May 2021
Hi There I originally started this thread almost five years ago, so I wanted to give a quick rundown (and also an update, because I've met some wonderful people in this discussion). FIVE YEAR SYMPTOM SNAPSHOT: All the stuff listed previous gets better. Take hope from that. Here's a quick list of stuff still in my life: - mucositis: there was some longer term damage to my mucosa lining, so there's an enduring sensitivity if I get anything stuck to the inside of my mouth or throat .. gagging/vomitting - saliva: it's like 25% of what it was pre-cancer, and will probably stay that way - taste: it's like 80% back, but some stuff has permanently lost it's taste. Eg french friest now just taste like cooked potato, regrettably - facial cramps - if you had head and neck treatment, you can wind up with fibrosis, nerve damage, lymphodema. Basically there's scarring and the lymphatic fluid accrues, and when it displaces stuff you can get cramps and spasms. DO YOUR NECK EXERCISES IN AND AFTER TREATMENT - swallow .. mostly good, but some minor impairment, a little compulsivity, I think due to the dry mouth - tinnitus: GET MENTALLY STRONG WITH THIS. It's as bad today as it was during the chemo, but you can develop the mental strength to zone it out almost completely (until you think of it, bah!) - vision/hearing: I think chemo attacks fast replicating cells, like your hearing and vision. I was 20/20, great on both aspects until the chemo, then straight after, a bit of a decline. Sure, I'll turn 50 soon, so it could be completely coincidental, but it started after chemo like the flick of a switch - THYROID: This is massive. If you're putting on weight, DO NOT ALLOW IT TO GET AWAY FROM YOU. It's so much work to turn the ship around. Head and neck radiation can induce hypothyoridism, and you need medicine to mitigate it. It's seriously something like 20% of H&N cancer survivors get this to some extent .. so if you see the scales getting heavier, jump on it. NOW, to some of the lovely people I've had dialogue with over the years: 1) I'm doing wonderful. End of last year, I came through the tunnel. Completely strong, mentally/physically/spiritually moving toward health/healing/happiness. If you like check this video out, it shows that journey toward hope and how I'm turning back the thyroid damage: https://youtu.be/1UTpafavA04 2) I'm committing this year to fixing myself, and at the end of that process, I'm going to dress up as the superhero Captain Australia and walk from Brisbane to Melbourne (2000km+ route) for the Kids Cancer Project. Sleeping rough, a real adventure. If you like, check it out 🙂 https://captain-australias-big-walk.raisely.com/
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May 2021
1 Kudo
Hi Everyone When I first wrote my original post in this thread, I was broken, but I didn't know it. I was in the ditches, struggling with the side effects of a very aggressive, life threatening cancer and it's treatment. And yet, I wanted to help you. I wanted you to know that you can beat it. That things get better. And they were. Every year things got a little bit better, but I wanted to write today and tell you two things that I think are very important. If you're grappling with a new diagnosis, fumbling for some kind of anchor, some kind of hope to hold onto - then I'm writing this EXACTLY for you. I was there, and it was horrible. I hope you find something helpful in what I have to say: 1) You can not just survive, but one day, you can THRIVE. I swear. It's possible to get through this horrible experience and actually come out the other side BETTER. I don't mean that in any "ra ra, I'm a cancer warrior!" way, but rather, if you do the work, look at death head-on, unpack the experience, you can get to an end point where you are a much finer, more compassionate person, who is more in touch with (or less in control of - haha) their emotions. That's available to you. Your life doesn't have to be in decline from this point forward. You can bloom again. 2) If you're a bit dim like me, that's a slow process. Be fiercely protective of your mental health. Value yourself. Don't allow the chronic health problems that can manifest after cancer grind you down. I did. For about 4 years following cancer, my main focus was my kids & my wife. I figured that if time was short, that was the absolute most important thing - above any other - to be there for them as long as possible, and to love and nurture and cherish them while I could. BUT - I made a mistake. By not focussing on my own hope, my own healing, I drifted into existential limbo. I was under-performing as a parent. Still doing a great job compared to most (I reckon, haha, I'm great!). But yeah. I allowed myself to become broken and didn't see hope over the horizon. Dont' make that same mistake that I did. So if you've seen a younger me telling you "This isn't the end". Those words are true, they're honest, and I realise NOW they've even more vital than I thought before. YOU MUST KEEP YOUR HOPE. NEVER, EVER, ALLOW THAT HOPE TO DIE. Mine almost did, it went down