The 'abused dog syndrome'

blueroses

Under another discussion topic I mentioned this theory of mine to someone who responded to one of my postings and I realized that perhaps others would like to comment on this syndrome, that I am pretty sure I made up but is widely recognized in principal I believe. You know how it goes, a dog is abused and then becomes very leary and stressed when anyone comes near it, afraid it will be hurt again?

Well I haven't slept very well the last 2 nights, going back and forth with the prospects of more invasive tests, I have now been told. Starting to feel like a whiner here, you would think I would be used to this stuff after 20 years of testing but it seems like the more they want to do to me the more of a wuss I become. I think of it as a syndrome as I said earlier, I call the 'abused dog syndrome', you beat a dog or mistreat it enough and soon it runs at the sight of you or at the very least stays away and hides or bites even a hand that only wishes to pat or feed it. With people who have had extensive invasive treatments, for me anywho, I feel a kinship with that dog at times, like yesterday when even a kind and gentle doctor suggested two many more invasive tests. Logically it's so stupid, I say to myself in my head (haven't started to talking to myself out loud YET), just do the derned tests one after the other and be done with it but something keeps me from accomplishing that rational reasoning, and for me it's my 'abused dog syndrome' thingy. I have just been poked and proded and nipped and stitched and fed meds that have been 'good for me' but have caused me endless pain and suffering at times, over and over, and now when someone suggests one more invasive procedure or a new med (with all it's fascinating side effects, sigh) I just want to BITE THEM. Then I crawl off to my 'doghouse' and hide, mulling over the suggested new procedures over and over til I feel nauseous, remembering the countless other procedures that I have had to endure that have gone before. Can't figure out how to get through this set of new tests this time, it seems to be worse now - just too many I guess. I suppose in time I will get through them but for now am wondering how many know what I am talking about or should I just call up the padded wagon, reminding them to bring a muzzle when they come? Anyone out there familiar with all of this? Thanks for listening.

zahalene

I think most of us
I think most of us 'old-timer' survivors at least suffer from this syndrome to some degree. I mean, I can hardly face having blood drawn any more.
I don't know what kind of tests you are faced with now but 'invasive' sounds like a lot more than a blood draw. I would DEMAND sedation. Tell 'em its the only way you will play the game. They'll say, 'oh, that's not recommended'. But we all know that it is done when necessary for all kinds of tests and if you feel it is necessary in your case then IT IS NECESSARY. I can't do an mri without sedation because of claustrophobia. It just doesn't make sense to put ourselves through unnecessary pain and suffering. I mean we gotta draw the line somewhere, right?

blueroses

zahalene said:

I think most of us
I think most of us 'old-timer' survivors at least suffer from this syndrome to some degree. I mean, I can hardly face having blood drawn any more.
I don't know what kind of tests you are faced with now but 'invasive' sounds like a lot more than a blood draw. I would DEMAND sedation. Tell 'em its the only way you will play the game. They'll say, 'oh, that's not recommended'. But we all know that it is done when necessary for all kinds of tests and if you feel it is necessary in your case then IT IS NECESSARY. I can't do an mri without sedation because of claustrophobia. It just doesn't make sense to put ourselves through unnecessary pain and suffering. I mean we gotta draw the line somewhere, right?

Exactly
Hi Zah, Thanks for the comments. Yup we really do have to put our foot down at some point but finding the right doctor to respond is the big chore sometimes. I think I will have to get one of my other docs to go to bat for me with a sedation, that should take me about a year to get that all organized, lol, but I am going to try today. Yup, we all get to that point at one time or another, just seems like this time the wall has really gone up for me. We long term survivors can relate for sure, having gone through this so many times, but for everyone their tolerance level is different and even those new to this cancer experience may feel the same way earlier. Thanks for your input, appreciate it.

soccerfreaks

Avoidance
I like the abused dog syndrome, which seems rather appropriate . I have always thought of it as Avoidance Therapy, myself . And I do not believe that you need to be an 'old-time' to experience it. I think it has more to do with the repetition than anything else, and for some, the repetition occurs more rapidly, for various reasons.

