Hrm.  If the clue only loosely relates to the answer, there's going to be trouble.   If the answer is something like "unicorn" (because a unicorn is not human), I can't promise respectful adult behaviour going forward. ... View more

Obviously there's an (A).  Don't lie to me.  (A).  I said (A) !!!   (A) !!!!! ... View more

Thanks for sharing that, sorry if it was difficult for you.   It's funny, because the question really is just about faith - whatever we say we've experienced can still be rejected by someone else, saying that it was an oxygen-deprivation hallucination, or a narrative fiction created by your mind in it's final moments, blah blah de blah.   For my part, if ten credible people sit down and tell me about out-of-body experiences that they've had, and that they believe those experience were authentic … well, I'd incline to take them on face value and shape my own personal viewpoints accordingly.   Parking aside death - even just the process of dreaming is fascinating.   Some people say they've dreamed glimpses of something yet to happen (I've had one or two like this, but can't hand-on-heart say it wasn't a weird deja vu trick of the mind).   Others will say that it's the mental equivalent of farting - passing unnecessary short term subconscious thoughts that you don't need to store...    It's funny, as human beings we are best when we try to relate to each other and understand one another and our common experiences … BUT … I think the final end-point of any philosophy is pretty-much that you can't ever really be certain of what's real.  Objective reality simply may be an illusion and all of the known 'facts' in your life just lucky constructs.   See a ghost.  Meet God.  For me, that's the back-handed gift of Cancer - you get to explore high concepts like this, and potentially have that "doorway" moment .. where you MAYBE pass from one reality into a new one.   Personally, I hope it's something like Gandalf says "Death is just another path, one that we all must take. The grey rain-curtain of this world rolls back, and all turns to silver glass, and then you see it.  White shores, and beyond, a far green country under a swift sunrise."   Or we may just be evolved monkeys, die and get replaced by new monkeys 🙂   Me personally, I believe there's something more, some spiritual meaning and process underlying all this grim old reality around us.    ... View more

