Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Hey Sheryn, 

 

so sorry to hear of your fathers reoccurrence of cancer. That’s not what you want to hear after going through all that treatment. My husband had the same cancer last year, finishing his treatment 1st November 2019. So far, so good for him. He has extreme fatigue, depression and anxiety and although initially going back to work in February, he lasted a month and has been off work since. He is due to go back Monday 1st June part time.
He is eating a lot better  But has not regained any of the weight he lost. About 18kg. 

I have no answers for you but know how you must be feeling. It is in the back of my mind every day.....what if?
This forum really helped me when he was going through his treatment. He won’t join it himself but I wish he would. I think it would help him but I pass on some of what I read and he’s happy to listen. 
Take care of yourself. I hope you find the answers you need. 

Julie

 

 

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Ahh mate, what a shit show.  I can't offer any practical advice, just some shared experiences.

 

I'm about 3.5 years out of treatment for head and neck cancer, Cisplatin and radiation to both sides of the neck.  In the past year and a half I've developed new symptoms that I find disturbing but the doctors kinda trivialise.  They say it's pretty much nothing, and to be expected.

 

The symptoms are pain and spasm related, and I worry a lot that it's triggered by some new anatomy (eg thyroid tumour - because my thyroid was massively screwed up by the rads).   But I have to put faith in the medical team - their expertise and experience.  

 

I've also experienced choking - but mine is mucus related.  I got really bad mucositis during treatment, and I'm constantly coughing up chunks of phlegm, it's pretty much a daily exercise even now.  

 

One night I had some acid indigestion, and I think a bit of an acid burp partially dissolved a chunk of mucus, which then slipped down and blocked my airway like a kind of malign gluey oyster.  I woke up wheezing, only able to get about 10-20% of my normal amount of air down the pathway.

 

I gasp, wheeze, stumble, scare the family, and eventually the heavy aspiration  clears the plug, it just kinda pops all at once (being carried down into my stomach I guess)

 

Since then - some anxiety sleeping, especially on my back (which is how it happened - and incidentally my most comfortable position).  Often I go sleep alone on the couch because the head-rest elevates my noggin.  But yeah, anxiety when lying in certain positions, anxiety about dying in my sleep.

 

Because I have these problems, and because they feel really impactful on my day to day life, it's easy to let anxiety about cancer recurrence start to nibble around the edges (or come from the periphery outright into the centre of your mind).  I don't want to die.  I have three young kids, if for no other reason I want to be there to look after them.

 

And I have to trust my doctors.

 

For me, cancer is as much a mental battle as a physical one.  Yes, the treatment is paramount to saving your life, and there are no guarantees.  BUT .. given that there are so few things within your control, one thing that you can try and take the reins on is your mental health.

 

I did a pretty good job, I was super strong throughout the treatment and subsequent recovery.  Some nights nowadays, I feel the anxiety come nibbling, like a rat looking for weakness in the pantry wall … but I have to fight it.

 

I think distraction is a useful tool - take the thing you find most fun or rewarding in your life and dive into it.  For me, as nerdy and pervy as it sounds in equal measure, that's rumpy-pumpy with the wife and burying myself in computer games.

 

If I find myself tossing and turning at 2 in the morning and I could let my mind run over and over the cancer stuff - I switch the brain off, fire up the computer, go into VR, and explore other galaxies (great game called "No Man's Sky"), or kill some zombies, or build some cities and try not to go bankrupt managing them .. or any other type of games - you get the drift.

 

I'm a little embarrassed by it .. but I've loved computer games my whole life .. if I ever needed an excuse to dive headfirst into them, I have one now.

 

I reckon with the anxiety you're experiencing, many would say "professional help"

 

Who knows, maybe that could help, maybe they could give you strategies you haven't already considered.

 

(Me, I say fuck that)

 

It sounds like you're a little bewildered about the magnitude and origin of the anxiety - perhaps because you've kept a solid lid on things up until now.  My advice would be simple:  find that lid and screw it back down.

 

Some folk might say that's avoidance, I say bullshit - it's compartmentalisation.

 

You can analyse your anxiety, you can think about death, cancer, any and all topics spiritual and terrestrial ---- but do it when you have a healthy mindset.

 

Me personally, I think for some of this stuff the best tactic is to wait it out.  Kinda trick it into submission or abatement.  Don't try to figure it out while you're suffering, unless you're in dire need and have thoughts of self harm and other heavy stuff .,. if it's inconsolable and unmanageable, reach out for help right away, concrete, professional help, I guess.  (As well as support from anywhere else it's available)

 

But .. if it's sleeplessness, anxiety and other stuff muddling around in your mind - my advice is to compartmentalise, try and push that shit out the window for the immediate short term, get a bit of sleep, try and strengthen yourself over a few days, and look at it in the bright light of day when (hopefully) you're feeling a bit better having dealt with a few immediate short-terms (sleepnessness is bloody awful, it's a terrible side effect of anxiety - I reckon a lot of death certificates that read "suicide" could just as easily read "insomnia")

 

Everyone's wired differently, I guess my comments and advice are as if you are ME, and you're not.  If any of it reads as really craptacular, shout it down.  But yeah, I'd posit that maybe your worry isn't actually cancer, but worry itself.  Sure you may have a physical problem, but in tandem with that, the anxiety is a slippery slope.  If you can do ANYTHING to get in front of it, I'd just urge you to try, mate.

