The unknown is probably what is the most stressful part of this journey. You are left in the dark not knowing what the next steps are, what the plan is or if anyone is actually doing anything in the background. I am very fortunate that I know the healthcare system and know people that are advocating for me. It is something that I am not very good at. Mostly because I do not believe that the system is as broken as those who operate within it daily know. Melanie is always pushing for me to advocate for myself and when I do not. Or more realisticly when I do not do it fast enough for her liking she does it herself. I am in a situation where I have people by my side and in the background taking care of me.
I have a group chat with my former colleagues from Vale in WhatsApp. I informed them today of my new situation and the first thing that they told me to do was I needed to add Mel to the group chat to keep them updated. Obviously I had to rename the group to reflect the new true nature of the group. Tattletaling to Mel when I am not doing the right thing. Everyone has my best interests in their minds so I do not fault them.. Last time there were multiple instances where they sent a message to Mel telling her to check up on me.
What is missing now is the patient navigator role that use to exist. It helped people navigate through this. Healthcare is a complex system that does not always flow smoothly. Even with people advocating for me in the background there is some beaurocracy that needs to be navigated and there is the potential that CCO evaluates my case as not requiring urgency for a PET. That other things may be sufficient. If that happens then the next option is non-funded PET scan where I pay out of pocket. We are in a situation where this is not an issue at all. In my first round, there was a drug that was going to cost $5000 per dosage. When it is life or possible death. There is no amount that is too much. Luckily we did not have to pay. But this is additional stress and anxiety in an already tough situation.
I was reading some material today and a serious illness of either yourself or someone close to you really changes the way you look at things. Things that you use to take for granted come sharply into focus. You separate what is important in your life and what is background noise. What I am thankful for now is my prioritizing relationships and engaging with people throughout my life. In conversations this week, friends asked if I had considered doing videos of all of this so that the kids would be able to see some of it. I am not sure if I could. I do not proof read my writing and sometimes afterwards I find errors or mistakes. My dear sister likes to point out when I make mistakes. Just like a good younger sister. The biggest reason why I do not is because I do not know what my emotional state would be like. I can write this being a bit detached. The first post was tough to write and I imagine it would have been even tougher doing a video.
Right now I am waiting for clarity of the unknown. In the meantime I will visualize my body destroying the cancer cells that currently exist.