Author Topic: Cancer, Living With  (Read 11454 times)

0 Members and 1 Guest are viewing this topic.

Offline Crash

  • Keeps Priorities Straight
  • ***
  • Posts: 406
  • Dogspeed John Glenn.
    • What I do for fun
Re: Cancer, Living With
« Reply #15 on: February 05, 2016, 01:24:04 PM »
No need to reply at all Brilligtove.  The living with 'cancer' heading was something I had a little experience with. It's kind of like being a member of a brotherhood of something.  I hope I didn't crash your thread.  Cancer is one of my most favorite topics now.  The pharmacology is astounding in the complexity.  I used to tell the smart kids to go for astrophysics but now I suggest microbiology, oncology and pharmacology. 
  Your day at the clinic came with the usual cliffhanger.   The wait for the scan results is the definition of anxiety. 
  I got my unofficial therapy dogs right here too.  Having them is always good for a little comedy relief. 

Offline brilligtove

  • Too Much Spare Time
  • ********
  • Posts: 7617
  • Ignorance can be cured. Stupidity, you deal with.
Re: Cancer, Living With
« Reply #16 on: February 05, 2016, 02:28:08 PM »
No need to reply at all Brilligtove.  The living with 'cancer' heading was something I had a little experience with. It's kind of like being a member of a brotherhood of something.  I hope I didn't crash your thread.  Cancer is one of my most favorite topics now.  The pharmacology is astounding in the complexity.  I used to tell the smart kids to go for astrophysics but now I suggest microbiology, oncology and pharmacology. 
  Your day at the clinic came with the usual cliffhanger.   The wait for the scan results is the definition of anxiety. 
  I got my unofficial therapy dogs right here too.  Having them is always good for a little comedy relief.

Aside from adding your screen name to the thread, no other crashing of the thread has occurred. :)

Yeah, the cliffhangers are always a pain. I'm reasonably good at not dwelling on them, but I would prefer results NOW NOW NOW.

The complexities of biology in general have always overwhelmed me (since grade school). I could handle gross anatomy and kinesthetics and genetics, maybe because those feel more like physics and programming than a lot of the rest of the field. I do find it fascinating that biology is still making huge new discoveries and uncovering entire domains to explore. A couple years ago no one was talking about the microbiome, for example. A few years before that mapping the genome was discussed like it was the end of all biology knowledge but wait oops what's this proteome thing shit this is complex. Now with CRISPR in the works I expect we'll be seeing some astoninshing new creatures very soon.
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't

Offline Friendly Angel

  • Stopped Going Outside
  • *******
  • Posts: 4510
  • Post count reset to zero in both forum apocalypses
Re: Cancer, Living With
« Reply #17 on: February 05, 2016, 03:01:21 PM »
Aside from adding your screen name to the thread, no other crashing of the thread has occurred. :)

I figure this is your blog thread and I haven't contributed out of respect... but I do think it's important to understand what cancer life is like and I'm getting some perspective from your updates - thanks.

Here's a question some questions - what does your "blowhole" feel like?  Do you gag or anything when you clean it out?  Is it ticklish?  Is what you're cleaning like snot?  - or just dirt from the air that you can't filter through your nose anymore?  What do you have to be careful about it with?  What if a bug flew/crawled in there?

And if you wanted to be a Jeopardy contestant... what accommodation would you need to be competitive?
« Last Edit: February 05, 2016, 03:07:06 PM by Friendly Angel »
Amend and resubmit.

Offline Mr. Beagle

  • Stopped Going Outside
  • *******
  • Posts: 4496
    • When God Plays DIce
Re: Cancer, Living With
« Reply #18 on: February 05, 2016, 03:30:07 PM »
Mrs. Beagle is now at 22 years on one lung after proving that young women who have never smoked can develop a malignant lung tumor. I am still pissed at the doctor who treated her for asthma for a couple years until it was too late to save the lung, but on the other hand, who would dig deep to look for lung cancer in a young, non-smoking woman. (That task fell to a rookie fill-in female doc who was really smart).

It is not easy, and I don't know what the alternative is, but in Mrs. Beagle and Brilligtove I see what I can only call "courage under fire," in taking on the "manxome foe."

Survival does have its fun moments. Even though she always details her history, new doctors and nurses routinely get flummoxed trying to find lung sounds from the missing lung and heart sounds from the heart, which has shifted well out of position. She once had an EKG technician near tears because she could not get her stick-on probes to register signals properly.


