You have likely heard me say, “I have good days and bad days but more good than bad.” Yesterday, Sunday, February 6th, 2022 would count amount the worst day since the start of my adventure with cancer. Let me share it with you so you are not blindsided when you inevitably arrive where I have. As a member of the palliative care crew, with cancer or another live-ending disease, this will be part of your future.
I must start by sharing my emotions are raw right now and at the core is the word “grief.” My disease is stealing my independence. There has been a dramatic change for the worse beginning on Sunday. As mentioned by Cindy (Palliative Care) yesterday, every palliative care patient is on their own journey and although sad, my is going downhill sooner than I hoped.
The worse part of what is happening right now is that I’m losing my independence and I know it is unlikely to return. Allow me to share what I mean.
- On Sunday morning, I fell in the bathroom and we needed to call 911 to have parameditics come, pick me up and check me out for injury. By the way, we are registered in a Green Sleeve program such that when we call 911 we let them know and EHS comes without a lot of fanfare. While lying on the floor waiting, it made so sad I couldn’t get up on my own.
- It would be too dangerous for Janet to lift me after a fall. She is my rock but I feel guilt that she has to do so much for me. Yet another lose of independence and one more source fo grief.
- I cannot walk any distance without severe loss of breath. And I can only do this if I have a walker to help me stay stable. More grief aorund this loss.
- I just got a wheel chair so to go anywhere will be total dependence on others. More grief.
- I have started wearing depends just in case just in case. Yet another loss of indepence and grief associated.
- I can’t safely get up to pee at night so I’ve started using a bottle in bed. And I need Janet’s help moving my legs so I can position to ensure all the pee goes in the bottle.
There is more but I’m sure you get the idea. I’m not prone to feel sorry for myself but I’m only human and right now I’m losing one aspect of independence after another. It is overwhelming.
I will get through this so no need to panic; this is beyond my control but it is my path into the future.
Thanks for being a support pillar as always. God continues to be present in my life every moment and I will be okay.
Lots of Love, Phil