If it strikes you through the course of reading this - that manifestations of this palliative world turn on a dime - from virtual days of glory to days that seem to take too long to end - then you would be right. Generally speaking mornings seems better than afternoons - but that doesn't always hold true. Sometimes I go back to that primordial instinct to shut everything and everyone out to curl into a ball, lick my wounds. And it is on some of the worst days that I seem to find it hardest to pick up the phone and ask what if anything can be done to make it better. My lovely home nurse Joan questioned me about that in the gentlest way yesterday - and I realize that sometimes in those moments my biggest challenge is knowing what to ask for - with all of the medications I already take, what cocktail or next step will truly mean comfort at any given moment when the ground shifts so frequently and sometimes so unexpectedly. Which symptom will rise its head - and knock me down. Navigating through little challenges like a prescription that can't be filled quickly enough because genuine shortages continue to exist in the supply chain - meaning a drug ordered by my doctor yesterday through the pharmacy designated for palliative care drugs delivered in the community, can't be filled until after 1 o'clock this afternoon - and some pharmacies can't even access it at all. (Note to Ministry of Health - this issue is not getting better and I had hoped when I first banged the pot internally about the implications of the Sandoz plant scaling back production of certain drugs on patient care over a year ago, the coordinating committee was set up to monitor this within health authorities on a daily basis and Health Canada vowed to find new production sources - this issue would be fully addressed - but on the ground even palliative patients like myself are still feeling the effects today. And sorry, but the behind the scenes battle with drugs chains and suppliers over generic prices has absolutely fuelled this unconscionable behaviour).
But on a personal level, all of this has made one thing perfectly clear - and that is as much as I have tried to put the fact I have a terminal illness on the back-burner for months now while all of the various activities in my life unfolded - the pretence must and has come to an end. I can't leap in and out of normal activities any more - because the reckoning after the fact, is simply too great and as painful as it is for me to be as selfish as I feel right now - I need to really work on better identifying when to call in the Calvary and when to retreat - when to wave the white flag and when to simply breathe through it. In short, I need to learn to ask for help - without necessarily being equipped with my own solution first.