Mister Beagle
The real world is tri-color
now blogging at http://godplaysdice.com

Offline brilligtove

  • Too Much Spare Time
  • ********
  • Posts: 7617
  • Ignorance can be cured. Stupidity, you deal with.
Re: Cancer, Living With
« Reply #19 on: February 05, 2016, 03:37:53 PM »
Aside from adding your screen name to the thread, no other crashing of the thread has occurred. :)

I figure this is your blog thread and I haven't contributed out of respect... but I do think it's important to understand what cancer life is like and I'm getting some perspective from your updates - thanks.

This is a thread I started to talk about my experiences, and anyone is welcome to comment. I am like discussion!

what does your "blowhole" feel like?

To my fingers my stoma (blowhole) feels like a hard ring of skin, pulled tight against a tendon (or similar strong tissue). In terms of the experience of having a stoma, that's harder to describe. Normally I don't feel it at all, just like you don't feel your left nostril until you are specifically made aware of it like I just did. If you press your thumb down in the hollow between your collarbones that's really what it feels like for me when I occlude (block) it to talk. The top of the hole is numb (the nerves on the front of my neck were severed during the neck dissection) but the bottom can sort of have a mild ache at times. That ache is like if you pressed that spot a little too hard for a little too long. Not painful or tender - just a sort of ache-ish feeling.

My stoma is a boundary between skin and mucosa. The mucosa is very sensitive to any touch or disturbance. I have a small silicone implant (TEP) that sits inside a fistula between my esophagus and my trachea. This allows me to produce a voice when I exhale and block my blowhole (occulde my stoma). My TEP is quite high up in my stoma, which is good - makes it easy to maintain - but my stoma is also quite shallow. Some folks have a good 360° ring that looks like a cave; mine is more of a teardrop shape with the top mucosa just turning into skin, with no particular rim or ring. This makes it very easy for me to poke the mucosa, or to poke the TEP. In either case there will be coughing. Lots of coughing.

Do you gag or anything when you clean it out?

I don't gag when I clean it, but I do cough. (I gag when I brush my teeth, when I scrape my tongue, and when my mouth is too dry and my throat feels like it's sticking to itself.) Cleaning consists of a few different activities. Externally, I have to peel off the dried mucus that collects around the outside of the stoma. If I'm wearing a baseplate (sticker that surrounds the stoma and can hold an HME (Heat and Moister Exchange button that I press to speak)) the goo collects in a ring and dries out. It also sticks to my skin something fierce. There is a sweet spot of dryness where the goo is soft enough to roll onto my pipecleaner (yes, I use a special pipecleaner to clean my TEP and the blowhole) and then peel off in a big clump. If it's quite soft and wet I can just roll it on to the pipecleaner and rinse it off in the sink. If it's too dry I have to wet it with saline and let it soak. If it's too wet I can just blow real hard and have it fling out all over the mirror or (ideally) into the sink. If I'm not wearing a baseplate I can clean it with a damp facecloth or cotton pad as well.

Is it ticklish?

Not ticklish, as such. The nerves in my neck that were not cut are screwed up and miswired, so the area that is in the top right quadrant above my stoma registers like it's inside my trachea. Poking, pulling, or rubbing on that spot triggers severe coughing, just like getting food in your airway does. I'm very slowly getting better at minimizing that response, but I don't know if that area will ever feel like external tissue. Neuroplasticity, FTW!

Is what you're cleaning like snot? 

No - it IS snot. I have to irrigate my lungs frequently - that is, shoot in up to 10ml of saline, straight down the windpipe. I have to do this because my 'lung secretions' dry out quickly (no nose to do the humidification and heating when I inhale). When they dry, they are snot. When snot dries is it boogers. You don't want boogers inside your lungs. Also, people like me can get mucus plugs that block our airway completely. That's a death sentence, so keeping irrigated is rather important. (This is a 'careful about' bit, obvs.)

or just dirt from the air that you can't filter through your nose anymore? 

Snot collects dirt and such, and flushes it out of your airway. In a normal neck this is brought up into the mouth and swallowed into the stomach. I can't do that, so I have to blow my blowhole pretty frequently to hork out the goo.

It's quite a sight, let me tell you.

What do you have to be careful about it with?

