Author Topic: Cancer, Living With  (Read 10136 times)

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Offline brilligtove

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Re: Cancer, Living With
« Reply #30 on: February 17, 2016, 06:21:39 AM »
Thanks, SnarlPatrick. I hope you never have to deal with any of this again.
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Offline Friendly Angel

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Re: Cancer, Living With
« Reply #31 on: February 17, 2016, 12:00:47 PM »
How do you decide and evaluate how much of your experience to talk about with other people?  I see people with cancer who are very open and maybe talk too much about it, and people who I didn't even know had cancer because they just kept quiet about it, and everybody in between.

Obviously you've got to tailor your discussion to your audience - but I also don't know how to tell folks how much to tell me - frequently these are acquaintances and colleagues and not close friends. 

1.  A relatively close colleague had esophogus cancer and I didn't know until well into the process.  I knew he'd been having some health problems but didn't know what and I didn't ask.  Then when he told me, he said that his oncologist thought he was terminal.  Then he died about a month later even though he had been at work a couple days earlier.

2.  A not so close colleague started showing up to work with a head scarf and it was obvious to everyone that she had some kind of cancer and she was dealing with it in her own way.  After a year she sent out an announcement that she had breast cancer and it was tough but now she's essentially 100% back to normal.


I guess my question is kind of about talking about medical issues in general - with cancer being an extreme issue.  Tell me more, but I don't want to pry, and I'm not really sure how much I really want to hear.
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Offline Drunken Idaho

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Re: Cancer, Living With
« Reply #32 on: February 17, 2016, 12:09:03 PM »
I guess my question is kind of about talking about medical issues in general - with cancer being an extreme issue.  Tell me more, but I don't want to pry, and I'm not really sure how much I really want to hear.

Yeah, that's a pretty complex issue... wanting to go on as per normal vs. wanting people to understand the difficulties vs. knowing that some people (but you're not sure who) are wanting and able to share the burden. I imagine this is a very tough thing.

Brilligtove, glad you're sharing here, both on account of us wanting to be "in the know" and in some hope that you receive some relief. Are you able to share this much with people in person, or is it a little easier in this setting?
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Offline lonely moa

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Re: Cancer, Living With
« Reply #33 on: February 18, 2016, 12:58:50 AM »
Cancer survivors often sort of click with each other. 

I've only been with a crowd of people with cancer (about two dozen at sort of a 10 day cancer retreat) and it was pretty cool.  We had excellent moderators and lecturers and lots to do.  I think some of the participants didn't see out the year, but I think everyone got a lot out of it.

BTW, I'm not in pain.  A bit of constant discomfort  but, I'm not really limited by the treatment.  I/m pretty sure I'll be on the Queen's payroll next year... so cheers!
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Offline brilligtove

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Re: Cancer, Living With
« Reply #34 on: February 18, 2016, 10:03:27 AM »
(click to show/hide)

How do you decide and evaluate how much of your experience to talk about with other people?  I see people with cancer who are very open and maybe talk too much about it, and people who I didn't even know had cancer because they just kept quiet about it, and everybody in between.

My logic works like this:
  • Discussion personal problems is hard, often because they are considered private.
  • Writing is hard.
  • I am a writer.
  • I am a bit of a loner, but in no way a private person.
  • I am primarily motivated by the desire to make the world a better place.
  • Personal stories often help others accept and/or deal with their own situations.

Taken together, we have a situation where there are a vast number of people with cancer, many who want to know more, and very few who have both the desire or ability to discuss it. I happen to be at the intersection of these factors. Combined with my desire to make a positive difference, talking about my experiences seemed like the right thing to do. I really have very few secrets, and most of these are related to personal security, not personal privacy (bank account passwords and the like). Pretty much everything else is an open book as far as I'm concerned.

This means I talk about my experiences a vividly and viscerally as I can. In my writing I think of my audience as a person who has never had a serious illness or been close to someone with one. I try to find ways to help that person get a sense of the experience, sometimes at the expense of strict record keeping: I have to go poetic to explain what a stoma feels like, for example. If you don't have a blowhole there is very little common ground to draw on, so metaphors become necessary.

Obviously you've got to tailor your discussion to your audience - but I also don't know how to tell folks how much to tell me - frequently these are acquaintances and colleagues and not close friends. 

I've gotten better at tailoring over the last six months. If someone on the street asks if I have a sore throat, I may not shock the crap out of them with "No, two professional knife wielding megalomaniacs cut my throat," or "Cancer." I might say, "No pain - I had surgery," instead. In terms of actual subject matter, well, I talk to my wife before I post anything that involves her directly - like rediscovering my libido after chemo. In general, if I'm going to post about an interaction with someone I either anonymize them (Dr. RadOnc, Nurse Lungjabber, etc.) or I talk to them about what I'm going to say before I say it. My daughter's moms and I have talked about this quite a bit, and have found what seems to be a pretty good balance at this point.

