Kerrie, the mucositis is hellish.  I understand that there's a spectrum to it, and i was on the severe end, but it sounds like your hubby has a pretty bad case too.   My comments: - toward the end of treatment and in the first fortnight following treatment : this was the worst time - the three months following treatment were frustrating, as it I would often wonder "will this EVER improve" - six months after treatment it was more-or-less "better" - "better" is a new normal : it means spitting all the time, coughing up phlegm in the morning, unfortunately I'm 2 years out and still experiencing this, it just becomes part of your life   My suggestions: - if he can take food or drink by mouth, hot water with ginger in it, or hot coffee, whatever he can tolerate.  There are beverages that help .. "cut" .. the mucus, even if they're not actually doing anything in a clinical sense, it gives the sense that the cloggage in the drain is washing down into the sewer - drinking as much water as you can throughout the day has a small but tangible impact on making the mucus more tolerable .. it's just clearer and moister and better to manage - if you take a hot shower and bend over at the waist as though touching your toes, and hold that position with your head downward as long as you can and try and "collect" mucus, then lift your head upright and hawk/cough up phlegm, you should be able to collect a good oyster sized (sorry!) glob of goop in the morning, and once it's gone your airways feel clearer and less irritated - if he's really in the trenches, google search "magic mouthwash", it's a special recipe you can have a compound chemist put together, it's a bit expensive, but gargling/drinking it can help a little / a lot / not at all .. mileage varies.  I cant remember the exact details, but the compound has a quality that allows it to line the airways, minimising sensitivity - if you're on the borderline between a good old spew and being able to keep it down, don't fight it, spew.  I've found its better to get the garbage up and out and move on - DISTRACTION:  find things he loves doing, or even just things that numb him, like zombie-ing out to a bing-session of Netflix dramas or whatever.  It's a tough time, and I can't over-state how helpful it is to stay distracted. - Saliva:  it helps, devastated parotid/salivary glands exacerbate the mucus problem, as one of saliva's functions is a kinda gravity drain .. keeping gunk washing down into the septic tank ... so anything he can to do stimulate saliva might be worth trying.  Pubmed shows a small but statistically meaningful benefit to acupuncture in restoring saliva loss .. chewing gum is also supposed to help stimulate saliva, look into all that stuff   Can't think of anything else, above is just my two cents, and it may be worth only that - but hopefully it's of value and offers even a small amount of assistance.   ... View more

(sorry, "Boony" - by the time I was writing my reply, I could no longer see the history to check the spelling, so took a guess at "Boonie", humblest apologies) ... View more

Hullo Boonie   Mate, I didn't have surgery, so I don't think my experience directly overlaps with yours, sounds like nerve damage to the tongue is one of your major problems. I did have a similar disease profile, and in the Treatments and Side Effects have a long thread with a bunch of comments and advice from myself and others (regarding that specific tonsillar cancer, combined Cisplatin chemoradiation).   Stuff like mucositis, saliva, loss of taste, radiation induced thyroid damage, nerve damage to the neck (spasms), heh, cancer is the gift that keeps giving, eh ?   Anyway, just linking in case any of it's useful, but that tongue damage stuff sounds pretty tough, I didn't experience that.     https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-side-effects-from-head-amp-neck-cancer/m-p/25626#M2182 ... View more

Hullo Both   That remark about the brain recognising low saliva and triggering additional production (but not differentiating from mucous production) is really interesting - will have to read up on that.  Because I certainly think that since the initial mucositis and well into recovery, I'm overproducing some pretty gross mucous.   April- I no longer carry a water bottle around, saliva continues to improve over time for me, rather than plateau out ... but for a person who speaks professionally, it must be really tough.   I've recently been taking singing lessons, and start to understand that it is a long-term impairment on your voice.    The lessons are because my ten year anniversary is approaching, and I have a surprise dinner planned (she will think we are going to have a low-key dinner at a restaurant, but friends & family and some members of the public will be there).  I'm going to serenade her in the middle of the evening in front of everybody, ha-ha.   "I don't know much, but I know I love you".   The singing lessons are .. well, I want to have a bit of swagger when I do it ... I'm fine with the performance being cringy - but I want them to be cringing due to emotional intensity awkwardness, not the horrendous quality of the screeching 🙂   But yeah, the impaired saliva for a person who speaks/sings/raps/recites poetry every day would be a real drag, my sympathies.   One thing though - for any future folks who might be researching side effects and the waves that they come at you - at some point there's a chance that you'll be planning ridiculous stuff like cringy singing in public, with little or no thought to cancer.   Because another side effect of cancer is anxiety, contamination of hope - but I think that one comes out of the gate strong, and starts to slowly erode over time ... ... View more

