Crap (pun not intended), I forgot all about the constipation.     If anything, take that as a good sign -- it's traumatic, but if you power through, once you're out the other side that aspect drifts into the past pretty quickly.  (Kind of like pregnancy and giving birth, otherwise most women probably wouldn't willingly do it more than once).   Let me give a DO NOT READ IF SQUEAMISH warning here, OK ?   The constipation was a profound problem, and I made the mistake of ignoring the constipation meds until I was already suffering a complaint, where it will definitely have a prophylactic effect in softening the stools and preventing or mitigating the problem.   If you let it go, well .. mileage may vary, but for me it was terrible.  TERRIBLE.   It feels like someone inserted a foreign object into your basement, and it's too large and wrongly shaped for you to squeeze it out in the normal fashion.   I literally tore my sphincter and once it healed a bit, tore it again.  At one stage, I actually had to kind of reach up inside myself in order to get rid of an extremely hard - like .. brick hard .. piece of excreta.   Just so you can have a sense of severity, after clearing that particular instance, I looked down and the toilet bowl didn't just have splashes of blood, it was literally red water, I splashed down a good cupfull of blood.  It was horrible, a fair bit painful.   Take the meds even if youre not suffering constipation .. I had cisplatin, not carboplatin, but if they say it causes constipation .. yeah mate, suggest do something preventative.     If you don't want to touch meds without there being an active problem - then .. if you can still take drink by mouth, go with prune juice, anything and everything that will soften a stool.  Drink massive amounts of water, etc.   I didn't have to have stitches, but my doc did order a colonoscopy as there was still bleeding several months after treatment .. from the injury healing and then re-opening itself.   I should have taken the meds more seriously and used them even though I wasn't suffering constipation.  Once I had a problem, it was a bit too late, locking the barn door after the horse already bolted... ... View more

Mate, how are things going now ?   Honestly, to me your original post reads very scared, but also a little bit hypochondriac-y ?  (No offense, please, mate !).   The poster who suggested to ask your doctor straight up:  "what's the normal situation and life expectancy for people with my same disease profile?" ... I think that was golden advice ... did you find out ? Is your health OK ?   I think it might add context for other people currently suffering death anxiety who see your post.  That feeling of "Oh Shit, I have cancer, I just *KNOW* it !" .. I've actually had a friend from France, young, healthy lovely guy named Thibauld, who would often talk about how convinced he was that he had cancer, and that he was going to die young from cancer.  (Ironically he's still fine, and it's ME who got hit, heh).   It's kinda a form of Munchausen Syndrome, where an otherwise healthy person suffers death anxiety. Mate, not saying you don't have legitimate reasons, absolutely, not trying to dismiss or trivalise, just very curious if you're currently OK ?  From what I've read polyps are pretty normal .. although it sounds like you have them in abundance, which I imagine is no doubt a grave concern.   Did your condition escalate into cancer ? Are you still OK ? What words of wisdom would you impart to other folks browsing these forums who are suffering death anxiety ?   Me personally ?  Not sure that it's wisdom, but I'd say:  if you're preparing to die ... don't forget to live.  You're still breathing, so there's still time. ... View more

For a head & neck cancer, I had 35 radiation treatments over 7 weeks (ie 5 days a week), and 3x chemotherapy treatments, high dose - requiring overnight hospitalisation.   The radiation was a breeze .. I mean, it was claustrophobic, uncomfortable, and because of a saliva/mucous problem really really hard to tolerate ... but big picture .. it was a breeze .. you go there, you do the awkward and uncomfortable treatment and you finish .. knowing that there's just 35, you can just kinda tick them off .. you know, like a kid counting or a person in prison or stranded on an island ...   .... I   (one) ..... I (two) .... and when you have a stack of four ... IIII, you cross through with a diagonal slash ... /   Do that 7 times and you're all good.   I don't mean to trivialise or minimise it ... but it's your way of fighting cancer, fighting for life .. I'd urge you to dive into that, treat it as a boxer would an upcoming prize-fight ... get through it, do well ...   And good luck - I hope you win 🙂 ... View more

Make sure to ask / seek out clinical trials, as Immunotherapy is an emerging strong direction in cancer research and treatment, where basically they supercharge the immune system and cells that hunt cancer in the body, making the cancer more visible to them.   Cancer is a mutation, and often goes unchecked by the body's defense mechanisms - I can only say anecdotally knowing someone who had advanced cancer - stage 4, metastasized to lungs and liver, he had a life expectancy of weeks and survived several years.  Yes, he's deceased now in his early 60s, but he lived a lot longer than would have .. at one stage his "terminal" cancer had shrunk 80% and was considered tentatively to be "in remission".   It's worth keeping hope, even if it's just for overall mental health & wellbeing.  Make the most of the time you have. ... View more

