As a person who has had to deal with a potentially fatal cancer, I highly recommend picking up a musical instrument during or after treatment.   "I'm not musical" is really just hogwash, I promise it's a technical skill.  A proficiency.  Anyone can learn to play, and once you have the techniques you might find that you are capable of inspiration when making music and you're "musical" after all.  But anyone can learn the techniques.   As a cancer sufferer, I think it's a sincere and obvious way to say "Fuck you cancer.  I am taking up a fruitless hobby that will take me hours and hours to get BAD at.  I intend to thrive and survive, and come hell or high water I will progress from BAD to BELOW AVERAGE and maybe even take it further !!!"   Cancer tries to rob you of hope and your forward vision, your sense of 'a future', and I think starting to learn a new skill or hobby is a wonderful way of defying that, allowing yourself to move past the cancer and slowly start forgetting it and moving on.  Life in limbo sucks.   And personally, I find it hugely rewarding.   I picked up an acoustic guitar about a year and a half ago, fitfully mucking around with it (about 2 years after cancer treatment when I was kind of meandering around spiritually).  It's helped me to have a sense of focus and direction even if it's just in one area of my life.   And I've gone from sounding like a cat experiencing severe diarrhea to actually being able to play a half dozen songs to the point where you can actually RECOGNISE the songs.   And yeah, I'm not musical.   At first, you can't reconcile the musicality of the instrument and your mind's idea of the song.  If you try and sing and play the guitar at the same time, it all falls into a shambles and feels really frustrating.  It's like trying to concurrently think in French while speaking in English.  BUT .. after a few months of effort, you reach a point where the playing and chord changes become an unconscious skill.  You are able to start to sing along and make songs that people can hear and recognise and sing along with. It's good, but above all else it's an investment in your future, a way of saying "I intend to live.  My life doesn't have a set expiry date.  I'm going to develop this skill, and impress and torture my loved ones in equal measure" ... View more

I couldn't eat for months after treatment due to the rancid taste dysgeusia and when I could eat it was only liquid - basically taking the PEG shakes but via mouth.  After a week or so of doing that, taste started to slowly come back.   If I had to think back and guess a trajectory it looks something like this:   Reliant on PEG:  for me 3 months / guessing for you no more than 4 more weeks After PEG removal:  spent about 3-4 weeks taking shakes only / based on you eating/drinking this early, would guess a week or less From there:  soups, then mushy stuff like ice cream, custard, etc   I think rich foods like crème brule etc helped to stimulate taste - but once you're eating again, it just gradually improves week for week until it hits a ceiling .. I think the ceiling might physically be reached after only a few weeks, but you kinda spend a few months experimenting with different foods and trying to work out where you're at.   I think you might lose things at an ingredient level - eg, milk is good for me, and I can taste most of milk-related food products, but potato is no good, can't taste it in mash potato or whatever, through to chips and batter and anything that might have potato in it, for some reason I just can't taste it at all.   But yeah, if I had to guess based on where you're at now, I'd frame my expectations toward gradually transitioning from PEG to shakes & soups over the next 4 weeks (and once you've consistently not needed the PEG for nutrition/hydration schedule to get it yanked).   Once you're on soups, allow a month or something like that to slowly get the bulk of your taste back.     After that, you may still make discoveries after six months to year, or maybe that's just the adjustment period to finally get used to the new normal. ... View more

Angela - one really important thing for you to take heart from:  if you can swallow *anything* at this stage, it's a great sign.   I was PEG reliant for almost 3 months following on from the end of treatment, and, like you - the 7 days following on from treatment were the worst in my life.   It got better over time, a slow process for me.  If you can take food/water by mouth at this early stage, you should be really encouraged that your recovery will have a pretty quick trajectory. ... View more

Hi There   My name is Simon.  I'm 48 years old now.  I hope to live to be at least 60 (because by then, my little children will have grown into adulthood).  I have love in my life, and my wife and children live in the light of that love.   It's a real gift, because 3.5 years ago I was diagnosed with pre-terminal cancer.   I'm writing because my timeline might encourage you if you're dealing with the grief and fear of a serious cancer diagnosis (and what cancer is NOT serious?).   September 2016:  Diagnosed with advanced tonsil cancer.  Starting to spread.  6 months to live without successful treatment.  Treatment considered a 50/50 shot unless the cancer was already spreading  (but over time discovered the odds were better than that .. on diagnosis I was told my survival was a coin toss at best).  For the first week after that diagnosis I was untethered and had no idea whether the cancer had just metastasized.   December 2016 (Christmas eve):  Finished treatment.  It was an ordeal, I won't try to downplay it, all in all the treatment and side effects were somewhere between Awful and Horrible.  But I put my head down and got through it.   March 2017:  Post treatment PET scan.  I was told "it's inconclusive - there's so much damage and inflammation, the test has no way to differentiate between that and cancer)   May/June 2017:  After agonising months of waiting, get the all clear PET scan.   December 2017:  First anniversary.  Likelihood of recurrence dips slightly   December 2018:  Another dip in the likelihood of recurrence.  Still having checks every 6 weeks, camera up the nose, physical exam.   December 2019:  Three years out, statistically take a major dip in the likelihood of recurrence.   So now I'm waiting on 5 years cancer free, then (fingers crossed) 10, 15, 20.  The doctor said I can reasonably expect to live a full life.    Yeah there are side effects, and yeah life is not what it was.   BUT I AM ALIVE.   Maybe your diagnosis is better than mine was, maybe worse.  But mine was pretty grim.  I got through it.  Take heart.  You're still alive.  YOU CAN TOO. ... View more

