Buddy, in case it helps to see a snapshot of things less than 12 months down the track, here's how things stand with me now: I had moderately unpleasant external burns:  pain, couldnt turn neck .. that was all good after maybe 2-3 weeks. I had woeful mucositis, terrible, spitting and vomitting all the time:  I now have phlegm accumulate throughout the day, and do spit quite a bit, but it's really just a new normal. I developed tinnitis after the first cisplatin:  it's gotten worse and is a constant, they say its a rest of life deal, but if you learn to zone it out you can forget it's there. All taste became rancid for me, and I could not eat via mouth for several weeks:  I can eat pretty much anything now, although some foods require water to help it go down as they dry mouth is ongoing. Loss of taste:  on average its maybe 75% back.  Some things continue to improve .. some things may never improve.  Icecream for example tastes pretty much as it did before .. but things like .. say fast food fries .. they taste like .. potato. Note: accupuncture helped with my dry mouth.  There are scholarly articles supporting efficacy, although it's open as to why it works, most doctors suggest it's not effective but the studies seem to state otherwise.  If you have bad dry mouth it's worth looking at in my opinion. Good luck mate .. don't be bummed out that after treatment the problems may actually intensify .. it gets better in the coming weeks.  Three months down the track you'll be feeling mostly normal again. I hope you get an all clear. ... View more

I wish you seven different flavours of good luck.   It sounds like you're still managing to eat, which is really good at this stage of the game.  Have you experienced much in the way of dysgeusia ?  (food losing taste, or the worse kind where food tastes somehow rancid)   In any case best of luck, fingers crossed for the treatment being a complete success.   I'm in for a colonoscopy tomorrow (after treatment there's a vigilance phase where you get looked at every 6 weeks for signs of recurrent cancer, and they also fast-track any other investigations like blood where there shouldn't be -- but in my case it's just a slow healing injury from the chemo-constipation, pretty confident).   But ugh, these diarrhea-inducing pre-colonoscopy potions are ... AWFUL   ... View more

(unless there's a little town called "Xylophone Bend" in remote Northern Territory, we might be in trouble here .. note: it's morally uncool to use google in this game!) ... View more

Blood is always bloody scary (sorry), but not always bloody serious.   Through my cancer treatment, I was often coughing up a (sometimes scary) amount of blood.   You get this atavistic reaction like .. something broken inside me .. my body eating itself ... but in my case, my airways were aggravated by an excess of phlegm .. caused by both inflammation and a lack of saliva to push it through my body in the normal way .. so I was coughing a lot .. and the coughing abraded some minor blood vessels .. next thing you know I'm spewing into the sink and seeing blood threaded through it.   In that case, really scary, but not serious.   When the blood is bright red, apparently you shouldn't be too worried, because its fresh and somewhere near the expellation point .. example bright red blood on your toilet paper more often means haemmorhoids than stomach or bowel cancer ... but where the blood is darker, that apparently should be more of a concern, like a malignancy inside you. ... View more

Chef T, mate, I hope you're still with us - and if you are, I'd also urge you to push for clinical immunotherapy trials. These days drugs like Interferon are keeping people with blood cancer alive indefinitely, which was back years ago pretty-much a death sentence.  My half-brother's father (no idea what word applies to that relationship, stepfather twice removed or something, heh) has a very similar cancer outlook to you, and was given <6 months to live, put into a palliative care facility.   Now, on some immunotherapy drug, he is still alive (and this is at least 2 years later - in the intervening time I was diagnosed, treated and limping along for a year after).  His tumours have not vanished but have shrunk by about 80% and they're cautiously using words like remission instead of palliative.   Just in case your doctor has given you "I'm sorry there's nothing we can do", even if your remaining life is measured in weeks and months, you sound like a FIGHTER and one thing I'd do is fight the system making sure that if there is an unexpected treatment path, or even new experimental treatments, you're on the list.   If it's a side-track, I'm sorry, I'm just remarking in case it's something that nobody else has mentioned and might be useful.  Good luck with your fight, as you say, make sure your last breath is exhaled from a body and mind that still has hope and love and strength intact.  All the best. ... View more

