Hi Mate   Congratulations on the result.  For me, cancer free survival was paramount - any side effects, pain, chronic ongoing medical problems - happy to take any and all on the chin as long as I survive.  I'll bear it and smile, because I need to be here for my young children.   For others, that balance of quality of life might play more of a part in their overall process -and I reckon it's actually what allows morale issues to creep in.  I never really had morale problems, because I was militant about mental health and outlook and the ONLY thing was being cancer free.  I managed all the other stuff - but never really allowed it to upset me or grind me down.   You got the all clear, mate.  That puts you on the winning side of the dice-roll.   They probably won't re-scan, if yours was the same profile of cancer as mine, they organise routine vigilance checks, which statistically are enough to catch recurrent cancer (it either redevelops at or around the original site, OR in the lungs, and if it shows up there the prognosis is grim).   First year, I think it was every 6 weeks.  (Camera up the nose, neck rub checks, etc) Second year, every 12 weeks. Third year, every 6 months After the fifth year they lose interest, my doc said "if you get to year 5, it aint comin' back" (not sure that's strictly true, but it *IS* encouraging)   So yeah, just bask in the all clear, and vigilantly report all your symptoms and side effects (most importantly any new lumps).  Be aware that your body has suffered a profound insult - I'm still dealing with neck and face cramps, and weird fluidish lumps in my neck from the damaged and underperforming lymph nodes.   Congrats again mate, and best of luck with the side effects ... View more

Sandrina - I can only give you an answer specific to how *I* see the world, and I understand that a) I might be crazy; and b) there are many other ways to see the world   But for me .. if friends or family treat you poorly, they either a) don't love/respect/care; or b) don't understand   If it's (a) then it can't be cured.  I cut them loose and choose to have only positive relationships in my life.  If it's (b) it can be educated by clearly and carefully explaining what you need.   The thing about cancer is that it's *YOU* in the spotlight.  They are supporting cast.  If they can't do their jobs, you need to re-focus and make sure you tackle this fight in whatever way best fits you.  (Some people choose not to have treatment - crazy in my opinion - but everybody has choices available --- the main point is that they are YOUR choices.  Allow people to help you, influence you, advise you, guide you - but if they only give you stress and heartache - you need to do whatever is necessary to remove that noise while you fight for your life).   If they care, understand or both:  they should respect your wishes and help not hinder you.   Just my opinion.  Sorry you're in a difficult situation, I had to be very protective of my own mental health when dealing with cancer, and I feel strongly that every cancer patient needs to do the same thing. ... View more

Hey Bill - how did your scan go ?   Even if you had a positive result, I'm sure the doctor will have scheduled a re-scan.  The disappointment dealing with this can be pretty bad - I was rattled when I got my false positive, BUT, I trusted the doctor when he said it was common (and reinforced my knowledge by reading some of the studies and literature).   I tried to be pretty militant with my mental health and staying distracted during that therapy & recovery phase .. it was quite awful those first months after treatment - you are definitely in the trenches mate.  One little thing like a false positive in a test can be enough to knock the legs out from under you.   Hoping you got the all clear, buddy - and if you didn't, hoping you're keeping a positive outlook ( that wait for a re-test was like 2.5 months in my case, just have to set your expectations and find a way to enjoy life in limbo).   Let us know how you've gone ? ... View more

Just an update.     The anniversary for my treatment ending is Christmas Eve (2016), so I'm now 3 years out from that whole nightmare of diagnosis to treatment (the period AFTER treatment was actually the worst, with all the accumulated symptoms and side effects).   Doing reasonably well now, although I've suffered massive thyroid damage from the radiation, and it didn't get picked up until late in the game, so I've had some pretty serious weight gain that complicates my general health overall.   I get spasms in my face and cramps in my neck, and I'm having a scan on the 3rd of January just for vigilance.  The 3 year check went well, but I was a bit alarmed about a small nodule in the side of my neck .. the ENT/Oncologist said it was nothing to worry about, but agreed to conduct a scan.  Touch wood it'll be all clear.   At 5 years they lose interest of you, the doctors exact words were, "if you hit the 5 year mark, it isn't coming back"  (not necessarily completely true .. and you do carry a predisposition for new types of cancer after all the toxins etc that have been flooded into you via chemotherapy … but comforting words nonetheless).   SO yeah .. went from that white hospital room and the sorry doctor .. to 3 years later just having given my 3 young sons a very lovely Christmas, and an awesome birthday party for my youngest who turned 7.  Took his entire class to a place called "Inflatable World" where the little tykes could bounce around on massive castles, jousting arenas, all kinds of stuff.  Paid for everybody, so it cost an arm and a leg, but hey, if you're alive and well, why stress out about money ?   A couple of years out of treatment, I got a dog for my autistic son (which I slightly regret, as it turns out to be MY dog, and I don't have the appetite to look after an energetic puppy), and started learning the guitar.  I've progressed from woefully bad to just bad, which is good.  I can play a few songs that actually sound somewhat like songs.  So yeah.  It's not over yet.  Choose life, go about it as if you intend to survive and thrive.  Even if the overall result is a bit of a mixed bag, taking that positive outlook will mean you FEEL better either way. ... View more

