If you've spoken to me recently you will have already heard my spiel about 'dual tracking'. I'm not recommending this for anyone, but it's the mental model I'm choosing to adopt because I think it's going to work best for me. In our house, certainly between Madé and I, we've started to talk very openly about 'track 1' and 'track 2'.
So what are the dual tracks ? They are, broadly speaking (because in practice there is track 1.1, 1.2, 1.3...), the potential courses life may now take for our family.
Track 1 - This is the happy path. This is the path where treatment, whether it be 1st line, 2nd line or 3rd line, is successful and I get a NED ('No Evidence of Disease') diagnosis sometime early next year. Remember that, at least in the medium term, as a stage 4 cancer patient there is no scenario where I'll be deemed "cured", the best I can hope for is that treatment eradicates any evidence of cancer in my body.
Track 2 - This is the not so happy path. This is the path where treatment is unsuccessful and we need to start planning for an end of life scenario.
Here's why this is a very personal approach for me. There is a school of thought that someone in my situation should be completely optimistic, basically only believing that track 1 is possible. This just doesn't work for me. When everyone on my medical team is saying that at best I should think of my odds of being alive in 5 years as 50/50 I can't just totally ignore the worst case scenario. For me there are two big reasons.
Fear - It's very easy to be overwhelmed by the fear of being a husband and dad of young kids and dying young, with all that this would entail. I just can't afford that fear because the reality is that, even in the best case scenario, for the next several years I'm going to be getting scan's every 3, 6 or 12 months and at any point I could be given a really bad prognosis. I don't see how one lives well between those scans without overcoming those fears. For me the only way of overcoming those fears is to dive into them completely, to understand and address the root of each fear.
Pragmatism - I've heard from several families of late stage cancer patients who didn't make it, but who had taken the 100% optimistic approach. When things didn't work out they weren't prepared emotionally or practically. On the practical side there are several simple steps I can take now that will better prepare my family for the worst case scenario, but requires me and my family to be comfortable discussing and dealing with some difficult subjects now.
There's a third factor too, one that's a little more 'touchy feely'. One thing I've heard a lot recently from people who have faced life threatening challenges is that these events, handled well, have the potential to introduce a new kind of beauty into your life. That beauty is born from a new found appreciation for life and, often it seems, from an altered relationship with death. Again, this is a very personal opinion, but I think to find the beauty in this situation you have to accept the equal probability of both track 1 and track 2.
So what does this mean in practice ?
Track 1 - Spending time thinking about how life might look with a NED diagnosis. What does it mean for our family dreams and aspirations, for how we live day to day (or scan to scan), for my work, for Madé's work etc ?
Track 2 - Spending time on logistics (wills, power of attorney, advanced care directives etc) and what I'd best call personal discovery (talking to hospice workers and "death walkers", reading a lot on related subjects etc). I also plan to have the coolest funeral planned because, hey, not everyone gets the luxury of properly planning it.
What I'm trying to do is accelerate all my track 2 investigation, thinking & planning and then "box it". In other words I want to do all the preparation for track 2 so I reach the best possible level of comfort with it, but then I want to mentally set it aside, so I'm not dwelling on the macabre, but instead refocussing on the optimizism of track 1 thinking.
I realize that this track 2 stuff is difficult for some family and friends to deal with but again, for me personally, this is what makes the most sense.