This post outlines my medical history organised by system, since being diagnosed with advanced melanoma in October 2013. To see my medical history organised chronologically, see this post here. It remains a work in progress as new issues arise, and as I go back through my records and find things I’d overlooked.
As discussed here, I was diagnosed with advanced melanoma in late 2013. It has been a wild ride since, and I thought it would be good to document the many steps in my journey. I’m hoping this will be a useful record not just for myself, but my family and friends, as well as those that might be facing a similar journey themselves. This document will evolve over time, both as I go back through the last few years and find things to add, but also as my story continues to unfold.
To see my medical history organised by system, see this post here.
During the parliamentary debate on assisted suicide in Victoria last year, I felt compelled to write a letter to the politician’s involved outlining some concerns I have about the concept. The letter drew on my experience as both a doctor, and a patient with an incurable cancer, and while my concerns had been present for quote a while, they had crystallised some what since my melanoma diagnosis. A heavily edited version of this letter was subsequently published online by The Gospel Coalition, and it can be found here. However, I thought some might be interested in reading the unabridged version, so I’ve included the text of the letter below. You can also download it as a PDF here.
Last week I was attending one of my (many!) specialist appointments to discuss results from my recent colonoscopy, possible treatment options for my ongoing colitis, and how they would interplay with my immunotherapy treatment. While in the waiting room, I opened up my daily bible reading app (ReadingPlan) and I just happened to be up to 2 Chronicles 21. Verse 15 was rather…err…interesting, but adds weight to my belief that God has a sense of humour!
15 “You yourself will be very ill with a lingering disease of the bowels, until the disease causes your bowels to come out.’”
This prophecy from Elijah was to King Jehoram, and sure enough came to pass. To rub salt into a very painful wound, the chapter finishes with:
20 Jehoram was thirty-two years old when he became king, and he reigned in Jerusalem eight years. He passed away, to no one’s regret, and was buried in the City of David, but not in the tombs of the kings.
“…to no one’s regret…” Ouch!
It’s enough to make me want to bowel down and worship!
I still remember quite vividly the unfolding nightmare that was my melanoma diagnosis in 2013. It was bad news after bad news after bad news. One kick in the teeth after another. First it was “There’s something big on your chest X-ray that shouldn’t be there”. Later that day it was that “it’s also in your abdomen”. A couple of days later it was diagnosed as melanoma. A CT scan early the next week showed it was also in my brain, which ruled me out of pretty much all of the clinical trials of new melanoma treatments. A follow up MRI a few days later showed it was even worse than the CT had suggested which meant stereotactic radiotherapy to the brain mets was no longer an option and I required urgent neurosurgery followed by whole-brain radiotherapy. There was one remaining hope in the form of a targeted therapy which had shown promise, namely dabrafenib, but again I was disappointed to discover that my melanoma didn’t have the mutation that this drug targeted so it wasn’t an option either.
This torrent of bad news was upsetting and frustrating for me and my family, and in amongst trying to wrap my head around each new piece of bad news, I was often left wondering where was God in all this? Did He really care? Why wasn’t He allowing me access to these treatment options? He seemed determined to just let me die, and quickly at that! Don’t get me wrong, there was lots of provision from God in other ways, such as the practical and spiritual support of my family and church, but I was still struggling with these darker questions as well, and wondering what was going on.
There’s been yet another twist in my earlier story about trip to Sydney for a medical appointment a little while back. I popped into my pharmacist earlier this week to get a script filled and he casually asked me if wanted my final lot of Humira, which was the medication I was driving all over Sydney to try and get because I had run out. As it turned out, I had one more repeat than I had thought, and the pharmacist had filled it expecting me to come back and get it when I needed. This meant there was more Humira sitting in the pharmacy fridge in Newcastle waiting for me the whole time I was going going back and forth across Sydney!
Following my recent “discovery” of the concept of Patient Work, it has reframed the way I view all my interactions with the healthcare system such as doctors visits, taking medication, blood tests and scans and so on. I’ve decided I’m going to start describing and documenting some of these interactions primarily for my own interest, but also in case others find them interesting as well. What follows is an almost textbook example of some of the complexity and unpredictability of Patient Work, and the need for the Patient Work System to be resilient enough to cope with these variations and uncertainties
This is another post from my old blog, which will give some background to where I am today.
Debbie: Can i ask you a question?
The Grim Reaper: What?!
Debbie: How can we all have died at the same time?
The Grim Reaper: The salmon mousse!
Male Host: Darling you didn’t use canned salmon, did you?
Female Host: I’m most dreadfully embarrassed!
Monty Python, The Meaning of Life
I thought it would be good to document how my diagnosis came about…it really was one of those “bolts from the blue”.