Mate, I think your fight now is as much psychological as it is physical.   I hope that your prognosis improves, I hope that instead of words like 'palliative', words like 'remission' start to creep into doctorly discussion.   BUT, if they don't, I'd gently suggest that you put your hand firmly on the wheel and decide where and how you want the ship to beach itself.   We, none of us, know what comes next, but if you're facing the end of your life - it's not over yet.  You still have time.  I think if you are resolute in warding off the fatigue, the suffering, the grief, you could make sure that whatever time remains to you (whether it's days, weeks, months or years) has at least some touch of joy and dignity.   It's lovely that you have family with you, and that the medical people are helping manage your pain.     As a fellow cancer sufferer, I know how all of this stuff feels.   I'd just urge you to consider that we (all of us) have a dwindling amount of sand in the hourglass.  However much time remains to you, I hope that despair doesn't colour it too much.  I hope that you can find the mental strength to push through that, and embrace whatever time remains, and take whatever love and happiness you can squeeze out of it.   Enjoy your family, hold their hands, smile at them.  Let them read to you if it pleases them.  Tell them whatever it is you might need to tell them.  Try and be happy from one moment to the next.   And probably stop posting here 🙂 ... View more

"We all have today though and we can make it the very best day ever"   I think there's massive wisdom in that truism - at any given time, in any given moment, you have the absolute power to decide who you are.   The past, it's just an illusion, a tapestry of experiences that doesn't have to have the concrete hold on you (that it no doubt does).    The future is also an illusion, it's the 'now' just waiting to be born.  Fretting over the future is just a mis-spent NOW, and we, none of us, truly know how many 'nows' we have left.   The 'now' is so important, so crucial, and so often overlooked as we glance too heavily forward or backward, so often wasted.   We're still alive, we still have now - and we have the power to colour those moments as we wish.   Even in our deepest suffering, we can still laugh or smile, we can still touch somebody's hand in a compassionate way.  We are alive and blessed, and can choose to live our best selves from one moment to the next.  Even if we're dying, we have choice in how we face up to that.   I think cancer tries to steal that immense potentiality that is wrapped up in the NOW, by destroying our hope, by unsettling us and robbing us of our sense of place and permanence.  But permanence is an illusion, none of us and nothing we know is permanent.  What matters is now, and what we choose to do with it.   It doesn't matter if you're newly diagnosed, or have been fighting cancer for years - it's insidious and it does try to rob you of your hope.   But maybe even hope is an illusion, because it's all wrapped up in the future - something that is completely outside our control.   It's the NOW that matters.  We're still alive.  We still have time.   Don't let cancer destroy your now, and all those little future nows that are lined up in front of you.   If you can, strive to make them beautiful. ... View more

Just curious (now that a little more time has elapsed) whether we would need raincoats and gumboots if we plan to visit your house, or whether you're still essentially dry-humping ? ... View more

Hey Hey   In my opinion, this is one for the scientists, and whoever offers a point of view on it does not definitively KNOW.   Immunology is a major research area in cancer treatment, and is providing improved (and less damaging) treatment options for some types of cancer.  Great.   But that doesn't necessarily translate to immunity/metabolism preventing you from getting cancer in the first place.   From what I read, there's some kind of programmed death gene in all of us, some kind of marker that tells the body to start shutting down.  It's like that old saw about every cell in our body replacing itself over a 7 year period .. we're designed to rebuild and heal, but also eventually shut down.   Cancer is a mutation of healthy cells, that (just from a bit of reading) apparently is triggered by this programmed death process - and a lot of the immunology drugs geared toward treating cancer are designed toward over-riding this process (so that your healthy immune system can identify and fight the cancer).   Look, this is all just me as a layman interpreting science that is over my head .... BUT ....   That leads to the logical extrapolation that a healthy immune system doesn't necessarily specifically fight cancer.  The immunology meds are about MAKING THE CANCER VISIBLE to your immune system (and yeah I think also super charging the immune system).   So basically, this programmed death process, this mutation into cancer cells, is triggered (in my case apparently by HPV+), and it's a signal from the head honcho that it's time to pull the switches and go on vacation.   In my thinking, it leads that an otherwise healthy person with a supercharged immune system is just at risk of cancer as someone not (an oncologist said this to me, actually, when I was diagnosed).   BUT - eating all that healthy stuff and being healthy still FEELS great.   I just think anybody who asserts that they KNOW it will help you prevent cancer should be looked at suspiciously - likewise if they even assert it will help you FIGHT cancer (beyond how being and feeling healthier will help you).   I think it's all about that programmed death process, that trigger point where a cell starts thinking "ohh right, Im not meant to be here any more".  They kill those cells with radiation and hopefully they stay away.  But will immuno- medicine, hawaiian seaweed and all that stuff help ?   I guess the answer is probably a very definite maybe.   Our medical establishment isn't great in terms of being a source of knowledge - I've met with scientists to discuss things like autism, and for extremely intelligent people with a very rigorous protocol, they're like everyone else - flawed humans who don't like hearing that they don't know everything, or hearing viewpoints alternative to the narrative they've invested so much into.   So yeah - on the flipside, if the secret to preventing cancer is in some kind of SUPERIMMUNO stuff, the orthodox medical establishment probably will poo-poo it for as long as possible, until the evidence is just plain undeniable.   I reckon gene therapy is probably what we'll see in 25 years - where at risk persons are identified at birth and given a preventative innoculation of sorts.  As long as the zombie apocalypse doesn't happen in the interim. ... View more