to a tiny little flicker. And now ... oh my god ... I tear up as I write this ... because ... it burns in me so strong, I know if I keep tending that fire, it will blaze for the rest of my life. SO yeah, using that metaphor -- hope is like a flame, it burns inside you. It's a basic human need. Cancer tries to extinguish it. Anyway, I made a video for you. I'll update it in a couple of months (I'm already down to 89kg, from like 137.5 in December). Cancer wrecked my thyroid. Gave me a heap of other problems, some pretty serious, some insidious (like the damned tinnitus). But I laugh at them. I'm fine. 100% absolutely fine. I've found my hope and my strength, and the absolute, vital message I want to give you is this: YOU CAN TOO. If you've just been diagnosed, I'm so sorry. It isn't the end. You're still alive. We, none of us, know how long we have. I hope you have a solid chance to fight. And I want you, please, to fight for your hope and happiness at the same time that you fight the disease. So this is me, walking toward hope: https://youtu.be/1UTpafavA04 And this is what I'm doing now. My travel insurance business collapsed with the COVID border closures, so I'm using a year to completely fix myself physically. Rebuilding physically, psychologically and spiritually, and then going on a 3 month pilgrimage across Australia. (For the Kids Cancer Project) https://captain-australias-big-walk.raisely.com/ But yeah, that stuff is just to illustrate that you can come alive, as I have. THIS ISN'T THE END.
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May 2021
5 Kudos
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.
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April 2021
2 Kudos
Hey mate - life holds no guarantees - the thing is that applies whether you have cancer or not. You have to move forward with as much hope and love as you possibly can. My advice is to be protective of your mental health, and really do your best to fend off the anxiety as much as possible (easy to say, I know). I was 44 years old at the time of diagnosis, invasive head & neck cancer, 6 months to live, 40-60% chance of curative chemoradiation. Three young sons - the youngest was 4 at the time I was diagnosed. It's a shit show, there's no pretending. And there's no guarantee you beat it, and if you do beat it, it wants to cripple you. Cancer doesn't just want to take your life, it wants to break your heart, destroy your hope, take EVERYTHING. Don't let it. You're still alive, and there's every chance you'll push through this, mate. I had a 50/50 shot, 6 months to live, and i'm still kicking. But yeah, my advice isn't to set yourself up psychologically. You'll shatter at the first news of recurrence, or hiccup in the healing trajectory. My advice is to work on your ability to accept - Zen up. Again, I know it's easy to say - but in my opinion your mental health is equal parts under attack - cancer isn't just a disease of the physical health. If you overlook that, you can wake up years after treatment, having survived, and realise you slipped into a depression. You never told your kids about the disease, your wife half-blamed you for it (or at least it felt that way), and when it was over just wanted to move on and forget it, even though you couldn't. You felt isolated and alone while sick, and that feeling stuck to you. I think your kids probably deserve to know - but you could downplay the prognosis. Kind of vaccinate them a bit against worry & grief - give them at least a small dose of it now .. otherwise if your health did decline it would hit them like a truck later. And they'd also have to deal with the 'santa claus isnt real my parents lied to me' aspect of withholding critical info, you know ? Sorry mate, just my two cents. I think our situations were very similar, and the thing to take heart from is that people pull through. You'll get a lot of encouragement, be told you're a warrior, that you're going to get beat it .. and when you're in the trenches, that positive stuff feels like lies. But .. the fact is .. you're still alive, and there's every possibility you'll come out the other side of this, buddy. But don't forget there are no guarantees for any of us, even the smallest child, bathed in the light of the love of their family, newly learning how to laugh, clap, sit up, crawl ... that little infant doesn't know how long they have, it could be hours, days, weeks (or hopefully a couple o hundred years). That's something we all have to deal with. If you allow the anxiety to take hold, it will be hard to dislodge, I promise. It's insidious, it'll dig roots. Push it back a little now, and it'll be to your benefit ten years from now when all this shit is a distant memory. And trust me, that's possible. I used to fret about my cancer almost every waking moment. Now I think about it maybe once every few days (in relation to myself), although I do think about it constantly (in relation to others, like yourself .. and especially kids - which motivated me to get involved with a children's cancer charity) All the best.