Lots - but I'm now running late for a play date for my dogs, and have to go. I'll pick this up later.


Good questions!
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't

Offline brilligtove

  • Too Much Spare Time
  • ********
  • Posts: 7617
  • Ignorance can be cured. Stupidity, you deal with.
Re: Cancer, Living With
« Reply #20 on: February 05, 2016, 05:23:22 PM »
Mrs. Beagle is now at 22 years on one lung after proving that young women who have never smoked can develop a malignant lung tumor. I am still pissed at the doctor who treated her for asthma for a couple years until it was too late to save the lung, but on the other hand, who would dig deep to look for lung cancer in a young, non-smoking woman. (That task fell to a rookie fill-in female doc who was really smart).

It is not easy, and I don't know what the alternative is, but in Mrs. Beagle and Brilligtove I see what I can only call "courage under fire," in taking on the "manxome foe."

Survival does have its fun moments. Even though she always details her history, new doctors and nurses routinely get flummoxed trying to find lung sounds from the missing lung and heart sounds from the heart, which has shifted well out of position. She once had an EKG technician near tears because she could not get her stick-on probes to register signals properly.

You gotta laugh where you can, right?

I have to be particularly careful with any surgeries or procedures where I need O2 or other gasses administered. The teams automatically and inevitably put the mask over mouth and nose, where they do no good. Also, well meaning but uneducated medical personel have been known to pull out the TEP because "what's that I see there?" which has the effect of opening the fistula between my trachea and esophagus. Since reflux of stomach acid is very very common for laryees like me, this means dumping stomach acid directly into my lungs. So bad news, yes?
« Last Edit: February 06, 2016, 01:34:05 PM by brilligtove »
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't

Offline brilligtove

  • Too Much Spare Time
  • ********
  • Posts: 7617
  • Ignorance can be cured. Stupidity, you deal with.
Re: Cancer, Living With
« Reply #21 on: February 05, 2016, 05:30:06 PM »
And continuing on the 'what do you have to be careful with' answers...

  • Dry lungs.
  • Granuloma on the stoma and on the fistula, especially on the back of the fistula where I can't see it.
  • Coughing or sneezing with the HME still in the base plate. That just blows the baseplate right off, and can gum up the HME too.
  • Always travelling with saline, pipecleaner, cotton pads, French catheter (in case the TEP comes out or leaks), a mirror, a light, a clean shirt, extra handkerchiefs, emergency instructions for first responders, several base plates and HMEs, wipes (skin cleaner and glue-prep for the base plates), thermometer, several tins of club soda (dry mouth from radiation and reduced kidney function from chemo), and something to write on and with for when my TEP clogs and I can't speak.
  • Staying upright so gravity helps reduce my reflux - so no bending over when I have anything in my stomach.


...that's what comes to mind, at least.
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't

Offline lonely moa

  • A rather tough old bird.
  • Stopped Going Outside
  • *******
  • Posts: 5004
Re: Cancer, Living With
« Reply #22 on: February 05, 2016, 11:35:07 PM »
I'll never think of  xerostomia, loss of molars and one sternocleidomastoid as a hassle ever again. 

Thanks for your frank explanation.
"Pull the goalie", Malcolm Gladwell.

Offline brilligtove

  • Too Much Spare Time
  • ********
  • Posts: 7617
  • Ignorance can be cured. Stupidity, you deal with.
Re: Cancer, Living With
« Reply #23 on: February 06, 2016, 10:12:06 AM »
I'll never think of  xerostomia, loss of molars and one sternocleidomastoid as a hassle ever again. 

Thanks for your frank explanation.

Hey - suffering is not a competition. We play the cards we're dealt.
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't

Offline brilligtove

  • Too Much Spare Time
  • ********
  • Posts: 7617
  • Ignorance can be cured. Stupidity, you deal with.
Re: Cancer, Living With
« Reply #24 on: February 06, 2016, 01:25:46 PM »
Oh - another thing I have to watch out for - I can't expose my neck to direct sunlight. That's where I had my radiation, and apparantly my skin will no react well.
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't

Offline lonely moa

  • A rather tough old bird.
  • Stopped Going Outside
  • *******
  • Posts: 5004
Re: Cancer, Living With
« Reply #25 on: February 07, 2016, 12:23:16 AM »
Oh - another thing I have to watch out for - I can't expose my neck to direct sunlight. That's where I had my radiation, and apparantly my skin will no react well.

