topic What survivorship looks like for me: Captain Australia's BIG WALK in Living with and beyond cancer

What survivorship looks like for me: Captain Australia's BIG WALK

CaptainAustrali — Sat, 22 May 2021 00:57:33 GMT

For me, cancer has left scars. It failed to kill me (so far) but it tried to take away my health and my hope. After treatment, I slipped into a kind of 'post cancer limbo', that most survivors can probably identify with. I felt I was suffering, alone, and underperforming in all aspects of my life that were important to me.

So .. winding back ... I left home when I was 15 years old to escape a bad domestic situation. I slung a pack over my shoulder and walked from Brisbane to Sydney (about 1000km). That was my first BIG WALK, and it helped me discover myself, to walk toward hope and healing.

It felt a bit like walking, whole and healed, from the hospital room where you fully expected to die. Whilst suffering from the post-cancer-blues, I wanted to recreate that feeling.

So my cancer diagnosis was in September 2016 - invasive head and neck cancer. They gave me 6 months to live, but a 40-60% chance I could beat it with chemoradiation. I resolved to fight. And I won.

But cancer doesn't really have winners, it's a game where everybody loses. I spent the next 4 years slowly slipping into an existential depression. Only the light of the love from my family kept me able to manage day-to-day living. I put on 50kg+ in weight, largely due to my radiation induced thyroid damage. (I was under-eating, I can no longer fully taste food due to the chemotherapy).

From December 2020, I decided to fix myself up, to reach back into my past as a way to empower my future, and take another BIG WALK, in search of hope and healing. At first I just wanted to negotiate it with my family, sling a pack over my shoulder and GO. A kind of pilgrimage. But I realised that with the right approach I could use it to support a cancer charity. This led me to commit myself to CAPTAIN AUSTRALIA'S BIG WALK, to raise funds and awareness for the Kid's Cancer Project, an Australian charity that focuses on science & research into the prevention, management and cure of paediatric cancers. It's a massively worthy cause.

One of the worst things about my cancer treatment was not the gut-wrenching side effects, but seeing children waiting in line for the same treatment I was. It shook me to my core.

Anyway, just by starting to walk forward ..... that flicked a switch.

I feel as though there's two aspects to my BIG WALK .. the thing I'm dong for the charity (Brisbane -> Melbourne 26 December will take me like 10 weeks).... and the larger BIG WALK from being broken and lost .. to healing, wholeness. (And that's a big walk you can take too).

Suddenly, I'm healthy. I'm walking every day. I've lost 40kg+ so far. I have hope. When I think of cancer, it's like thinking of a toxic ex-partner who tried to destroy my life, but is now well and truly in the past. I don't think about it in terms of an enemy hiding away in my future ready to attack at any time.

I will leave for the BIG WALK on 26 December 2021, and I'll walk from Brisbane to Melbourne (route will be 2000km+). I'm going to sleep rough. I'll be dressed up as a superhero. That's what cancer survivorship looks like for me, and it is absolutely the moment when I stand up and start moving forward. Once I finish that pilgrimage, for better or worse, I'm done with all this post-cancer suffering. I'm alive and whole again.

So yeah, THE BIG WALK is in the hopes that:

a) seeing me fix myself and walk toward hope will help others who are trapped and broken do the same
b) to raise money and awareness for this hugely important charity
c) for my own personal spiritual outcome - I go seeking healing. It's a kind of pilgrimage where I will strip everything back to walking, eating, finding a place to sleep.

I will sleep rough. I will have no help. No planes, trains, automobiles (the only exception being a ferry to cross a waterway where there's no bridge). It's going to be a Mad Quest. If you want to team up and join together for a leg .. like if you're in Brisbane, Sydney, Melbourne or anywhere in between and want to throw in a 10k, happy to see if we can make that happen 🙂

Anyway, for this charity, I've taken a video showing me when I was at my most broken, just on the cusp of fixing myself up. And it shows the months that follow. I thought it might be helpful to other people here in the same situation: https://youtu.be/1UTpafavA04

It will be hard to watch, but the underlying messages are simple:

- hope is available to you

- even if you feel broken after cancer, you can come alive again

- if you have chronic health problems (and I had bunches!) you can turn things around

So yeah .. that's it. I've gone, over the past few months from utterly broken, bereft of hope, lucky to have survived an aggressive cancer, but otherwise still stuck in a cycle of suffering and fear .... I've gone from that to ......... hope. Restoration. Coming alive.

I'm so strong right now, so powerful. So .. zen. So together. It's not endorphins from all the walking, it's not the false euphoria of a bipolar person, it's a true, genuine place, a post cancer plateau that you can reach. Yep - if you're suffering, this is available to you too !! 🙂

Try community service. Try walking. Try singing. Dancing. Reach for hope, however it looks for you.

This is the charity web page. I know the superhero stuff is pretty goofy, but I'm hoping to get national/international attention with it, bring as many people toward the important charity as possible.

Captain Australia's BIG WALK (toward hope) for the Kid's Cancer Project

If there is anything you can do to assist with that, I'd be well and truly in your debt.

Re: What survivorship looks like for me: Captain Australia's BIG WALK

LindaG — Sat, 22 May 2021 01:18:03 GMT

I loved reading your life story. Well done for moving forward. It’s an emotional roller coaster that’s for sure. Have fun planning for December. You are already a super hero 💜 Linda G

Re: What survivorship looks like for me: Captain Australia's BIG WALK

CaptainAustrali — Sat, 22 May 2021 01:32:52 GMT

Hey, thanks so much for your kindness, Linda !

The dark places - anyone who has had to face cancer can relate to that.

