Author Topic: Cancer, Living With  (Read 12254 times)

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Offline Calinthalus

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Re: Cancer, Living With
« Reply #195 on: October 24, 2019, 10:21:22 AM »
Yeah, I think there's a lot we don't know that seems unconnected on the surface.


I've never tested as having a high cholesterol.  Ever.  I've had hypertension for a long while.  My final week of chemo a few years back, I had a major heart attack.  My LAD was 100% blocked.  They put in a stent.  Said, it must be high cholesterol and put me on cholesterol meds.  I've never had a high cholesterol blood test.  As many damn blood tests as I've had managing my hypertension, and then going through cancer and chemo, you would think a cholesterol test would have been done, and would have shown up as high.  No.  Always normal.  But every doctor says that for sure my heart attack was caused by high cholesterol because that's what causes heart attacks.


I know, Post Hoc Ergo Propter Hoc...just because my attack was during my last week of chemo does not mean the one caused the other.  Still, I can't help but feel they are related somehow.
"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 #196 on: October 24, 2019, 04:20:32 PM »
I hear you. There is no reason to think that I had any colitis before, several reasons to think it could be caused by events in my day, and doctors saying "but that doesn't make sense because [subject matter expertise]." I mean, okay? But every doctor is saying that about their part of my puzzle. Frustrating. It feels like they are all stuck on "scientists have proven bees can't fly" instead of "we can not yet explain how it works, but look, here we observe it."
« Last Edit: October 24, 2019, 04:22:44 PM by brilligtove »
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Offline Noisy Rhysling

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Re: Cancer, Living With
« Reply #197 on: October 24, 2019, 06:07:27 PM »
Brillig, House spent 55 minutes of every show nearly killing his patients. Get somebody who isn't an addict.
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Offline The Latinist

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Re: Cancer, Living With
« Reply #198 on: October 24, 2019, 08:40:24 PM »
Ah, so is the pain from injuries secondary to your cough?  I have had an intercostal muscle tear from coughing before, and it was quite painful. Interestingly, I developed a huge bruise that migrated to my belt line, as though the blood were pooling above a tourniquet (as, indeed, it was).  My doctor and I ultimately used hydrocodone to control that cough, so I understand the primary use of opiates for cough suppression.

As for your pain scale, I'm not sure I can get on board with it, particularly due to 9 and 10.  They are colorful descriptions of an experience I am sure you have had, and I acknowledge them; but I doubt that they are generalizable.  I will consider further how I might describe my experience of pain.

For 9 and 10 I was aiming to simplify the same numbers on the other scale. I think "becoming the symptom" is a touch poetic but also exactly what I meant to say. (Doesn't mean it's right!) The Scale assumes one person with one symptom with one intensity as a foundation.

Behaviourally, a 9 is saying the symptom has reached an intensity where it has overwhelmed you completely, but you're just shy of uttter helplessness. An example might be a person undergoing a catastrophic mental breakdown to the extent that they can not be assessed as a person with reportable internal experiences, but only as a set of behaviors, perhaps within some diagnostic grouping.

As I said, I do not doubt that it expresses well your own experience, but it highlights a difficulty in developing such a scale that will work for everyone. While you use colorful language such as that to describe your experience of pain, I never would. And what is more, if I were presented with such language by a healthcare professional attempting to evaluate my pain I would lose all confidence in their ability and might in fact be offended by it.
I would like to propose...that...it is undesirable to believe in a proposition when there is no ground whatever for supposing it true. — Bertrand Russell

Offline brilligtove

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Re: Cancer, Living With
« Reply #199 on: October 25, 2019, 07:41:27 AM »
TL I get the impression that you think my experience is extremely unusual. Is that accurate?
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Offline The Latinist

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Re: Cancer, Living With
« Reply #200 on: October 27, 2019, 09:34:06 AM »
TL I get the impression that you think my experience is extremely unusual. Is that accurate?

Not unusual at all, but personal. I am at pains not to dismiss your description of your pain because I know that the experience of pain is inherently subjective and I cannot assume that you experience it the same way that I do. I also know that our use of language influences how we think and feel about our experiences, so I accept that, for you, “I am the symptom” is a phrase with meaning that expresses how you have personally felt.  I am merely pointing out that the same would not be true of everyone who experienced similar pain.

For one thing, it relies upon a metaphor, which is a figure of speech to which people have varying reactions. I have worked with many very bright students who, for neurological reasons, would find the phrase difficult even to comprehend, or who would consider it an absurd logical impossibility or even inherently dishonest. I myself, although I do not have such difficulty understanding figurative language, would be uncomfortable with its usage in a clinical setting. Again, I am at pains to say that this does not mean it’s not a valid scale for you (and for all I know even the vast majority of people); but it would not be for everyone.
« Last Edit: October 27, 2019, 09:38:13 AM by The Latinist »
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Offline brilligtove

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Re: Cancer, Living With
« Reply #201 on: October 28, 2019, 12:16:01 AM »
TL I get the impression that you think my experience is extremely unusual. Is that accurate?