Hey There   You seem like a really sweet and empathic person, I hope you can find the right balance to face this and move forward.   I can't remark about a hysterectomy, in fact I would cautiously tiptoe through pregnancy and anything womens-health related because there are some things a guy just can't understand.  But I do know about loss, fear and grief - which is what I wanted to briefly write about.   It sounds like you're getting blind-sided from time to time by grief .. unprocessed emotion about the idea of future loss/uncertainty/pain/risk.  My advice is pretty simple.  It may be bad advice, and if it doesn't fit for you, I apologise.   Tackle it head-on.   I'd suggest that it's better to process everything from a place of strength in the hope that it might reduce getting blind-sided by grief/fear when you aren't feeling strong at all.  I'm sorry again if this comes across as bad advice, or somehow superior or preachy, it's meant with compassion.   I think sitting down one afternoon when you are strong, and breaking everything apart - basically the big suitcase marked "worries", opening it up, unpacking and looking at everything, then repacking it as neatly as you can.  When you repack it, try and keep the good things and bad things separate.  Keep and hang onto the beautiful things in your life.   The only other advice I'd suggest is to communicate to your partner.  Fear is isolating & grief is deeply personal, so it's really easy to curle up into a ball and assume nobody can help or understand .. but if you explain to your partner, for example, that love-making is distressing with this hanging over your head, but on the flipside of that you need contact, to be held and cuddled .. well, maybe love can find a way.  (But if you don't articulate it, there'll be confusion, a frustrated desire to help, additional unnecessary stress).   Again, I'm sorry if this isn't useful, but for me personally - a simplistic process of breaking things down and putting them firmly in their place was really useful in dealing with a potentially terminal cancer diagnosis and the horrible fight that followed.  Cancer free now, and looking back, I'm pretty confident the approach I took was healthy & right for me.   I just hope there's something in there that might be useful to you (or even someone else who comes along and reads this), I can tell you're suffering and really sympathise.   Last thing:  there is help out there in the form of counsellors who can listen and guide, if you talk to your doctor/hospital contact about it, all kinds of stuff from dealing with anxiety to coping with grief, professionals who can listen and help.     ... View more

Hey Guys   Sorry for not responding sooner, I went through a "I'm done with cancer" period where I just took the kids on an epic road trip in the RV (winding up from Brisbane, through the Northern Territory and down from Darwin to Alice Springs and Uluru.  Over 3 weeks or so we covered about 10,000km, I think.   Shane, I couldn't be more delighted that me muddling through my experiences has been of help to someone.  One thing to bear in mind is that treatments are always improving.  Immunology is a really interesting area of cancer cure & prevention.  But even little stuff like the "magic mouthwash" and dealing with the phlegm.  When I was dealing with it there were some products available in the USA based on the magic mouthwash formula but with some very specific ingredients that coat the inside of the mouth and tract rebuilding a barrier over the inflammation .. I can't remember the details, but at my time of treatment the hospital pharmacist said they were looking at getting those medicines in Australia .. so a year later .. who knows ?  If you have problems in that area it's worth a fresh research.   April, glad you're doing well - cancer is a **bleep**-show, but if you find the right mindset getting past it can be a little comparable to becoming a born-again-Christian.. you get a second chance with everything, even if it does come at a cost.   Shane:  if you're in the middle of treatment right now, you're probably right in the trenches, or about to climb down.  For me the worst parts were weeks 6, 7, 8, 9, 10, 11, 12 (with actual treatment ending at week 7).  So the last two weeks of treatment were when everything accumulated, and post-treatment was particularly woeful.  But as April mentions, everyone is different.  Just take heart from this .. if you're in the trenches .. the time passes.  Take your amusement and distractions wherever you can find them and just put in the hours ... six months later, you'll feel human again .. a year later, the treatment will be fading into memory.  Good luck. ... View more

