Not As Bad...as I feared

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Not As Bad...as I feared

Just looked up my calendar a found i only have 4 radiations left!  

   The tumor in my neck is almost gone (sucker was a good 3" by the time treatment started six weeks ago).

   My mouth woke up sore- throat is almost white with what i suspect is Thresh (?).  Going to suck on some apple cider vinegar in a few to see if that helps kill it.  Yes i suspect it's going to burn the lining of the mouth and trachea but can't resist another experiment.

   Notch one for those NO TUBE fools.  In my books, it's been worth the frustration and pain.  I'm not sure I'll reccommend not getting a feed tube to a person going thru this, however:  unless you have a high pain threshold, are not afraid to scream and cry (or at least let your spouse see tears flowing down your face when you try to eat).       I'm starting my situps and pushups regime tomorrow.  Time to start pushing the envelope on this fatigue.

   

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Cancer Council Team

Re: Not As Bad...as I feared

Oh that is good news that your radiation is coming to an end @Azjoetrucker!!

 

How have you been feeling the past week or so? 

 

Cheers,

Kate

Cancer Council Online Community Manager

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Re: Not As Bad...as I feared

So Radiation is a week past as of today and Chemo is four days out.

   Perhaps I was a bit unrealistic thinking that it would all start getting better.

   Well...not quite.  The usual side effects-shredded throat, sore mouth, lack of appetite and overall fatigue (most infuriating of all!) Actually seem to have gotten worse (yes, probably a function of being impatient?).

   I honestly believe that the throat shredding had a lot to do with experimenting with harder foodstuff once I was "Free of Radio-Knifing".

   I lost two more pounds last week, for a total of 14 for the duration of the treatment.   Lost an awful lot of muscle and tone...but still, not as bad as I feared the experience would be.

    My nasal passages still bleed and the nose gets rather scabby, and the Urbitox Rash still decorates my face and neck...but thanfully there's no itching or severe scaling.

   I am hoping to see improvenent once the Chemo is out of my system in another week or so.  Mostly, I am hoping enough energy returns to I can once again travel the highways doing what I love most-Truck driving.

    Hang in there-this too shall pass!

   

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Re: Not As Bad...as I feared

It occurs to me that I've never disclosed my age.  Give you a couple of hints from my teenage music...

"In Burmingham they loved the Governor...(boo boo, Boo goes the choir...) 

And (ok this is a bit unfair) the quote is me, not the lyrics)

"For us Head and Neck Cancer enthusiasts who saw the 70s as Teenagers, we call that nasty Saliva problem "Soul Mukossa".

   I'm 62 and Captain you might be right I may have overextended my stay...but I've always believed I'd be late for my own funeral.

   This trip has been rough and is not over yet...but I'm already glad to be able to support others.

 

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Re: Not As Bad...as I feared

Hi Folks...
Day 6 after last Chemo the throat is definately improved that I can handle both warm coffee (to dunk my cream cheese and bagel) and cold drinks (as in my 310+ calories shakes).

   The "cone" of pain seems narrower and located higher towards the nasal passages rather than the esophagus.
Just plum easier to swallow, but I don't think I'm ready to get too creative with hard food again.
I still lost another pound this week since my appetite and gag reflex decided to team up against me, but I think that my ability to hydrate effectively will get me back on track.
Although I feel weak and fatigued...I no longer feel "unwell". I truly believe today is a turning point.
Honestly, this week, the last Chemo Week, feels its been rougher than all previous ones. Could well be the cumulative effect of weeks of treatments.

  Looks like a light at the end of the Tunnel.  Hang in there and work through the pain. 

   This will pass.

   

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Re: Not As Bad...as I feared

You've gone through it like a champion.

 

For me, almost 3 years out, still have a small laundry list of issues that cancer opened the door for - but all-in-all life is grand.

 

Since you're so aggressive in your recovery, I just wanted to urge you to do one thing:  get your thyroid checked.

 

Head and neck cancers can destroy healthy, functioning organs - and the thyroid is a good candidate for radiation induced damage / impairment.

