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