You've gone through it like a champion.   For me, almost 3 years out, still have a small laundry list of issues that cancer opened the door for - but all-in-all life is grand.   Since you're so aggressive in your recovery, I just wanted to urge you to do one thing:  get your thyroid checked.   Head and neck cancers can destroy healthy, functioning organs - and the thyroid is a good candidate for radiation induced damage / impairment.   (EDIT:  should say head and neck cancer TREATMENTS can destroy healthy, functioning organs)   As you resume eating, and also start experimenting with foods to see what tastes good/bad/different, you might take in more calories and fats unregulated - and if your thyroid is damaged it will creep up on you slowly .. and it's kind of like a snowball gathering mass (or a human trunk gathering flab), once it's started it's harder and harder to reverse.   Medicine will help of course, but forewarned is fore-armed as they say.   I'd just urge you to get it tested and make sure you're "all good" in that regard.  (And if not, they'll prescribe a medicine that will take care of it - basically a synthetic thyroid replacer).   Cheers, big ears. ... View more

Buddy here's my two cents, and in giving it, I'd urge you to read up on any topic that concerns you before making your final judgement call.   1) PEG insertion:  it was prophylactic, meaning that it was put in during the break between diagnosis and BEFORE treatment began.  I read about the surgical risks, all the literature around PEGs and winded up just trusting my oncologist's advice that it's better to have it in case you need it.  It was a night in hospital and some post surgical fever complications, but on the positives - it saved my life, without it, I would have been a wreck.   2) Nasal intubation:  that's not a preferred method, as I understand it, rather something they do if someone winds up in hospital malnourished and unable to eat by mouth (because they're too messed up to risk PEG surgery at that time, I guess.).  The nasal tube is less convenient to use, and apparently slightly more risky, it's more of a backup scenario, if that makes sense ?   3) Meds via peg:  yep, you get a mortar and pestle, liquify as much as possible, and insert them into the PEG tube with a syringe.  Basically the tube is an access portal directly into your stomach.  You only have to be mindful not to get it blocked (ie crush the meds pretty well).   4) Mobility:  me, I spent a lot of time playing computer games, and sleeping whenever I needed to.  You get hit by waves of fatigue, and in my case mucositis robbing me of sleep and comfort, so I needed distractions, and just rested whenever I needed it.  Note:  up until the 5th week of treatment, it's pretty much fine, might feel like a breeze .. it's after the second round of chemo and toward the end of treatment that things got bad for me, and for about 3 months post-treatment.  As to caring for others .. I really don't know, mate.  I'd investigate back-up if there's any available to you, even look at community carer programs or whatever for the period where you are in treatment and immediately after .. can't care for others if you can't look after yourself .... but sure, I have 3 young kids, and I was still able to spend time with them, lurch to my youngest's birthday (he turned 4 right in the shittiest part of my treatment).   5) Tonsil removal:  no, I didnt get surgery, it was non-viable due to size and position of my tumour.  However, my tonsil is gone, apparently it was destroyed by the radiation.   6) Protein:  if you mix that bodybuilder protein powder into a shake and take it via PEG, working from your specific math in terms of protein and calories, it will go a long way to helping your healing and wellbeing (assuming you cant eat/drink by mouth late in treatment).  The nutritionists will give you these ghastly pre-made shakes and say you need to take like 20 per day, but that's because they don't carry the amount of protein and calories available in the professional sports shakes.  it's a tip you won't get elsewhere, and my nutritionists reluctantly agreed it was genius, even though outside the hospital's guidelines.  You can also put high calorie liquids into the peg, stuff like custard and eggnog and whatnot .. anything that will give you mega-calories needed to maintain your weight   7) Pain relief:  I took panadol until late-stage of treatment, when the doctor got annoyed with me and insisted I take the morphine based medicine, they give you something in-between too, I seem to remember it's called Endep or Endone or something.  I'm good with pain, and my mother was a junkie, so I had some concerns about morphine, but took it when the doctor insisted I start, his specific words were "Simon, I really don't understand why you aren't screaming in pain right now !  You're just taking panadol every 4 hours ?  Look, I don't want you to have a siezure or anything, please start taking your prescribed pain relief"   8) Treatment received:  Adjunctive chemoradiation.  3x high dose cisplatin (chemotherapy) and 35 treatments of radiation, 5 times per week over 7 weeks.  Apparently this is about the norm.   9) Exercise and general wellbeing:  get through the tunnel, your tunnel may not look like mine did, just navigate through it and do your best, be kind to yourself, easy on yourself, and ask for help if you need it, especially from your doctors.  My advice re: exercise is, I guess - do it if you feel that you can, and if you think it will make you feel good.  