Ticking along post 1st line treatment

It’s that time again. I’m starting to get the “how are you going” emails because I’ve been a little too silent and a few folks are wondering about my ‘status’. So I think an update is needed :)

Truth is, I just have nothing compelling to talk about right now. I’ve been back at work for a couple of months now. It was suggested that I do a slow ramp up over several months but I’ve gone back full-time and so far, so good. Besides some bad fatigue, embarrassing short term memory loss, and even more embarrassing sounds from my now surgically altered digestive system, it’s all been ok.

I still haven’t figured out how to handle the mental juggle of being NED at Stage 4, but I’m resigning myself to the likelihood that I probably never will. I find myself starting to think about the future - long term goals, maybe another stint working overseas in years to come, maybe starting a business - and then my rational brain tells me to stop planning too far ahead because everything is still so uncertain. I feel myself being jealous in conversations where others are talking freely about the distant future.

It’s really a very difficult juggle. On the one hand I have to assume the best - that I’ll be in the lucky minority to live 5 or more years beyond diagnosis - and therefore I should be thinking about the future and living as though I’ll be around for a while. On the hand I’m constantly encouraged to be pragmatic, to not assume the best, to stay on top of the latest research trials, treatment options, palliative care options, and essentially ‘ready myself’ for the worst. That juggle affects every aspect of life. Should I be ambitious at work, or ease up and enjoy life more? Should I make long term life plans and make short term sacrifices to achieve those long term goals, or just live in the moment ? It’s really quite tough to wrap your head around it.

I’ve also got to get better with how I communicate with others. I’ve discovered that jokes about cancer and my imminent death can make some people very uncomfortable. Need to stop doing that. I also have a really bad habit of talking to someone about the future - maybe a 3 to 5 year set of initiatives at work - and then feeling the need to acknowledge that the odds are that I personally will probably not be around for the end of that project. I even do it with my wife. I know it must seem like I’m super negative, but it’s more like an automatic reaction because I feel like the person I’m talking to might think I’m being presumptive, given my diagnosis, talking about something 5 years out, and I feel like I need to assure them that I’m actually very realistic. I also still find it really hard to deal with the, “oh my god, congratulations, you’re cured” conversation openers. Do I just smile and nod and feel like a lier, or do I correct them, explain the situation in detail, give them my likely odds, and come across as unnecessarily fatalistic or overly dramatic.

Outside of work the urban farm project is coming along very well, due almost entirely to my amazing dad. Our chickens arrived a couple of weeks ago and we are probably 2 months away from fully completing the cottage renovation. I’ll share before and after pics then because I think that’s the only way of appreciating how much we’ve done to the place.

I’ve also been talking to the lobby groups working on bringing assisted dying legislation for terminally ill people to Australia. I’m still so angry that my state, New South Wales, failed to pass the legislation last year despite overwhelming public support. I’m trying to figure out how I can best help but I feel the possibility of another private members Bill succeeding next year is low, unless there is a major circuit breaker.

Anyway, I’m rambling now. Keep well all !