Hey Jen - its interesting timing that you get this symptom during the pandemic, and impairment to smell and taste have been circulated as possible signs of COVID infection.   They are also signs of other general infections, especially if they're already impaired somewhat from chemo/radiation.  But they can also be signs of cancer and other problems with the body, nerves & brain.   I've never experienced it, but my comment would be to take it pretty seriously and report it at your earliest convenience, to get medical advice.  (Saying this because you hinted about being in total isolation, so might be a bit unlikely to seek the advice?)   I've had taste impairment from the chemoradiation, but it was an initial drop (complete loss) during chemo, to rancid-taste dysgeusia, followed by slow receovery where it came back over a long period of time (iterative slow improvements over a year, plateauing out at about 80%ish of where it was pre-treatment).  No experience with loss of smell.   For me the big concern is if these changes have come on recently, and there's no clear reason for them.  I'd just urge you to get checked out.   ... View more

Hey Sheryn   It's a really shitty thing - but if the cancer is going to recur, it typically does right away - ie in the first year.  Each year after treatment means less likelihood of recurrence.   I could never wrap my head around the math, at one point after treatment and a clear PET scan, a doctor said to me "your odds are about 95%+ that you've beaten the disease"   Then in the first year of review another doctor said "in the first year, with your staging, you have about a 30% chance of recurrence".    So it beats me.  Ignoring probability, it does happen, and the later your staging, the more likely.  I think my disease was more advanced than your dad's, but I just got lucky (touch wood)   Things I've heard about treatment options: I was told that if I have recurrence, radiation was not a possible pathway. I was told that surgery was the only option, but after radiation my H&N cancer will have shrunk to a size that surgery becomes viable. I was told that the complications and impairment from a H&N surgery can be pretty devastating, they have to break, remove and rebuild your jaw, important nerves can be severed, all kinds of nasty stuff. BUT, I've also heard of cases where people have had supplemental radiation when the cancer recurred in a nearby area. I was told that for tonsil cancer, supplemental chemotherapy is useless, at treatment it only increased the success rate by 2% (for me), the main gun brought to the fight was the radiation.  The radiation oncologist said that if you suffer a recurrence, more rads is unlikely, more chemo is useless, surgery is the only pathway, aside from new emerging immunotherapies. On immunotherapy - I've also heard of some exciting successes -- my step father was in late stage metastasised cancer - lungs, pancreas, basically all over .. he was in palliative care with weeks to live.  He began an immunotherapy trial and about 8 weeks later they were cautiously using words like 'remission'.  He still ended up dying, but he got an extra couple of years.  (Don't let anecdote colour your expectations though, just suggesting it's worth looking into and asking all doctors)   As a cancer sufferer, I've had to prepare for death, I've had to look that in the face, and in my experience, not shying away from it is the best approach.  I hope your dad survives, and I wish you the best - but given the seriousness of the situation, make sure that you do and say anything that needs to be done & said, and enjoy what time remains available.  (None of us know when we're due to shuffle off, so that applies equally to everybody, I guess) I reckon a recurrence that early post treatment sounds pretty grim, and I'd suggest leaning heavily into it - interrogating all the doctors on every viable treatment pathway and it's chances of success or lengthening his life.  (Then make an informed choice)  ... View more

I remembered the name of that medicinal skin-care trial I participated in (but got the control group, so can't tell you if it's effective first-hand).   Strata XRT   (http://strataxrt.com/)   Not sure if it's available in Australia, but it can be bought online, haven't looked at the costs, just offering it up as info.  In theory it's a medicinal skin-care treatment designed to both prophylactically help minimise radiation burns and dermatitis .. and also to treat/reduce after the fact. ... View more

Buddy the only thing I know of is this product 'magic mouthwash'   It isn't commercially available here in Australia, I had to get the recipe and get it mixed up by a compound chemist.    In principle, it's supposed to line the throat, easing discomfort from anything passing down, and it includes a numbing agent, antihistamine, anti-inflammatory and disinfectant-type effect   Mileage will vary from person to person I reckon, and mine wasn't mixed well, was lumpy and weird instead of fluidy .. but if you look into it, in theory it's just the thing to provide some kind of relief   https://www.healthline.com/health/magic-mouthwash ... View more

Hey Hey - I can say firsthand moo goo provides relief and it doesn't sting or anything when applied.  My severe burns really hurt when putting on basic stuff like sorbalene. If you don't want to shop online, check the hospital pharmacy.  If they have a radiation oncology ward, then they probably have a pharmacy that has moogoo on the shelf.  (RBWH did).  That's the best tip I can think of anyway, sorry if it doesn't yield fruit. ... View more

When I did mine, I agreed to a clinical trial of a new skin cream (this was 3 years ago), I'm so sorry but I can't remember the product they were trialling but they wanted to prove that it statistically improved outcomes with regard to radiation burns and dermatitis. About as useful as a concrete soccer ball, I am. I don't actually know if it works or not, because I got the control group and was given sorbalene only .. and it was AWFUL, I had to quit the trial because the sorbalene gave no relief to some really nasty burns BUT, this is where I may have something of use, and it might be cheaper and more accessible than this other stuff anyway: MOO GOO It's an off the shelf skin-care product, natural ingredients.  When I had pain and stretchy, leathery skin from the radiation and needed to go off the sorbalene one of the senior nurses recommended MOO GOO and it was really good for relief.  Rub it on generously, cover with a thick dressing, and your neck feels a bit better while it's healing up.   ... View more