When I originally started this thread in January 2017, I had just finished 7 weeks of radiation and three rounds of chemotherapy for an invasive and aggressive head & neck cancer (starting at the tonsil, but abutting the jaw, soft palate, and the local lymph nodes).   I wanted to understand if the (horrible) side effects I was experiencing were common, to kinda guage where I was at, recalibrate my expectations.   I guess it turned into a kind of side-effect diary (with some friendly chat and comparisons in there), and I realise that it's been viewed more than 5000 times, so it may be useful to folks with a similar disease profile to mine, so I just wanted to give an update on one major new thing that I wanted to add into the mix, as I've learned it's statistically relevant to H&N cancer sufferers: Radiation Induced Hypothyroidism OK, so basically, with lymph nodes targetted, there's apparently a pretty decent chance that the radiation can affect your thyroid.   I can't say if the impairment is temporary or permanent, but at least hypothyroidism is a well understood condition and managed effectively with medication. So now, 2 years out of treatment, let me update briefly on my personal side effects in case it's useful to someone researching their own condition (sorry matey, cancer is a shit-show): Mucositis:  it's 2 years and I still spit up chunks of mucous, but severity has gone from extreme/profound (during and just after treatment) to a minor annoyance.  I wouldnt call it mucositis anymore, but rather due to dry mouth and an overproduction of mucous, there's an ongoing sensitivity. Taste:  bummer, but it's not come back fully.  French fries ?  They taste like potato, just .. potato.  Some foods came back like 90%+, but many tastes are pale imitations of what they were before.   Dry mouth:  it's a lot better.  You can't swallow some foods at all, and risk having an embarassing lodgement in the middle of your throat, but carrying around some water, it's very manageable, and it doesnt really disrupt sleep.   New issues:  don't know why but I pee constantly.  Prostate is OK.  I wake every 2-3 hours at night needing to pee.  Coinciding with the chemo, my vision started to deteriorate and now I can't really manage fine print without glasses.  (May be old age, but pre-chemo my vision was 20/20 nil issues).   Can get occasional spasming neck pain due to inflammation / nerve damage.  Chemo-brain is a thing!  I feel as though my thinking-meat has reduced in effectiveness, although hey, lack of sleep can do that to you as well..   and ... Hypothyroidism.  Daily thyroxine when you get out of bed, and you're pretty much good to go, BUT (and this is the main reason for advice), if you spot it early - you can avoid the slowing metabolism and inevitable weight gain.  I've put on like 25 kilos over the last 2 years, despite having very little enjoyment from food 😕   So .. yeah, my advice, 6 months out of treatment, get a blood test and ask them to check everything ... including specifically the thyroid. ... View more

Sorry for your situation.   I personally think that it's all about time.  Time is our currency, how we spend it, what we do with it, is a direct reflection on who we are as human beings.   If you wrap it up in expectation, try and think of ways to enrich his last days, have a plan, have a schedule, obsess about doing the right thing, the best thing ---- it might even add stress to an already profoundly stressful situation.   But if you make the time, and are as present as possible, I'd be happy with that.  If he's unwell, sit by his bed.  Choose a book (Lord of the Rings) and read to him.  Play card games.     I'd also suggest that for a person facing end of life, it's really important to be respectful of what they want, and to not accidentally have any well-meaning social pressure.  If they give you a hint that they want to be left alone - as hard as it might be for you personally, give them the space they need ?   Sorry, cancer is a shit show, and working out what to do is tricky for all concerned.   My advice (being good, bad or indifferent), is to ask him, gently and with love: "Hey, we were looking at taking some time off work, we'd like to be around you, even if it's just to give support to <Wife/Kids/Whatever>.  Selfishly, we want as much time as possible with you, but we also want to be respectful of your needs - this is so hard for everybody - can you just tell us what you need most, and we'll try and make it happen ?" ... View more

