Another day and the worst part of it is mercifully over after a wonderful visit from the Palliatve Care Response Team to address the daily aftermath from the surgical procedures Friday. Mercifully my mom was by my side squeezing my hand during the hardest part when the tears were flowing. I learned today there are only four cities in BC and Alberta that offer this kind of home based 24-7 service for palliative patients - relying largely on fundraising to keep it going. To think this God-send could fail to be maintained for patients like me terrifies me - as the frailer I get the prospect of having to leave the house or be lodged in a hospital bed at huge expense seems simply illogical and wrong. I am entirely dependent on the care and counselling they bring compassionately each day during these rougher times and the consistency of the experience and wisdom they bring - not to mention the risk of being exposed to further infection, were this option not be available where I live.
Part of today's discussion centered on the reality of where I now sit, nurse Jill telling me honestly she sees a frailer version of me than her previous visits. The context was the fact that I gave up the monthly lab work - which in the hospice world is considered largely unnecessary as the chances of it legitimately inducing any shift in the treatment plan are slim to none - the focus being on finding the right blend of medication to keep me as comfortable as possible as my body goes through its natural shutting down.
But several months after the latest lab work was done and noted, there is still a big part of me that craves those numbers - wants to know where they stand now even if it changes nothing. I realize beyond curiousity - it is about affirming what I feel physically and mentally to be true - and finding it reflected in that long list of numbers. But in other ways I acknowledge it is a fool's errand - that it won't answer the question that continues to hang over my head over just how close I am to the end and could cause more anxiety than comfort. That it is more about the life force battling with what is occurring naturally - and knowing in choosing to address these infections, for example, was a deliberate intervention/interruption in what would have inevitably expedited the move toward death. So this dichotomy was and is important to acknowdge where no other map exists of where this will go from here. I continue to learn and challenge my thinking as this journey goes along and develop an ever deeper love and appreciation for the love and kindness of my family who shower me with the richness of their presence.