I arrived home last Wednesday, with a bag of medications.
Rather than do a daily blog, which felt appropriate in the hospital, I will update this weekly.
Week 1
It was good to be home, in my own bed at night, and not repeatedly disturbed. Nevertheless there was a nervousness about not having the support network on the ward around me. For five weeks there had been a constant flow of people into and out of my ward, and now just my wife nudging me to take my medication.
I had lost about 4Kg in hospital, and definitely a lot of muscle mass. I could walk around easily enough and even get up and down stairs. My hemoglobin levels hovered in the high 80’s, which is where they had been before the SCT but I had then been transfusion dependent; the levels should creep up slowly over the coming weeks.
Each day I have managed a short walk outside, slowly increasing the distance. Walk is an exaggeration – more like a ponderous plod.
For the first few days I was sleeping a couple of hours in the afternoon. Tiredness comes on quickly, and sometimes I would just doze off in a chair. I fade early in the evening – no late night TV for me for a while. I’m getting 10 to 12 hours sleep a day.
I have some swelling round the ankles. The cocktail of drugs, and recovery from the liver condition are causing that. It seems to be easing, but finding shoes to walk in is a challenge.
We need to be very careful about infection while my immune system is suppressed. Fortunately we are heading into summer. We are limiting visitors, and certainly asking people not to visit if they have an infection.
The challenge, as my energy returns, will be finding things to do.