Hey There   In case it helps anybody, I'm still smiling.   I dealt with a grim disease, gut-wrenching treatment, horrible after-effects, the lingering uncertainty of recurrence ..   ... and yeah, somehow my smile is still intact.     I think that after dealing with cancer, facing death head-on, you kind of realise that some of the baggage and bullshit you've been carrying around is completely unnecessary.  And you walk lighter for it.   My disease was diagnosed in September 2016.   They said that without successful intervention I'd be dead in 6 months.   It's now August 2018.   I'm disease free.   I hope to live at least another ten years.  If I'm lucky I'll look back at this post in 30 years time and grin.  But regardless, the lesson is that life is finite.  I hope you can wrap some happiness and enjoyment into whatever you have left.  Don't think of it as dwindling sands falling through an hourglass, but wake up to the moment.  Shoot for happiness, yes, even with cancer - shoot for happiness.   Good luck! ... View more

Hey There   Cancer is pretty insidious.  It's a physical assault, but it also attacks you emotionally, psychologically and even socially.  But yeah, learning to live with uncertainty is one of the worst things about it (and strongest lessons - I mean, in life, we - none of us - have surety or certainty, but we should all live like we do).   Another joyous little treasure in the basket of fun that is cancer ... is that the treatment can be as bad as the disease.   They do these 3 month scans, but the inflammation and nerve damage gives a pretty high rate of false positives.   I personally did my 3 month scan and was devastated to get an "inconclusive" result.  I felt for sure, in my heart of hearts, that the treatment had not worked.   I was wrong.  Re-scanning later ... all clear.   BUT   Then you move on to different types of uncertainty - like the fear of recurrence.   You get the all clear, then live with a concern that it's coming back (each year after treatment the odds stack more and more in your favour, but it's going to be a rest-of-life concern).   So yeah .. learning to live with anxiety, uncertainty, and find ways to make the most of the time and capabilities left to you .. that's a big part of it. ... View more

If this is a bad suggestion, I apologise in advance - but even with a terminal prognosis, like the kidney cancer, I'd still wave my hand around at the hospital, deliberately and explicitly asking to be included in any clinical trial for which I was a viable candidate.     The science has been making very meaningful strides in that direction just in this past decade (and few years), and if nothing else, it may add years to your lifespan, and improve the quality of life as the end approaches.   I know a guy in his 60s with stage 4 disease throughout his body, a real shit scenario, pancreatic, lungs, liver, he was weeks/months from death, and he got on an immunology clinical trial (back when I was first diagnosed with my own cancer, 2 years ago), and he's still alive.   Still expected to shuffle off and meet the maker any old time, but the immunotherapy treatments he received apparently shrunk the major tumours by as much as 80%   Just offering it in case it's helpful to anybody, and with apologies in case it is not. ... View more

Follow your heart.   My youngest was 4, eldest 8, and the middle guy (autistic) 6 when I was diagnosed 2 years ago.  (given 6 months to live).   I also chose to shield them from the disease, and I don't regret that choice.  (I did have some words with the eldest boy, but softened the circumstance dramatically).   Unless it's a condition that may take you suddenly,  I think it's wise to bide your time, love them to bits, and if the treatment trajectory takes a downhill turn, then you can decide to sit them down and give them a careful talk.   Personally, as your cancer treatment progresses, YOU get better at dealing with it, and come to cleaner terms with it.  If you subject your children to the disease early in your treatment, you may impose on them some of your own fears, rage, grief, unprocessed emotion.  If you hold off, shield them a bit, you can always decide to do it later.  (if your prognosis allows for that).   I mean, it's our JOB to shield our children, isn't it ?   I'd also suggest making personal videos aimed for their next 20 birthdays, imagine in your mind who they are becoming, plus your hopes for them, and talk to that future person (via the camera).  10 years from now, after they've (hopefully) well adjusted to the loss, they might get a buzz still having that window into the past and the mother/father that loved them.   I don't think there's a right choice.  It's *YOUR* choice.   Best of luck with your condition and treatment         ... View more