Good luck, dude.  Soldier on. ... View more

The hospital staff (nutritionists, OTs, etc) will urge you to eat as long as possible, but the mucositis problem isn't just something you can bash through (if you have the rancid taste one).  In fact, trying can cause you longer term issues with food aversion.   It's tricky, they want you to eat so that you don't lose muscle memory, forgetting how to swallow, as re-learning how is an effort .. BUT .. many of them aren't conversant on the rancid taste dysgeusia and IT can also cause problems with your swallow - where you get a kind of heightened gag reflex from pattern-based-food aversion, that kind of thing.  Somewhere in there, is a solution that fits the individual - which might mean they can tolerate sips of water but not more substantial foods … for me it was total PEG dependency for (cant remember exactly) something like 4-6 weeks, maybe longer.   I can only offer one perspective, and untangling the viewpoints of me, doctors, nutritionists, family, himself, yourself … and deciding what to do is a challenge .. but if he's vomiting, it's counter productive to force him to eat.  With the PEG tube, you can get large-size syringes from most chemists, and it isn't really so hard to push in 200ml at a sitting .. you just get your water/formula/whatever, in front, and push it down slowly and patiently.  10ml, pause, 10ml, pause.  Line looks murky, OK push some water down.  Pause.  The feeds took me a while, every couple of hours I was pushing down 200ml or so either just of water, or water+protein formula.   If he isn't overweight, you need to have a front-foot forward on this as his body will already be cannibalising itself - eating away at muscle etc.  So, keeping his weight up is important (unless he's a bit of a fattie, in which case you have some lee-way) - so I'd sit down and do the math on what will allow you to introduce into his gut each and every day:   - 300g of protein - 2L of water - 2500ish calories   A musashi muscle recovery protein shake has about 250 calories and 32g of protein per serve (about 400ml)   You could set a timer, and every 3 hours, ie 8am, 11am, 2pm, 5pm, 8pm, 11pm, push down a serve - with that logic, he'd get all his hydration needs + 1500 calories + 180g of protein.  It's not ample, but it is a shit-ton better than nothing, or vomiting up a bunch of soup.  Three hourly isn't too demanding.  If he gets used to it and can handle more, you push up the calories etc accordingly.  Musashi shakes may not be the best product, but I researched it at the time and the numbers were significantly better than the other formula and hospital products.  Need that healing protein !   You'll be in for a surprise - you can actually take formula via PEG and even end up vomiting it out via mouth (with rawness and pain), because of the mucus/cough/sensitivity.  BUT .. with caution and care you can keep the tube feeds down ...   And lets face it .. it's a helpless time .. taking control of getting nutrition/hydration/protein into the body is the one thing you CAN control.  Just educate yourself on tube care and all that stuff.  Always flush it with clean water after use, etc etc.   Hydrated and with some protein/calories in him, you may find that he starts to feel a little bit better overall.   THERAPY:  no idea, sorry, I do remember with the whole cancer orientation, they gave me two things that might help: - a contact for a CANCER CARE person, a kind of hospital liaison .. could call them and ask about counselling - they did have a kind of group intro session with a psychologist, who went into managing depression, all that stuff (the ultimate irony of a cancer patient committing suicide , I guess).  There is definitely a resource attached to the hospital organising your treatment, just need to research it and reach out - NOTE:  the staff here .. they have resources tips, counselling lines, all that jazz, so you could look at the resources on this website too.   For me, it's bullshit, it's not helpful to talk to a professional person and manage my 'feelings', heh.  I'm just wired that way (too independent).  Be mindful that if he doesn't WANT it, don't push him.  Be there to help him, not add weight to his burdens, you know ?  I know as a partner, you suffer as much as he does, but in a different form .. I'd just humbly suggest that you don't project your own expectations/preferences/anxieties onto him, but rather take a good clinical look and be the strategist and general.  If he's struggling along and really in the trenches, maybe having you there as a rock is exactly what he needs to get through.  By researching all this stuff, I get the feeling that's exactly what you're trying to do.  Just be mindful that if he appears to want to curl up into a ball and sleep for 3 days, that may be exactly what is best for him .. and you just make sure he gets to his hospital appointments.   Maybe having you sit, hold his hand … who knows, maybe that's something he needs.  Not discussion, just an ear there if he wants it and no pressure if he doesn't.  Maybe a chance to vent, cry, scream.  Maybe an indication that he doesn't have to PLAY IT TOUGH, maybe an invitation is what fits his particular character.  It's all about finding the right unique recipe for him.   DISTRACTIONS:  the riddle of this bit is … finding the right distraction, but not trying too hard.  I reckon if you try too hard to find distractions, it can actually have an opposite effect and be a source of stress and frustration.  What I'd suggest is .. when he was not sick, think of that thing he'd do when he had all the time in the world and no particular problems.   It could be just going full-blown couch-potato and watching every movie ever made starring Bruce Willis.  If that's his thing, then let him zombie out in front of Die Hard 1-15.  Somewhere there has to be something that doesn't create stress or a sense of effort … sounds like an active guy, lets say he loved boxing .. well, he cant do that right now obviously .. but you could buy an XBOX and the latest boxing game.  Even though it might seem immature and not within his normal tastes - playing a game in an area of interest might help him.   Dunno, just throwing words out there in case something sticks to the wall.    Cancer is an absolute shit show, and I sincerely doubt there's any general approach that can minimise the suffering a patient will go through.  Navigating through the next couple of months is going to be really tricky, and it sounds like he's struggling.  I hope you can find ways to help him through.   Just bear in mind that it's the TRYING that matters.  We value outcomes, sure.  And of course whatever you try .. well, we all want it to work.  BUT cancer can be a very isolating disease.  It doesn't just try to kill you physically, it tries to kill your sense of hope and place in the world, your emotional balance.  The fact that you're by his side and so concerned speaks volumes, and I reckon knowing that and seeing that (even if any given tactic doesn't work) will have an overall positive effect on his morale.   Good luck !  Sorry if any of my rambling is more annoying than useful.   I hope your and his suffering that lies ahead is no greater than your respective abilities to handle it. ... 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G'day - sounds like basically the same disease profile as mine.  Not sure about the "He hasn't even vomited from chemo" remark though, I became a prolific vomiter, and even developed a skill of being able to vomit up phlegm and mucus in the airway while keeping stomach contents (inserted via PEG) down.   Best thing is to point you toward a thread I started in "Treatments and Side Effects" in detail it goes through the stages of what I directly experienced, and has a lot of tips and ideas about how to get through the different challenges that came up with each new milestone.   He's deep in the trenches now, and it will get worse before it gets better.   What I did (which doesn't necessarily translate to what he should do, just adds context):   At that point, I would NOT try eating by mouth.  I had a thing called "rancid taste dysgeusia" where anything in the mouth has a poisonous and toxic sensation, even water and saliva.  I became totally PEG dependant for a few months.   Every 4 hours, I'd put down a certain amount of water, ensuring I got 2-3 litres per day. I'd put down musashi protein shakes, aiming to get a heightened amount of protein to enhance healing.  The normal goal for protein is something like 0.8g per day for each kilo of weight .. so if you weigh 100kg, try to get in 80g of protein .. BUT if you are healing and under duress, you are supposed to get 3-5x that amount .. so if he is 100kg you'd want to get 300g of protein.  Only way I could do that was with shakes inserted via PEG.     After hydration, protein then nutrition were my priorities.  If he is already at peak weight or underweight you should wind calories in as a priority, and soup just won't do it.  What I did to try and maintain some weight was get high calorie liquid foods, for example custard, and insert via PEG.   I'd also suggest reading some literature on PEG safety.  The hospital only wants you to insert formula, but anything that you can liquify to a watery consistency you can insert via PEG.    I'd be crushing his medicine with a mortar and pestle and inserting that via PEG also, if everything is making him vomit.   You just can't afford to vomit - the pain is tremendous, unmanning, it will suck the hope from you if you let it.  But you also can't afford to lose the hydration/protein/nutrition.  The main reason they put the PEG in is to prevent hospitalisation due to malnutrition and similar - which is a reality with a person going through this kind of treatment.   Treat each day as a day of warfare, and get through it.  Do your best to stack up whatever ammunition best helps you win each day.  Distraction is important - things he loves .. whether it's music, books, computer games … whatever slothful thing he's never quite been able to throw himself into (for lack of free time or whatever), now encourage him to hurtle himself into that pastime.   You need to get through the next 6 weeks.  It is bad now.  It will probably get worse.  For me that darkest days were the 2 weeks directly AFTER treatment finished.   Good luck. ... View more