Did the radio kill your beard?  I was never able to grow much of a beard but now I have to shave about half as much on the affected side.  After a few days of not shaving it looks pretty stupid to me.  The sun effect seemed to go away after a while. 

Those third degree burns inside one's throat hurt.  TGFM.
"Pull the goalie", Malcolm Gladwell.

Offline brilligtove

  • Too Much Spare Time
  • ********
  • Posts: 7617
  • Ignorance can be cured. Stupidity, you deal with.
Re: Cancer, Living With
« Reply #26 on: February 07, 2016, 06:05:31 AM »
My mustache is the only hair growing normally. It looks awful. Neck is bald, starting at my chin line. Cheeks have sparse, slow growing strands. No more beards for this guy.

What is tgfm?
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't

Offline lonely moa

  • A rather tough old bird.
  • Stopped Going Outside
  • *******
  • Posts: 5004
Re: Cancer, Living With
« Reply #27 on: February 07, 2016, 12:15:33 PM »
Thank God for morphine.
"Pull the goalie", Malcolm Gladwell.

Offline brilligtove

  • Too Much Spare Time
  • ********
  • Posts: 7617
  • Ignorance can be cured. Stupidity, you deal with.
Re: Cancer, Living With
« Reply #28 on: February 16, 2016, 01:30:00 PM »
I think I wasn't clear that this thread is for anyone living with cancer - in yourself, your family, your friends. I was re-reading my posts (as prompted by some New Confessions) and realized that this intention and the words I actually used to express it did not match up terribly well.

In other news: 2016-02-16 Radiology Update

I just met up with my RadOnc Doctor. Nice guy. He said there’s no indications of any troubles in my CT scans from a couple weeks ago.

*whew*

I’ll be seeing my surgeon in three months, and Dr. RadOnc in six. I’ll have new CT scans when I see Dr. RadOnc, as I have nodules in my lungs (since before this all started). They haven’t changed in any way, but he wants to keep an eye on them. He’s also making an appointment for me with the lymphedema clinic here at Sunnybrook. I’d like to get rid of this frog-chin. They may just refer me to a private clinic, but we’ll steel.

Oh – and I’ll have an update for you this afternoon, as I’m seeing the dermatology clinic here at Sunnybrook. My dermatitis (eczema) has come back hard on my forehead, and I have a bunch of little itch patches on my neck. Dr. RadOnc doesn’t think the itchy patches are cancerous, but they’re worth checking out. My family GP, Dr. T. set that up for me, which was great.

Right. The drive here was awful, and I’m sure the drive home will be awful too. It normally takes 30 minutes; today it was 75. I was supposed to go to my daughter’s classroom for parental observation day before seeing Dr. RadOnc, but didn’t leave enough time to get there. I mean I left the house with 30 minutes to get to the school – normally a 15 minute drive. That took 35 minutes – and that’s before finding a place to park and getting into the class. I missed my window. :(

I’ll see if I can reschedule.

FBAEW.

Be well.

--BT
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't

Offline SnarlPatrick

  • Reef Tank Owner
  • *********
  • Posts: 8170
Re: Cancer, Living With
« Reply #29 on: February 17, 2016, 02:40:41 AM »
Hey guys. I've been ignoring this thread... and feeling a bit guilty about it, because frankly, this stuff scares the shit out of me. But Brill, its always worthwhile to read your comments.

In high school, my best friend's mother passed and it just destroyed him. And then my mother get one mastectomy, and then the other, then lymphedema. But the feelings were complicated by her being a malignant narcissist. Then my aunt went to Texas to die in secrecy in hospice, of Vaginal cancer, that if she'd gone to real doctors instead of quacks, they might have been able to save her. We found out 6 weeks after she died, her friends had kept it secret until she was cremated, since she didn't trust my mother to respect her wishes. Anyway...

You seem like a doctor's dream patient. Your strength of character is a big asset. Moa, I'm sorry you're in pain. I'm pulling for both you guys.
Quote from: materialist_girl
SnarlPatrick, you are a nazi apologist piece of shit. You're a coward who hides behind the internet   ....   and I can only imagine it's a good thing your Jewish ancestors are dead so they don't have to watch you grow into the bigoted nazi creep you've become.

 

personate-rain