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March 2021
Hey Pete (and all) It's good to know you're not alone. The thing about cancer invisibility is that it comes in tandem with all the other stuff - you're fatigued, displaced, dealing with mortality - you feel stretched thin, vulnerable. So when people start tiptoeing around you in their little survivor's-guilt-avoidance-strategy ... it can make you feel almost like you're partway there to being a ghost. A kind of preview of the grave - it can feel a little like you're a ghost at your own funeral, people who once saw you clearly are gone or don't acknowledge you ! So it's good to know you're not alone, and it's a phenomenon that is more about THEM (the folks around you) than it is about you. One thing that's also good to know: it's temporary, you're in charge of it. I've spent the last 4 years waiting to die. I've been slowly allowing myself to become more invisible .. I guess our part of the deal is to unplug and withdraw, almost as a defense mechanism when we see/feel people pulling back. I was getting more isolated and bereft of hope. Today. I'm great. Really great. I'm exercising daily (20km every day), I've mastered the thyroid damage .. the radiation wrecked my thyroid and I put on 50kg post treatment, I've already (since December) gotten rid of almost 40k of that. And I'm finding productive things to do. (Captain Australia will take a BIG WALK at the end of the year, for The Kids Cancer Project ... more on that soon .. but basically I'm going to walk from Brisbane to Melbourne, sleeping rough, to raise money for TKCP - a charity focussed on research, prevention and treatment of paediatric cancers ---- I hated seeing kids waiting for treatment, it was the worst thing) So even if you fade to almost completely invisible, I go back to my original comment - you can CHOOSE to step forward and start singing. Even if it's out of tune and funny and you get odd looks, I think that's kinda cool. Sing, folks 🙂 (er, for those dim of wit, Sing is a metaphor for .. you know .. stepping forward and being alive, doing things that matter, investing in life and yourself, reconnecting with friends even if they have withdrawn from you, all that positive stuff, heh)
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February 2021
Hey Hey The cancer treatments are designed to attack fast replicating cells in your body (like cancer), but so targetted they also can damage your vision, hearing, taste, libido, pretty much every apparatus you use to engage and enjoy the world. That's cancer for you - it doesn't just want to take your life, it wants to take your QUALITY of life too. My vision started to decline after chemo (whereas previously it had been perfect, zero issues), and there may be subtle hearing impairment too (with the tinnitus, everything gets a bit drowned out anyways). I couldn't say definitively whether it's not a natural decline after coincidentally hitting the jackpot age where the downhill slide starts ... but yeah, I reckon the chemo played a big part in my vision decline, and probably your hearing too. (Cisplatin) What I'd urge you to do, if you had radiation for head & neck cancer - vigilantly care for your teeth. The way radiation interacts with bone is a bit different, and you notice a sharp and awful decline in your dental health suddenly after 3-4 years out from treatment .. so be as diligent as you can with dental care. Sorry mate, yeah, you're going to find side effects cropping up not just in the short term, but later on as well, just have to roll with it.