I guess my question is kind of about talking about medical issues in general - with cancer being an extreme issue.  Tell me more, but I don't want to pry, and I'm not really sure how much I really want to hear.

I find most people are honestly curious and ashamed by their curiousity - as if their desire to understand what I'm going through diminishes me in some way. That emotional response may be normal for the questioner and the questioned - but I don't experience it. Within the limits set out above, if you're asking questions from a position of curiousity or concern, I'm going to answer as clearly as I can.

There are also people who seem to think suffering is a competition. I don't mean the simple, "I guess I can't complain about [bad thing] after hearing about your [worse thing]." That's just an expression people use when they have their shit put in perspective. That asshole at work really can make your day a terrible place to live; confronting an existential threat makes it easier to ignore or rise above that kind of shit. No, I'm talking about the person who tries to top my story because their suffering is of a higher quality or deeper meaning than mine. Those people get no mercy from me. Thankfully they are rare enough that I haven't had one who deserved the big guns yet: "Wow. I'm really glad you've had it so bad. You really seem to enjoy suffering. Good for you!" I have punctured a few by talking about how little I have actually suffered. Sure, this has been pretty awful at times. And yet I'm essentially healthy, likely to live a long and productive life, have a wonderful family, and the pain - while seriously unpleasant - was never unbearable. There are dark days, but no depression (so far), so overall I'm about as satisfied with life as I was before this started.

Most of them don't know how to deal with that.

Yeah, that's a pretty complex issue... wanting to go on as per normal vs. wanting people to understand the difficulties vs. knowing that some people (but you're not sure who) are wanting and able to share the burden. I imagine this is a very tough thing.

Brilligtove, glad you're sharing here, both on account of us wanting to be "in the know" and in some hope that you receive some relief. Are you able to share this much with people in person, or is it a little easier in this setting?

From last to first... Writing is significantly harder than talking under most circumstances, even with my reconstructed throat and kludged-together vocal apparatus - but that's just the mechanics of writing vs. talking. In terms of subject matter, I don't find any particular distinction. There are other topics that I reserve for in-person or voice-only: the state of my marriage, for example, is not something you're going to find in a blog post.

The act of expressing my experiences helps me pin them down and understand them; that can bring significant relief on those dark days, or help me find the humour in the gross, gooey, or teeth-grinding situations. The responses I get can be very uplifting too - especially when someone talks about doing something nice for someone, because it's nice, and they're someone. There are people on this forum who have made me cry by describing their simple acts of kindness.

Overall I don't worry much about "that was too much" from the people who read my writing. If I can I try to offer warnings about the material, and rarely post images that might turn the stomach of someone caught unawares. You can stop reading; you can't unsee a picture. Well, not without immediate percussive cranial therapy or application of electrical current to the brain, an who has an ECT kit or ACME Headmallet handy when they're browsing Facebook? I mean if you're on 4chan or Reddit, sure, you have the electrodes on, the belt in your mouth, and one hand on the button.* But that's not where my writing lives, so there you go.



* For advance browsing professionals, the button may be a foot operated dead-man's switch rather than a hand-held device. Think about it. One hand on the mouse, one hand on... other tasks, so unless you're name is Beeblebrox you're gonna be one hand short for the button.
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Offline Mr. Beagle

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Re: Cancer, Living With
« Reply #35 on: February 18, 2016, 10:41:18 AM »
I applaud your articulate, thoughtful, and open approach to your experiences, Brilligtove.

My spouse, who lost a lung to cancer and came very close to death from after-effects 22 years ago, has taken the opposite approach. She rarely talks about it, and I sometimes have to urge her to tell her story, especially when people are insensitive (such as, "I don't know why you need to go to Florida in the winter; it's not that cold here"). She covers so well (through intentional practice) for her reduced lung capacity that many people have no idea and others often forget.

I understand her reluctance to talk about it, and desire for privacy, but others in similar situations can benefit from her experiences.
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Offline brilligtove

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Re: Cancer, Living With
« Reply #36 on: February 18, 2016, 10:53:12 PM »
Thanks for the kudos. I know a lot of cancer survivors just want to put it behind them. I'm not sure it's even a conscious desire to distance oneself. It's more like all that crap was so huge that it's kind of mythic, and mythic adventures happen to other people, and I'm just dealing with life like everyone does.
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Offline brilligtove

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Re: Cancer, Living With
« Reply #37 on: February 25, 2016, 04:32:23 PM »
2016-02-25 Lymphedema and Vocalizations Update

I was at Sunnybrook today for a short education session about lymphedema. I learned a little bit, but mostly knew the materials covered. I did find out that the appointment I'm supposed to go to tomorrow is incorrect, however. The doctor will be calling me to let me know when she can fit me in. I do want to be rid of this frog neck.