Mate, that's one that only you can decide.   Me ?  I'd take the treatment.  Pain is temporary.  And so is life.  The treatments represent you fighting to prolong your life, which the cancer would otherwise claim from you.     No doubt they probably build a 'safety margin' into these things .. but they base the treatment plans around a 'duty of care', ie what is the most scientifically balanced proven orthodox approach to treatment.  I had 35 treatments, it seems to be a universal number .. 7 weeks x 5 times per week.   I don't know why that is, but I trust that it was a conclusion reached based on data.     Given that, I personally would take the short-term pain on the basis that …. if I chose to NOT have the treatments, and the cancer was NOT beaten, I'd always wonder if it were my fault.   Fight for life 100%, soldier through the side effects, that would be MY approach.   But mate, you need to decide for yourself.   They do prescribe morphine based medicine at this stage of treatment, and I guess it's for a reason.  I avoided taking it myself (my mother was a heroin addict, and I didn't want to invite any open doors into my own life, in case I had some kind of hereditary weakness).  But I'm also very stoic with pain.  I remember the doctor looking inside my mouth and asking if the morphine based pain meds were helping me manage my pain.  I said - "I'm OK, I've just been taking Panadol every 4 hours, that's keeping it under control".  He was clearly flummoxed and puzzled, and said "you should be screaming with agony right now!"   That's for context .. so when I say "soldier through it", it's from the vantage point of someone who (I guess) has a pretty high pain threshold.     If you were family, and non-compus mentis, and I had to decide FOR you, I'd be asking the doctor what kind of aggressive pain relief were available (I think it's all exacerbated by the thrush, and you may find the pain becomes much more tolerable after that medicine starts working).  If they gave me confidence that we could manage the pain, I'd go ahead with the treatments.  If there was any doubt .. I'd … struggle with it, but probably still go ahead with the treatments, and sit with you through the aftermath until it got better.  (Knowing that it will, at some point).   Sorry mate, mostly ------ it's a great big DUNNO from me, with a heavy side-dish of … I'd lean toward treatment.   I'd also ask the doctor if the treatments gain power over time .. it may be that treatments 1-20 are .. kinda .. primers, if you know what I mean .. softening the soil.  Treatments 21-30 are moderately effective and represent about 40-50% of the effectiveness/work.  And the last 5 treatments represent 50% of the work .. meaning skip 2 and your treatment becomes 20% less effective.  THOSE ARE JUST MADE UP EXAMPLE NUMBERS.  But I reckon they may have some kind of mortality data somewhere that would help you balance your decision. ... View more

