Today I read a lovely blog that Andrew had reblogged. http://lymphomajourney.wordpress.com/2012/11/10/living-with-cancer-its-about-time-nytimes-com/
Several studies have suggested that when dealing with terminal illnesses, especially cancer, doctors are usually incorrect in their prognosis, nearly always tending to believe that their patients will live longer than they actually do.
In one study involving patients in Chicago hospice programs, doctors got the prognosis right only about 20 % of the time, and 63% of the time overestimated their patients’ survival.
Interestingly, the longer the duration of the doctor-patient relationship, the less accurate was the prognosis. “Disinterested doctors . . . may give more accurate prognoses,” the authors wrote, “perhaps because they have less personal investment in the outcome.” http://www.kevinmd.com/blog/2012/04/doctors-incorrect-prognosis-terminal-illness.html
Eight years ago we were told that Vic’s life was “compromised” and that she would die within the next 5 years. Eight years later Vic is still alive. Maybe Vic’s doctor is too close to Vic….
Eleven years ago Vic had blotched back surgery setting her off on a journey filled with pain, 81 abdominal surgeries, years in hospital and millions of rands worth of medical expenses.
Vic realized that her life had been compromised and started saying “If only I can see Jared go to school…” I remember her joy the first day Jared went to school. Then she said “If only I can live to see Jon-Daniel go to school…” I remember how desperately ill she was the day Jon-Daniels started school….
Now both her boys are in High School. I never hear Vic saying “I wish” anymore.
Tonight we discussed going to the coast for a week in January. Vic just shook her head sadly and said “It is too far Mommy. Even if I fly down I think it will be too much for me…”
It is all about time.
Time grinds to a halt when Vic needs her 4 hourly pain medication and there is an hour to go… when she screams from pain and her blood pressure is too low for more pain medication to be administered…
The longest nights are the nights before surgery and after surgery. The longest passage is the passage outside the operating theater and ICU.
Whilst I was in the UK Vic did well. She fired her nurse and administered her own injections into her legs! I have been home for six days and Vic is really ill. I expected her to have the “up-time” whilst I was gone. I knew that she would use every ounce of her residual strength to be “good” while I was gone. Vic bounced around and amazed everyone who came into contact with her. Cr Ceza, her Hospice sister, however spoke to her in the presence of Danie and Esther and told her that the ONLY reason she was feeling great was because her pain control was optimal. Her body would however betray her. She said that Vic’s body has started shutting down….slowly but surely. The process is inevitable… I believe that Hospice is wrong. They have to be wrong.
Tonight I am sitting here just wondering where time has gone.
The Blog I read today articulated my thoughts and emotions so accurately!
“In the immortal words of Dr. Seuss, “How did it get so late so soon?” Without much of a future, surely time will again change. A lot can happen in a year — think of the helpless infant becoming a walking, talking toddler in 9 or 10 months. Time moves more slowly for small children, since a year of a 2-year-old’s life is 50 percent of that life. A terminal diagnosis may also slow down time. The next year might be 100 percent of what’s left of my existence.”
Sometimes the time left seems too long; too many catastrophes could injure those I love. Sometimes it seems too short; there are so many suspenseful stories unfolding around me, and I want to see how they will turn out. Those for whom time’s chariot is indeed winged often attest to a heightened appreciation of their fast-fading prospects. And then there is always the dream of borrowed time, that numinous period beyond the predicted end, like a stay of execution, which must be fraught with its own blessings and curses. . http://lymphomajourney.wordpress.com/2012/11/10/living-with-cancer-its-about-time-nytimes-com/
We have already had so many “extra” years. But the fact remains that Vic is ill. Today she is more ill than yesterday or even last week or last month. It is not an UTI causing the pain and fever. Her pain control is good enough to mask symptoms. Waves of severe nausea and cramping remain…
I don’t even want to consider the possibility that the pain is caused by Vic’s organs slowly starting to shut down….. One organ after another…. I have read that it feels “uncomfortable”. It is called terminal agitation.
Only time will tell…. Time is all we have….
How did it get late so soon?
https://tersiaburger.com/2012/07/02/vic-regrets-not-going-to-italy/ https://tersiaburger.com/2012/07/20/thank-you-god-20-7-2012/ https://tersiaburger.com/2012/08/05/what-can-we-hope-for-when-there-is-no-hope/