On a happier note, I am beginning to be able to whistle a little bit. It's quite challenging, since I have to push air through my reconstructed throat without my throat vibrating. I get good vibrations even at very low airflow, so whistling is tricky.

Good enough for Walter, though. Even Jake paid some attention.



Oh - one more thing. When I was cleaning my stoma today I saw what appeared to be a crack or cut in my TEP, but when I leaned in to get a better look I couldn't find the mark. Then I shone a light (from my phone) down the hole and discovered that I had a blue stitch poking out of the flesh inside my trachea. After some thought I decided to see how firmly embedded it was. If it was just hanging on it would be falling into my lungs sometime soon; taking tweezers to it now seemed reasonable. I'm glad I did. It was just barely embedded. If there had been any resistance at all I would have stopped and made an appointment to see someone. It came out easily with the tweezers though.

Be well.
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Offline brilligtove

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Re: Cancer, Living With
« Reply #38 on: March 09, 2016, 10:26:26 AM »
Two of my favorite topics together in one study. Who could ask for more?

Nothing to sneeze at -- battling mucus to beat cancer
New OU discovery may help thwart pancreatic cancer

Quote
Oklahoma City (March 8, 2016) What do cancer cells and a runny nose have in common? The answer is mucus; and researchers at the Stephenson Cancer Center at the University of Oklahoma have shown it may hold the key to making cancer treatment better.

Most of us know about the thick, gooey stuff we blow from our noses when we have a cold. In that instance, mucus protects the normal tissue in the nose from drying out and helps the body recognize and fight off invaders like bacteria and viruses.

Mucus also has been shown to play a role in cancer's resistance to chemotherapy drugs, shielding cancer cells from the very drugs intended to kill them, thereby allowing the cancer cells to grow and multiply rapidly. Now, researchers at the Stephenson Cancer Center have identified a way to potentially break through that defense when it comes to pancreatic cancer.

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Offline brilligtove

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Re: Cancer, Living With
« Reply #39 on: March 20, 2016, 09:52:23 PM »
2016-03-20 I Am A Travelling Man

My sister is hanging out at the gate with her son, while I have retired to the bar to have a beer and some pizza and destress my distress at getting through security. We're on our way to Trinidad. We were all there a year ago for march break (with Livé). This year it's rather a different trip. Obviously, it would have been more fun if I could bring Livé this year, but she is in school now. Also, I didn't have a hole in my neck last year.

Different.

As an example, take my checklist. I have never had a checklist for travel before, so that's the first change. Then there's the fact that it's yoooge:

Basics
  •    Travel Letter
  •    French Catheters
  •    Information Sheets
  •    Lubricant
  •    Gloves
  •    Scissors
  •    Cotton Pads - Individual
  •    Cotton Pads - Package
  •    Swabs
  •    Tweezers
  •    Tylenol
  •    Bellows / Clear
  •    Pipecleaner
  •    27 @ HME (1.5/ day)
  •    27 @ baseplates (1.5/ day)
  •    27 @ Remove Wipes
  •    27 @ Skin Prep Wipes
  •    Synthroid (1/day +)
  •    Ranitidine (2/day +)
  •    HydroVal Medicated skin cream
  •    Mako Lubricating Jelly
  •    Polyderm
  •    Shirt
  •    Handkerchief


Elastics
  •    Neck Compression White
  •    Neck Compression Beige


Portable Tracheostomy Kit
  •    1 @ Carry On
  •    3 @ Luggage


4 Day Travel Kit
  •    4 @ Baseplate
  •    4@ HME
  •    4@ Remove Wipe
  •    4@ Skin Prep Wipe
  •    4@ 10mL saline
  •    1 @ Brush
  •    4 @ Synthroid
  •    8 @ Ranitidine


Then there's the clothes, wedge pillow (I have to sleep on an incline) and normal toiletries like a razor and toothbrush.

It turned out security was a breeze. I showed my letter to the agent, but she said it wouldn't be a problem carrying my saline. The agent at the scanner console sent my bag through with no issues.

Gate announcement happening - gotta go.
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Offline AQB24712

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Re: Cancer, Living With
« Reply #40 on: March 20, 2016, 09:54:44 PM »
Whew, that's quite a list.  Have a wonderful visit with your mama!
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Offline brilligtove

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Re: Cancer, Living With
« Reply #41 on: March 21, 2016, 07:43:58 AM »
At least most of the stuff on my list is fairly light. It's bulky, but not a huge burden.