The mask fitting:  they lay you down and fit this special mesh mask to your anatomy, it needs to precisely and tightly match your face.  It feels like being restrained with a heavy wet blanket sitting over your face, and you can breathe through a small hole.  If you had any claustrophobic tendencies, this is the part that would suck the most.  You have to lie perfectly still for half an hour (but there are nice people with you, watching you like Baby Jesus, so try not to be scared).  Lying still for half an hour is a skill you're really going to need later.   Daily Treatments:  you're slid into a CT-style tube, and yeah if you have claustrophobic tendencies, it's going to feel like a coffin.  If that's your grave concern, ask about valium or other strategies.  If you're not particularly claustrophobic you just have to soldier through, listen to music, let your mind drift.  The mask restrains you but you can still wiggle so you have to try and be as still as possible, it's surgical precision at work (hopefully!).   As a head and neck sufferer, I had Mucositis, which is ropey phlegm, kinda like post nasal drip, so lying down was a real trial .. but hey, it's a half hour at a time, just need to soldier through.  If there are major mental stresses, seriously ask about valium or other coping strategies.   After:  I kept my mask as a souvenier.  It looks creepy, but it was key to my cancer survival, so it's a treasure. ... View more

If you're here grappling with the "I have cancer ?!" experience, before you get into the nitty gritty, I think it's important to recognise that you're still alive, and although you're afraid .. numb ... angry ... grieving .. depressed .. (or any combination of these), it's worth finding a stance that is a bit protective of your mental health .. and recognising that it's not GAME OVER just yet, you're still kicking, you're still a viable passenger on Spaceship Earth.   I don't know what your situation is .. but  .... they gave me six months to live.   I have 3 small children (my youngest was 3 at the time, THREE YEARS OLD !), and they gave me six months.  I had a chance at treatment, but if it failed, I needed to 'tidy my affairs'.   That was more than 2 years ago.  Today I'm cancer free.   Six months.  40% chance of survival.  In the clear.   Those words shouldn't mix together, but I'm bloody glad that they do.  And they can for you.  So before you deep-dive into your numbers, wrap your head around your scenario, start to deal with all of the horrible, scary, devastating things that cancer can bring along as fun +1 guests to the party ... just remember .. you're not dead yet.   Between now and the end, there's potential for horrible suffering, sure.   But also for love.  Joy.  Indescribable sweetness.     Find those moments.  Anticipate them, cherish them.  Don't forget to do that.  Please. GOOD LUCK. ... View more

I think that this thread has become a bit of a resource, so I'd like to update on my progress in case people want insight into the longer-game with head & neck cancer treatment & side effects (and for you other folks who've shared your stories here, I'd encourage you to do the same kind of thing). So if you're looking at H&N cancer diagnosis, let me give a quick run-down, now 2 years out and disease free (touch-wood).  Obviously this is specific to me and the path toward successful (so far!) curative treatment. 1) Early Diagnosis My sense is this can be the most dangerous and overwhelming time.  It was for me, I went through a period of about a week where the only information I had on the table was "you have cancer" and "without successful treatment, the most I could give you is 6 months to live".  Worst aspects of this phase - psychological stress and stress on family and loved ones is the most devastating thing.  The uncertainty, the not KNOWING Coping Strategies - for me, there was a two-part strategy .. carry the stress for the family (downplay it a little until I have complete information -- yes yes, it's serious, let's go to the clinics, lets stay calm until we know what we're dealing with).  And for myself, it was research like mad.  What's HPV ?  What's P16+ ?  Those are GOOD things and increase the chance of successful treatment ?  Woo Hoo ?  What are the odds that it's metastasized ?  What are the survival odds based on different disease progression scenarios ?    All that stuff helped me.  (But might just as potentially drive anybody else mental).  I guess the suggestion is be protective of your mental health and the mental health of your loved ones and find strategies that suit you 2)  Treatment Phase Going in, you assume this is where the war happens, you're in the trenches and you will suffer.  I can say that the first half of treatment was a breeze for me.  Sure, appointments, info, stress, submitting to surgery to get a PEG tube inserted, etc, but the treatment phase isn't too bad until the radiation damage starts to stack up (alongside the chemo). Worst aspects of this phase - after the first chemo you suddenly lose your taste, if you're going to get mucositis, you start to get phlegm issues here, dry mouth starts to set in toward the middle of treatment, you may be grappling with whether to get a prophylactic PEG feeding tube inserted.  (If your doctor suggest it, I personally say take their advice, it was a life saver for me). Coping Strategies - this is the time to build yourself up - keep learning about your disease or rely on your doctors depending on personal style .. but if it hasnt gotten too hard yet, use that to bolster your confidence and morale   3) Late Treatment For me, this is where the fecal matter hit the circular rotating overhead ceiling device. Radiation burns stack up, internal scarring is starting to happen, chemotherapy has taken your taste, and if you have mucositis, it's going full blazes now.  Swallowing becomes harder and harder due to dry mouth (and potentially rancid taste mucositis). Worst aspects of this phase - you get waves of fatigue sometimes, its hard to keep up protein and calories, you may lose the ability to eat and take medicine by mouth, some people have profound pain from neck burns, hard to sleep because of need to constantly spit Coping Strategies - for me, distraction was key.  Find something you love and can still do, and DO it at every opportunity.  I dont care what it is ... 48 hour netflix binges, go mad with your xbox, read everything ever written by your favourite authors .. it's like being in prison .. you need to just do the time.   4) Post Treatment (first few months) This was the worst time for me.  You expect to be through the tunnel, but it's gotten WORSE. I had the bad luck of suffering severe mucositis, and it was the kind where everything in your mouth (including your own saliva) tastes rancid, like rotten meat.  You constantly have to spit and vomit, and the stuff you bring up is ... GROSS.  The burns, the swallowing, the spitting, the neck pain ... things didnt start to ease off for me until about 3 months after treatment, and I wasn't feeling significantly better until about the 6 month mark.  Add to this the stress of not knowing if it worked - you have to heal up for a few months before they can give you a follow up PET scan to get the all clear.  And you can have the morale blast of getting an inconclusive scan (I did) as at 3 months there can still be massive inflammation which the scan can't differentiate from cancer.  I didnt get my all clear until 5 months post treatment, after a demoralising UNCERTAIN 3 month scan. Worst aspects of this phase - the fact treatment has continued and the daily support network is dissolving a bit .. BUT .. you're still suffering massively from side effects .. AND .. you're still uncertain whether you've beaten it or not Coping Strategies - distration .. distraction .. distraction ... do neck exercises .. resume drinking as soon as you can (if you're off intake by mouth), start to rebuild your constitution a bit now that the radiation has stopped .. my advice is keep yourself at rest, remain in that uncertain limbo .. but as a gesture of faith, start to make little efforts that indicate that you plan and expect to survive ..    5) 1 year post treatment OK, now everything is a bit better.  Taste is starting to return .. some people report 50% some as much as 95%, for me it's hit-and-miss .. foods you once loved, you can no longer tolerate, other foods you hated are now go-to sources of taste.  But mostly .. everything is a bit better. THE KEY ADVICE I CAN GIVE HERE:  CHECK THYROID DAMAGE Radiation induced hypothyroidism is actually a common side effect, and it's not mentioned by the clinicians or in the literature.  Get it checked early, otherwise a year can go by and you wake up to tertiary health problems and massive weight gain before the thyroid problem is discovered and diagnosed.  Get it checked out just in case. Worst aspects of this phase - the lingering uncertainty of recurrence, the fact that even though its a year later, the side effects are still there, and the worry that they will ALWAYS be there Coping Strategies - celebrate the wins, try and return to life wherever you can, have fun, compartmentalise your disease and the problems around it, and quarrantine those crap aspects of your life from the bits that are still healthy, whole & good.   6) 2 years post treatment Still got side effects - thyroid problem is a big one, get radiating cramps along the side of my face from nerve damage (kinda like a leg cramp after running, but in your head .. apparently it's benign).  Saliva isn't great, but a lot better than it was, just carry a bottle of water.  Mucositis is gone, but still feel an ongoing sensitivity to mucous and vulnerability to it due to the dry mouth.  Worst aspects of this phase - still that lingering uncertainty of recurrence (apparently at 2, 3 & 5 years the stats for recurrence dip significantly, which is good).  The tendency to defer living until you reach some magic line in the sand where you can say the cancer business is done.  (and just spend your time with netflix binges or whatever it is that got you through)   Coping Strategies - try and rebuild yourself, make deliberate efforts to actively engage in useful and productive projects, keep actively working on any health problems and take your medicine. ... 