So I'm realizing that if I don't post anything for a while I start to get a lot of "what's up" emails. Thanks for caring so much friends and family and apologies for being incommunicado!
The last several weeks have been a little rough frankly. I picked up a virus from the kids which knocked me pretty badly. At one point fever took my temp above the magic 38 degrees but I ignored doctors orders and stayed away from ER after my last bad ER experience. Luckily the fever passed by itself. Then the hand / foot syndrome got worse, but to a whole new level. I could barely walk on my feet or open a bottle with my hands.
Bright spot was our holiday at Hyams Beach, we splashed out a little on an amazing house right on the beach (because I can't get very far from the house at the moment).
Had a another tricky chemo infusion a couple of days ago after getting back from our Hyams Beach Holiday. Took four attempts for them to find a vein they could use. Luckily I managed not to pass out this time.
I guess the big development was meeting with my colon surgeon yesterday - Prof John Cartmill. Generally Madé and I found the meeting to be a major downer. I think we'd not grasped the enormity of the surgery. We discussed long term implications - I'm still too scared to Google "Anterior Resection Syndrome" - and all the variables still at play (for example the real possibility that cancer has leached further into my tissue beyond the bowel), which for me served as a reality check on my odds of surviving this thing and reminded me to stay focussed on my Track 2 preparations.
Anyway, key tactical developments:
- CT scan scheduled for Monday 24th to check for growth / shrinkage of tumors after chemo and radiation (very scared about this)
- Surgery planning procedure under general anesthetic booked for November 9th (happens to be Madés birthday and day after dad's birthday which is really shit)
- Big surgery pencilled in for November 23rd but subject to change based on information gathered from scan, planning procedure etc.
Meeting the liver surgeon next week because they are still deciding whether they operate on both my liver and colon in one marathon surgery, or do them separately. I hoping for the all-in-one option to get it all done in one surgery.
I should also warn folks that I've agreed to lend my story to media for the upcoming vote on the Assisted Dying legislation in New South Wales. This absolutely doesn't mean I'm giving up and I'm already planning my death. I just believe very strongly in what this legislation will mean for thousands of people who find themselves in horrific end of life situations and if I can lend my voice to that cause, for what's in worth, I think I should do it. FYI the Victorian legislation passed the 1st vote last night - 47 votes to 39. Fingers crossed for NSW in November but given our very Conservative government it's likely to be a much closer vote.