Day 70

Shane is making steady progress. He's still recovering from his most recent bout of GVHD of the skin. His skin is no longer painful, but he's shedding a layer like a snake, but unfortunately its not in one piece and not so easy to clean up!

Bloods are all normal (ish) and the doctors seem to be happy with his progress so far. Steroids are now down to 25mg (from 175 originally). He's getting closer to stopping them completely, but he's also suffering from considerable fatigue. When he first came out of hospital, he worked hard to avoid sleeping during the day, so he could sleep well at night. At the moment, Shane has at least two sleeps a day, as well as sleeping a lot at night. If he has a day where he's out, he needs a day to recover afterwards. He tries to assist around the house, but its hard work for him to do even the simplest things.

I have been encouraging him to get out for some walks. We even went for a bike ride last sunday. Shane gets so sore the next day, and we only go really short distances. Getting him reconditioned is going to be challenging to say the least!

As far as tastes go, he can taste everything now, but it doesn't taste the same. My other challenge at the moment is getting him to eat more of the good stuff, and less of the crap stuff. But its so damned hard to say no to those big brown eyes! "Whatever Shaney wants, Shaney gets" is my current mantra. So if he wants a packet of biscuits, he gets a packet of biscuits (especially if my mum is caring for him!).

Sorry these blog posts have been sparse of late. Honestly, I haven't really been in the right headspace for it, or had the time for that matter. While Shane is ok sometimes to help out, its inconsistent, and that leaves me to pick up the pieces. This is fine if Im prepared for it, but not so easy if its unexpected.

Psychologically, a set-back like GVHD can make coping with the whole scenario that much more difficult. Considering I am prepared for most situations where I know exactly what to do, GVHD left me high and dry. I felt powerless to help. There was no simple solution and Shane wasn't prepared to try anything. In these moments, accepting our situation is really difficult. Things like "I wish" and "if only this didn't happen" kept popping up. The moment you start thinking "why me" is when the world falls apart around you. You just have to get up, wipe off your knees and keep going. The recovery from the psychological wound can take a lot longer to heal than the physical one.

We are still really grateful for the assistance that those around us give. We are getting lots of practical help which makes life so much easier. We thank each and every one of you for the support you give us. Even the simplest things like your well wishes make the world of difference to us.

Peace.

xx