Sorry just realised your post was May 2009. but someone had replied a few days ago, resurrecting it. I hope you're still with us .. it's been almost 8 years .. I hope you're still with us, but if you're not.. I hope you're somewhere better. ... View more

It's an awful blow, and a lot to process.   I don't know your situation, if you have close family, or kids, but one thing I'd offer .. .. you're not dead yet.   Cancer treatment these days is progressing rapidly - some scientists believe that we're inching ever closer toward a cure (and apparently some of those scientists - generally micro-biologists specialising in cancer and human immunology - tend to think that the key is finding was for your immune system to tag the cancer, and then super-boost immunity so that you can destroy it yourself ... leaving some of the more barbaric orthodox treatments - blasting with rads and toxic chemicals - by the wayside).   One thing I'd suggest you do:  ask everybody - every single oncologist or cancer care person you come across "can you get me into a clinical trial".  Even if the treatment is considered palliative, or to give you extra time .. approach it in the hope of being surprised.   You can't control cancer - but you can control how you approach it.  I'd urge you to fight, even if the doctors say there's no hope of overcoming the disease.   Best of luck, and sorry to hear about the bad news. ... View more

One little addendum on PEG tubes, in case this is ever of any future use to somebody grappling with the same set of decisions I did.   I had my PEG removed today, as I've been pushing myself pretty hard to take food & liquid by mouth.  Still not really successful with food, but I can take liquid even if it sometimes hurts or is mucousy - so anything that I would put into the PEG tube I can now take by mouth.   When they pull the tube out, it has this inverted rubber seal on the inside of your stomach that kind of collapses - basically it's a little like this:   =============II={   (With the === representing the tube and the II representing your tummy and { being the plug that is inside your tummy holding the peg in place)   Basically they grab the tube, double wrap it around their fist and give a long hard yank.   For me it hurt like the blazes, well .. maybe a level 7, followed by a minute or two of level 4-5 stinging.   Apparently, sometimes the plug wont collapse properly and come through the stoma hole, and in the old days they'd let you poo it out - but supposedly that's not safe - so if it does break off they have to go in with a scope and recover it - but it's quite uncommon.   Also sometimes the plug, when it's yanked, can damage a blood vessel inside your stomach, and cause internal bleeding, which could have you wind up in the emergency room (again uncommon).   So, getting the PEG out is a minor ordeal, some pain, but overall no biggie (if you've been dealing with cancer treatments you're tough as nails, right?).   I stand by the earlier endorsement that if you're getting radiation treatment for head and neck cancer ..... get the PEG, you're quite likely to need it. ... View more

In my opinion, a friend respects your viewpoints, and your boundaries.   If for some reason they fail to do that, you educate them.   If they continue to fail to do that .. they are not a friend.   That goes both ways - you shouldn't dismiss well-meant advice, even if it's unwanted, but you should be able to say, "thanks for that viewpoint, I've decided to focus on orthodox therapies and I need to keep my head balanced and focussed, so please stop trying to persuade me - my decision is made and you continuing to bombard me with information is just distracting me and making me feel awkward and uncomfortable.  Please respect my preference."   That may sound harsh - but it's actually simple, direct & neutral.  A real friend would receive that, accept it, and do their very best to comply with it.   Someone who is not a real friend may toddle off in a hissy fit (and, in that scenario, good riddance).   Just my opinion - I'd respectfully tell her to stop, and I wouldn't get too bothered if she were upset by that. ... View more

I think it's useful to compartmentalise a bit ..   .. you can't change what you feel, and you shouldn't obsess on it or condemn yourself for it .. if you're angry or frightened, you should go right ahead and take whatever time you need to unpack and process that.   But, I'd suggest completely separating your emotional response to the disease from the treatment of the disease.  You need to survive, and treatment (however daunting) is the way to do that.   So when it comes to treatment, try not to think about it too much.  Learn, take the advice, but pull yourself back and look at things clinically - try and approach your treatment in the most practical way you can.   Everything you feel, whether anger, denial, frustration, fear .. put that in a box marked "deal with at leisure", but when you think about and approach your treatment, put that in a box marked "cool as a cucumber"   Just my advice - personally I think you need your head straight for treatment.  You need to listen effectively, ask the right questions, and absorb and digest everything the doctors tell you. ... View more

One other comment - I know a person fighting cancer at the moment, for whom their treatment is considered "palliative" (to reduce suffering or improve quality of life - ie deal with the symptoms but cant cure the disease).   He has lung cancer, but also apparently in his liver and I think his pancreas.  He was given weeks/months to live (about 6 months ago).   He looked at clinical trials, and is taking an immunology oriented treatment, no more destructive chemo.  Apparently the cancer in his body has reduced 80% and they are cautiously calling it "in remission".   So you could ask about clinical trials and immuno-focussed treatment methods, maybe even in the interim while waiting for the MRI, so if they do confirm pancreatic cancer, you can make an informed decision about what to do (perhaps both surgery AND immunology?)   Anyway thought I'd mention it in case it's worth a think. ... View more