I recall that when I was in the hospital for the staph infection (for nearly all of February this year following that lobectomy) I had to be tested for insulin levels several times a day it seems, for most of the duration of my stay. This meant the always pleasant pinprick to the tip of the finger. This came to be the worst part of my day frequently. And when I suggested to the nurse that I would prefer a needle in a vein (at some point during all of this) as strange as that sounded for such a simple test, she responded that she gets that request a lot!

Something as simple as a tiny prick to the tip of the finger becoming something of that magnitude in the mind!

And so it is when the appointments start to stack up or begin to seem never-ending as well. I find myself tending to pick and choose, when that is NOT THE RIGHT THING TO DO. I sometimes think it is laziness, other times think I am simply sick of the inconvenience, but mostly, it is your 'syndrome', my 'therapy'. I don't personally think it has to do with a fear of pain or a fear of dire pronouncements even, but simply a core fatigue with the process that must be overcome.

Fine post, blueroses, and a subject worthy of exploration!

Take care,

Joe

blueroses

soccerfreaks said:

Avoidance
I like the abused dog syndrome, which seems rather appropriate . I have always thought of it as Avoidance Therapy, myself . And I do not believe that you need to be an 'old-time' to experience it. I think it has more to do with the repetition than anything else, and for some, the repetition occurs more rapidly, for various reasons.

I recall that when I was in the hospital for the staph infection (for nearly all of February this year following that lobectomy) I had to be tested for insulin levels several times a day it seems, for most of the duration of my stay. This meant the always pleasant pinprick to the tip of the finger. This came to be the worst part of my day frequently. And when I suggested to the nurse that I would prefer a needle in a vein (at some point during all of this) as strange as that sounded for such a simple test, she responded that she gets that request a lot!

Something as simple as a tiny prick to the tip of the finger becoming something of that magnitude in the mind!

And so it is when the appointments start to stack up or begin to seem never-ending as well. I find myself tending to pick and choose, when that is NOT THE RIGHT THING TO DO. I sometimes think it is laziness, other times think I am simply sick of the inconvenience, but mostly, it is your 'syndrome', my 'therapy'. I don't personally think it has to do with a fear of pain or a fear of dire pronouncements even, but simply a core fatigue with the process that must be overcome.

Fine post, blueroses, and a subject worthy of exploration!

Take care,

Joe

I might need more sleep here but not sure I compute this. lol
Hi Joe,

Thanks for your comments, it's always interesting to read everyone's interpretation on any given subject, thanks for yours.

Not sure if I know what the first sentence you wrote means, 'rather appropriate', what seems to be appropriate? Not sure I understand Avoidance Therapy for it? for what? Must just be a little slow today here. lol

As I pointed out in one of the postings it isn't ALWAYS the old timers in the cancer experience it is just that having lived through it for so long in a lot of cases there may be more of the repetitions is what I meant because of more time passing. Of course depending on the kind of cancer and extent of it a lot of invasive treatments can occur in a relatively short time as well, true.

The pinpricks aren't "simple" at all really when they are done in greater numbers to one person, the little discomfort you receive in one has no resemblance to the accummulation and anticipation one experiences over time as they mount with situation and frequency in each individual situation. Like the abused dog, after being hurt once, over time the quantity of abuse escalates the reaction faction til it's a fear that continues long past the situation has come to a stop. There are scars, emotionally as well as physically. I don't think that reducing one pin prick to something simple works for some of us because it has long since been raised in tolerance to much more than a pin prick when they occur. Like an abused dog being hurt even once.

I think we will have to agree to disagree here with the core issue in this discussion posting because if you get right down to the core of the reason for beginning to avoid these types of medical interventions it does, to me, come down to repetitive pain first and foremost, both repetitive physical pain and emotional pain as well. After that of course there is inconvenience and a multitude of other indignities, in some cases, and just plain being sick and tired of being sick and tired but at the basis of it, in an animalistic sense, there is pain or discomfort - of body and mind. I think it's quite natural for animals, like us, to fear something that will be painful - it's a built in mechanism and even though we 'superior' animals know that it's for our own good perhaps, that doesn't negate the simple pain element that we know is coming, for some, over and over.

