancel last year as Dad landed in hospital for 4 weeks.
I am so sad that your children are not there for you now when you need the most.
Tell them all if they are not nicer to you now they are out of the will. (BTW that does not motivate me because mine are just getting by on welfare (love them both dearly).
I wouldn�t advocate the yak�s home in Timbuktu however there is always OCF to threaten them with.
You need to be with us for a long, long time with your health improving so that you can make their lives miserable�just kidding!
My love and best wishes for the upcoming surgery.
Angel Gabriele

Jim, I'm glad to see your mood is starting to improve. I agree with Christine that the upcoming surgery has to be a bit draining. It's understandable that you would get moments of being down but I have no doubt you will deal with this with your usual strength and dignity.

I'm sorry too that your kids are disappointing you. I think sometimes no matter how old some kids get, they sometimes forget that parents are people too and that thoughtful , loving gestures should go both ways!!!

As soon as I joined this board I figured out that you were someone that an awful lot of people have a great fondness for. It's easy to see why. I just hope when you are feeling down all the caring from here helps.

Jim - Glad you got yourself cheered up. I knew you could do it! Been thinking a lot about everything said here re our children. I think that sometimes when we feel neglected or maybe just ignored, it may not be the intention of those we love to send such a message to us. The message we receive is not always the message sent. We all have our own concerns, obligations, joys and stresses and depending on how these are affecting us at the moment, our "messages" will be impacted as well. Just know that you do have a family here that cares about you and wishing you success in your upcoming surgery. Hang in there, baby!

Jim,

it makes me sad reading your post because i'm still young (35yrs) and before i was hospitalised with oral cancer i didnt realise how lonely the some older people were. Guess i was like your kids - busy raising my own family and used to being looked after by my parents rather than the other way around. While i was in hospital, i saw how lonely the older patients were and how their kids did not visit them. It broke my heart but if i did not see it then i prob would not even think about it. I said to myself there and then that when i'm out of hospital i would spend more time with my parents and help then out more. Your kids, like me probably does not realise how hurt and sad you are - maybe you can express your disappointment to them? Its not that they dont care or love you, they just got caught up with their own life and just need to be reminded that you need them too.

I'm not very good with my words so i hope i have not offended you with my post. I'm only newish on here and take great comfort from your posts and many others. I feel selfish sometimes that i'm only taking comfort rather than providing comfort. My thoughts are with you during low times - something which we all go through.

Minh

Naw Minh, you words are fine with a lot of truth in them. My kids find time to run all over the Valley including Pittsburgh a couple of times a week. LOL I guess about 5 miles is too far. I think I get more fed up with the things I am finding harder to do. Thinkin I needed my family in OCF to cheer me up as they have done for the past 3 1/2 yrs. Thanks all. You all are the best from the get around June 2007.

No, Jim. YOU ARE THE BEST. Sleep tight, nite, nite.
(((((((((Jim))))))))))))

Just how do you know I am the best (((((((((((Julie))))))))))))))) LOL even if it's the truth. J/K Drinking my V8 Juice.

We ALL know you are "the best." Just ask anyone on the Forum
julieann

Hi Jim,just wanted to chime in cuz this post touched my heart. I have been feeling the same way. I have been having a few other medical issues so that is not helping my state of mind, but oh my gosh, some days I don't move off the sofa.....I need to give myself a good hard kick in the butt. Since this last surgery done in April and then again in July by the da vinci robot I just have lost some steam.......But then I think about all that I would be missing if I were not here, and I am grateful. My kids, still both in college turn 24 this month, and it is a joy watching them grow into adults, so I keep plugging along and smile (as best I can). I have wonderful doctors that take great care of me and good health insurance. Gotta keep on keeping on, but I totally understand. And Christine, you are amazing, woman!