I'm no expert, but I have read about how light exercise during treatment can be helpful - also you will be taught some new exercises (neck and swallow) to help mitigate problems with the radiation treatment.   Lastly-  not sure if it's mentioned much in the thread .. dental stuff.  You can get a thing called .. ahh, from memory ... radiation osteonecrosis of the jaw .. where the jaw is weakened by the rads, complicating any and all future dental interventions.  You can get a special toothbrush and toothpaste to help mitigate this and which is also designed for dry mouth from chemoradiation .. probably your cancer care team already mentioned this, if not, be aware ?   Cheers   Simon / Captain Australia (heh, yeah, I really am actually Captain Australia, if you're curious there are probably pictures and videos still up around the internet)     ... 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Hey Bill   Mate, there's not a lot of great information out there, so when you're first diagnosed and grappling to understand and ground yourself, it's hard to find the info you need.  It's all saturated with bland corporate advice, commercial offerings, self help manuals, unproven natural medicines, etc etc.   If you roll back to page 1 of this thread, it started with that need to understand, and as I learned, I tried to keep dropping updates with more information - stuff like the mucositis for example, as an isolated symptom.   Rather than re-hash, what I'd suggest is, wind back and have a read, I really hope some of it might be useful.  There's a bunch of folks who have similar/same disease profiles who have come and added information,  there's probably a lot of information trapped in this rolling conversation for someone with your disease profile. My cancer was the same, but I think larger and more clearly marginated.   People hesitate to give advice, but let me give you mine (with a caution to make your own decision):  Get the PEG tube.  As you're superfit, you really can't afford to lose bodyweight, and your body will cannibalise muscle before hospitalising you with malnutrition/dehydration.  (I had an advantage being a fatty, ironically lost all the weight, but the radiation induced thyroid damage has broken my metabolism, piling it all back on after treatment, haha). Buddy, think of that - during the course of treatment, my body required to access about 30k of stored energy.  When taking chemoradiation, your body is under duress.  You need .. shit I'm sorry I forget the calculation .. something like 0.8g of protein per kilo of bodyweight .. in normal conditions .. but with your body under duress you need to take as much as 4x that amount.  That's ignoring calories, hydration, nutrition and talking protein only.  So let's say you weigh 80k (for easier math), then each day you'll need to take 160g of protein - which is a combo of steak, chicken breast, eggs, etc for a body builder. My friend, my advice for you to take with a grain of salt .. get a PEG tube & look at those mushasi weight gain powders that bodybuilders use (I know it might read crazy, but dead serious).  You'll breeze through most of your treatment .. let's say it's 7 weeks .. OK .. it's about week 5 and 6 that you'll blink and everything starts hitting at once.  Up until then you only contend with a loss of taste, so you can force eat just fine .. (I was unlucky getting a thing called rancid taste dysgeusia - if you get that you'll need the PEG tube sooner).   Anyway, the musashi shake are a great delivery system for protein, even if you take them by mouth to supplement your protein intake in lieu of eating a large steak, chicken-breast, eggs, tuna, etc.  The very idea behind the shakes is to provide a healing body with mega-doses of protein, and not to be calorie intensive because most of them want to stay lean and gain muscle. Once the dry mouth, mucositis and other problems set in (you're bound to get them to some degree, and honestly it's better to have the PEG and not need it than need it and not have it - in that scenario you are hospitalised, intubated via nose maybe, ugh) .. anyway, once those problems set in, you calculate the amount of protein shake you need via PEG per day for optimal healing, and administer it like medicine (you also take pain relief etc that way). Anyway, prioritise:  hydration, protein, calories, nutrition (calculate the amount of calories you need for weight maintenance, and even continue exercising if you can and you enjoy it). Thats my two cents to take with a grain of salt, noting: - some people go through treatment entirely without PEG tubes - pre-existing airway stuff like GERD can be an influencer of bad mucositis (which is the main reason to have a PEG, as it takes away your ability to eat/drink normally) - its not just mucositis, some people have pain that prevents BY MOUTH, me, I'm good with pain, that wasn't a problem, so as April says, everybody's mileage varies. - also some people have complications when their PEG is installed (about 10%).  I did (post surgical fever, which settled)   That's just zeroing in on one issue that for me was hugely important, what I suggest is have a read, look at folks with similar profiles, and then also take those little factoids and do pubmed searches if you're inclined.   Pubmed is a massive library used by scientists today as a research tool, basically you can compose a search phrase like "pubmed surgical risks peg insertion australia" and you're almost certain to find an article tabulating the stats.     So yeah, suggest getting impressions and anecdotals from this thread, noting the stuff that concerns you most, read the science, then when you talk to your oncologists you'll already be pretty well informed. ... View more

