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.
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.
The question “Cancer and work: A compatible duo?” was posed by the headline of an SMH article. My current answer is “Just barely!”
I can certainly relate to a lot of the issues discussed in the article about the pros and cons of working following a life changing medical diagnosis. But it should be obvious that there is no clear cut answer to the question, and it will inevitably change over time for any given individual as a result of disease progression/regression, as well as the duration, impact, and side-effect of any treatments. Following my diagnosis, the presence of brain mets meant that working (and many other things!) was immediately off the cards due to patient safety concerns. Not that i could’ve worked anyway due to my emotional state and the torrent of further investigations and medical appointments that came my way. and the prognosis was so bad that i gave up any hope of a return to work. However, following my dramatic response to treatment, and a gradual improvement in my symptoms, the theoretical possibility of returning to work arose. I was still in two minds though, trying to weigh up the benefits of working mentioned by the author, but has he also points out, working was now less of a priority for me, and i didn’t know how long my improved health would last. In the end, i did make to gradual transition back into the work force, but even now i still feel the tension of that question, as being sick is still essentially a part-time job in and of itself for me, with all the ongoing medical appointments, scans and blood tests. There is also the new and unusual side-effects that crop up from time to time from the immunotherapy, as well as the side-effects from the drugs used the treat the side-effects! So while i am managing to combine cancer and work at the moment, it is a question i will need to keep asking myself from time to time.