Mom seems to be doing pretty well. The AFib is still there, but it looks like it's starting to get under control. I'm sitting in the gallery of the family home right now, sipping water and cruisin' the net. :)

2016-03-21 0745h Travel Update

Well, that was relatively painless.

I went through the security check ahead of Joy and Mateo, and had no questions or special searches, despite all the saline I have.  I was "randomly selected" to be screened for explosives - just like I am every time - but that wasn't a surprise.

Mateo was desperately excited about being on the plane, bouncing around and exploring everything. He kept asking, "Are we flying?" and took great delight in unbuckling and buckling his seatbelt. He REALLY wanted to kneel at the window to watch takeoff, but Joy was mostly able to keep his butt in his seat. He's tall enough to see out the window, barely.

We took off on time at 11PM . I dozed on and off until about 3. Mateo was stretched out between Joy and I for much of that time. It took a while for him to wake up enough to sit up for landing, but that was ok once he was aware.

On the hole-in-neck-flying front, it wasn't too bad. I had a high-moisture HME in, and was able to use my larybutton successfully all day. That's a big change: I couldn't use it effectively just a few months ago, but now I can speak pretty clearly. It isn't good for long conversations or really loud environments, but it was really convenient for traveling. My skin on my I neck really needed a break from baseplates too, so the timing was perfect. The itching is subsiding and the beginnings of a rash have already faded. I suspect part of my newfound success with the button is that I have a high-flow TEP now.

In any case, when I woke up at 3AM my biggest concern was that I'd forgotten to take out my contacts. This was followed by somewhat labored breathing through the somewhat clogged HME. I dealt with the contacts and irrigated my lungs - sometimes a squirt of cool saline feels VERY good - and then returned to my seat.

Immigration and customs were easy, especially since Joy was able to do most of the talking. Our cousin's husband, Steve, met us as we stepped out into the humid air.

I'm in the back seat of the truck, on the way to "grampa Sammy's house" in San Fernando. Mom is there right now, and we'll be staying in San'do for a few days before going to the beach. It is 0556h and the sun is about to crest the horizon.

Everything is green!

Oh - I forgot to take my thyroid medication before eating breakfast. It seems I need to set some alarms while travelling, since my normal routines are messed up. I'll take in a few hours, once my stomach is mostly empty again. It's going to be interesting to see how I deal with the heat.
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Offline brilligtove

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Re: Cancer, Living With
« Reply #42 on: March 24, 2016, 06:08:36 PM »


2016-03-24 Travelog - The Beach

On the one hand I got to sit in the ocean and got a great video of what happens when an unexpectedly large wave crashes into you.

On the other hand I ejected my only larybutton, which now lives in the depths of the Atlantic. (I have lots of other stoma covers and the salt air is pretty easy on the lungs regardless.)

So enjoy the video, I guess. It was shot and edited on my Nexus 6P, with music added on YouTube, so forgive the crude edits.
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Offline Calinthalus

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Re: Cancer, Living With
« Reply #43 on: March 24, 2016, 08:00:37 PM »
As a survivor of a much easier cancer to beat I want to send a great big "Fuck Cancer" your way.  I'm not a writer.  While I was in treatment I was sleeping 16+ hour days and was lucky to drink three cans of Ensure a day.  I honestly didn't have the drive to do much but sit in the chair with the spike in my chest while they pumped in the chemo and old people watched TVLand reruns next to me.  I couldn't even focus enough to read.  I have no idea how you're managing to write all this down.  I got my clear PET almost a year ago (shortly after my heart attack) and I'm just now feeling social enough to post here.


Keep living the life man.
"I think computer viruses should count as life. Maybe it says something about human nature, that the only form of life we have created so far is purely destructive. Talk about creating life in our own image."
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Offline brilligtove

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Re: Cancer, Living With
« Reply #44 on: March 24, 2016, 10:52:03 PM »
Calinthalus, thank you - and you do me too much credit. Somebody ends up at the far end of the bell curve on this shit, and I happened got luck out on almost all of it (at least, all of it after the holy shit your body is staging a rebellion and wants to kill you part).

My energy budget is now big enough that I almost feel like a Canadian (roughly 70¢ on the dollar) compared to where I was before all this shit started. Again, I have been lucky. No significant complications on the way was one thing; having unintentionally trained for dealing with cancer - and this specific cancer - is yet another level of irony layered on to my life. (Seriously, I think I'm ferromagnetic now. That much irony).

I hope your energy budget grows, and is not indexed to GDP. ;)
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't