Mate, very similar profile - you just have to wait it out.  The weeks and months following treatment feel like a slow-grind, the first weeks for me were worse than any time during treatment, and it took a long time for them to start getting better.   There's stuff that will creep up on you too, like constipation as a result of the meds, if you're unlucky, that can get BRUTAL, really bad, painful, physical wounds in awkward places.   I'm six years+ out of treatment and can't open my mouth the whole way anymore, but .. can open it enough.   You just have to park your expectations and do the best you can with what you're given, mate.   My advice is to fight too .. to fight with genuine HOPE that you can improve the situation.  After treatment, I just lay down and kind of waited to die, and the psychological and existential ramifications were pretty extreme.   I had to walk from Brisbane to Melbourne (dressed as a superhero and raising money for kids cancer research) to rebuild hope and meaning after letting it slip so severely.  If I were mindful and fought from the outset, I might not have needed to take on such a flamboyant Quest. (not that I regret it, will actually go walking all around the perimeter of Australia soon - 16 July, check www.captainaustralia.online if you're curious - it has a kind of living diary of it all, what I did subsequent to cancer).   My two-fold advice is: 1) park your expectations, you just have to wait it out 2) that said, lean into your cure, not your disease.   Instead of trying every remedy to improve, every mouthwash, every quack cure and technique, try diligently to reduce cancer's footprint in your day to day life .. try and have fun, or do something meaningful.  You're still here.  Cherish that.  Do something with it.  I think that act, that choice to divert your focus elsewhere, does have a selfish impact in terms of reducing the harrowing wait and various harms inflicted by the treatments.   Oh and dont worry if you get a false positive at 3 months.  Having to wait another 2-3 months is a nightmare (I did), but after the horrendous insult your body has suffered, the scan can't differentiate between cancer and other harm and inflammation - so if you get a positive in the scan, dont freak out. ... View more

You'll hear from clinicians that you stand a fighting chance, and in your heart, you'll doubt.   You'll hear from friends, family and well wishing strangers "you got this", and you'll want to believe .. but doubt. The thing is, the absolute thing is - nobody knows, but you are STILL ALIVE. Every day that remains to you is yours to spend, and you get a chance, and you need to take it, to breathe life into the days that remain, not give them away to this insidious fucking disease. Hope. It's all about Hope. If you sustain yours, hang onto the possibility that you may yet survive and thrive ... the days that remain to you will be richer and stronger. The outcome may be something that we have to learn to accept. But frame that acceptance in Hope. I gave four years away to hopelessness, that doubt, that insidious creep.  The worry that every cough subsequent to treatment was a recurrence. Then I did that Captain Australia's BIG WALK thing (you can look at www.captainaustralia.online if youre curious).  I restored my hope.  I healed depression and existential crisis. And more than six YEARS ago now, I was given six MONTHS to live. But still here. That outcome is possible for you too. Don't give up hope.  Be strong in your mind.  If it feels like self-trickery, WHO CARES, take that optimism anyway.  You need to approach your cancer on the basis that it's a Dragon that you are perfectly capable of slaying.  It'll be tough, but you can come through, and you might even come through stronger and wiser, armed with hidden treasures found along the way... ... View more

G'day G'day   Would have been a pleasure and honour to meet up, as it happened, heaps of people came out and joined in the walking here and there - never massive crowds (it was still in the darker days of covid), largest was about 8 of us walking down a decommissioned train line near Newcastle.   Wrote up a blow-by-blow journal with videos and pictures, if anyone is interested:  www.captainaustralia.online/journal   The next walk will commence on the 16th of July, I'll do daily updates and livestreams and such on facebook (@capsbiglap) and there's also info and a contact button here on the charity's donation portal:  www.capsbiglap.au   And yep .. it'll come in somewhere around 15,000km after I'm done, setting out from King George Square in Brisbane and (fingers crossed) arriving there 18 months later, less than 2 years at least.  If I hobble over the line 3 years later, less great, but still .. that's my mission.  Plan is a daily goal of around 35km, which leaves room to occasionally stop and recover from injury (in the case of the first walk had to do that three times, tick, leech and foot - which equates to about 4 rest days over 84 days and a rough average of 35km per day otherwise - so hopefully that math extends forward to the lap)   It's all my own strange way to recover from, actively defy, and then completely move past Cancer.  (And in doing that, try and assist others, even just by telling the tale) ... View more

I haven't been here at the Cancer Council forums for ... years now.   I graduated from the club nobody wants to join, I guess.   Since I'm back (answering a question), I thought I'd come here and share that I completed Captain Australia's BIG WALK, raised $165,000 for paediatric cancer research, and healed the existential crisis I suffered subsequent to treatment.   I dealt with a great deal of unprocessed grief, fear, anger, sorrow, and am profoundly better for it.   I just wanted to tie that back to a simple fact - in 2016, I was given six months to live.   If you're reading this, found this thread because you're grappling for hope - and it feels like exactly that .. a thread ... thin and fragile .. take it.  Take it.  Grow it.  It will help get you through.   Cancer may take your life.   But not today.   PS:  I'm going to set out on Captain Australia's BIG LAP in July.  The walk was so important, it helped people, I've felt it's my calling to do something bigger, bolder and bonkers (the essential vitamin Bs), if you want to learn about it: www.captainaustralia.online   All the best. ... View more

