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Last April I posted a thread with this title about my bile duct cancer. In case I get flummoxed by the big change occurring here 2morrow, I will post this now. My cancer saga is entering the yard limits, after 9 days in hosp with a bad bacterial infection that was knocked back by huge doses of IV anti-biotics. Am very weak and weary, tho improving from day to day. Many side effects to meds, etc. I am also enrolled in Hospice now. My big goals now are to hit birthday 70 on 3-10, to see another Spring come forth, and to see as many kin and friends as poss. Have very little mobility presently, but hope it improves enuf to get trackside agin at some point. All of you take care of yourselves. Jim
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Jim:

I've never met you, but since you first posted on your illness last year, I have come to admire the manner in which you have dealt with it. You have exhibited poise, patience and good humor no matter how badly you were feeling and, from my perspective, have served as an inspiration to all of us who have read your posts.

I agree with Ed that we do expect to continue seeing your posts on the new Forum. May God bless and continue giving you the strength to wage your fight.

Curt

Jim, sure hope you make it over to the new forum.  I had a little trouble, not with the forum but getting my old computer up to date.  Fortunately my computer savy son took care of it.  Like others have said, you are an inspiration to us.  I have a sister going through the same phase of life as you and she is amazing too with her attitude.  Looking forward to your first post on here.  All the best to you.

 

Ray

Hello again, all.  Here is an update:

 

I am doing much better than I was when I posted last.  More mobility and appetite, but still have swollen feet and gastro probs.  Vital signs continue to be excellent, but skin and urine still dis-colored.  I have driven a couple of times, too.

 

However, I did learn something yesterday that is a bit unnerving.  Hospice nurse, an affable young fellow, was here.  I aked him about predicting poss. life expectancy.  He said that in order to qualify for Hospice, the doc has to document that the patient most likely has 6 mos or less remaining.  I had not  heard that before.  I wasn't angry at the number, but at not having had this explained up front.  Having this info now will help me to better plan the rest of my journey.  And, of course, this number ain't writ in stone; could go either way.

 

I am working on a revised "bucket list," and trying to get all the remaining ducks lined up.  I take much comfort from the support of all of you good folks.  Thank you!!

Jim, I've much enjoyed your company here and your postings as well. You are in my thoughts and prayers as I know other of your friends here also do.

 

Yes, plan ahead but also keep in touch with what you enjoy. That certainly helps in maintaining a positive outlook. Being positive, while definitely a challenge, is important during this struggle. It greatly helps one feel better as well.

 

I know about hospice care and that '6 month rule' from when I managed an agency for elderly services and home health care before I retired in 2002. It's a suprise to me that you had not been advised of that.

 

However, while your doctor had to certify that in order to get Medicare to cover

certain program costs (so far as it does), know there are a number of people helped by hospice who have also lived beyond that limit.

 

Predicting the future is never easy or accurate. Probably best that way. 500 years ago, Martin Luther once said even if he knew the world might end for him tomorrow, he'd still go out and plant a tree today.   

 

Ed B

 

 

Yer so right, Lee.  Often, I think the medicos are so immersed in their professions, that they ASSUME the patient understands rule abc simply 'cause the medico lives in that narrow world.  Daughter, Maggie, pointed out maybe the doc understood how badly I wanted to go home, and used the 6 mo. rule to get me out.  A whole lot cooks behind the scene that we seldom are aware of.  Ed, I agree with you 'bout staying positive.  One small example:  At Christmas, I had give first-born, Jennifer, my 1st Christmas train, a 1950 Lionel with the dreadful 6110 steamer, and told her of that loco's foibles.  'Sho nuff, the little engine couldn't.  So...I put together a Marx set with the big sheet metal 994, cleaned it good, oiled it, etc.  Put it on the layout for her y'day, and it ran like a champ, even throttling down to a smooth crawl.  It is numbered/lettered NKP 727, and has lotsa extra details.  She loves it!  Made my day.  I have a few other similar projects in the oven, so I ain't sittin' round moltin.

 

Agin, huge thanks to U all for your encouragement.  Pax Domini, Jim.

Last edited by Rich Melvin

Jim do not lision to the Dr's and believe ever thing that they say.  my uncle John was told he only had 2 weeks to live.  they were right about the 2 but he lived 20 years not 2 weeks.  he has Lung cancer.  and he did not die from that he was in his late 80's and he just lost his interest in everything.  as my great grandpa always said if you are hunger you are fine  so keep eating and have some wine it will make you feel better.  

I have bladder cancer that was discovered just before Christmas of last year , blood all over the place in the urine and I have been flushed with tuberculosis bacteria weekly and I know the feeling like having a major flu. I was given a 50% chance after surgery and  a golf ball sized tumor was removed ( cut up internally) and a couple of days ago I found it was in remission. Don't take down the markers, one thing that helped was my attitude of not writing my own obituary prematurely..and I told my family not to do the same. Its hard to be positive but I used what they call creative visualizing..keeping strong images in mind it will be killed off. My best wishes are with you for turning this around. I go back in next week to start treatment again. You tell someone you have cancer and they take a step back from me like I am doomed or it will rub off on them. I tell them I am not dead yet!

I really empathize, I went to a walk in clinic twice and they told me it was a bladder infection before I became my own best advocate. If I had taken the word of the walk in clinic, I would be dead.  Don't just get one DR opinion. Be your own advocate and don't take no for an answer.

Last edited by electroliner
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