I haven't posted in well over a week. The reason being I've been just too fatigued to do almost anything.
Sarah and I picked up some sort of respiratory infection over a week ago and It's knocked me back to the point that I'm about as weak as I can get and still move around the house (all be it tethered to the oxygen tube). On top of that I've been battling with low blood counts and bleeding.
Today I'm starting to feel a little better but it's not a huge improvement.
My breathing has been so bad I can hardly sleep at night for the discomfort and I have to sleep sitting upright with three pillows. At the beginning it was so bad that when I breathed out the air would keep flowing for up a second or so after I'd stopped exhaling. It's a bit better now but I still make whistling and crackling noises when I breath and it gets worse if I try sleeping on my side.
After the drama of the thirty two hour nose bleed from a few weeks back things only got worse as far as uncontrolled bleeds were concerned. I developed an internal bleed into my stomach somewhere and that was really scary as there was no way of knowing how bad it was.
After thinking long and hard about my current transfusion situation and what my counts have been (1-2) I suggested to the doctor that I would need at least two units of platelets every time I came into the day ward in order to keep the count above 5 or so. I've never had any bleeding episodes previously. They didn't start until my counts got down around the 1-2 figure of recent weeks. The problem being that we weren't putting enough in to cover the distance until the next appointment which could be 3-4 days away. So I'd be fine for only about half the time and at risk the rest, it just didn't make any sense having only half the protection. It just made the window for uncontrolled bleeding a bit smaller. It didn't fix the problem.
So now I decide how many units I will need based on the FBC (full blood count) taken when I arrive in the morning and we plan from there. So far so good.
I had my second cycle of Gemcitabine yesterday, again so far so good. It's hard to say at this early stage in the course of things whether it's working or not. Dr D'Souza isn't expecting my bone marrow to rally until after this cycle finishes in twenty days or so. The crazy itch has completely gone so I'm grateful for that. Would be good if I could get these lungs to start working so I can exercise and get around without this oxygen tube trailing behind me. Guess that will come with time.
..Ron
