I will survive - Gloria Gaynor

Are my expectations too high? Maybe "my expectations" are how I try to gain control over this uncontrollable stage in my life? Each time I get treatment there is a communication break down. I call ahead and verify the plan. I do all that I can in my power to help facilitate/ advocate for myself. It is exhausting because something always is missed. So do I need to change my expectations and assume something will go wrong and be pleasantly surprised if it doesn't? When do you draw the line between being an advocate and control seeker?

Here are the facts: I finished chemo last night and was discharged from the hospital at 9pm. Up this morning getting myself and little C ready for our trip to the city for my final 2 hour infusion for cycle number 4. My appointment has always been at 9:30. I get dropped off and informed my appointment is at noon. No one told me, can you say, "losing it!".

So I explained my child care is limited for my 2 year old, I live far away and I was not given a schedule, even though I asked for one last Tuesday. I waited for about an hour while they figured out what to do with me. I know there were no nurses available, I wasn't on the 9:30 schedule.

The f'd up part is it's not like I can say, "screw you, I don't need to stay here and receive your life saving drug." Well I could, but I am not an idiot. So ultimately they dictate my time today.

So I started to cry. Sitting in the waiting room crying because I am tired of this and this issue pushed me over the edge. I just want to play with my little guy who keeps saying, "mama come home." I don't want to spend 5 more hours in cancer world. Crying got results. I was genuinely sad, not just trying to get in. Part of me thought I am sure they don't want crying patients in the waiting room. They finally found a place for me, all the others in the waiting room heard my story as the nurse escorted me to my room. I just wanted to let the staff know I really do have a life outside of cancer. I am sure they know but sometimes the system makes patients feel like shit and I had to do what I had to do.

I am so glad I have almost finished 4 treatments. Two more seems very close to the finish line. I can see a field of blooming flowers waiting for me to run through with all the energy I could want. I can seeing going on long walks with my family and not fearing exhaustion or pain. And the list goes on.

For now I am tired, frustrated and still wondering if my expectations are too high. I plan to share the facts with the nurse coordinators about the miscommunication. I also am going to try to let it go. I am a fan of blogging/processing my crap and feeling better already. Thanks for listening/reading.

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