Ah crap, sorry to hear about it.   On PET scans, my experience so far was just the initial diagnostic step, where they confirmed the tonsillar cancer and adjacent lymph node cancer (and suspected a tiny amount in the opposite lymph node).   I have a PET scheduled for 21 March, and my understanding was that it's the definitive diagnostic tool for cancer - and the test can result in one of three outcomes:   All Clear:  nothing lights up, also called "NED" (no evidence of disease).  Fingers crossed for this. Uncertain:  they see something but arent sure exactly what it is (as you say, it might light up for different infections or other problems), in this scenario they'll watch and wait, and re-test after an interval (I think about 3 months) Cancer Detected:  if they detect cancer then they put together a treatment strategy *   (* in my case this'll be a problem, because I've had all the radiation I'm allowed and chemo isn't directly effective (apparently) against head & neck cancer, it's supportive/adjunctive - so if they still find something, I better hope surgery is an option!)   In your scenario, it sounds like they're pretty confident that it's a malignancy, confident enough to need to form an action plan rather than letting it sit in the "watch and wait" category.   Honestly, I wouldn't get my hopes too high about a false positive - hey, it's possible, but I think the best thing you can do in this scenario is pose the questions to your medical team and if they are concerned, move forward on the basis that they are right.   That said, until the 9th of March .. you just don't know, so you need to protect your mental health in the awful month of waiting ahead.  Maybe resolve to not go online and read about cancer stuff, focus on family .. I don't know what to suggest, I just know that waiting is a special kind of hell that is completely different to tolerating side effects of treatment, but equally hard to face up to.   Sorry again to learn about the continuing fight.. ... View more

Hey, it's not just a mother thing.   There are parents out there who neglect, even hurt their kids.  (I never understood this mindset, I can't relate, I'd walk through fire for my children).   But I think the norm, when you become a parent is to put the welfare of your children in front of yourself.  As a father confronted with cancer, the end-of-life aspect of it bothers me horribly, but it is not for myself.  It bothers me because of the impact my death would have on my three young children.   I cannot abide this, so I will fight to my last breath.  I won't submit on any level.  Every day I'm here, I'll love them and do my best to be a good dad, no matter how sick I am.  I'll be dragged from this world kicking and screaming.   I hope you can fight hard too, I wish you the best for your fight with cancer, and I hope your kids don't have to face the loss of another parent anytime soon.     ... View more

Hullo Again   I had 7 weeks of radiation, and three infusions of high-dose cisplatin.  (The chemo requiring an overnight hospital stay - except for the last dose, which they fractionated because they were worried about permanent hearing damage).   On that, yes, I'm still getting tinnitis.  It's intermittent and was much worse directly after the chemo - but it's still there .. I don't know if it will go away fully or not, but I hope so.  (If not, small price to pay to fight the cancer).   I never lost my voice, but when the mucositis was at it's worst, talking was sometimes difficult - just because of the thick mucous accumulating in my mouth and the need to spit .. so I would sometimes sound like a cartoon supervillian or someone with some kind of speech impediment as I talk/gargled through a thick layer of yuck.   (And yeah, I used flat mineral water and every other thing the internet suggests, including a concoction of magic mouthwash - which has viscous lidocaine (for numbing), sucralfate (for a barrier), antihistamine (to reduce phlegm) and other bits and bobs all mixed up by a compound chemist.  You could google it for a try, as it was OK ... from my research the best mucositis treatments are new patent medicines available in the USA, and I think maybe just now starting to distribute into Australia .. google medicines like "Gelclair", which advertise symptomatic (and prophylactic) relief of mucositis.  I couldnt get my hands on any in time to help me.   I stopped eating around week 4-5 of treatment, mostly because of the rancid taste dysgeusia.  Everything in my mouth tasted contaminated.  (A side effect of the chemo).   It's gone now, and I am able to take everything I need by mouth - but no solids .. just hydration and the formula that I'd otherwise put into the PEG I can drink by mouth now (so I'll look at getting the PEG removed in the next couple of weeks).   Yes, I still have a sometime sore throat.  Basically, the radiation damage you suffer over the course of treatment is .. well it's just a horrible insult to your body.  It's worse than a normal wound or injury, because the treatment actively attacks the stem cells (which normaly help you heal), so the wounds can be severe and slow to heal.  But my pain is very manageable now .. just 2 panadol today.  It was at it's worst the first 2 weeks after treatment.   When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst).  It's great to no longer have to go into hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty-much bed-rest and just ticking away time, before you start to heal and feel better.   For me, it went something like this, over the span of treatment:   Week 1:  first round chemo & 5 rads (felt fine, some nausea from chemo) Week 2:  (5 rads) minor tinnitis onset from chemo, some vomitting, radition fine Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste Week 4:  (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomitting from chemo Week 5:  (5 rads) noticable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing Week 7:  (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine Week 8:  (first week post treatment) awful awful suffering, vomitting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days Week 9: (second week post treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturising cream).  Pain lessening, but mucositis still awful, nigh cramps in legs Week 10: (third week post):  exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc Week 11: (fourth week post):  turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was.  Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant Week 12:  (fifth post):  mucositis backing off more, can now take most nutrition and hydration via mouth and thinking of getting rid of PEG.  Pain is manageable, dont require anything more than panadol.  Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels   SO ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully it gives a little perspective.  Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily .. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself.  Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.   Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick"  ... View more