 

(EDIT:  should say head and neck cancer TREATMENTS can destroy healthy, functioning organs)

 

As you resume eating, and also start experimenting with foods to see what tastes good/bad/different, you might take in more calories and fats unregulated - and if your thyroid is damaged it will creep up on you slowly .. and it's kind of like a snowball gathering mass (or a human trunk gathering flab), once it's started it's harder and harder to reverse.

 

Medicine will help of course, but forewarned is fore-armed as they say.

 

I'd just urge you to get it tested and make sure you're "all good" in that regard.  (And if not, they'll prescribe a medicine that will take care of it - basically a synthetic thyroid replacer).

 

Cheers, big ears.

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Re: Not As Bad...as I feared

Thank you, Captain.

   Truly this is one medical trial I simply cannot blissfully ignore as I was likely to do most of my life (my life Nickname is "Commander Oblivious".  I will be seeing my Oncologist Head Quack today and will discuss as per your advice.

   Certainly the way my throat still feels like chopped meat almost 2 weeks after last Rad makes me leery about collateral damage.  By the way, would you remember how long it took for your throat to feel humanly pain free?

    Regards,

        Joe

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Re: Not As Bad...as I feared

Buddy that's one thing I can't really say - I've always had a massive tolerance for pain.  Once my oncologist examined me and asked "is the pain medicine giving you at least some respite ?"

 

Me, "No worries, yeah, managing pain fine"

 

Him, "how frequently are you taking the (CANT REMEMBER - morphine based med), and would you like me to put you on a higher dose ?"

 

Me, "Oh, no I haven't started that yet ... just been taking panadol every 4 hours, that pulls it right back"

 

Him, (shocked), "what ?!  I don't understand.  Based on my examination, I really don't understand why you aren't screaming in pain right now"

 

Really, nor did I understand his remarks - felt fine.  So maybe I've got some kind of serial-murderer-sociopathic resistance to pain or something.

 

For me the shitty side effects .. well, really boils down to the dry mouth combined with the mucositis.  I had rancid-taste dysgeusia as well (where anything you put in your mouth, even water, tastes like maggotty road-kill possum).  Basically meant I was constantly coughing up foul tasting phlegm and needing to vomit all the time.

 

And that went on for quite a few months after my final treatment, to be honest even 6 months later I was still struggling.  Now it's 2.5 years, and I do still daily need to cough up stuff that you should never find in any human body.

 

But yeah, pain, mate - couldn't tell you.  Had burns and damage - and my 3month post treatment PET scan was inconclusive because it showed massive inflammation at the site, so if anything I'll go with that and say that there was still unhealed physical damage at 3 months out... ?

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Re: Not As Bad...as I feared

Well, I guess this Cancer thing is for keeps.  Better develop another game plan for my recovery schedule.

   I guess having managed with just 2-500mg acetaminophen a day would mean I really have had it easy pain wise.  Sure, I've always had a pretty decent pain tolerance threshold...but I think I've had it easy.

   It seems to me the pain in the throat is actually getting worse-and I've backed up from all hard foods.  No serious "Mukossa" issues or Road Kill Syndrome...but you're making it sound like zi should be adding "Yet!" To that.

   Grrr.

Thanks for the tip, Captain.  Maybe I better forget the Road and start thinking about starting that Plant Nursery business that'll fit just perfect in my backyard.

   Regards,

   Commader Oblvious

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Re: Not As Bad...as I feared

Well folks, two weeks and two days after last Chemo.

   That first week the Radio burns made a mean statement about my still having to avoid the Arizona Summer Sun.  Neck still smarting and very slow in healing.  As a footnote, the Urbitux face rash has been trying to make a comeback but nowhere near the pustulent mess it was.  

  I'm guilty of stopping the antibiotics the minute they ran out three days before the last Chemo.

   The throat pain actually seem to get worse that eighth week, but just having finished the 9th week (2 weeks after last chemo) its becoming a nuisance rather than a pain in the...uh, throat.

    Appetite-it is still an inconvenience to eat since I still can't taste much.  It is nice to be able to swallow without having to fight tears.

   Libido is also making a comeback.

The only bad news I have, and I trully hope is my imagination, the Old Mass seems to be regrowing.  I'll be visiting the doctor on the 17th and will request a scan.  Hopefully its just swelling and tissue settling around.

   I'll keep y'all posted....

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