A long and pleasant day, and the walking wasn’t too bad.
Even so, 40km did feel more like 60 by the time I was done. I think all this time to practice and prepare is really helpful, because if I had to start the BIG WALK tomorrow, I’d need to dig deep to get through the initial resistance where my endurance and health levels are lower than required.
The goal for daily distance during Captain Australia’s BIG WALK will be somewhere between 40km – 60km per day every day. It feels about right to me. 20ish in the morning 20ish in the evening. Exploration, rest, meeting people, feeling the wind/sky/ocean in between. Getting back in touch with my spiritual self and the natural world.
I think the streams are getting better, and I’ve finally got my solar power solution figured out.
I couldn’t find this written anywhere, but the older generation of cables don’t seem to tolerate the erratic solar current – the cables burn out completely. I don’t know that’s just my guesswork, but I’ve had the system collapse twice now, and despite my worry that it could be the power bank, the phone, the solar panels, the solar battery pack, damage to the phone’s port – it appears that it’s actually just the cables.
I’ve gotten a couple of higher quality cables and it seems like everything is working perfectly. (The ones that died were dodgy old things)
Kids fighting a cold/flu, and it looks like I’ve got a tickle in my throat now too – my wife starts a nursing placement at the Children’s Hospital this week, so it may be that I’ll be spending a lot of time on ‘dad patrol’ and have to put Captain Australia a little bit in the back-seat this week.
I’ve still got about 6 weeks before D-Day (Departure day 26.12.21), so I still have time to build things up. My main goal at this stage is to grow public awareness and support – which will be essential to the donation outcome for The Kids’ Cancer Project.
My own healing is still woven into the BIG WALK, but honestly, I feel as if I’m already OK .. so instead of mere healing, I go searching for revelation and access to a higher level of growth as a human.
Today, rest & time with the family. Tomorrow, possibly out in the city, depends on whether I have to hold one or more of the kids out of school due to illness.
I know it says 13 November – postponing, got an unwell kid on my hands
I’ve been pretty buoyant the last couple of days, despite having an ongoing array of medical problems. The steroids appear to be working, so the vax-induced inflammatory problem that caused the loss of my hearing is slowly getting better (maybe back as far as 80%). Leg cramps have eased off as well, so I’m doing much better overall.
Sunday I figure I’ll take a train out to Redcliffe, a beach town about 40km north of Brisbane (my city) and walk back in. Just to get back into the groove of walking. 40-50km is roughly what I’m planning on every day during CAPTAIN AUSTRALIA’S BIG WALK, so I think I should start to get into the habit wherever possible.
With my solar blanket, solar charger and power banks, I want to see if I can run a stream all day long, and what the consequence is of that in terms of my battery situation, so I can get a kind of base line for what I might be able to achieve when I’m on the road between any kind of power supply.
I don’t want to miss anything significant during the BIG WALK, so I feel that all this practice is very productive (and important).
Anyways, another mini adventure tomorrow. It’s great to get out into the sunshine, back in touch with the natural world after 5 years in a cave of suffering. It’s great to come alive again 🙂
After five years in their care, and the care of my wonderful radiation oncologist, Dr Charles Lin, I was formally discharged from the Royal Brisbane Hospital today.
I had the camera up the nose, a full physical & history check, and the doctor declared me “Cured”
The way cancer works, that means the particular malignancy. That head & neck cancer that I was diagnosed with in 2016, after 5 years of treatment and vigilance is cured. A stage 4 cancer, with a 6 months to live prognosis and 40-60% chance of total curative treatment.
So yep – my outcome was ‘Total metabolic response to treatment. Cured’
Pretty good, eh ?