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Hi There It's a complex area of insurance, but let me explain it as clearly as I can (with the usual disclaimers, this is just some-guy, I'm not representing a product or anything, the advice may be completely unsound, this is just a fellow who thinks he understands things but maybe doesn't giving what he thinks is an informed but informal comment) Under normal conditions the main categories where a company wants the "WE REFUSE TO INSURE YOU" outcome are: 1) where you are travelling AGAINST medical advice 2) you have a terminal prognosis 3) you have a problem that compromises your autoimmune response (ie you're pretty much guaranteed to get sick somehow) 4) your condition is not in the above circumstances but is severe and high risk .. like folks who require constant oxygen, etc etc   What they want to avoid is people who are certainly going to lodge a claim, and where the claim will be messy and ambiguous - for example, getting sick overseas from the flu is a condition all travel insurances would normally cover .. but if the person is dying of advanced HIV or something like that, then it's not a fair ask on the insurance company.  (If they want to go overseas and are happy with the risk, self funding is the only option).   For everybody else, the intention is to fall into one of two possible buckets: 1) You have a pre-existing condition and we are happy to cover it (usually for a fee) 2) You have a pre-existing condition, and either you dont want it covered (to avoid a fee) or we refuse to cover it (because of the risk).  In this scenario ALL CLAIMS ARISING FROM THE PRE-EXISTING CONDITIONS ARE EXCLUDED. Most cancers fall into that Bucket #2, but the Insurance companies have these online processes that they want to be as simple & easy as possible (while at the same time protecting their interests), so it's a very messy and uncertain area of insurance.  And the online processes can err on the side of caution, rejecting cover if the event was recent (like the past couple of years) but approving it once you've been stable for more than a few years.   So one approach is to take it on the chin, and self insure, or travel in a few years when the smoke has cleared.  BUT, those online processes are complex, and have to deal with lowest-common-denominator consumers.   For example:  a person can buy a policy online and make a mistake with their disclosure.  For example, I was diagnosed with Tonsillar Cancer in 2016, and right now I'm cancer free.  (Yippee), so I might easily make the assumption that I *dont* have cancer, misunderstanding what a 'pre-existing condition' is, and simply answer NO to the online question "do you have a pre-existing condition?"   See what I mean ?  I'm not a BLEEPING lawyer, am I supposed to read and understand their mumbo jumbo definitions ? (Yes, Yes I am.  But No .. people don't, it's a known commercial reality)   In that circumstance, the Insurer is definitely on the hook for all those routine kinds of claims (luggage, slip & fall, whatnot), and generally they want to be and are happy to be.  It becomes muddled and messy if you wind up in hospital and it's somehow directly or indirectly related to the cancer.  In that circumstance the Insurer looks at a false or incomplete disclosure, and arbitrates accordingly.  So yeah, if you get sick overseas due to the cancer, that's where there are problems, but if you bought a normal policy and had a normal unrelated claim, even though you failed to disclosure (example somone nicked your iPad), the cancer doesnt even come into the conversation and your coverage is pretty much OK. But you see how mucky it can get ? It's not your fault.  It's not the Insurer's fault, everybody is authentically trying to muddle through and do the right thing, but between the real human medical histories, the online processes and Insurers protecting their interests, it becomes a bit ... icky.   I can't tell you what to do, but I can tell you: YES, you do absolutely have a thing called a Duty of Disclosure. YES, an Insurer does absolutely have the right to refuse insurance.  It's data-based from actuarial/clinical outcomes so it's not unfair or discriminatory, it's about making insurance accessible and affordable by having a line in the sand about who can & can't be covered NO, Insurer's dont stop you from quick-buying online, and they also don't require YOU to purchase the policy, family members can buy your insurance for you, so incomplete and misunderstood disclosures are a commercial reality The regulators across the world widely recognise that consumers do not properly read or understand all of these jargonistic T&C documents (Product Disclosure Statements), so when there are disputes the litmus test is actually normally "what is fair and reasonable" Most folks who have not had cancer would think it's "fair and reasonable" to assume that insurance doesn't cover cancer, so at any point saying "I thought my cancer was COVERED" even in the highest court of the land, you'll probably wind up unsuccessful But most folks would assume that the cancer is not covered, but the other normal stuff is (And those assumptions typically inform how claims & disputes are handled) So yeah, sorry for the long winded reply, and again disclaimer "I'M JUST SOME GUY RAMBLING AND ACCEPT ABSOLUTELY NO LEGAL RESPONSIBILITY FOR THIS ADVICE IN ANY CONTEXT, ITS JUST RANDOM INTERNET MUMBLING.  