In case the advice is somehow helpful, I really think distraction is important.   If there is that 'one thing' in your life .. whatever it may be … music ?  Let's use that as an example.  Let's say you always wished you had learned an instrument, but never did.  You often think back longingly, wishing you'd have learned the flute or guitar in your 20s.    Do that now.   Sitting, staring into the shadows in the wee hours of the morning - well, sometimes that's inevitable.   BUT ..   If you find that 'one thing' and make judicious use of it as often as you can .. you might find that some of the distraction actually works.  Even if you're still awake at 2 o'clock in the morning, at least you're deriving some kind of enjoyment and positive momentum in developing this skill that you always wished you had.   Sure, we all have cancer.  But we're not dead yet.  We don't have to CHOOSE a life lived in limbo, and if your future self could travel back in time, the day before your death, whenever in the future that may be, the first thing they'd probably say to you is "Don't fret !  Don't waste your time with agonising over this death anxiety stuff, make the most of it.  Find some sort of pleasure or fun or productivity".   I don't care if it's knitting sweaters for miniature dogs, doing incredibly arcane and difficult crossword puzzles .. but if you can think of that one thing .. or even three things .. and lay in whatever supplies and planning is necessary to fulfil it ------ you may still be awake at 3am, but at least you'll have something to do.   And yeah .. even if you don't feel like doing it - give it a chance.  Don't let cancer suck the remaining joy out of your life. ... View more

As someone who has been through it, I can sympathise.  Those first days and weeks are overwhelming.   My advice is to be pretty militant about preserving your overall mental health.  Compartmentalise those parts of your life that are within & outside your control, you know ?   The cancer diagnostics .. that's outside your control, just have to wait on the information and make good decisions regarding treatment.   For every cancer type, there are folks who defy the stats, and survive long term - maybe that's you.    You can't know.  You can't control it.  You can only move forward.  The anxiety, sleeplessness, feeling untethered - all of that stuff, your overall mental health - that is somewhat within your control, and I'd urge you to reach out and take charge of it.   5 years, that's actually a great starting point, because - if you can be confident that you have at least that long - it's not tomorrow or next week.  I had six months  (this was three years ago).  Three young kids, one of whom is autistic and depends on me.  Horrible, gut-wrenching stuff.  But I got through it, and you can too.     There are new techniques in fighting cancer, and a shift toward immunotherapy and DNA remediation (where the therapies are designed toward making the cancer visible to your natural immune system - which typically ignores cancer cells as a mutation - and therapies to supercharge your immune system once it can see the cancer).   In the next five years, some of those therapies may become available to you.   All you can do is get the best medical advice available, and make choices and plans on that basis.   But you're alive.  There's hope.  You need to find some kind of anchor inside yourself, reach for that hope and hold it as close as possible for as long as possible.   I think a key part to fighting cancer is finding and maintaining a mental outlook that best fits your situation and personality.  You might see yourself as a fighter, or you may prefer to blockade as much of the cancer stuff as you can from your day-to-day life.  You may rely on friends and family to boost you up and get you through.  Whatever your anchor is, I urge you to search for it.  I'm sorry .. but you're going to need it.   Best of luck in this fight.  Cancer is ridiculous, horrible, but it's not necessarily the end. ... View more

Haha, sorry about this:  one LAST thing   GET YOUR THYROID TESTED   You're in the trenches but you will start climbing out.  As you do, you'll experiment more with foods, trying to find things you can enjoy now.   With all these calories coming back in, it's possible your thyroid was impaired by radiation damage, and it can have devastating result.   My case:  at the end of treatment I weighed about 82k.   The radiation devastated my thyroid - it's taken a year of gradually increasing dosage to find the right amount of thyroxine (a synthetic substitute), my impairment is pretty severe. The thyroid regulates your METABOLISM. I didn't notice the problem in the first year, figured the gradual weight gain was from rediscovering food, and also a phase where I could only take soft foods, so there was quite a bit of stuff like ice cream, crème brule, that sort of thing. 3 years out, the medicine has gotten to the level where the problem is arrested and I'm able to lose weight - but there's a period there where I drastically reduced my calorie intake and was STILL taking on weight, imagine eating like .. 3 salads a day and putting on a half kilo. So yeah, a gain, over three years, of something in the neighbourhood of 40-50 kilos.   There's a lot of work to turn that ship back around - so if you get a thyroid test early in recovery, you can mitigate the problem as soon as possible.  I can't overstate how important this is for anyone who had radiation to the head and neck, it should be a routine part of post-treatment care.   Go to your GP, give blood, test thyroid. ... View more

