Diagnosis Revisited

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”.

The fateful day was October 30, 2013. The week before I’d had some gastroenteritis. Nothing too dramatic, but enough for me to take a day off work. Ironically, the symptoms came on during a list I was doing at the Calvary Mater Hospital in Newcastle involving melanoma surgery. Over the course of the next few days my symptoms improved, and I was able to go to work on Monday and Tuesday, and even made it to the gym. On Tuesday night i had a bit of abdo and flank pain…again, nothing too dramatic, just felt like bad wind pain. I slept ok overnight but the next morning (the 30th) the pain was still there and was getting a bit worse. Bad enough for me to not go into work, but I was still able to drive myself to the John Hunter Hospital (partly knowing the ED would be pretty empty at 8am, whereas if I left it to later it would be packed!). I guess I was concerned about the possibility of a complication from the gastro, or maybe kidney stones given the flank pain.

I was quickly triaged and assessed by a doctor, bloods sent off etc. The doctor was concerned about the small possibility of a perforated ulcer, so organised a chest x-ray. That was when things started getting “interesting”. It showed a large mass in my left lung (mediastinum)…it was big enough that even medical students would’ve seen it! In hindsight, the only symptom I had that could be attributable to the lung mass was an annoying cough that I’d had for a couple of months beforehand, that was easily explainable by other causes (post-viral, asthma, sinuses, reflux etc). The list of differential diagnoses for something like this was effectively endless, but it was immediately apparent that it wasn’t going to be good, whatever it was. At this stage I was moved into the main part of the Emergency Department, and was reviewed by the medical team. They organised a CT scan of my chest, abdomen and pelvis, and this scan picked up additional smaller masses in my lungs, as well as small masses in my abdomen and one of my adrenal glands. This of course was bad news in terms of diagnostic/prognostic possibilities. The key was to get a sample of tissue, so they could work out exactly what the masses were, and then progress from there.

So I was booked in to have a bronchoscopy and biopsy at John Hunter on the Friday. This went off without a hitch, and then we had to wait until the following Thursday to get the results. Unfortunately it came back as melanoma, which is quite an aggressive, difficult to treat disease, although there has been some dramatic progress made in recent years. It also came as quite a shock. You usually associate melanoma with sun exposure, but i’d always been very sun-safe. In fact, my grandmother died of melanoma when I was 4, and while i’m not sure if that has any “genetic” significance for me, it certainly made my parents very committed to “slip-slop-slap” well before it became fashionable. We also weren’t allowed out in the sun in the middle of the day, and generally speaking i was more of a nerd than a jock anyway and every job i’ve ever had has been indoors, and despite living two streets back from Freshie beach, I never got into surfing or nippers etc. Even when I got older and maybe slackened off a bit, I was still generally more sun-safe than my friends. I’ve never had a melanoma removed, and a skin check at the Melanoma Unit didn’t reveal any either, so it would seem I was one of the “unlucky” 10% that present as I did with metastatic disease with no evidence of a primary.

Melanomas have a habit of spreading to the brain, so the next step was to scan my head to look for any evidence of disease there. A head CT was done, and this showed up a number of metastases, which further worsened my prognosis. An MRI showed up several more that weren’t seen on the CT, and also confirmed that the largest one was big enough and causing enough swelling that it needed surgery, which was then performed at John Hunter Hospital on Friday 15th November.

So, in the space of two weeks I had gone from going about my “normal” life of working, going to church, playing with the kids, planning for the future and so on, to lying in bed recovering from major surgery facing an uncertain future with a disease that has a terrible prognosis. Life can change quickly, and as a result of circumstances beyond our control. In some ways I’m fortunate that I have been given at least some time to reflect on this and “get my affairs in order”, when so many others don’t get that chance due to the sudden nature of their death. So hopefully, my experience will encourage others to think about their own lives and probably more importantly their own deaths. Because, at the end of the day, there is no escaping it, so surely it is worth thinking about while you still can and deciding on whether or not the inevitability of death means you need to make changes to how you are going about life.

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