IT DOES NOT REPRESENT A PRODUCT, AN INDUSTRY, OR AN INFORMED VIEWPOINT IN ANY WAY.  I AM AN IDIOT.  A COMPLETE IDIOT" If I were at my wits end after trying to buy insurance and feeling confused, and if I in good conscience knew my health were sound for the trip, but for some reason I keep screwing up the application forms, what I'd do is get my spouse to buy the insurance for me, let them try and work out all that pre-existing condition mumbo jumbo, probably they'd just answer NO with a quick "huh ? no, we dont want that, we know its not covered" Anyway, I get that the above isn't really clear & comforting, if you're adamant about dotting all your Is and crossing all your Ts, what I'd suggest is: - pick up the phone and call the candidate insurer - ask to speak to a team leader, say you have some complex questions about pre-existing conditions - explain your history to the team leader and say you just want general cover without the pre-existing condition, and that you're not travelling against medical advice, all clear, etc etc .. (they may ask you to send in a "clear to travel" statement from your doctor). (the call centre phone jockeys, for the most part, can only give scripted advice, and if you ask them questions touching on scary stuff like cancer, they'll go all scooby-doo on you - so yeah, this last bit is making sure you get some clear and certain advice from an appropriate person ... the initial phone answerer generally is OK for 96% of Insurance inquiries, but you're the 4%, so ask for next-step-up helper) Sorry if this is too rambling, vague and uncertain, just wanted to throw it all out there. Again, disclaimer, I'm an idiot, the above is a story-telling narrative and not specific functional advice regarding any industry or product 🙂           ... View more

I didn't directly connect bush medicine and indigenous life expectancy, as any idiot could plainly see.   There's a tapestry of issues impacting the statistic, and it's a SHAMEFUL statistic, for the traditional landowners and for the societies that formed later.  It shows a disconnect between access, education & use of services that promote health & wellbeing.  It's something that all humans should feel compelled to try and remedy, not bicker about like halfwits.   The thrust of my remark is simple: I strongly suggest making careful, data rational decisions about your care.  There's a gamut of quack remedies out there for cancer, and they are marketed by grubby people to desperate people.   Cancer.  Diabetes.  Syphillis.  Hepatitis.  You want to find a cure ?  Sure, look anywhere you like, try anything you like.     But, in my opinion, if you choose to forego evidence based treatment with a chance at real, measurable health outcomes - you might as well be standing staring up at a medicine wagon with a vapid, drooling stare, and the person giving you the advice should be singing a song and have a dancing girl or two while they huckster you.   If you think you have an "alternative" to evidence based treatment, you're rolling the dice with your life.  Think twice, thrice, and take every advice.  Concurrent to the "horrible, destructive" conventional treatments ?  Do what you want.  In substitution to ?  You're making a terrible mistake.  ... View more

Hey Kerrie   There's no fixing this.   Cancer is a shit-show.  Absolutely shit.  I've directly experienced what you're going through (but from the sufferer's side, not the carer's), and I think there are two pieces of closing advice that I need to give:   1) As overwhelming as the current situation might feel:  it's temporary. Some days it might feel like "So .. this is my life now".  Things will NEVER get better.  But they will.  Right now, you're both deep in the trenches of it.  It's probably going to get worse, not better (for me, the 2 weeks immediately after finishing the chemoradiation treatments were the worst).   But ... in a relatively short period of time after treatment, all this side effect stuff starts to get better.  Then one day, they're yanking the PEG tube out (they literally grab it, double wrap it around their first, and tug hard and it *POPS* out spraying yucky stuff everywhere - hurts like buggery). But yeah, it's small comfort, but if you can compartmentalise a bit, the one benefit of being in deep suffering is that it can usually only get better. 2) Acceptance and Distraction You really can't change things, so you just have to get through it. If he wants to sleep (elevated on a few pillows is best), and can sleep or doze or moan and groan all day .. let him do that. If he's able to play games on his phone or whatever stuff he might do when bored - YES YES YES, keep him and yourself distracted wherever possible. The key to getting through this, in my opinion, is to keep yourselves distracted, not focus too much on any aspect of the cancer, just get through this treatment phase.  Let the future take care of itself, let the current pain take care of itself, just ... whatever it is ... find that THING, and ride it full throttle.  I don't know .. maybe he was a massive DOCTOR WHO fan as a child ... get the whole show and watch all 200 seasons (or whatever) of it back to back.  You know what I mean ? Distraction. Best of luck, I hope the end result of this is "all clear, we got rid ofthe cancer". ... View more