Today is proving to be a little 'difficult' so please forgive my ramblings. Joe and I returned from hospital on Wednesday and are expecting the results of his PET scan today. His laparoscopy was promising, no visible signs of the cancer spreading, but I have a real sense of unease today and im not sure how to deal with it.
Hospital was not what I expected and our keyworker let us down. I had arranged to meet her on Monday to talk and visit ITU to meet the nursing staff and discuss the level of nursing care I would be allowed to participate in, she didnt turn up. On tuesday I asked to see her and was asked what I wanted ?? What I want is for someone to guide us through this and give us the right information at the right time, and, if its not asking too much, I would like to feel that those caring for my son appreciate how precious he is. No one has sat next to Joe, touched his hand or offered any emotional support throughout this nightmare. What is wrong with them, he is just a scared boy and he needs to know that they care - I need to know that they care. Our keyworker looked blankly at me and said she would bleep Macmillan - they were a no show.
Joe became hypovolaemic following surgery, was allergic to his dressings and developed blisters, has a chest infection and now has tonsillitus. This is relentless, it is so incredibly painful to watch the most precious person in my world become so poorly and its going to get much much worse before it gets better, if it gets better. All my common sense and nurse training has gone completely out of the window and im panicking about minor things - our out of hours Drs are probably sick of me. How do people do this, how do you cope with the fear and the heartbreak without falling to pieces. Im so tired of waking up with this nightmare still continuing and just pray for a minute of peace when cancer is not all I can think about.
I dont really know what concerns me most - my loss of faith in the medical profession the people I have to trust, or a loss of faith in my own ability to be strong for my boy no matter how hard this gets.
Zoex