Not unusual at all, but personal. I am at pains not to dismiss your description of your pain because I know that the experience of pain is inherently subjective and I cannot assume that you experience it the same way that I do. I also know that our use of language influences how we think and feel about our experiences, so I accept that, for you, “I am the symptom” is a phrase with meaning that expresses how you have personally felt.  I am merely pointing out that the same would not be true of everyone who experienced similar pain.

For one thing, it relies upon a metaphor, which is a figure of speech to which people have varying reactions. I have worked with many very bright students who, for neurological reasons, would find the phrase difficult even to comprehend, or who would consider it an absurd logical impossibility or even inherently dishonest. I myself, although I do not have such difficulty understanding figurative language, would be uncomfortable with its usage in a clinical setting. Again, I am at pains to say that this does not mean it’s not a valid scale for you (and for all I know even the vast majority of people); but it would not be for everyone.
At no point did I think you were questioning my experience. I just wasn't clear on what you were trying to tell me, and so sought clarification. Much appreciated.

I think my symptom scale suffers from being a mix of potentially observable behavioural impacts and internal subjective descriptions of how a symptom affects the person. I think I'll try to tease the levels apart into what can be observed by someone else, and what the patient might report about the impacts of the symptom. Pain is one symptom that the scale should apply to, but I have been considering nausea, seizures, and emotional turmoil as touchstones for any descriptions.

From an external point of view, the lower levels (1-4) may not be visible to an observer at all. The patient has the capacity to manage their behaviour in the face of the symptom, so it may not show. At the middle levels of intensity (5-7) the symptom would be increasingly visible to an external observer, in part because the patient has to use so much of their focus and effort to manage the symptom. At the highest levels (8-10) the patient may not even be able to report what they are experiencing with any accuracy because their capacity to cope is overwhelmed.

From an internal point of view, levels 1-4 start to affect your mood, as more effort is needed to compensate for the symptom. Personally, I am unlikely to do anything specific to address a symptom until it reaches a 3. I'll almost always be motivated enough to do something by level 4. At levels 5-7 you're in significant distress, and likely have people asking if you're OK or what's wrong. At 8-10 the symptom is overwhelming enough that you can't really deal with anything except the symptom.

In any case, I do appreciate your insight. Thank you for clarifying to help me understand what you were getting at. That was helpful.
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Offline Friendly Angel

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Re: Cancer, Living With
« Reply #202 on: November 09, 2019, 01:27:20 AM »
My neighbor has an inoperable abdominal tumor... he's probably terminal, he's depressed.

Quote from: Friendly Angel
Neighbor got the prognosis yesterday, he has a year at most.  Old friends and colleagues are coming by his house to commiserate - it's literally morbid.  His wife will be a widow at age 62.

Neighbor is down to a couple weeks.  He has home hospice coming every day.  Wife and I are going to go see him tomorrow.  We've been warned that his appearance is disturbing. 
I don't know him very well, we're friendly neighbors, not friends.  Don't have much in common but his daughter and my wife are close friends.

I have no idea what I'm going to say.  I hope I don't just step on my tongue.
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Offline brilligtove

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Re: Cancer, Living With
« Reply #203 on: November 09, 2019, 01:21:26 PM »
My neighbor has an inoperable abdominal tumor... he's probably terminal, he's depressed.

Quote from: Friendly Angel
Neighbor got the prognosis yesterday, he has a year at most.  Old friends and colleagues are coming by his house to commiserate - it's literally morbid.  His wife will be a widow at age 62.

Neighbor is down to a couple weeks.  He has home hospice coming every day.  Wife and I are going to go see him tomorrow.  We've been warned that his appearance is disturbing. 
I don't know him very well, we're friendly neighbors, not friends.  Don't have much in common but his daughter and my wife are close friends.

I have no idea what I'm going to say.  I hope I don't just step on my tongue.

Some unsolicited advice:

You'll likely have to let him lead, but I'd go in with just visiting my neighbour as my baseline attitude. He may want to be 'normal' for a little bit with someone friendly but not burdened with too much closeness. He may want to reminisce, or be angry, or sad, or worry about the people he's leaving behind. At least you won't be tempted to pull the shitty 'better place' bullshit that hurts so much.

If you can, don't go in dreading how he looks, or how you'll react to his appearance. He likely doesn't want to watch you avoiding looking at him or such. There's no good or right thing to say here, so don't try to make one up. Showing your sadness is honest and in my experience, supportive. It's hard to find people who can look at death straight on and then have a conversation about lawns.

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