Well, today feels like a pretty big day for me, but also strangely anti-climactic given I’ve been counting down to it for years. I think today I can finally call myself a cancer survivor.
Today I got another set of clear PET scan results. What makes today different though is that it has now been five years since I last had active cancer which - as far as statistics are concerned - finally puts me back in the same risk category for cancer as the general population. Metastatic cancer patients are never deemed “cured” so this is as good as it gets.
This post is really an excuse for me to digest the news…and the last few years. As always, it also saves me repeating the news update for friends and family.
When I was diagnosed with Stage 4 colon cancer 6 years ago no doctor wanted to give me definite statistics. My own research explained their reluctance, the odds were not great. I had a 13% chance of being alive 5 years post diagnosis.
Five year bowel cancer survival rates (Bowel Cancer Australia)
I was 35 with 3 kids - 1, 3 and 5 years old - and we’d just arrived back in Australia after 4 years living in California. We’d come back with dreams of buying some land and doing something totally different, but all of that had to go on hold after a routine GP visit turned into a surprise cancer diagnosis.
I took 10 months off work for what my medical team described as an ‘aggressive’ treatment plan - Folfox chemo, radiation, bowel & liver surgery, then more chemo. I had a stoma for six months post surgery. The treatment literally nearly killed me. I had a bi-lateral pulmonary embolism - a big blood clot that lodges in both your lungs. To de-risk my surgery from further clotting I had to have a shuttlecock shaped filter inserted in my vena cava (large vein in the middle of your body) - a process I really can’t forget soon enough. I had to self inject anticoagulant medication for 6 months - a huge challenge for someone with a lifelong needle phobia. Then a couple of weeks after the 11 hour surgery I had a mysterious bleed one night and nearly kicked the bucket. Oh, then there was the severe neuropathy and hand-foot syndrome caused by the chemo. Recalling this all now 5 years later it really feels like I’m telling another person’s story. I think your brain buries these memories somewhere deep for a reason.
After all this treatment I was scanning clear (no evidence of cancer) and I went back to full-time work. Unfortunately the cancer returned to my liver less than a year later - deemed a bad omen for my prognosis. This time I just took 3 weeks off work for keyhole surgery to remove the new cancer spots (they actually took ½ my liver out) and started a 3 monthly surveillance scan routine.
….And the cancer just has not returned.
I should just say here how lucky I am. I know so many people who had a much better initial prognosis than me but who were not as lucky. I was lucky that my liver mets just happened to be in a resectable position. I was lucky that my surgeons were aggressive and took out a bunch of lymph nodes that also turned out to be malignant. Plenty of things just went my way. I don’t have the survivor guilt that I hear a lot of people talking about but I will always be supremely aware of how lucky I’ve been. I don’t attribute my survival to anything special that I’ve done that others have not, I’m just damn lucky.
I suspect most people won’t understand why today is such a big deal. It's been 5 years since that second round of surgery, obviously my odds have gotten better every year. You have to realise though that all guidance over the years has been ultra conservative: “congrats on the clear scan but don’t get your hopes up, your prognosis remains challenged”. It’s only been in the last year or so that I’ve allowed myself to even entertain the thought that it might not come back. I’ve never had my chemotherapy port removed, such was the perceived risk of recurrence. I booked that removal procedure today !
Life for the last few years has been this very strange blend of ‘getting on with it’ but also holding back ‘just in case’ - never making plans too far in advance, not making any big new commitments. There have however been some interesting ‘cancer induced’ life twists, for example:
I’ve made some amazing friends. Sadly most of the cancer buddies I made along the way have since died, but some remain constant inspirations to me - I’m thinking about you Gillian (and Jeremy). Gillian and I met on what I like to call a retreat for dying people, but I’m doing a disservice to the amazing team at Quest for Life.
I did a lot of planning and research around death and got really passionate about having the right to choose how I die if it came to that. In the process I realised that my (technically terminal) diagnosis was actually a useful case study for the New South Wales voluntary assisted dying campaign. Again, I got to meet some amazing people, like Shayne Higson & Penny Hackett. That legislation passed and comes into effect next year after many years of campaigning from these amazing ladies, and many others.
I got to be part of a very small group of people participating in a ground-breaking trial on the use of psilocybin in the management of terminal illness anxiety. Who could have imagined that my cancer diagnosis would lead to a ‘hero dose’ of psychedelics ? Again, I got to meet amazing people like Marg Ross and Justin Dwyer and to lend my experience to help illustrate the potential impact of a friends’ venture at Psylo.
The biggest ‘twist’ of all has been a fundamental reevaluation of what really matters - and this is a work in progress for me.
Pre 2017 I defined myself through my work - first academically and then professionally. I 100% lived to work. The day I was diagnosed all that stuff instantly ceased to matter. All that really mattered was my family and my own very personal engagement with the physical reality of the world. I say this is still a work in progress because in practice - given it now appears I’m not imminently snuffing it - I might actually have several decades of ‘useful’ life left, and I’m still trying to wrap my head around how best to invest that time and energy, informed by the pretty unique learnings these last few years have afforded me. If anyone has ideas, I’m now wide open to them.
I know I said thank you before, but I really can’t say it enough. Several people have literally saved my life - surgeons, doctors, nurses - and others have greatly enriched it. Thank you.
This might be my last post here, I’m not sure yet. I set up this blog initially to keep friends and family informed so I didn’t have to keep repeating updates during my treatment. I know several hundred people a month now visit and I’m told that the stream of consciousness I posted here throughout my journey has been useful for many, so I’ll leave it up for know.
Scott