So here’s my latest update. I was at Guys today for round 6 of ECP. Due to the problems with my line, my wonderful nurses had arranged for me to see a specialist line care practitioner. They were meant to arrive at 12.30 but turned up nearer 2pm. Sigh. She was nice, even though she didn’t apologise for keeping me waiting. She could only get one lumen working so the plan was to use that one and then put in the medical equivalent of Mr Muscle in my line overnight to see if it works tomorrow. I also have to have another chest X-ray in the morning. If that doesn’t work they are going to ask for permission to get this specialist drug to put in the line that is currently not available in the Trust. If that doesn’t work they have ordered another line where the tubing is not collapsible. At least there is a plan to follow. Let’s hope the Mr Muscle works and we don’t have to escalate it to any of the other levels.
As you can see from the picture, my skin is really sensitive. I had a gentle scratch of my back, and I do mean gentle and this was the result! Oh my days. Maybe I’ll get a messages etched on it.
Tomorrow as well as being day 2 of ECP, is also a dreaded bone marrow biopsy. I have to go to Kings for 10.30 to have the biopsy and then get over to Guys for x-ray and ECP at 12.30. Every MDS or blood cancer patient will tell you they hate bone marrow biopsies. They are a necessary evil. This is my one year check up to see how my cells or rather Gail’s cells are doing. Keep everything crossed for me.
Whatever you are doing tomorrow I hope it’s more fun than I’m going to have. I will do my best to keep smiling though because it makes people wonder what you’ve been up to.