I just wish I could give that to every child impacted by paediatric cancer. Heal them somehow. But I can’t. So what I need to do is pay forward this second chance I’ve been given, the great kindness and support I’ve received from the public, and throw myself into THE BIG WALK and try and raise as much money as possible for this vitally important charity (The Kids’ Cancer Project)
If you can do ANYTHING to spread the word, please help. Tell a friend, tell your family, blast your social media. Make a video where you SUPERHERO UP! FOR SCIENCE ! and have a giggle, do a dress up as a superhero and say you support THE BIG WALK, and link in to the charity (see 1) to help us get support, attention, donations
If you have any advice, contacts, corporate connections or a venue anywhere along the route of the BIG WALK, please write to me (see form below). I’d welcome any support you could show, any help, concrete or intangible, I’d take it with gratitude. If you have a venue in a small town on the way between Brisbane and Melbourne, I’d be glad to visit and host a karaoke night or something, during my BIG WALK if you’re up to have some fun for a good cause.
But yeah, a great day, great news. I’m so grateful to still be alive. To live and thrive in the light of the love of my wife and three boys, to come to this place after a time of such darkness … its an indescribable joy, relief, privilege.
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.
And it just reinforces: NO CHILD SHOULD HAVE TO ENDURE THAT
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.
I should use this blogging space better and more frequently.
I guess the fact that I’m not is in a way a good sign – I’m alive, and I’m too busy living. After my fight with Stage 4 cancer, I’m almost shocked to be able to say that 🙂
I had terrible adverse reaction (cramps) after Jab#1, and I had more after Jab#2 but this time it was more generalised. Some cramping, not as severe, but a wider range of other symptoms, nausea, diarrhea, headache, muscle pain (arms & legs). My doctor said it’s a thing called “Vaccine Induced Multisystem Inflammatory Syndrome”, a problem where your autoimmune response over-produces the antibodies in response to the vaccine, and they go rampaging around attacking healthy tissue.
It can be quite severe, but I’m almost over it – just niggling stuff at this stage.
Today I went out to Ipswich and walked back home, all told only 28km, but honestly tonight it feels like double that. Maybe it’s the wobbly legs, the long, windy hilly terrain. It was still a lovely day, just physically grueling.
As you’ll see in the stream, at one point I’m on a high road (so many effing hills!), and I realise continuing down the roadside would be unsafe, but down down down below me there’s an alternative path. Old fool that I am, I slide down this (at least 60 degree) incline on my big old bum, haha. Like a child on a waterslide.
It was delightful.
People down the bottom were watching, laughing.
When I got down there, two men (kind heartedly laughing) explained that directly beside me there was a path that went all the way up. True, I would have had to backtrack for 5 minutes (and know it was there), but it was hilarious to bum-slide down this long and iffy mountainside to land and have them point out the nearby path 🙂
Lamentably their audio is no good. Earbud mic has to be tuned into my voice, or ambient sound, and it was in my voice mode.
Later, I stumbled upon the memorial stone of a lady killed almost ten years ago (murdered by her husband), Allison Bayden-Clay. The memorial stone did exactly that – brought back memories of the crime. How .. unnecessary, selfish, ugly it was, how stupid and pathetic and vapid the offender was. All suburban pathos, a life torn, a man with a mistress and one screaming moment you can never take back. A sad, nasty story.
I messed up my charger cable (but hopefully not my phone) by trying to feed power into the device directly from a solar blanket. That experiment failed and left me with a no battery phone and no way to recharge it, so regrettably I couldn’t share the best part of the day.
I was walking down a remote dirt road, past a farm where two horses were just hanging out — and this gorgeous chestnut mare suddenly canters across the property directly to me, as if she knows me. She leaned over the fence inclining her head. So I approached, talked to her, said hi, said who I was and how gorgeous she is, but sorry I don’t have sugar or an apple or any of those horsey type of things that I could give her. (In fact I hadn’t eaten all day and had no food at all on me, old fool that I am).
She inclined her head, tilting it … she wanted a hug.
I get emotional now, and will remember this moment happily for years to come. It was just lovely.
I stroked her mane, her ears, the side of her face. Leaned my face in and rested it against hers. Rubbing her … nose ? head ? Whatever the correct word is. She seemed very happy with it, and I most certainly was. I think we both just needed a hug. Maybe she was a wise horse, and saw that in me.
I have no experience with horses, none at all, so it wasn’t a learned thing, just instinct, and it was lovely.
