Extended Care for Esophagectomy Patients

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crystalbay
crystalbay Member Posts: 38
edited March 2014 in Esophageal Cancer #1
I wanted to write a title for this post that indicates something which does not exist unless you're up for a nursing home setting. I was a vivacious, dancing grandma until six months ago when EC was discovered. I've written in another post that my post-surgical path has been wrought with complications. In the 2.5 months since surgery, I've only been able to be home for the last two weeks. Half of these weeks were in the hospital; the other half in so-called extended care (nursing home).

For me there was no other choice - I wasn't critical enough for hospital care anymore, and I wasn't able to live alone. I lament the reality that there is no other option for baby boomers than to be put in such a depressing environment, surrounded by elderly who on average
are 15-25 years older. It was the nightmare preview of exactly where no one wants to end up, only two decades ahead of schedule. It smelled, the visuals were depressing, the care not at all geared to someone in my condition.

I feel that in inappropriateness of this setting put back my recovery at least a month. PT & OT were geared for elderly; medications were at times dangerously mis-judged; my feeding tube issues became grave; and they were feeding me only pureed foods when I should've been on solids. I grew sicker & sicker until, upon a follow-up visit to Mayo, my surgeon immdediately had me admitted to their hospital for a week.

There simply has to evolve a better alternative for otherwise robust late middle-agers!!!! This setting can only bring us down as well as risk our progress medically. I'm very interested in reading what others have experienced along this line. I'll add that I cannot afford round the clock assistance and my kids' lives are 18-hour days at this point. Home health nursing can only stop in for an hour every few days, so this isn't the answer either.

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  • crystalbay
    crystalbay Member Posts: 38
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    oh my.......
    Sherri - it never occurred to me to call the cancer society!! I didn't even know they could help. Really. My J tube was in a full month longer than the Mayo docs thought it should be. It's also represented something unhealthy to me: lack of good self-care & being incapable of doing this myself. I've been off it for about 2 weeks now and just in the last 3-4 days (after an ER stint for hydration), my situation seems to be stabilizing. It could be a matter of self-confidence that I just won't keep dropping weight. When this started, I was 135#; now I'm 115#. That took me from a size 4 to size 0. I really don't mind this weight, but if I lose 7 more pounds, they are telling me that the J tube will need to be used again. At this point, I truly do not want to be defeated as the J tube is not a permanent option. For me, hydration has been the biggest missing piece. No one stressed the importance of this before so as I was dehydrated (unbeknowns to me), I became weaker & more prone to nausea, therefore less able to even eat. I had no idea how inter-related fluids were to my ability to take in nutrition until a few days ago, when I suffered three days of alternating chills & sweats. I had no idea what was causing this suffering until I showed up at ER. There simply has to be more education about this because it's needless suffering on top of everything else we must endure!!

    Thank you for writing to me - I will definitely stay on this board:)

    Nancy

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