I am not really understanding your 'therapy' idea here. The therapy to my mind in it all would then be avoidance, in some form - be it procrastination or running from it, but the initial reaction by some of us would first be pain. Please explain.

soccerfreaks

blueroses said:

I might need more sleep here but not sure I compute this. lol
Hi Joe,

Thanks for your comments, it's always interesting to read everyone's interpretation on any given subject, thanks for yours.

Not sure if I know what the first sentence you wrote means, 'rather appropriate', what seems to be appropriate? Not sure I understand Avoidance Therapy for it? for what? Must just be a little slow today here. lol

As I pointed out in one of the postings it isn't ALWAYS the old timers in the cancer experience it is just that having lived through it for so long in a lot of cases there may be more of the repetitions is what I meant because of more time passing. Of course depending on the kind of cancer and extent of it a lot of invasive treatments can occur in a relatively short time as well, true.

The pinpricks aren't "simple" at all really when they are done in greater numbers to one person, the little discomfort you receive in one has no resemblance to the accummulation and anticipation one experiences over time as they mount with situation and frequency in each individual situation. Like the abused dog, after being hurt once, over time the quantity of abuse escalates the reaction faction til it's a fear that continues long past the situation has come to a stop. There are scars, emotionally as well as physically. I don't think that reducing one pin prick to something simple works for some of us because it has long since been raised in tolerance to much more than a pin prick when they occur. Like an abused dog being hurt even once.

I think we will have to agree to disagree here with the core issue in this discussion posting because if you get right down to the core of the reason for beginning to avoid these types of medical interventions it does, to me, come down to repetitive pain first and foremost, both repetitive physical pain and emotional pain as well. After that of course there is inconvenience and a multitude of other indignities, in some cases, and just plain being sick and tired of being sick and tired but at the basis of it, in an animalistic sense, there is pain or discomfort - of body and mind. I think it's quite natural for animals, like us, to fear something that will be painful - it's a built in mechanism and even though we 'superior' animals know that it's for our own good perhaps, that doesn't negate the simple pain element that we know is coming, for some, over and over.

I am not really understanding your 'therapy' idea here. The therapy to my mind in it all would then be avoidance, in some form - be it procrastination or running from it, but the initial reaction by some of us would first be pain. Please explain.

Happy to
Happy to explain, Blueroses. By 'appropriate', I mean just that: that the coined phrase 'abused dog syndrome' is apt in this case. I am agreeing to agree, actually. As for the 'Avoidance Therapy' that is me at work with my usual weird sense of humor and the constant urge to invent. I mean that I avoid things and consider it a therapy unto itself . It is meant in jest, as I later pronounce in all caps that this is not a good way to deal with it.

As for your further explanation re pain avoidance and animal exstincts, I do not believe we are in disagreement there either. In fact, I believe I cover all of the bases you do, even giving an example of what might be considered a Pavlovian response (and there is little more 'animal instinct' than that) regarding the simple finger pricks. I suppose if we disagree re the 'core issue' it is because I believe that the core is not the pain, but the repetition, but that is minor, and the repetition, after all, would not be an issue either if it were a repetitive pleasure thing going on.

As I mentioned, I consider it a fine post, an interesting post worthy of further discussion.

Take care,

Joe

zahalene

blueroses said:

I might need more sleep here but not sure I compute this. lol
Hi Joe,

Thanks for your comments, it's always interesting to read everyone's interpretation on any given subject, thanks for yours.

Not sure if I know what the first sentence you wrote means, 'rather appropriate', what seems to be appropriate? Not sure I understand Avoidance Therapy for it? for what? Must just be a little slow today here. lol

As I pointed out in one of the postings it isn't ALWAYS the old timers in the cancer experience it is just that having lived through it for so long in a lot of cases there may be more of the repetitions is what I meant because of more time passing. Of course depending on the kind of cancer and extent of it a lot of invasive treatments can occur in a relatively short time as well, true.