Digital billboard courtesy Mark McCarthy Automotive. Doesn’t photograph well because it’s a screen.
Completely stoked that courtesy of Mark MCarthy Automotive, a great car sale/repair place near where I live, we have billboard advertising of Captain Australia’s BIG WALK (For The Kids’ Cancer Project) !
It’s such a strange thing to advertise, I can only hope people see the underlying truth, the good Quest, and get onboard to support the charity. 950 Aussie kids diagnosed every year. 3 dying every week. It’s a tremendous cause, funding the science into figuring out and eliminating paediatric cancer.
It’s been so beneficial to my own healing from a Stage 4 cancer (6 months to live but I beat the odds). Kindness truly is the antidote to suffering.
I couldn’t be more delighted by them offering up the advertising space, and I love the way it looks.
I got my #2 jab today of the COVID vaccine. Main motivation was out of respect for other people, and a kind of .. I don’t know, civic responsibility if that makes any sense. I had horrible cramps for 3 days after the first one – the doctor explained my metabolic response to the vaccine was more aggressive than a normal persons, so the pain was basically the autoimmune response, the antibodies causing inflammation and attacking healthy tissue. (But to be sure it wasn’t DVT I had to have a special vein scan called a ‘doppler scan’).
He said I’ll probably get even worse cramps tonight and over the next few days.
(And the last ones were AWFUL, just awful, pain spikes up to an 8 or a 9 – but it doesn’t abate, it kinda pulses at that level 5 – 8 – 5 – 7 – 5- 8 – 5- 8 – 9 – 9 – 9 .. and turns into a new cramp. It’s not like a normal cramp from over-exercising, and it leaves the muscles feeling tender and vulnerable. They seem to come on randomly, but less when you’re walking around, that first night I basically had to pace from like 1am when the first cramp woke me, until dawn.
Anyway, hope & optimism, baby, even in the face of darkness. So fingers crossed no severe cramps.
And if I get them, I’ll just have to weather them: will let you know 🙂
What I do next as Captain Australia, and when I do it, will depend on the cramp situation, but if I have a good night, I plan to go out into the city tomorrow and promote the charity. Ideally this week was thinking about a walk from Ipswich into the city. (About 40km). I think these nice full-day walks are really building my mental & physical strength, and I’m starting to get better with the recording/streaming. (Kinda).
My plan is to ask the great characters I meet for permission to film the encounters, so I can have more interesting and fun stuff to share in the streams. More on that soon. Still in practice mode, don’t start THE BIG WALK until 26.12.21 .. but the day is looming EVER CLOSER!
So I woke up at sparrowfart (if you’re not from Australia, “sparrowfart” is a term for early in the morning, apparently because it’s so quiet you could hear a sparrow farting. We have other similar colourful phrases such as “I’m so hungry I could eat the arse off a chinaman through a cane-chair”. (I offer that for posterity and apologise for it’s inappropriateness in light of current standards. I have respect and brotherly affection for people from China, cane chairs, farting, sparrows .. but .. well, maybe not cannibalism.
I rode the train & bus out to a place called Coomera, and began a long and windy walk down the Gold Coast.
Siri and Google Maps led me astray at first, suggesting there was a shortcut if I wound around back behind Dreamworld (a local theme park with a storied history). I did that, and it was worth it, meeting a couple of lovely blokes who pulled up for a chat, and even made donations to the charity — BUT it unnecessarily added about 6-8km to my journey, because the map expected me to execute some kind of polevault over a high fence (with spikes on it) land on train tracks, and walk over a long train bridge (ignoring government warnings that if I attempted this, there’d be trouble)
So I got back on track and headed into the coast.
It was a long, hot morning, not a storm in sight – and I had hoped and expected to be lashed by thunderbolts and lightning (very very frighting!) all day, have a real weather-test.
I met so many lovely people. The GC is full of friendly, decent people who will pull over for a chat, ask all kinds of insightful questions, just plain great stuff. It has a rough reputation (a bit at least) these days, increasing street violence, and I certainly DID see a kid getting bashed at Southport last weekend (and intervened, yelling at the attackers who scattered and ran). But yesterday, I was amazed and inspired by the kindness.
