Living with terminal velocity

This week marks the two year anniversary of my cancer diagnosis - at the time aged 35 with three beautiful kids under the age of five.

Much of the last two years has been about figuring out how to live with a strange duality. Statistically, I’m led to believe that I will most likely die before my eldest child turns 10. Of course I might not and I haven’t yet. So I have to figure out how to live in the interim - not just survive, but rather continue to do interesting & challenging things, visit interesting places and build a little more legacy for my family.

I was talking to a friend recently - someone I deeply respect and admire, who has a prognosis worse than mine. Doctors estimated she had only 3-6 months to live when diagnosed. We’re still talking 18 months after that. We met at a week long retreat for the terminally or chronically ill. Mmmm, we had a blast that week. She and I were discussing this challenge, this almost impossible balance. She suggested we needed a term for it. Up until then I’d been calling my approach to cancer ‘dual tracking’, but that was more about capturing the mental challenge of balancing the eternal optimism you need to battle a bad cancer diagnosis, with the need to be pragmatically prepared when your prognosis is likely terminal. This is a different kind of stage 4 cancer challenge, the challenge of not just staying alive but continuing to thrive - to remain ambitious, to explore, to create, to plan things in advance, to take risks. For this challenge I think I’ve coined a new term - living with ‘terminal velocity’.

Not long after I was told that I had stage four cancer I remember someone - I don't recall who - telling me that having late stage cancer is like being on a roller coaster ride that you can’t get off. I am yet to hear a better analogy - the last two years have definitely been a ride.

Those first few weeks are disorientating. The day I learned that my cancer had metastasized to my liver I came home and did some Googling (I now know, not wise) to understand survival rates, because I had the distinct impression my own doctors might be sugar coating. They'd encouraged me to think about it as a 50/50 thing. All the survival curves I found looked like this.

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That's my diagnosis on the bottom of the chart - Stage 4 with microsatellite stability . Everything I could find told me that I had less than a 10% chance of being alive within five years. I’ve since learned that survival statistics, and indeed any generalizations about cancer, are fairly useless to the individual. But seeing these charts at the time felt overwhelming. It was around that time that I wrote a panicked article on Medium - the modern day equivalent of climbing a mountain and yelling from the top.

The internet has been a big part of my little cancer story. That Medium article has been read by more than half a million people, briefly becoming a sad little internet meme. I got literally hundreds of emails and comments telling me I needed to find God - or Allah, or Jehovah, or Vishnu for that matter. I got A LOT of unsolicited advice - juice diets, Gerson therapy, Mexican and German cancer clinic pitches, mistletoe injections, ozone therapy, month long fasting, marijuana. As most cancer patients will tell you, there is no end to the number of things that other people think can cure cancer. Overall, being open about my situation online has been extremely positive. I started a blog to keep family and friends informed about my treatment plan, so I wouldn't have to keep repeating myself. To my surprise about 8000 people a month now read it. Almost every week I get at least one extraordinary email or comment - a suggestion, a personal story or simply a thought, that a complete stranger has invested considerable effort in writing. Some of that correspondence has been extremely valuable - research papers, treatment ideas from experienced patients or the person who introduced me to Colontown, an amazing resource that I still use daily . I've also formed some great digital friendships. Many of the cancer buddies I've made along the way - like Matt and Cass - have sadly died, as have some of my cancer mentors / inspirations, like Tom Marsilje.

When I think back on what I've physically been through, it now feels like I'm thinking about someone else, rather than remembering my own experience. I've done radiation, chemotherapy and so many surgeries - the longest of which (my colon and liver resection) was 11 hours. I've had a bunch of complications - a hernia, a haematoma and a bilateral pulmonary embolism that, apparently, was only hours away from killing me. I had a filter installed in my Vena Cava - which then got stuck, requiring dual access through my groin and my neck to pull it out from both ends. I had an emergency catheter inserted while I was wide awake - something I wouldn't wish on my worst enemy. For six months my bowel was re-routed into a bag stuck to my abdomen and to this day I have a portacath accessing my jugular, to keep me ready for more chemo. In January this year my cancer returned in my liver - so I had another half removed. Yeah, it's been a ride, but unlike so, so, many, I am lucky enough to still be here.

I confess I have not mastered the art of having stage 4 cancer, and living. I still believe in the merits of my dual track approach to advanced cancer - stay optimistic but pragmatic - however doing that over a sustained period of time is hard. I find it impossible to cling for long to a middle ground. A doctor will remind me about the severity of my diagnosis and tell me not to get overly optimistic, and then a friend, family member or work colleague will scold me for being “too pessimistic”.

How does one maintain a career (not that I've ever liked that word) ? I find work, at least work the way I am used to doing it, one of the biggest challenges. As someone who has always been heavily invested in and largely defined by my work I have found it extremely hard to adjust. On the one hand I get frustrated and angry when I feel like people are treating me like “the guy with cancer” - not including me on a challenge, not considering me for an opportunity, not expecting enough from me. However I myself am paralyzed. I'm too scared to commit myself too much or to take on something too new or too big, for fear of having to take leave for more treatment and letting people down (or causing myself embarrassment). One moment I'm feeling guilty for not working as hard as I used to, as hard as I feel I still could, and the next moment I'm questioning why I'm even working full-time at all. One of my biggest fears is that I actually live another 20 years and look back and feel like I 'gave up' on ambition too early because of my prognosis. It's so easy to logically think I should just push on like nothing has changed, but there are so many things everyday - real and yes, sure, some imagined - that make this very, very difficult. This is one area where it's been difficult to find people for good advice. There are not many people with stage 4 cancer who work full-time in the kind of corporate environment that I do - or at least I've failed to find them so far. It sounds a bit dramatic, but quite honestly on my worst days I find myself thinking it would be easier to just die - let my family collect the insurance and get on with their lives - rather than us all continually navigating this very unstable middle ground.

The semantics of stage 4 frustrate me no end. I find if I'm not explicit I have everyone congratulating me - high fiving me for “beating it”, asking me why I didn't apply for a newly advertised bigger role at work or why I’m not starting the business I’ve been dreaming about. Because, you know, I'm cured and “good to go”. This shits me no end. However if I point out that statistically it would be more accurate to think of my diagnosis as terminal, then it's very clear I'm deemed too negative - I’m being a downer. I might get the “well you know Scott, we're all going to die eventually” line, which is the new phrase I like to hate. And sure it's easy to say I shouldn't care about this crap, but these words inform the thoughts and actions of others, which eventually has real implications - so I need to try and get this right, but I know I haven't yet.

So, how does one not just survive, but thrive ? How do you still maintain a life with real 'velocity' when you’re likely terminal. I haven’t figured it out yet, but I’m beginning to believe that the key to achieving terminal velocity is the realization that life itself - you, your work, time, society - is really just a series of imagined constructs, all of which are more malleable than most of us appreciate. But that’s a whole other topic, so I’ll leave it there.

I’ve said it before, but I’ll say it again. Thank you for supporting me on this roller-coaster ride.