Captain Australia’s Big Tinnitus

Had planned another practice walk today. I think I’m improving on the technical quality of the streams that I take, so I feel as a next step starting to refine the way that I speak, the things that I capture is pretty important.

On Saturday, I had a wonderful meeting. Wonderful. And it wasn’t even with a human. This beautiful chestnut mare cantered over to me, and we had a lovely, nourishing, heart-touching moment together – a hug that lasted centuries (well, a couple of minutes at least). It was just a beautiful moment, that I get to add to my collection and carry around in my pocket.

But I didn’t record it. It would have made a lovely video. Especially to share with my kids.

Honestly, that’s my first & primary motivation in taking the streams – to build a kind of living diary that shows my boys who I am/was, something that they can look at in the future, if ever the cancer came back to claim me. Something that shows them an adventure, and has messages of hope, healing, personal growth and momentum woven into the story.

Then there’s engaging the public, for many of the same reasons – that there could be even one person, as severely broken as I was, who benefits from it, finds and starts to grow that little spark of hope, that makes it all worthwhile. Hope at the personal level is vital, the belief that positive change is available to you – but at the social level, it’s a circle that we create together, and it’s this constantly pulsing source of energy, strength, growth.

And then lastly, in sharing that, I also want to attract public attention into the charity (The Kids Cancer Project), in the hopes of gathering support and donations. Ideally, I help to raise a quarter of a million dollars for them (or a million!). I’ve wrapped a lot of my personal healing up in the idea of being of service, I guess. And it’s a massively worthwhile charity, helping to soften and improve treatments, and ultimately cure these classes of paediatric cancer – cancers that specifically attack children.

Average age of 6. 950 Aussie kids diagnosed every year. About 3 kids dying every week .. like, one every second day, pretty much. It’s just not on.

I survived cancer … but kids shouldnt HAVE to.

And all that science, research, it benefits humanity more generally. Research into one type of cancer add wider insights to the research community, and research funded in Australia can benefit scientists around the world.

So yeah, I want to practice, I want to do BETTER.

But today I had to bail – my middle son is unwell and out of school, while my wife is AT school – she’s an accountant by trade but re-skilling now to become a nurse. I’m very proud of her. And one of the back-handed benefits of losing your successful travel insurance company to the COVID border closures is that you’re always free to look after a sick child. 🙂

So a day at home.

But as I sit here typing this, I’m quite moderately stressed and distressed.

Why ?

Well, after chemotherapy, I developed a condition called TINNITUS. Most people earn it – they listen to too many rock concerts, too much loud music, and the payback is an occasional ringing in the ears, a kind of BEEEEEEEEEEEEEEEEEEEP .. you may have had it yourself here and there – it indicates irreparable damage to your ears. So if you start to notice it while it’s mild, INTERVENE so it doesn’t deteriorate.

For me – it started at severe. Like 24/7 a constant ringing. It’s only a specific jedi mind trick, a kind of mental discipline that allows me to phase it out. If I think about it, talk about it, it comes on hard —- it was always THERE, but thinking/talking summons my awareness of it. Like now.

People have committed suicide over severe tinnitus, and suicidal ideation is listed as a symptom for chronic sufferers.

I’ve been dealing with it (pretty successfully) for 5 years, and actually think of it as the LEAST of my chemoradiation induced health problems. But maybe that’s me “whistling past the graveyard” because it is actually constant, oppressive and severe, unlike the neck/face cramps which (while distressing) come and go, or the thyroid which (with medicine) is something that I’m overcoming. Most of the other stuff just fits into the “annoying” category 🙂

But the tinnitus ? Like cancer, it’s kind of insidious.

Anyway, this morning I woke with a significant intensification in the problem. For the past 4 years, it’s consistently been sitting at, let’s say an 8.9 out of 10 on severity. It doesn’t waver, it sits there PIIIIIIIIIIIIIING, but by “using the force”, I can zone it out to not dramatically mess with my daily living.

But thismorning, I wake up, and it’s … maybe more like a 9.5. Not the most severe that I can imagine, but certainly horrible. Louder, more oppressive, harder to drown out.

Worse, there’s a kind of numbness in my right ear. I can hear through the ear, but it feels as though it’s stuffed with cotton wool. I suspect I may have permanent hearing impairment in that ear now. From what I’ve read the tinnitus and hearing loss are separate but intertwined problems, in that both were caused by the chemotherapy, but they progress on their own specific disease trajectory.

Chemotherapy, the gift that keeps giving. I had 20/20 vision, perfect hearing and good teeth before chemoradiation.

Now, not so much.


Sometimes I ask myself … knowing now that radiation did most of the heavy lifting, and adjunctive chemotherapy only added 2% to your survival chances, if you could go back would you skip the chemo ?

For another person the answer would be yes, maybe. For me, it’s still a firm no. I know I’ve gotten lucky and (touch wood) beaten a late stage cancer — what I DONT KNOW is whether that 2% made all the difference. My own suffering is NOTHING next to being here for & with my wife & kids.

I have to remind myself of that if this new deafness doesn’t go away.

I’m hoping it’s linked to this multisystem inflammatory attack happening at the moment. My doctor called it “Post Vaccine Multisystem Inflammatory Syndrome” meaning that my body over-responded to vaccine and has produced excessive antibodies, and they essentially pick up their little micro-spears, look around, are unsure what to do — so they start attacking healthy tissue.

Hopefully this wears off in the coming week.

Anyway at home today, hanging with m’boy.


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