Hey there Thanks guys for taking the time - I really sympathise with you & understand your situation.  For me, I'm coming up to my 1 year anniversary (of finishing treatment), and doing pretty-much great. Interestingly, after you beat the cancer, almost half of the patient population get some kind of depression (even up to clinical levels), it's kind of a "what now?" effect .. for a nerd analogy, you're like Frodo after the long and horrible journey to throw the ring into Mount Doom .. after such suffering, after saving the world, you've lost so much, you look around, nothing feels or tastes the same .. so yeah .. I'm officially calling it "The Frodo Effect" (trademark pending, if you intend to use that in future you owe me fifty cents.  Not the rapper Fiddy Cent, but fifty cents of Australian currency). Me personally, I've felt VULNERABLE to depression a few times, but managed my way around it, so actually doing pretty good.  I think that after you win the initial fight you still have to deal with the whole recurrence-risk issue, and when you realise that is still hanging over your head, you continue carrying a (lesser) burden of anxiety and distress. It's good to step back.  Coming here and re-reading what I wrote a while ago, about a struggle that I finished almost a year ago (Christmas Eve is my anniversary), it actually widens my perspective again. As James Brown said .. I FEEL GOOD ... so thanks for that.   It's not your suffering that makes me feel better !  It's that my own suffering is profoundly reduced and I love my family and I'm living an (almost) normal life a year after cancer.   You can too.  Good luck with your fight.   ... View more

W is for Wagga Wagga ... View more

Not interested in continuing this dialogue, but I will reassert my key points, even if they are beyond your understanding:   1) Intubation (without clarity) is most commonly used in emergency settings, and as such the term is commonly received as meaning to achieve an airway - nasally or even via tracheotomy etc.  Nasal intubation means putting a tube into your nose, and in context of course the earlier messages in this (now derailed) thread all refer to FEEDING tubes (technicially called naso-gastric intubation).  If you're a candidate for a feeding tube, decide what you want to do, but I personally favour the PEG.   2) Orthodox treatment (through your hospital team) is not the only source of information available to you. The info that you receive will be conventional wisdom of the day, that is strictly evidence-based.  And yes, it will encapsulate people who have seen patients arrive/survive/die thousands of times (not that this is necessarily a good thing), and the viewpoints will be cemented in that experience only.  With every area of science, there are proven theories, disproven theories and UNproven theories.  (example of an unproven theory is the mind-gut axis relationship to autism).  You can find a wealth of data on any given topic that is currently being scientifically explored (but not yet proven as to be in conventional treatment), and that data rational approach is (in my opinion) useful.  Example, PEG tubes, you can learn that 20% of them have complications (without checking the numbers) but of the 20, only 1 is serious, and that naso-gastric tubes are statistically a little less dangerous (but a lot less convenient).  You'll get the insight that hospital staff will recommend prophylactic PEG insertion because of the relative cost & hassle of installing and maintaining a naso-gastric tube, even though they are slightly safer in terms of surgical risk.  That's just an example where, if you're unsure what to do, it's worth looking at all the information available from all sources. Another relates to the hunter-killer gene that actively fights cancer in your body daily.  No orthodox clinicial will give you any advice regarding the immunonological approach to treating cancer, despite the fact that the science (unproven) is moving in that direction.  It will be 20 years before that science is in the conventional treatment sphere .. but in the meantime you may have a bad prognosis but be a candidate for a clinical trial in immunotherapy (if you are aware of it and know to ask about it / beg for it).   3) Your priority is your own wellbeing and survival "How many variations would they have to manage if each patient gets individual treatment" .. screw that.   If you need something, seek it out.  If you are not getting the information you need and feel confused, demand answers.  If you can't find them from your doctor, look for them elsewhere.  Don't be complacent about your care, be an active participant.  I'm not arguing against orthodox treatment, or ignoring the advice of your doctors, I'm arguing for making informed choices.  Be aware how much information is available to you, and if you feel you can handle it, seek it out.   Hector, you seem like a "last word" kind of guy, so be my guest .. but I won't be back to engage in a futile and circular discussion. This thread was about my thoughts and experiences, maybe you should start your own - if you want to champion against people reading the internet, you've got a lot of posting to do -- in fact it seems a bit counter-intuitive to be here at all unless it's just for cuddly feely support stuff, as anything information based should result in "talk to your doctor". ... View more