Sometimes I can kid myself that we are still living normal lives.
Then I get another punch to my gut.
Yesterday the palliative care unit at the hospital called to arrange Mathew’s first visit with the pain and symptom management specialist on Monday. The palliative care doctor likes to visit in the home so she is coming here to open his file and start the paperwork.
It is important to have this underway before Mathew gets sick or exhibits worsening pain so action can be taken immediately. We also have to go over end life instructions, like the DNR order.
DNR is short for Do Not Resuscitate, in the event that Mathew’s heart stops. Apparently without him instructing the hospital on his final wishes any family member can force the hospital to take extreme resuscitate measures… something to do with the hospital being concerned about lawsuits. Can you imagine? I hope every single family member reads this because the instructions will be there and will be very clear.
I have to be clear about this right now. Mathew and then John and I have the only say in how the end comes. If anyone even thinks about stepping in to challenge any of the decisions there will be hell to pay and I will make your life miserable. I’m just saying. I cannot imagine any member of the family, after watching the effects of this cancer on Mathew, wanting to prolong his life if this cancer takes over his body and causes it to shut down.
So this along with the first “after treatment” appointment with the Oncologist coming up shortly, is a stark reminder that the clock is ticking. It hits me and cracks the veneer that I carry out daily life with. I get a glimpse of our future and fall apart.
I realize that it has been a month, if we are seeing Dr. Burnell again. A precious month has gone by…one month already, how can it be? I want time to stand still! I don’t want another day to go by!
One day something will happen and my façade is going to shatter. I will not be able to function after that. I already know I won’t be able to work or do anything but pull myself together enough to see Mathew through his darkest days.
In the meantime I hang on to every precious moment we have. I enjoy ever banal moment, whether it be watching that wretched wrestling yet again, or listening to his extensive repertoire of music. I want to hear every word he says and I want to remember all of it. I want, after grieving if at all possible, to be thankful for the gift of having Mathew as my son and for having this time together.