Buddy (and other readers) if's not just America, but the health system overall, I think, that doesn't really recognise rancid taste dysguisia.   It's some kind of combination of physical/chemical elements, I think caused by the chemo - the radiation damage no doubt plays a part, but if I had to choose a culprit it would be chemo.  If you suffer it, you may have to combat pressure from the medical staff to eat by mouth.   With rancid-taste style of dysguesia, it's not like mind-over-matter and force yourself to eat even though you can't taste it.  It's like being forced to eat poison.  Bubbling, feces laced poison.  I took the approach of educating the dieticians and other staff, and they did their own reading subsequently, so it was all-in-all a positive thing.  But your mileage might vary, and you may feel bullied into trying to eat.  Which will have you vomitting up blood.   I think that the rationale behind refusing PEG installation may also be "mind over matter" .. if a patient is FORCED to eat, they will eat.  But with the rancid taste dysgeusia, you really can't.  They say there's a certain portion of hospital admissions (malnutrition, dehydration, collapse) for head & neck cancer persons who do NOT get a PEG installed, and it's my personal theory that if you interviewed some of these people, you'd probably find them describing that 'food tastes like poison'.   I think it's an un- / under-recognised condition, and if you have it, you just have to push through it. I'm not suggesting everyone should get a PEG whacked in before head & neck cancer treatment, it may be a fraction of a percent of people who get this form of dygeusia.  I think it needs to be studied and better understood.  BUT .. if you do get it ... the PEG will save your life, you'll possibly have to get nasally intubated or an emergency PEG surgery, once they figure out that you can't won't eat and they can't keep you on intravenous fluids forever. ... View more

Oh yeah, side-note:  once you can start eating again, for me it was sweet stuff like cream that I could taste.  Make sure to get your thyroid function checked, as if your metabolism is impaired you can very easily pile on the weight you've dropped, but in an unhealthy way - rapid weight gain of sloppy body-fat.  Even under-eating, with thyroid impairment you gain weight.  Just a cautionary thing. ... View more

Mate, I don't think the condition is very widely recognised (although there has been scholastic research to differentiate the different symptoms and kinds of mucosa damage).   I think anybody who hasn't directly experienced it will struggle, and has to work hard, if they want to understand it.  Even saliva, water, medicine, in your mouth tastes like it is somehow contaminated, your brain things that swallowing those things will be like swallowing a foul, rancid poison that may kill you.  If you try to swallow the wrong things the gag reflex can kick in and then, when you actually start vomiting, you can wind up vomiting shakes that you took via PEG out via your mouth, and blood and pain along with it due to the area damage.   It's a shit show.   In my experience, the medicines just weren't helpful, even the 'miracle cure' type ones like 'magic mouth wash'.  At least, not effective in the worst parts of the experience .. being the last couple of weeks of therapy and the first few weeks AFTER therapy.  Once I was starting to feel a level of recovery, I tried a bunch of things, but basically what it needed was time and healing.   If anything, this would be my guess, science wise, on what would help push recovery along.   1) make sure you get enough PROTEIN (via PEG), for me, those body-builder musashi shakes were the go, the hospital shakes weren't great, I went my own way, my priorities were - hydration, protein, nutrition, calories (in that order) I'd speculate that making sure you had a surplus of protein might help ensure faster healing (you can google the weight:protein ratio, and then google how much extra protein you need for healing when injured) 2) external gentle massage of the area, keep using your throat, keep it stimulated.  Massage, wear scarfs, keep it warm and ready to move, do neck exercises and where & if you can, do little dry swallows to keep the muscles alive and working.  I think if a injured body part knows it's needed, the body finds ways to push things along, but if it's allowed to atrophy, it might slow things down.  I'd suggest if you can handle it (I couldn't until quite a bit after therapy), start with lollies - experiment until you find one with taste you can abide, it might be honey or eucalyptus or candy-sweet .. whatever it is, suck on candy, which will produce more saliva, and start to trigger more unconscious swallows.   I reckon it's just all about time, mate, and monitoring/use of the poor abused body-part - it'll return to function, and even if full taste doesn't return, you'll get to a stage where you can enjoy having food in your mouth again.   I can't 100% say it's truth, but for me, the dysgeusia is just a bad memory.  It will be for you also. ... View more