Holy Shit mate, that sounds terrible.   It's totally outside my experience, sorry - hopefully someone else might have some kind of insight.   I've had mouth small ulcers before (prior to cancer, I mean) - and despite the pain, the thing that did it for me was to apply salt directly to the wounded area.  Hurt like absolute hell in the short term, but then that naggy, itchy, constant discomfort would go away for a few hours.   But that doesn't sound even remotely close to what you're experiencing.  The only other thing I have is that my grandma would always urge me to eat berries if I had an ulcer - strawberries, raspberries, blueberries .. I did a quick look online and it did say (as a home remedy at least) that certain foods help with ulcer prevention & curing .. and heavy-antioxidant stuff like berries was on the list (so strangely enough grandma's may actually know a thing or two)   I have seen the direct relationship between food & suffering/healing - for me, it was horrible leg cramps after the chemotherapy, but I read somewhere that a shortage of potassium in your diet can contribute to the cramps - and when I started taking the pills, strangely enough the cramps went from several daily to once a week (ish).   Just in case there's no other source of input, I did have one other thing that might be a clue - having suffered damage to the mucosa myself, I understand that ulcers inside the mouth actually reflect damage to the mucosa - so mitigating all the things that can contribute to inflammation/infection might help .. like dryness, etc.  Along that line of logic, there's that "magic mouthwash" mentioned earlier in the thread, that is a medicine designed to apply a lining to the mucosa so that it can heal.  As a treatment for mucositis, mileage can vary - but the logic of it seems sound and might apply to your situation .. if the ulcers are a result of the lining being prone to infection etc, gargling and swallowing the mouthwash may apply a protective layer.  (The magic mouthwash was also supposed to reduce the pain, it had a numbing component).   The idea seems OK to me - the pain is a result of inflammation and infection, the mouthwash applies a protective layer so the area can heal.  If you want to check it out, here's a starting point:   https://m.wikihow.com/Make-Magic-Mouthwash Sorry mate, that's me completely tapped.   These medical issues that are a bit off-the-radar for the doctors are especially frustrating, because you just have to kinda wade into the high grass yourself and start searching around. ... View more

Yes mate, the white stuff sounds like it's almost certainly thrush - basically a fungal infection of the inside of the mouth.  The good news is that it's easy to treat.   I actually experienced thrush myself, and when it's combined with slowly healing rancid mucositis, it's pretty gross - casting my mind back, I think the remedy was something you had to gargle and swallow, which can be uncomfortable .. but it clears up pretty quickly.   The main long term problem is nerve & muscle damage plus the dry mouth.  The rancid taste, pain, that all goes away.  The mucositis goes away, your mucosa just needs time to heal.  But the dry mouth .. well, for me it got a little bit better … 3 years post-treatment, I still wake up in the morning with a cotton-mouth dryness .. and because of it, the mucus clings to your throat, so you still have to cough and spit up some pretty gross stuff fairly regularly.   A couple of years out, I have these awful neck cramps, my neck can feel sore and lumpy, and it's flashbacks to the original cancer diagnosis (but the doctor says it's just underperforming lymph nodes combined with damage to the nerves and muscle).     But for me, the very worst time was that first few weeks out of treatment. A month out, things were a little better. 2 months out, somewhat better. 3 months out, I still felt like shit - but it was reasonably better. From there on - well, you just become more and more human again as time drifts by.  You just have new problems to adapt to ..    … but that first period post-treatment is the worst.  You just have to hang in there. ... View more