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Hi Mate

 

Thanks for your reply as i really enjoyed reading what you said. You come across as a very intelligent man and i must hand it to you for being so strong for your children. You certainly are a family man. 

 

Myself my daughter lives in Ireland as she works as a lawyer in Dublin and my son lives in Philippines as he goes to Private school there living with family while myself and my wife came back to Australia so i can continue with treatment. We were suppose to fly back to Philippines but with Corona Virus we have had to stay in our house in OZ while this virus dies down and we can then fly back to Philippines for a few weeks so i can be with our son again then back here again with doctors and possibly more treatment. 

 

Your quite similar in a way regarding video games as if i start feeling a Anxiety attack coming on i also get my xbox out and start playing the Formula1 as that tends to work for me or i get stuck into the accounting bookwork of our business back in Philippines as we have a small resort and a few pubs over there. Being away from the business and my son is hard but i manage to use skype and chat.

 

My cancer however is terminal and yes sometimes the anxiety rat trys to sneak its ugly head in and sometimes its hard but i have started meditation now and that works well.

 

Having sinus cancer is a real pain however as you feel every little bit and when the tumour is blocking up your breathing it gets very scary but hey you just have to keep fighting it and keep praying that one day this shall pass.

 

You keep fighting mate and thanks for your message as it meant a lot.

 

Best Regards

Trevor

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Hey, I'm sorry that your cancer is terminal - I just wanted to say a few things about that:

 

1) I was given six months to live (more than 3 years ago).   Although I had a chance at curative treatment, knowing that your expiry date is looming is a horrible thing to deal with.  I recognise that.

 

2)  BUT … you're still alive.  Still viable.  We all have to die.  Unless you're Dracula or a comic book superhero, we all die and there's no coming back (that I know of).   But you're not dead yet.  A few houses down from you there's probably a child living a happy, delighted life, untainted by the fear of death .. and yet they are doomed to die tomorrow.  It's tragic, a kick in the guts thing - but it's just how the system works.  It's inescapable and often unfair.

 

3) Therefore - the real kick in the guts regarding death, impending or unknown, is .. like many things .. the FEAR of it.  I think for the most part people innately fear change - and there isn't much bigger change that dying.  The problem with fear is it contaminates all the GOOD stuff.  The way modern society is reacting to coronavirus is a good example of that .. I think events are largely coloured by our modern obsession with self & drama, and a heavy dose of fear.  I think the paramount thing is to not allow the fear that comes hand-in-hand with cancer and death to rob you of all of the remaining smiles and delight that is available to you.

4) Even though your cancer may be terminal, I think the opposite of fear is hope - and I personally would try to find & hang onto some of that until the last possible moment.  Science, treatment methodologies - it's all in a state of flux.  I've mentioned before a relation who did wind up dying of cancer, but he was in palliative care and had weeks to live.  They randomly offered him a new immunotherapy trial and it extended his life by about 5 years.  Five weeks to five years is pretty good, I reckon.  Anyway, as long as we are still alive, we don't know precisely when we will die.  Even as pain and fear weave themselves into our lives, we still have tools to try and fight back.  Even if we don't completely succeed, even the small wins reward us with some kind of quality of life result.   So yeah, mindset is (just in my opinion) important, you can flag your facebook status as "I'm going to die soon", or you could do it as "I'm not dead yet".  I think the latter is much better.

5) Mate, when you do pass, I'd ask you to consider setting your frame of mind as this:  it's the only true human adventure.  The only true and absolute unknown.  We don't know what's going to happen, and we all get to find out.  No reason to hasten it, that's stupid.  But when it happens, that's the back-handed gift of it .. no matter what faith a person has, nobody truly knows the deal.  Anybody who says they do is lying (to themselves at least).  As equally possible as heaven, hell or nothing, is that you gasp and wake up coming out of the Matrix, surrounded by machines.  I know it's probably shit advice, but if there's any way to transform the posture from anxiety to adventure, it might help with squeezing all available fun, joy and love from the rest of your life.  The anxiety shit tries to steal all that stuff.  It tries to corrupt the life & possible happiness that remains available to you.

6) Now this is just a personal quirk, but if you haven't already, it's worth thinking of any little leave behinds you could do.  For me, I'd want to do funny stuff - record little messages for people I care about that might initially help with their grief, and later make them smile in memory.  A terminal prognosis is a really shit show, no doubt - but it also means that we can prepare ourselves and the people around us a bit .. I'd probably even have a crack at curating my own funeral.  Sing an awful karaoke version of some wildly inappropriate song for them to play while people walk in.  Dunno.  I just think it can be as bad or even worse for the people in our lives, so it's nice to wind them into the equation as much as possible.  It's also a great distraction.

But yeah, you're not done yet.  We're connecting here, right ?  You're a viable, important passenger on Spaceship Earth.  Good luck with everything - take my remarks with a grain of salt if any of it is annoying or distressing - but if there's anything in there that is of benefit, take it and run with it, with my blessing.

All the best, amigo.

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