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

There are common themes in these forums - you can stumble into little bubbles of insight around having or dealing with cancer.  One of the sad themes is where you'll sometimes read about how isolated and alone some people feel.  They have little/no/estranged family, and can't think to face cancer by themselves.   Me ?  Ohh what bliss that would be.   For me, the gravest (and ongoing) concern about cancer is surviving long enough that I do not subject my young children to the trauma of losing a father.  In ten years, my youngest son will be turning 17.  That's still a bit early, but OK - I can wear that on the chin.  Ten years it is.  Minimum survival required.  My eldest will be 20ish, my middle guy who is autistic will be 18ish.   Abandoning any of these children is a kick in the guts that completely unmans me.   Even contemplating it ten years from now leaves me awake at night, staring into the dark, fretting.  "Will my autistic guy be OK ?  Will he stay strong and happy ?  Will my death de-rail him ?"   So .. when you have significant people in your life, I personally think it's harder.  Working out how and what to tell them is part of that.     So.  My answers:   Partner.   Well, she deserved to know.  So I went from the hospital, home, sat her down and told her.  Thing is there's TRUTH and there's truth and there's "truth".  I carried the weight of some of the hard truths - there were just too many unknowns, and if I said stuff like "the doctor said that I have maybe 6 months if treatment doesn't work out"  .. or "hey, I was reading online, and it looks like my type and staging of cancer has a raw survival rate of about 40%"  .. well, she would zero in on some of that stuff and potentially break down.   I'm not saying that I deceived her, or withheld crucial information or didn't have faith in her ability to cope - it's a little more subtle than that.  I did a strategic and carefully considered diagnosis of what information was fit for release, and triaged accordingly.  It's worth noting that this wasn't entirely heroic too - I needed her strong and sound of mind, it would only cripple me to find her awake crying in the night.  It was basically a careful assessment of what was best, hard facts or massaged truth.   So .. yeah, she had transparency - she was included in the clinic where we asked doctors more questions and learned more about the disease - but, basically I chose to give an immediate disclosure, but I always took a more optimisitic outlook than the raw facts might have justified.  In retrospect, I still strongly believe that was the right choice.  I think it's what she wanted and needed.  Keep it as light and breezy as you can … until you can't.   Immediate family:  I chose to withhold that it was a life-threatening illness from my children.  I eased them into that daddy was 'quite sick' and that he had to visit hospital overnight a few times - they just didnt know it was for chemo.  My intention was to ease them into the information as I myself had more discovery - and once I got the all clear after the treatment phase, I gave them a heavily curated version of it.  If my prognosis had only deteriorated, at some point I would have sat them down individually and done my best to explain it - as well as recorded messages for them later in life, as they aged, so that they could have a little piece of me left over after I was gone.   Extended family:    Kind of estranged, and over this experience they only showed me more of why that estrangement happened - so I cut them off completely.  A disclosure was made, that's all.   Friends:  I don't keep many friendships, only the extremely long-term and close kind.  I explained my situation, and that I was tackling it head on and didn't want any distractions.  They were there if I needed someone to talk to - but, I didn't.  My personal preference was to 'circle the wagons' and focus my capacity and energy on fighting the disease, and on being with my immediate family.   Rest of the World:  situational, if it's in some way meaningful to talk about it, I do.  It's just another fact, unadorned by any kind of discomfort or awkwardness.  If it's relevant to a situation, I talk about it, if it's not, I keep it private.   ONGOING: It's probably worth exploring that cancer isn't a battle, it's a campaign.  It might feel like, after seeing the white flag and winning the battle you think "aaah, it's over". But it's not.   For the rest of your life (and especially for the next 5 years) recurrence fear will follow you around like an unwelcome shadow, potentially tainting or distorting a lot of the light you might otherwise have in your life.   You'll carry that anxiety.  Especially in the first few years after treatment.  Depending on the class of cancer, the side effects can be horrible.  And every little cough, every choked up piece of phlegm, it reminds you of that chronic cough that brought you to the doctor and began the whole original diagnosis.   So you worry.  And you have to decide who to share that with, and how much to share.   So you run through that list again - partner, family, friends, rest of world.   My two cents ?   Conventional wisdom, and anything from an entity (like cancer council) will be 'rest of the world' --- Support Groups !  Professional Help !  Naaah.  Maybe that's for you, not for me.    Partner, Familiy ?  Poor buggers, they've already been through the trenches, and may be feeling that they've come out of a tunnel.  No need to drag them back in every time you start to worry about what that little lump is and is it going to kill you.   Friends ?  Yeah, potential there - but it's probably worth being a bit tactical in how you use it - I mean, do you really want your time with your friend to be dominated by this disease which already dominates you ?   For me, the only answer winds back to that Manly Stereotype.  Find your inner strength.  Adapt and carry the weight of it yourself.  Until you can't.   Is that ignorant ?  Maybe.  I think you become strong by solving your problems, and the first and best recourse is available to you right now.  It's inside you.  Try that.  Focus on it.  Develop it.  Until it doesn't work.  Then .. well, for this recurrence fear stuff .. maybe a counsellor or something.     But yeah, that's just me.  Actually modelling your own patterns after mine would probably be inadvisable. ... 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Mate, if I can be completely frank with you - I'm not an expert, I'm just a guy.  I've been facing a life threatening cancer and right now am dealing with a possible recurrence issue.  I understand life threatening illness and empathise with fellow sufferers.   It sounds to me like you're diagnosing yourself with untreatable cancers that you don't even have ? I think you need care, mate - sounds like you've tried talking to your doctor and gotten a pretty poor response, but I think you should persevere.  Any problem needs to be broken down into individual pieces that can be tackled and ideally overcome.  "I better not get my throat fixed, it's probably cancer, and if it doesn't kill me the cancer in my rectum will,  or I'll die in surgery … and …. etc" … you deserve better than that, mate.  I think you should try and talk again to your doctor, and also specifically raise getting access to a counsellor - I don't know exactly what your situation is, but for me, they have counsellors working in cancer care at the hospital I attend, and I can call them at any time and seek help. I think you need to find a way to navigate forward, and it sounds to me like you need proper help to do that.  I'm sorry that you feel almost as if you don't belong in your body .. I feel that too myself sometimes (mainly from lack of sleep I think!) .. but I wouldn't be defeatist about it … I think everybody deserves hope and some kind of forward direction. If you're not getting that now, I just reckon you shouldn't give up, but try and find new avenues to get the support you need. I'm sorry mate, I'm not trying to impose on your way of thinking and living - it just sounds like you've given up on any hope of any kind of viable future, and I think you should do a little stock-take, and see if you can find some way to galvanise yourself into continuing to fight (for life, health, happiness and wellbeing) ... View more