Hi Sheryn   I can't speak unilaterally, only provide my perspective and experience, but I'd start with a simple thing I learned:  trust your doctors.  They do abide by a thing called "duty of care" and also "evidence based treatment".  If there's a statistical impact of delay in treatment in your dad's case, quite simply - I can't see that a doctor would risk the litigation, and also the breach in their duty.   My case ?  I was more advanced than your dad:   T4N2BM0, and the initial prognosis was that without successful treatment, I would probably have less than 6 months to live.   And yeah, I had a delay of about 4-6 weeks between diagnosis and treatment.  The same stuff described already - meeting with a dentist, scans, having a radiation mask fitted, etc.   I think, at the end of the day, if the cancer grows a little before being saturated with chemo/radiation, it's probably in the 'no big deal' category.  The chemoradiation will either kill it or not.  I was worried about metastases .. spreading to other parts of the body, etc .. but my doctors weren't.   So what can I say ? In cases (like mine) where the cancer could grow and obstruct an airway, they'd probably modify the default schedule accordingly.  But where there's no imminent threat of the cancer kiling the patient, and they deem the risk of spreading to be low .. well, they'll schedule accordingly, I guess.   There are cancers that can knock you down overnight .. blood cancers, leukaemia, breast cancers - I think they are candidates for swift surgical intervention, immediate medication, etc ...   But for head & neck stuff, my impression is that they follow a pretty known trajectory.   My personal impression:  the doctors wouldn't risk your dad's life or treatment plan, the delays are necessary (whether medically or as a part of hospital logistics), and in the balance he's receiving the standard of care appropriate for his disease.   But hey .. what do I know ?   I can relate absolutely to the anxiety, my advice is to let it go, watch the clock, tick off the days, and wait.  The treatment phase, and after, is very bad, this cancer show is like being in prison, you just have ot mark off your time .. and maybe one day ... escape.   Let me warn you also - after treatment is finished, you don't suddenly know that everything is OK.  You have a wait of a MINIMUM of three months before they can do a proper PET scan to detect remaining cancer, and even in that time window they have false positives due to inflammation (that was my case, it was gut wrenching).  At 5-6 months I tested all clear (big relief).   As a wise man (Tom Petty) once said:  the waiting is the hardest part. ... View more

The rancid taste distortion is uncommon, I think the majority of folks just get an absence of taste, or a mild 'yuckiness', but for me even drinking water was like being compelled to eat something rotten and poisonous, like roadkill or something.   It lasted through the treatment phase, and didn't start to fade until a couple of months after treatment had finished up.  I'll say about 6 weeks I was able to start experimentally drinking little sips of water - and once I could take something by mouth without vomitting, I just forced myself and things started to get better faster from there. My last treatment was Christmas Eve, and I think I had the PEG tube ripped out in March - which was scheduled a few weeks after I was already no longer using it and able to take nutrition/hydration/meds fully by mouth ..   So yeah, if I had to look in the crystal ball and guess for you - if your rancid-taste problem is the same as mine it probably indicates the more severe and unlucky end of mucositis, so I'd create an expectation looking a bit like this:   - 6 weeks out of treatment, the rancid taste will begin to fade - from there you can start drinking and the more you do that, the better things improve - always drink plenty of water to mitigate dry mouth, even though you find yourself peeing constantly - a year out, spitting until you vomit will still be a major annoyance - two years out, you'll still accumulate gross mucus from residual mucosa damage or whatever the cause, and the dry mouth makes it untenable, so even 2 years out you'll still finding yourself having to spit up mucus (solutions will depend on your etiquette I guess, but forgive me - me, I just hawk it out the car window) - three years out, things are better, but still dry mouth and mucus are irritating - but its more an annoyance level than unbearable gross problem it was - five years out ?  hoping that it'll be an echo of what it was, and saliva/mucus/etc is all a lot better, but I'm braced that it may be a 'rest of life' problem' (the payoff being that luckily the rest of life is no longer confined to 6 months) ... View more

