The Health

Not much to report. Colitis has continued to be an issue with a few scans, tests, and infusions. As I write this, it is under control. I am still on 12mg of steroids a day and remain off immunotherapy. On the positive front, I had a successful check-up with my surgeon and have generally felt well.

One exciting thing for me is that after some research, I have changed the tube in my stomach to what’s called a Mic-Key ENFit tube. This means that instead of permanently having a 20cm tube sticking out of my stomach 24 hours a day, I now have a button that I connect a tube to only when I need to eat. It’s been a good investment ($500) and it means that I am not constantly accidently spilling my own stomach contents on myself and generally don’t need to manage this tube all the time.

The Personal

This blog started as a way of keeping people updated on my health, especially when I was struggling to talk. However, over time it has become a cathartic way to reflect and make sure I am making the most of the months as they pass by. This helps me stay focused on the good and less focused on the bad. I say this as a way of trying to excuse the self-indulgence list below and as an explanation as to why I choose to list mainly the good and not so much of the bad :-).

On the family front, this month we spent a night in the Barracks to see Jessica Mauboy, enjoyed a beautiful Sunday afternoon with friends in Newport, had a mid-week visit to see the excellent musical Hamilton, experienced a rather disappointing visit to Spring In The Streets at Barangaroo, had a great afternoon at the Crows Nest Festival, attended two great Sydney Kings games, and last but not least, participated in a school community Greek Night in Forestville.

We also did a family road trip to Mount Beauty. On the way there, we stayed two nights in Canberra and then spent a couple of nights on a farm with friends in Mount Beauty. Kirsten had to head off to Melbourne for work from there, so the girls and I spent a night in Albury and then had a very interesting morning at the Bonegilla Migrant Experience before spending a night in Goulburn and making our way back to Sydney.

On the weekly adventures front, I went to see The Duke Ellington Songbook at the Lounge in Chatswood. It started off slow but ended up being an awesome old-school jazz experience. In contrast, I also saw Nubya Garcia at the Oxford Street Art Gallery, which was an awesome new-school jazz experience.

I also went to the Museum of Modern Art (MOM) to see Up Late: Hiroshi Sugimoto, which included not only a viewing of the exhibition but also some Japanese culture in the beautiful bar at the top of the MOM building. For a change of pace, I saw the very funny comedian Romesh Ranganathan.

A massive thanks to Ursula, Gordes, Elise, Jamie, Graeme, Henry, and Steph who came along on some of these adventures with me.

This month for my 48-hour day away, I was very fortunate to spend it at Palm Beach where a friend was kind enough to let me stay at their beautiful house. I spent the day walking, reflecting, and just relaxing, which in the end is the whole point of doing it. I came back with some corrections and new goals.

Until next month.