Hopefully!
This week has been really nice. Shane has been able to have a pass out each day. It has made life much easier to come home after work, eat dinner, then heartbreakingly take him back to hospital each night. It has also been a great gauge of how Shane is coping being self sufficient, and so far so good.
Since starting his gancyclovir, we have seen a wonderful improvement. His energy is improving, he's able to keep food down (thanks to his anti-nausea medications), he is eating and drinking more, and starting to become more active. The last two nights he has dried the dishes for me. Yesterday afternoon we went for a walk along the waterfront. We walked 800m in about 16min with a rest break halfway. Shane was really puffing by the end of it.
Now that Shane is no longer on IV fluids, we are starting to get an idea of his real conditioning. He has has lost approx 6kgs and he's struggling to keep his pants up! Each time he's unwell, I buy him new pants to fit him but he grows out of them pretty quickly! Then we have to find these small pants again! I have refused to buy more this time - "just eat more honey!" or find old pants that fit! He has also lost a lot of muscle tone and is looking very skinny around the face, but we have seen him worse off.
Tomorrow he has his PICC line put into his arm, and he's dose of steroids will be tapered down. Can you believe he's been on this dose of steroids for two weeks already. The plan is to gradually reduce his steroids each week until he's no longer on them, then gradually reduce his immunosuppresant over the next nine months or so. Eventually he will no longer require them depending on GVHD symptoms. Ultimately we don't want the immune system suppressed forever as this will reduce its ability to detect cancer cells. Speaking of which, these are the Leukaemic cells:
Mmmm, one more sleep xx
No comments:
Post a Comment