Cancer is a shit show, but it can also lead you to your people.   First and foremost YOU be there for your sister, comfort her, lift her up, and if she need space, give her that, just ... care.   The friends may not be cruel, they simply may not have the maturity or tools to deal with it, so go into "I'm a busy ghost" mode because .. well .. gutless, you know ?   Forgivable, but certainly not admirable.   Thing is, pushing and pestering won't help, it'll just get their backs up and make the whole thing worse for everybody.  My advice is to talk to her closest friends, remind them that she isn't doing well, and let the rest happen as it happens.   If your sis needs wider support, then you step in and lift her up.  Find ways to firstly figure out what she needs, and then get it to her.  Maybe she feels isolated and alone .. so you start socialising a bit with her, find little ways to remember that life can still be FUN.   Cancer is a shit show, but it isn't necessarily the end, and even when it is, you still get the chance to colour in those last pages of your life.  Don't let hers end in a sad little scribble, take her hand, sit down with her, and figure out how to write the next few pages.   Also - don't project your anger and distress into her life.   She's the person dealing with a profound illness, you kinda need to pull your shit out of that and focus on her.  Sure, it can be compassionate and empathic to share her distress, but it can also AMPLIFY her stress, her worry, "dont my friends care about me any more ?"   It can be more complex than that, and at the end of the day - it's a piece of string that if you pull on it, you'll just get to a point where eventually you get poo on your fingers, best to just leave it dangling, there's nothing productive there.   Quietly talk to the friends, and if that doesn't help, roll up your sleeves and get stuck into helping her with her needs.  Navigate to new friends, support groups, whatever is required.  Maybe just stand up comedyon netflix, who knows ... just find ways to improve her situation and diligently help her with them, if that's in you.   All the best. ... View more

I dont have experience with your exact class of cancer, but I can speak to managing the terror.   In the immediate short-term you need to compartmentalise.   (My advice anyhow)   Don't let the mortality stuff, the I'm scared stuff, get too much bandwidth, you can't control what you can't control and the absolute key now is getting through the process.   You have to surrender to that, lean into whatever aggressive treatment is available, and roll your dice.   To manage your daily living, compliance with your treatments, medicine, whatnot - the better you are at doing that 'knuckle down and get through' thing, the better.  You need to get further down the road.  You can deal with the existential stuff later.   That to be said - don't ignore it.  If they say there's only a 30% chance of treatment, then you spend time with the people you love, you write up a will, do all the practical stuff you need to do ... but the UNKNOWN is the worst part of the early phase of dealing with cancer, and my advice is to tackle that head on, and the way to do that is accept it .. you dont know, can't know and just have to push through until you do.   As to wider stuff ..   I had a six months to live 40% chance at treatment, and that was six years ago.  After cancer, I slipped into an existential hole, then I dressed up as the boofhead superhero Captain Australia and walked from Brisbane to Melbourne, raising $165,000 for paediatric cancer research.   It's not over.  You still have some time up your sleeve, and maybe more than you think.   You can still do beautiful things, celebrate kindness, make laughter.  You just have to get through the tunnel. ... View more

G'day G'day   I did a walk from Brisbane to Melbourne after (kinda) surviving (but being broken by) stage four cancer (six months to live deal, but I beat it)   It was 2200km+ and the thing is .. it was more than just some .. walk, it was a pilgrimage, and that's the most important advice I can give you - be clear in your purpose, be authentic.     Cancer research, until we pull the thumb out as a civilisation level, will always be in need of funds and support, and there will never be enough - so don't get too wrapped up in the financial performance of it, just call the charity you're helping and take their advice, and if you have friends or family, especially in the media or business, ask them to show support.  That's the main key .. ask.   I raised $165,000 for paediatric cancer research - for me I don't like how people fundraise for causes that impact them directly, or their family, like some celeb who supports diabetes because their aunty has it .. for me paediatric cancer research is righteous because .. well, no child should have to endure what we've gone through, it's just wrong ... and research is about the root of the problem, rather than dealing with the consequential harm, the societal harm, making wishes and all that, it's about solving the problem, improving and softening treatments.   But yeah, good on you for taking a Quest, I hope you find something on the road and inside yourself - THAT is the most important thing, doing it with a spirit of adventure.  And don't worry if anybody is looking, it needs to be better than the kind of virtue signaling stuff people do these days - be clear and pure in your own heart about your reasons, and the support will come in, I reckon.  And to have that purity you kinda need to talk about it - so my advice is to share your struggle as transparently and honestly as possible, because it might just help someone in a similar boat.   Sorry, those are intangible philosophical comments I guess as opposed to practical advice.   I'm about to set out (July) on total circumnavigation of Australia (15,000km trek), and I still have some pretty crippling post cancer problems.  I'm going to do it dressed as a superhero, because that's my way of consciously or unconsciously saying that we all need to superhero up and tackle the problems in our slowly declining world, we need to reach out and help ourselves and each other .. that kindness is the antidote to sorrow.   I think when you try to do something bold or unusual, you're probably also trying to make a statement, that's my other advice - if that's the case, make it with clarity .. and with a flourish 🙂 ... View more

Looks like the Cancer Council forums are a bit like the mafia .. you try to get out, but they find a way to PULL YOU BACK IN .. (um, that's from the Godfather 2 or 3, I think).  Cheers mate, I'll give them a comment below, although I'm preparing for a new quest of my own right now (total circumnavigation over 15,000km) given that Captain Australia's BIG WALK was a success (in more ways than one).  All the best to you ! If you're curious, I did a blow by blow journal at:  www.captainaustralia.online under 'the BIG WALK' ... View more

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. ... View more