Mate, although it's tempered with sympathy (and direct understanding) of what you're going through - I am completely delighted that my advice and experiences were so useful to somebody else.   With respect to different things you can try to get through the dysgeusia, my personal experience is that nothing will work.  I think you have a very specific type like I had, loosely called things like "rancid taste dysgeusia", it means that everything you put into your mouth (even your own saliva!) can taste like poison or roadkill.   If you force yourself to eat, all it's going to do is cause you physical pain when you vomit, and potentially future psychological issues - like pattern based food aversions.   My personal experience is to wait it out and rely on the PEG tube - it will wear off entirely - you will reach a point, from my experience a few weeks after the end of therapy .. like a month after your last chemo ... where the rancid taste starts to fade .. instead of poison, water will start to taste better .. like it was harvested from a toilet, but still much better.   When you can start to sip water, you've got maybe a week or so before it is drastically improved, in a very short time you'll be able to take the nutrition shakes by mouth (at which point I had the PEG yanked, because as soon as it can go in via mouth, even if it's work, it's good to reduce or eliminate PEG dependance).   Because .. the consequence of PEG dependance is that it can cause long term swallow difficulties.  Even if you have nothing in your mouth, its advisable to try and swallow (you know, just swallow back, like nothing), to keep the muscles & reflex.   There are medicines like "magic mouthwash" (which you'll need a compound chemist to mix, in principle it's a numbing agent that coats the throat, theoretically allowing food down the tube without touching the mucosa and triggering the rancid reaction ...   ... your mileage may vary, but my experience was that it's pretty much useless.  Just try little sips of water every so often, and assess if it's getting any better (and spit out if it's rancid - it may all be in your mind .. but let's face it ... EVERYTHING is electrical signals in your mind, everything you see, hear, touch and taste is really little more than sensory logic, so when people dismiss stuff in a kind of 'matter over mind' shake it off sort of way ... don't worry about them.  Worry about how you feel and the discomfort you suffer when you taste poison, and I personally think: don't force yourself.   You may get pressure from dieticians at the hospital to try and eat all the time, don't be afraid to say simply:  NO.   I had a bit of work educating them exactly to the rancid taste dysgeusia, and that their advice verged on irresponsible (because they knew nothing about the food aversion studies, for example).   You're in the trenches, just get through it.  Don't kick yourself around too much, and don't allow others to kick you around either.  Good luck, mate. ... View more

My advice would be to make your decision based around your ability to drink water.   If you can drink and swallow without hardship (or with a level of effort that you can manage), I think that's the time to get the tube removed.   Basically, in principle, if means anything you can put in via the tube you can put in via your mouth .. so even if you are only consuming the shakes, it's still better to take them via mouth than via tube, so as to regain your swallow reflex (or not allow it to deteriorate any further).   As soon as I could drink a glass of water, even though it still tasted a little bit gross, I asked the doctor to have my tube removed, it was scheduled and removed about 2-3 weeks later.   Regardless whether the tube is actually removed (warning: it hurts), if you can swallow, I suggest take as much as possible via mouth and minimise any use of the tube.   In my opinion, your timeline should look something like this:   - start experimenting with swallows of water - if you can keep water down, start to increase volumes - once you can swallow and retain a full glass of water, try a shake, and at that time start to organise getting the tube removed - as a next step try and drink cuppa soup (without noodles, at first, just pure liquid soup, but the taste of chicken or tomato or pumpkin or whatever is your favourite -- you may find your appetite starts to awaken a little if you can actually taste foods again, and if some/most/all of your taste is back) - from there it's onward and upward.  Even if you only take a conservative liquid diet via mouth for a few months, it's still going to be more than you were getting via PEG, and it's going to be waking up those muscles you use for swallowing, that may have started to .. forget .. a bit how they are supposed to work   My two cents.  Good luck, I really hope you can return to eating food in the short term future. ... View more