I'm completing my seventh year out from stage 4 squish cell, & have found my entire homeostatic balance is only now emerging as stable in every sense of the notion. Not having been informed as to the likely outcome, even during post-surgical follow discussions, had deliberately misinformed us as to realistic consequences, was never suggested. Having reflected upon the outstanding quality of medical treatment, it�s become apparent my actual survival was not seriously considered as occurring. The only feasible explanation for being told returning to work in 5 to 6 months, all the while being fully aware my profession was predicated upon my having easily understood speech, when actually any speech clarity would never be feasible. Charging into recovery, unaware that every again eating meals, speaking clearly & naturally, the struggle with cancer related fatigue, the wholesale clasp of my financial infrastructure & social network, profound marital stress, all the while investing my deepest efforts into managing my survive of cancer, has left me a quite different person.

Thankfully my genetic endowments of a resilient mind-set, & what of surgeon described me as possessing �usual constitutional fortitude,� once again came through for me as if fact, through all the horrific hellacious years, this �quite different person� is a better version of my being-ness.

I have been moved & amazed by the stories read of others life circumstances, for which my past years in recover pales in comparison.

Welcome to OCF! Its always great having another survivor join our ranks.

Christine,

I'm just being to grasp how the posting process operates and that you for your patience. After following through with, many of my questions have been addressed. All in all, even being stranded socially as semi-mute, living permanently by g-tube, and coping with other related struggles, my situation could have been much worst an outcome.

I take it your white colored ? marks on a black diamond, refers to a term with uncertain meaning, an error more easily understood in looking back on there use. The unusual constitutional fortitude being a genetic endowment, was my way of explaining a genetic gift inherited from family characteristics, that has provided me in life a seemingly endless supply of positive energy to tackle a vexing problem, than end up feeling in some way I'm better off.

Since that first posting, the cause of 10 emergency hospitalizations, fully coded to the ER, directly into ICU for aspiration phenomena, 2 to 4 days in coma, weeks to recover. Out of 12 such incidences, during the past 3 yrs, 10 had been avoidable. I know now to avoid any for of oral food ingestion, something never made clear before and instead, being instructed to move toward regular eating before the g-tube removal. After doing some study on my own on subglottic mechanisms and the 14 other functions influenced by H&N physiology, any such effort is understood as high right, life threatening behavior on my part.

Since then, my basic health has increased and I was given a grant for acquiring a Dynavox Tobii T-10 speech synthesizer. Though difficult to use effectively, slowly its operation is being learned. When it can be used to talk by pone, this device will make life easier, or so its hoped.

I'm still not sure if being alive is such a good thing and am waiting to see what emerges in my life to see if this standard of living is worth a damn. Being socially isolated with virtually no social connection are challenging circumstances too face off with.

Thanks for your response
John

Hello John, It sounds like you have been through a lot this past year .
Having that positive mind set is so important in surviving well. Yes, it is difficult when you can both no longer eat or talk with others. I agree that it is so socially isolating. I find that most people just can't be bothered to try and communicate, perhaps they find it too hard. My Husband Kris is ,like you ,socially isolated due to having no tongue and no voice box. He is fortunate in that he has always enjoyed his own company. If it wasn't for me , our children and 2 close friends he wouldn't see anyone. It is now over 4 years since his salvage surgery though and Kris is surviving well. He is healthy, happy and has adapted well to his limitations. So much so, that I don't think he perceives himself as having limitations, or being disabled in any way. I think the trick is to find something that keeps you busy and occupied. Kris does online MOOC courses/papers with assignments which he really enjoys. Otherwise he maintains our 3 acre home and garden and of course I drag him out for walks, movies, coffees , international travel and such like. I want you to know that life does get better. The first year or so was very difficult for both of us. Now, life is great. Different, but still good
I wish you well,
Tammy

John, Ive sent you a private message (PM). Take some time to click on the link Ive sent you to review tips on the most common forum newbie questions. Click on the tiny flashing envelope next to the My Stuff tab near the top center of the page. Hopefully this will help to make posting much easier.