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Barbara P
Regular Member

Date Joined Feb 2006
Total Posts : 256
   Posted 6/24/2006 11:42 AM (GMT -6)   
Hi Friends
I've recently started journaling my dreams. This morning I had three continueous dreams all about losing control and there being nobody there for me. Even when my husband was besides me in the car, it was as though he wasn't there and even when I screamed in fear, he didn't help. I even wondered if he were already dead.
It's not the dreams I'm posting about but the realization that in times of life threatening issues, we need the support and understanding of familly, friends, health professionals and yes, even our loved one dealilng with the battle of their lives.
I've also been OCD and have learned to survive in a chaotic world with Gene's untreatable esophageal cancer, end stage liver disease and recent diabetes. We can't make defenite plans since from moment to moment Gene's condition can change. But mostly it's because we're always waiting to hear when hospice workers will be coming by. They seem to have a problem setting up a day and tentitive time for their visits so that we can work our life around his medical and support needs. The few friends who are still trying to help us with food preparation and errands also are unable to say which day or time they can be here. Their lives are busy and they don't want to make me upset by having to cancel. So instead they give me vague times, then forget to tell me they have decided on another day or don't come at all. I've said in every way possible that I need some stability in my life. A time when I don't have to wait for the phone to ring or someone to just drop by. I'm more comfortable knowing what to expect. and when.
I'm not sure what I'm getting at here but this it the best I can come up with. I'd sure appreciate the input of others on the forum.
With cancer and ESLD there is no way to know what to expect, when things will take a turn for the worse, what every new symptom means, how our loved ones will respond to medications or tx or how they will even be in the next five minutes. 
Gene was offered no hope. His cancer cannot be treated because of his liver failure and his liver cannot handle mets. so when the cancer spreads, he will be gone quickly. That is if the encephalopathy or a bleed doesn't take him first. Only the rotating antibiotics are allowing his liver to process out the toxins. There is no medical or earthly explanation as to why he didn't die a year and a half ago. But miraculously his liver stabilized and the cancer did not spread and his doctors are at a loss of words. But everything I've heard or read about EC is that it does not spontaneously go into remission and is one of the most aggressive forms of cancer. Without surgery, chemo and radiation patients die in months. Even with surgery the prognosis is not good. In case anyone is questioning the diagnosis, Gene had 2 biopsies that confirmed the EC and the fact it had invaded the deeper layers of the esophagus. The CAT Scan showed thickening in the neck around the esophagus. This was 28 months ago. And as everone here on the forum unfortunately knows, cirrhosis is a death sentence without a liver transplant and Gene is not a transplant candidate.
I'm grateful and blessed my beloved Gene is still by my side. He's continued having one problem after another with his liver and now with the diabetes, I'm over the edge of the cliff. I'd appreciate anyones thoughts on this. HELP I'M FALLING AND I CAN'T GET UP!
                     LIVE IN THE MOMENT!
                          Hugs and Prayers

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 6/24/2006 11:43 PM (GMT -6)   

I'm so sorry you are feeling overwhelmed. Would it be possible for Hospice to commit to a chunk of time on a certain day to serve as respite...say Tues. from 11 to 2...so you can get out for a while and do things totally unrelated to Gene's disease? If not, is there anyone in the family or amongst friends who could do this?

I know that it's difficult for a condition to continue to go on for months and years. When I was first diagnosed with liver cancer, over a year ago, people were stopping by and calling, taking out my garbage and getting my mail, etc. However, in time, these same friends have slowly bowed out of my life, since it's evident that the treatments are working, and I will not be dropping dead tomorrow. I do have someone that comes twice a week to do my grocery shopping and cleaning. I pay for that out of my pocket. It's different, too, because I live alone.

What would you say Gene's state of health is right now?

I pray for your continued strength as a primary caregiver, and hope you can get the help that you need.


Regular Member

Date Joined Dec 2005
Total Posts : 446
   Posted 6/25/2006 2:37 AM (GMT -6)   
Barb, I feel so sorry that you are feeling as you do. I can only agree with Connie. Try to have some "Barb" time. I'll pray that you get over this personal crisis.


Regular Member

Date Joined Sep 2005
Total Posts : 29
   Posted 6/25/2006 7:59 AM (GMT -6)   


I am so sorry that you have to go through this. Savour every momement you have together, the rest will take care of itself. You and you family will be in my prayers.


Veteran Member

Date Joined Mar 2006
Total Posts : 605
   Posted 6/25/2006 10:40 PM (GMT -6)   
I sure do understand how ya feel,,,,,which is why i picked the member name I did for this forum,,ask for help,,,,,,even check with elderly united,they may be able to help with some volunteers to stay with Gene so ya can get out,or maybe just help with him so you can read a book,,,,,,:hugs:
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 

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