A family with a gorgeous young dude named Levi (toddler) pulled over for a chat, and gave me an icy cold coke & water.
I met this wonderful woman who had suffered setback after setback fighting her way back from hospital acquired post surgical infection and sepsis. Almost a year of horrible suffering. But she was strong, vibrant, leaning into her health. Her hope was wobbly, but I like to think I was able to give some encouraging words that helped her to see that hope is the most fundamental and important tool in any fight. The belief that “I can win this”.
Some really great, colourful people. Kindness. Chats. The walk itself came in close to 40km, but I actually spent more than 10 hours ‘down the Coast’ with all the rambling and G’days.
At the end, the thunderstorm DID hit, and I was able to walk for a half hour or so through lashing rain.
The bag, the boots, everything, withstood it really well. The pants regrettably weren’t great, soaked through very quickly, and even though the socks were sealskin and water resistant, I could feel them becoming gluggy … but I reckon even in severe rain, I could walk for hour stints, dry off, rest a bit, repeat. Unless the weather is outright dangerous, I’m pretty confident now I can sustainably walk all day even in grim weather.
Today (Sunday) I’ve just been chilling at home, joking around with the kids on-and-off while I look at setting up a t-shirt store. (Yep, not my forte).
It’s been suggested I need to figure out cryptocurrency and receive donations in that format – but I just can’t wrap my head around that, or how I’d manage the process of collection, conversion and passing to The Kids’ Cancer Project (they don’t touch it). When I started out, I figured it could all be online and I wouldn’t have to worry about anything but the walking.
But at a minimum, cash donations have been a major consideration and something to factor in. At least it’s easy. I take a little video with the person’s details, take the cash, and when I get to a shady or quiet spot I just process them (making a donation myself, you might see “Roadside” next to somebody’s name on the charity page (https://captain-australias-big-walk.raisely.com/) but it’s actually a donation against my credit card and cash into my pocket.
So it’s all a bit more complex than I’d first planned, and I’m just an old boofhead.
I *THINK* I’m a smart person .. maybe some chemo-induced cognitive decline, but still smart – but playing around with one of these t-shirt websites (where a company, in this case Tee Junction in Melbourne does everything, but I have to create a vendor site and the designs), this was my best effort:
I’d absolutely welcome any feedback – I’m going to try and find a designer willing to work for free (COVID killed my travel insurance company, and all profit goes to The Kids’ Cancer Project).
So that’s a project to look at when I’m on a rest/family day.
Tomorrow I’ll dress up as Captain Australia again, and walk out to Jindalee where I’m planning to buy a solar blanket (small) to add to my kit to make sure I’m as independant as possible. There will be some points in the BIG WALK when I will be away from towns for up to 3 days, so I need to carry enough water, and the solar blanket will help me make sure I can stay in touch.
Its 30 October not 30.11 that’s typo / old man doddering / chemo-induced cognitive decline.
Just a brief heads up that tomorrow I will set out from Coomera and walk down to Broadbeach.
I’ll approach it as if it were part of my BIG WALK, try and get better video, share the experience better than anything I’ve done to date (fingers crossed).
I’m also hoping the forecast is on-the-money, as thunderstorms are predicted, a bit of wild weather, so with the wet & the heat it will be a bit of an endurance walk, and a chance to see how well my equipment resists the weather.
Oh dear. I just realised that Captain Australia’s BIG WALK (For The Kids’ Cancer Project) starts in 2 months. Time is whittling away on me, in just TWO MONTHS, I hit the road !
Was out practicing again today, and I think the stream’s technical quality was pretty good.
I just need to get my act together in terms of what I have to say and how I say it 🙂
It’s not perfect, but finally one of these practice streams that I didn’t completely stuff up in some way (technically, I mean – I *do* ramble like a crazy person covering topics like objective reality, religion, extremism, some pretty wide and varied stuff.
Captain Australia Online (and THE BIG WALK) 