Sorry buddy, last thing - the rancid taste dysgeusia is very rare, and it takes a while to fade away.  I don't think clinicians and dieticians quite recognise it, but it is fucking AWFUL.   Yours is starting to fade, because you can take stuff in via your mouth, even if it's distressing, just give it time.   The thing I forgot to mention:  Cuppa Soup.   In Australia we have these soup products, not sure about you - don't get the ones with noodles etc at first, it's basically chicken/beef stock in water, really.  But that for me was the first sustainable semi-food I could take, and I could take it warm.  There's something encouraging about that first warm food after months of plugging stuff in through your PEG.   So for me it looks a bit like this (starting from the top and building to the next step):   - sips of water - cups of water - soda of choice, milk, juice, other drinks - cuppa soup - other liquified meals:  like get a juicer and liquify high nutrition vegetables and get creative throwing some stuff in there for calories - custard, ice cream, whatever - start experimenting with sweet solid foods, stuff that you used to like, but ideally soft foods, example, ice cream, yoghurt, etc - move onward and upward from there, trialling different foods   (It's not just the rancid taste, but if you had chemo it's likely your tastebuds are altered and some but not all of your taste may come back.  So you're also experimenting with foods and taste to discover what foods you now enjoy and dislike in the new regime.  The post cancer 'favourites and dislikes list' will look very different to the pre-cancer one) ... View more

And regardless what the world tells you:  It's YOUR body, mate.  It's your life.     If trying to take food or liquid by mouth is still distressing, if you genuinely had that rancid taste dysgeusia, then most people won't understand it.  It will wither away.  Just try sips of water until you can tolerate them.  Once you can tolerate them, up it to lemonade or some kind of soda, then eventually work toward getting those shakes that you take via PEG in via your mouth.   Once you can chug down those shakes, get the tube yanked and re-learn how to eat/drink/swallow.   The main thing is your swallow, mate - even if there's nothing in your mouth, try to swallow.  Its weird because without saliva you don't really need to or feel the urge, but ideally you want to keep those muscles working - if you lose the muscle memory of swallowing, you can be lying down 2 years later and feel a bit of accumulated mucus / slime in your mouth and have an episode where you are trying to swallow it down but it feels weird and unnatural.   Once you can sip water, keep it with you all the time, take sips constantly, swallow.   Until then, if anybody is urging you to try and eat actual food, that's fine - try.  But don't persevere multiple times per day.  If it doesn't work, tell them in no uncertain terms, you are Mohammad Ali, you're managing it.   It will get better, the start is being able to sip water.   If you can already to that without distress, that's AWESOME.  You ramp it up from there.  But once you can sip water, do it all the time - keep that swallow mechanism working, and also get your body used to having a bit of irrigation in the old airway/food/upstairs plumbing system. ... View more

Hey Mate In a year, you won't know yourself.  I know you want to hear "in three weeks" or "in 10-12 days", but everybody's mileage will vary and for me, side effects were still nightmarish about 3 months out of treatment.  The two most important things are: - all this dark shit WILL end, you will start to feel better, the only way is up from here, it just takes time - the PET scan.  I hope you get the all clear, mate.  That's what it's all about.  NOTE:  a high percentage of FIRST scans come with a false positive .. the scan can't differentiate between cancer and inflammation from all the nerve damage etc.  If you get a positive, they schedule a re-scan in 2-3 months.  If this happens, don't deflate.  I had the positive and then the all-clear.   My advice on this - do everything you can to distract yourself and persevere your mental health. Be militant about it.  Try your best to not let your mind go there.  Position yourself in the role of fighter,  Muhammad Ali trying to Rope-A-Dope Smokin' Joe Frasier.  The symptoms, the problems .. you are not VICTIM to them, you are MANAGING them.  It's a jedi mind-shift, but you have to try the trick.  Distract yourself.  Whatever your 'thing' is, indulge in it, bathe in it.  For me it's computer games.  You may like the collected works of Agatha Cristie - whatever that thing is, try and make it the main focus of your free time, us it as a mental distraction tool so you don't spiral into anxiety and distress over the symptoms.   The symptoms will go away. The anxiety sticks around.  Not sure how long, but 3 years out of treatment on Christmas Eve, every cough, sore neck spasm, whatever - I often worry that the cancer has come back for a visit.   The main thing is this scan, matey - hope it goes well.  Best of luck. ... View more