I just wanted to say sorry for your situation   For him, it's awful.  Not really the physical suffering - the worst part is knowing that time is short, knowing that you may soon have to say goodbye. You face the same thing, and in a way it's worse - you have to watch it happen, and continue after he passes. I wish and hope there is a chance for him to fight this disease and win.  I was in a very similar boat 2+ years ago, but was able to beat the cancer.  I hope that's a possibility for him too. It sounds like it's going against him, I just wanted to say good luck, and sorry. I hope he rallies and lives as long as possible, but if he does pass away, I hope you remember to ask for help for yourself.  You will need help and support to deal with it, and there are resources available to you, and plenty of people here who have common experiences. Me personally - I like to be alone with grief & fear.  It's only joy and happiness that I'm interested in sharing. BUT .. I'm an old turtle who pulls into his shell when things go wrong.  You're probably not the same .. remember to reach out and seek help at all times throughout this horrible challenge you are dealing with.  Prioritising and protecting your own overall mental health, I mean. ... View more

Touch wood, mate. There's a thing called a PET SCAN, if you don't already know, where they inject some kind of special radiation into your body that illuminates cancer cells.  Diagnostically, it's apparently quite definitive.   Biopsy of course is the way to go, but depending on location and concerns with occult (unknown) cancer, it can't give you the clarity and closure you might need/want. But a pet scan lights up your entire system, highlighting even microscopic instances of cancer.   I've had two - one bad, one (after treatment) good. Just mentioning it in case it helps you.  "Not knowing" is no place to live. ... View more

My advice is for you.   Your mother is dying.  Sorry if you mentioned it, but I didn't absorb how long she has, but by the sound .. it might be less than a year ? No assumptions about your relationship with her - but if part of you feels that you want to be with her, but life is in the way ...   ... if you reshuffle parts of your life to see her as much as possible, five years down the track you will regret that LESS than if you allow little potential parcels of time to drift by while you focus on other things .. work, study, whatever.   Sorry if that's harsh advice, but it sounds like you really love your mother.  I'm sorry that terminal illness is affecting her (and you, and your siblings).   Let's say I were in my second year of university, and I were in a similar boat ... well, my mother was a junkie and .. I don't love her.  So .. it's actually hard to imagine, but .. embracing that I love my mother in the way I sense you love yours .. I'd actually (assuming I could swing it logistically and financially) take a year off school and spend a lot of time playing cards with her, gardening, whatever it is as long as we are hanging out together.   Anyway, just a random two cents from an internet stranger.  Food for thought & nothing more.   Final remark:  46 is NOT MIDDLE AGED.  FFS.  C'mon.  If I have to bloody well deal with hashtag inclusion, hashtag transgender activism and whatever other bullshit the modern world wants to throw at me, you young whippersnappers can bloody well show a bit of bloody delicacy when calling MY PEERS who are NOT MIDDLE AGED .. calling them (and by association, me) MIDDLE AGED. Why, me ?  I'm in my PRIME.   Middle aged indeed !   (EDIT:  sorry that insane rant at the end was totally tongue in cheek.  I have cancer.  You're obligated to show me compassion and understanding ;)   ) ... View more

My two cents ?   Yes. Hey, it's a complicated life.  There's topics like euthanasia and abortion and all kinds of muddled threads of thinking and belief that people hesitate to give advice, and these days it seems especially that there's an expectation not to offend, and to have viewpoints that are all-inclusive, wise and inoffensive.   But hey, we have cancer, so let's be real instead, eh ? Life is finite.  Death is the experience that we, all of us, will one day share.   Chemo is one of your tools to delay this expiry date.   Even if it's hard.  Fight. Even if you're tired.  Fight. Even if it feels like it might be more comfortable to accept end of life and have more quality in your final days.  Fuck that.  Fight. As long as the doctors say treatment is viable (not palliative), I think you should fight.  Your life is beautiful and sacred.  Fight for it. If it's palliative - different story .. you have to find the fine line between discomfort from the chemo and discomfort from not having the chemo, and find the balancing point that gives you the most quality of life.  I'd ask my doctors about it and have them help me reach a decision.   But if there's a chance it will shrink or kill the cancer, a chance it will prolong your life, even if only by six months ?  Fight. ... View more