I really hope that someone can see the high points as well, and take hope from that - because it's available to us, if we're lucky, brave and loving enough to get there. 🙂 🙂

One time on these forums (around valentines day) I remember writing a post that "Love is the Opposite of Cancer", and it resonated at the time. It still feels true. But you know what ? Now I think it's HOPE. Hope is the opposite of cancer.

Or maybe Love and Hope are the same thing.

All the best !

Re: What survivorship looks like for me: Captain Australia's BIG WALK

Livingwithhope — Sun, 23 May 2021 11:15:48 GMT

This i s just awesome, all of it🌝🌿💕

Re: What survivorship looks like for me: Captain Australia's BIG WALK

CaptainAustrali — Sun, 23 May 2021 12:33:28 GMT

Thanks for your kind words. From around July, I'll be seen walking around Brisbane dressed up as a superhero, trying to promote the charity and drum up some donations in advance of the big walk (which will take place from 26 December ... my eleventy-first birthday ... until .. sometime in March). Should be good for a giggle 🙂

Re: What survivorship looks like for me: Captain Australia's BIG WALK

Livingwithhope — Sun, 23 May 2021 13:50:59 GMT

Eleventyfirst?😅

Re: What survivorship looks like for me: Captain Australia's BIG WALK

CaptainAustrali — Mon, 24 May 2021 01:01:47 GMT

Sorry - ha, the eleventy-first thing ... well that's a Hobbit tradition of starting a Mad Quest on your birthday, which usually involves a long and strange journey. Sorry, I first read Lord of the Rings as a child, and loved it, and since the movies made it mainstream popular, I thought I could get away with nerd references 🙂

Bilbo Baggins set out on a journey when he was in his older age, and left on his eleventy-first birthday (Hobbits are long-lived, but count weird, so 111 .. )

I don't have any magic rings or dragons to fight though - for me the BIG WALK is a simple metaphor for hope. Finding it, sharing it, walking toward it.

Re: What survivorship looks like for me: Captain Australia's BIG WALK

Livingwithhope — Tue, 25 May 2021 12:10:49 GMT

Dear Eleventy, Are you happy to send me the link to the video you mentioned? Cheers

Re: What survivorship looks like for me: Captain Australia's BIG WALK

CaptainAustrali — Wed, 26 May 2021 05:26:44 GMT

Sure, it's right there in the original post:

https://youtu.be/1UTpafavA04

You can also reach it on the fundraiser webpage: https://captain-australias-big-walk.raisely.com/

Thanks for your interest - I'm hoping I can help at least one person, and in my most happy dreams the funds raised helps to save the life of even one child.

Re: What survivorship looks like for me: Captain Australia's BIG WALK

Suzi13 — Thu, 08 Jul 2021 10:55:58 GMT

Hi, I just watched your video, I can't wait to see your progress and follow your fundraising adventure.

I've been following you in here for a few months now and it gives me hope to see your new found enthusiasm for life. I'm 6 weeks out from surgery for scc, which involved partial glossectomy, trachy, neck dissection and tongue reconstruction using a wrist flap. I'm obviously still healing but was feeling a bit 'flat'

I'm so glad I read this survivorship post!

Hope is certainly a powerful word! Emotion! Feeling!

I'm one of the very 'lucky' ones, they got all my cancer with the surgery. It almost makes me feel guilty when I see what others have gone through! Yep, I've still got wounds to heal and physio and speech therapy to do but you guys boggle my mind with your strength and determination!

Keep smiling 😎

Re: What survivorship looks like for me: Captain Australia's BIG WALK

CaptainAustrali — Fri, 09 Jul 2021 06:45:44 GMT

Hey Suzi - thanks so much for your kind words.

I think it is really easy to let cancer's relentless attack grind you down - and when it's happening, it's like depression, it's hard to see the way out, hard to see any light.

But push through, 100% it can and does get better. Congratulations on beating cancer, I hope your recovery phase is shorter and better/less work than mine has been 🙂

Re: What survivorship looks like for me: Captain Australia's BIG WALK

CaptainAustrali — Sun, 03 Oct 2021 23:35:15 GMT

Hey Hey - I just wanted to share this story done by Channel 10's "The Project", I thought that people struggling with cancer might find it a source of hope. (Plus I just think it's weird, funny, defies expectations and norms, and in that - it kinda defies cancer: https://www.facebook.com/watch/?v=283341400051472)

Re: What survivorship looks like for me: Captain Australia's BIG WALK

sch — Fri, 04 Mar 2022 02:45:39 GMT

Hey @CaptainAustrali, how did your walk go? Maybe you're still on it?

Haven't heard much from you in a while. Hope everything is well for you.

-sch

Re: What survivorship looks like for me: Captain Australia's BIG WALK

HelenBeee — Mon, 11 Apr 2022 05:59:59 GMT

Im in that dark place at the moment and your story is what I needed Thankyou!

Re: What survivorship looks like for me: Captain Australia's BIG WALK

CaptainAustrali — Tue, 12 Apr 2022 05:34:25 GMT

Youre very welcome.

I completed my walk - it took 84 days, and in the first grueling weeks, I was able to process a lot of grief, fear, pain - even from before cancer - and leave it on the beach. I now don't think about cancer much at all, at least as it relates to me - although I did meet a bunch of people on the road impacted by the disease.

A broken life CAN be fixed.

And we, none of us, know how long we have left, or what lies ahead - whether you have cancer or not, life is full of potential and should therefore always contain an element of hope.

I lost mine - but I won it back.

You can too.

The reunion with my family on the 84th day was a sublime moment, something I'll carry with me for the rest of my days. If cancer had it's way, I'd have been dead in early 2017.

Good luck.