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.
Having just started my fifth antibody based medication, this one to try and get on top of my auto-immune colitis, I’m acutely aware of the various tensions, conflicts and ethical dilemmas raised in this article. My melanoma, while not completely gone, has been well controlled by the immunotherapy I received. The main story for me in recent years has been managing the side-effects of the immunotherapy as well as the multiude of medical appointments, blood-tests, scans and so on. But it has taken me from seriously considering palliative care having been given a median survival of 3-4 months, to being back at work part-time some 5 years later. Fortunately, as I am part of clincial trial, combined with Medicare and private health insurance, my out of pocket costs have been manageable. But as these expensive interventions become mainstream, and cancer is increasingly converted from a death sentence into a chronic disease, there will be serious challenges ahead for the health budget, of both governments and individuals.
Opinion | The Problem With Miracle Cancer Cures
Opinion | The Problem With Miracle Cancer Cures
If immunotherapy worked most of the time, this would be an unambiguously happy story. But it doesn’t.
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.
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.
This was a video my church produced last year to record part of my story, particularly the last few years of it. I hope you “enjoy” it!
Another day trip to Sydney, this time to Bondi. It would be great if I was going to “Sculpture by the Sea”, but no. Yet another medical appointment. Today marks 4 years since my health started unravelling. Living with cancer is tough. You often hear it described as a “battle”, however many don’t like that term as it infers that if you lose the battle you weren’t fighting hard enough. Those that do survive, must’ve fought harder. In my case I don’t think the analogy works anyway because the last few years has been a pretty passive process for me. Things being done *to* me rather than *by* me. It’s often felt like I’m just curled up in a ball while cancer kicks me repeatedly. Occasionally it, or perhaps more accurately, the treatment side-effects, seem to get bored and leave me alone for a little bit and I can catch my breath. But when I do try to get up & do something, I get whacked from behind again and I’m back on the ground.
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”.