When I left hospital on Friday I mentioned an issue that caused stress, and that same problem has me back in Charing Cross hospital today. Staying the night and potentially tomorrow.
I must repeat two things:
1. All care I have received has been excellent.
2. Hopefully a future bladder cancer patient can benefit from my blog, so I must also highlight any issues.
On my discharge day on Friday I mentioned that I came home without sodium bicarbonate, and that wife came back to get it on Saturday.
The problem here was the nurse who had demonstrated the clean when I said I understood what to do, said he would come back before I left and would watch me do it to be 100% sure.
As I had not seen him in a few hours I asked where he was and was told he had gone home. In my keenness to get home I didn’t mention he had said he wanted to watch me do my own clean and thinking if it were that important he would have handed that task to a colleague.
After a 10 hour operation 4 days previous, no food to speak of, no sleep to speak of, my concentration powers for his clean demo were probably not up to scratch. So I probably got it wrong, but in my head I thought knew what I was doing.
That is how I went home without fluid (as he was arranging that) and without truly understanding my job.
Everyday at home I felt better in myself, with appetite returning, but nighttime’s were bad as again I didn’t really sleep and was always worrying about my bags.
Also every day I am keeping a diary of my bag outputs. They had been pretty erratic and yesterday when my urology nurse called to ask how it was going, I gave her the numbers and think alarm bells rang but as we had a face to face on Thursday for bloods and CT scan ,it would wait til then. Especially as I didn’t give her the impression I was worrried.
Last night at 3am I woke up and checked both night bag levels.
Drainage had 1600ml, urine 0ml.
Houston we have a problem.
I type this back in Charing Cross hospital where I am staying tonight and maybe tomorrow to be monitored.
Earlier today my surgeon and urology nurse did a proper clean (flush) and a lot of mucus was drained. I was not doing it properly and mucus just stored until urine needed to find a way out and took the path of least resistance and loosened a Neo bladder stitch forcing all urine to go via my wound drain. Not great.
Good news is that no permanent harm has been caused, and I will just have the catheter in longer. Maybe end of July.
I just demonstrated how I now flush to the ward sister and she is happy, and I will demonstrate to my urology nurse and surgeon in their morning rounds.
Assuming now back on track hopefully home tomorrow. Rest assured I will not be pushing for release until everyone including me is happy.
Oh, I had two more covid tests today. Nice. That’s 5 so far with the latest on a fast track so they could admit me to a ward.
All have been negative.
