Wednesday, June 10, 2020

NEW EXPECTATIONS

There was to have been a Part II of the last post. However that was then, this is now and every day is a new day. Back a month ago when I left hospice I had been encouraged to live with new expectations. When I was diagnosed with breast cancer almost eight years ago it never occurred to me that I would have to change my expectations many times.  Most of us who have been diagnosed with breast cancer do not expect to progress to metastatic or advanced breast cancer though I believe that the possibility never really disappears. So I was not totally unprepared with my second breast cancer diagnosis. What did surprise me though, was the rapid loss of the use of my right hand along with continuous and ever-increasing pain eased only by narcotics, opioids, and anaesthetics. Nerve blocks worked briefly but never fully ended the pain. I have heard neuropathic pain called "the beast" more than once.  However at each juncture I picked up and carried on. I am not saying that was easy for me for or my family and friends but it was how I had managed since the first diagnosis. 

Just for fun:https://www.iwpharmacy.com/blog/opiate-opioid-narcotic-whats-the-difference


Now that we know the difference between opiates, opioids and narcotics I can say that I have probably used most opiates, opioids and narcotics including marijuana but not heroin. I recall drinking tea made from opium poppies grown on the Saanich peninsula but do not remember any real effect. The above post does make me wonder whether smoking opium would help with my pain but it does seem unlikely that any opium dens remain here.

Back to reality, this latest "pain event" has changed the way I view life and death, at least for now. I came home saying that yes, I did want to live but I wavered between denial, anger, sadness and more with way too much thinking time. The new expectations revolve around a real lack of mobility, whether from the pain, the drugs or more likely, a combination of both. The pain could be nearly eliminated by more drugs but the cost of that would be a deterioration of balance and motor skills and possibly cognitive skills. Much of my time thus, is spent reclining~~ more pleasant a word than lying down. Just so you know, my pain pump now has a continuous flow of sufentanil~~pretty much the strongest opiate around and bupivicaine, an anesthetic used for epidurals. I am completely dependent on the flow and in addition I take methadone and oral ketamine. I use a ketamine nasal spray or pump boluses for breakthrough pain. Overall this is one huge whack of narcotics.

A good friend has often called me the energizer bunny and I told him today that this is no longer the case. It is true that I have always liked to be active but this has been taken from me and I have to get used to being sedentary. That word has a negative connotation so let us say physically inactive. At first I felt this to be the worst loss ever, thus the sadness et cetera. Only recently with the necessity of a counsellor's help, have I realized that it really "is what it is" and that I can work with that. Andy encourages me to be positive and I first I took that to mean maybe I could regain my mobility. Now I am thinking that maybe being positive can be living with a big disability but still in a meaningful way. I do not know how that will look but I do know that I am a little better.

Over the past weeks I stopped wanting to talk to anyone in part because I did not feel there was anything good to say. A friend sent an email asking me about one good thing from my day. It took me awhile to think of anything good but that email did force me to recognize the beauty that surrounds me and how much friends and family do care. I am now reaching out to ask for help, something that has been very difficult for me over my lifetime.

I want to close with the wish that we spend time learning and recognizing more about the hundreds of years of suffering black people have faced while the majority of we white people have not lifted a finger. Yes we may say that we have cared but just what have you and I done to change the situation? What it will be, I have no idea but I must find a small way to join in the movement of real and lasting change. May we all do the same. If I were American I would most certainly be voting and campaigning to remove Trump whose cruelty shows absolutely no sign of abating. He has zero empathy or care for anyone but himself. While so many us cringe at his daily pronouncements, it is also time to stand up to the bully and his gang who affect not only Americans but the world.



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