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January 2021
Hey hey - moving your body around is never a bad thing (unless you've suffered a spinal injury or other grievous harm!). Those machines are designed to build strength, and a bit of muscle is great - especially where it compensates for an area of weakness. For example, you have elderly folks with bone issues, osteoporosis, stuff like that, and research found that doing a bit of resistance (weight) training, the gain in muscle offset some of the weakness, giving them extra mobility. But me personally ? I reckon when a person is obese, walking is great. If you have the time for it. It's time consuming. And yeah, as to pure calories-in-calories-out math, you might be more efficient doing stairs or whatnot .. but walking is therapeutic, low impact, and it really helps with your internal processes. For my part, being morbidly obese, after spending the last 30 days walking 10km (or more) per day, I feel strong and fit, and it's great. Dropped about 10k so far too. Maybe I'm just 'obese' now and we can drop the 'morbidly'. The key thing is momentum. I can't give you advice on what you can/can't do or what you should/shouldn't do. If you get yourself in a mindset to tackle the physical problems, and resolve to do your best to be healthy, then you just take what you think would be 'hard' or 'felt a bit sore' .. and then if you can add an extra 10% effort onto that. Then it's about doing time (heh, like being in a special kind of prison). Make great, healthy choices for a month - you'll feel better - three months - you'll feel A LOT better - six months - you'll be a different person 🙂 I've got a laundry-list of post-cancer medical problems, not just the weight gain, and for the first time in 4 years, I feel like I'm getting stronger and healthier, and that's kindling a kind of hope in me - helping me climb out of cancer limbo. But yeah, I'm just a boofhead. I'd love to give you ever encouragement, but I don't know what's going on exactly with your body - ultimately that stuff is your decision, even the doctors can only ADVISE you. So I'd suggest you're absolutely on the right track .. give things a go, find what you're capable of, and keep moving forward. If you do too much or too little, the thing to remember is that it's all good. Healthy choices are better than unhealthy ones (like giving into fatigue, etc). All the best ! 🙂
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December 2020
4 Kudos
I just wanted to write briefly about my experience with cancer recovery, in case it resonates somehow with you, and that you may be able to take some strength from it. You see .. for four years now, I've been waiting to die. I didn't want to acknowledge it, but I have, I've just been spending as much time as I can with my kids, just neglecting everything else (including my own health), kind of pre-grieving my own funeral, I suppose. I imagine that's a feeling that many cancer survivors can relate to, to a lesser or greater degree. Thing is, I haven't really been able to admit it, let alone seek any help - but all the evidence points to me suffering a pretty severe depression. I've just taken strength from the light and love that I draw from my wife and young kids, and that's allowed me to kind of rise above it and make the monumental effort of performing the absolute bare minimum in daily self care. Realising I was a bad role model and underperforming as a parent was my PING moment. You see, a switch has flicked in my head. I spent a week or two grappling for hope. Inspiration struck me to do a long walk (something I did as a child, walking from Brisbane to Sydney - it was very liberating and healing, escaping a bad domestic situation), I thought I could revisit my past and echo that experience to empower my future. I started thinking in terms of problem solving and positives, nibbling around the edges of my problems, analysing them. Once I looked at the depression head on, I could no longer ignore it. So I flicked the switch. This past month, every ounce of spiritual strength I've accumulated in my life has fired up, I've been so strong and resolute. Instead of grappling for hope, it's fired up inside me. Undeniable. Strong. Mid December, I weighed 137.5kg. Yep. Thyroid and depression, I'd put on 50kg since treatment finished. My PING moment happened on the 15th or so. Today is the 29th. Today I weigh 128kg. I thought I could barely walk 5km without becoming fatigued. This past fortnight I've been walking 10km MINIMUM every day. Oh yeah, I suffer, oh yeah, it's hard. My thyroid medicine is finally in order, so I'm able to take the reins with my health. Intermittent fasting, exerise .. bang .. almost 10k down in like 2 weeks. It'll taper off, but my effort WONT. I'm pretty comfortable that within 3 months I'll no longer meet the criteria for morbidly obese. The thing is ...... we probably have this in common --- we beat cancer. The big C ! WE BEAT THE BIG C !!! What in the everloving eff is depression next to cancer. Cancer laughs in the face of depression. Depression is it's left kneecap .. an integral part of cancer, but c'mon, if we can beat cancer, we can SHINE, we can find ways to beat any lesser problem, of course we can ! If you're broken too, drifting a bit, without anchor, gaining weight, losing health, losing COHESION .. that PING moment is available to you too. That switch. I'll update you in 3 months and a year -- I'm going to be fine. I'm going to get my health 100% straight, no more whining about ... all of it ... leg cramps, reflux, tinitis, cough/vomit, etc etc etc etc ... obesity complicates almost every chronic health problem, so that part I *CAN* fix. And I'm just a boofhead. A weirdo. Definitely a boofhead. If I can turn things around this late in the game ... SO CAN YOU. I'm sorry, I'm just firing straight from the heart here (as opposed to firing from the hip ??) so ... just wanted to put it all out there in case it helps you. If you feel broken, but look at things head on, you can navigate to a place of strength. I guess that's my message. All the best
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December 2020
2 Kudos
Yesterday, Christmas Eve, was the 4th anniversary of my last radiation treatment. So I've officially reached an important milestone - 4 years out and no apparent recurrence. Thankfully, my statistical likelihood of recurrence takes a pretty dramatic drop now. I've had a shift in perspective, and for anybody looking for hope after just being diagnosed, take heart from a few things: 1) I continue to survive. You can too. They gave me 6 months. I'm 4 years out and hopeful of living longer. 2) If you get lucky and beat your odds, you're at a high risk of drifting into depression in the post-treatment phase. You realise that 'lucky' isn't a word that sits well with cancer. The disease tries to take so much from you, not just your life. I realise now that I've spent a few years in a bit of a slow decline. The side effects don't help, especially thyroid damage and weight gain. But ... and this is the 'take heart' bit ... beyond basic survivorship, the clouds can break and a little bit of hope can shine down on you. So yeah, I've felt a bit like a broken old man, just waiting to die. I didn't want to admit that to myself, but now that I'm starting to move forward, I can. I've been depressed, in a bit of limbo, just pegging time until I find out if the cancer will take me. Now, 4 years out, it's finally sinking in, not just academically, but into my bones, that I may get to live another 20 years, see my kids grow up. I've seen, known and understood that already, but now ... it's gone from aspirational to .. I dunno, the natural state of things. It's sunk in, and I've allowed myself to start moving on. Healthy living, lose weight, actively pursue happiness ... all of that stuff is creeping back into my life. So .. if you're here because you're freshly diagnosed and grappling for hope, some kind of anchor .. if you tough it out, and if you manage to beat your cancer, things get better. I think I'm on the edge of coming back to life ... it's a good feeling. All the best to you, I hope that somebody takes comfort from this - knowing you're not alone, and knowing that even the grimmest odds can be beaten. It isn't over yet, do your best, keep your hope alive as long as you can, and even if it withers - hang in there, the clouds don't last forever.
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December 2020
The best of luck to you (actually you don't need that, just a firm resolve). So instead of wishing you luck, let me wish you every happiness. Once you're rid of the excess 20k, you'll feel different. So many of the post-cancer chronic health issues a person can suffer from are exacerbated by weight gain. Even in the absence of physical problems, the weight gain can have an insidious psychological effect. If you just tweak your intake and exercise, you'll easily melt off 1k per week. 45 minutes of walking per day is around 400-500 calories roughly, which equates to 3500c per week (or half a kilo of fat), so if you tweak back your food intake by like 10%, or eat as much (or more) but shift to only healthy choices, especially veg - bang, that 1k per week happens easily, and a few months from now, you're a lean, mean fighting machine. We're all so internally conflicted these days, we give into weakness, hate ourselves, try a diet, fail, give up on it. My advice is to make a firm choice, count your wins, and be proud of them. Make a mistake ? No worries, move past it. Don't get caught in the cycle of losing your weight, just get it off and move forward 🙂 All the best, and have a lovely Christmas Day.
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