The pinpricks aren't "simple" at all really when they are done in greater numbers to one person, the little discomfort you receive in one has no resemblance to the accummulation and anticipation one experiences over time as they mount with situation and frequency in each individual situation. Like the abused dog, after being hurt once, over time the quantity of abuse escalates the reaction faction til it's a fear that continues long past the situation has come to a stop. There are scars, emotionally as well as physically. I don't think that reducing one pin prick to something simple works for some of us because it has long since been raised in tolerance to much more than a pin prick when they occur. Like an abused dog being hurt even once.

I think we will have to agree to disagree here with the core issue in this discussion posting because if you get right down to the core of the reason for beginning to avoid these types of medical interventions it does, to me, come down to repetitive pain first and foremost, both repetitive physical pain and emotional pain as well. After that of course there is inconvenience and a multitude of other indignities, in some cases, and just plain being sick and tired of being sick and tired but at the basis of it, in an animalistic sense, there is pain or discomfort - of body and mind. I think it's quite natural for animals, like us, to fear something that will be painful - it's a built in mechanism and even though we 'superior' animals know that it's for our own good perhaps, that doesn't negate the simple pain element that we know is coming, for some, over and over.

I am not really understanding your 'therapy' idea here. The therapy to my mind in it all would then be avoidance, in some form - be it procrastination or running from it, but the initial reaction by some of us would first be pain. Please explain.

clarification...
When using the term 'old-timer' survivor, I was not necessarily speaking of years spent in the process of cancer survival. In this process time looses a lot of its meaning. We tend to live a lot in a short time. An old-timer can be a five year old for that matter. I think we should all get a significant medal of recognition on our second doctor visit after diagnosis. (It takes about that long to get them engraved).

blueroses

soccerfreaks said:

Happy to
Happy to explain, Blueroses. By 'appropriate', I mean just that: that the coined phrase 'abused dog syndrome' is apt in this case. I am agreeing to agree, actually. As for the 'Avoidance Therapy' that is me at work with my usual weird sense of humor and the constant urge to invent. I mean that I avoid things and consider it a therapy unto itself . It is meant in jest, as I later pronounce in all caps that this is not a good way to deal with it.

As for your further explanation re pain avoidance and animal exstincts, I do not believe we are in disagreement there either. In fact, I believe I cover all of the bases you do, even giving an example of what might be considered a Pavlovian response (and there is little more 'animal instinct' than that) regarding the simple finger pricks. I suppose if we disagree re the 'core issue' it is because I believe that the core is not the pain, but the repetition, but that is minor, and the repetition, after all, would not be an issue either if it were a repetitive pleasure thing going on.

As I mentioned, I consider it a fine post, an interesting post worthy of further discussion.

Take care,

Joe

Okie Dokie Smokie
Thanks for clearing that up. The first post you put up sounded confrontational to me right off the bat so that's probably where it might have all gone wrong. Strange vibes come across sometimes in chat, as you no doubt know, and it's often that people pick up the wrong ones. I have always found that this happens mostly when people joke around or use sarcasm. Sarcasm and humor just don't seem to translate well at times online I guess because without inflection they just appear as the words they are which can be harsh. Oops, there is another study to be done. lol.

Thanks for your input Joemeister. Have a great day.

blueroses

soccerfreaks said:

Happy to
Happy to explain, Blueroses. By 'appropriate', I mean just that: that the coined phrase 'abused dog syndrome' is apt in this case. I am agreeing to agree, actually. As for the 'Avoidance Therapy' that is me at work with my usual weird sense of humor and the constant urge to invent. I mean that I avoid things and consider it a therapy unto itself . It is meant in jest, as I later pronounce in all caps that this is not a good way to deal with it.

As for your further explanation re pain avoidance and animal exstincts, I do not believe we are in disagreement there either. In fact, I believe I cover all of the bases you do, even giving an example of what might be considered a Pavlovian response (and there is little more 'animal instinct' than that) regarding the simple finger pricks. I suppose if we disagree re the 'core issue' it is because I believe that the core is not the pain, but the repetition, but that is minor, and the repetition, after all, would not be an issue either if it were a repetitive pleasure thing going on.

As I mentioned, I consider it a fine post, an interesting post worthy of further discussion.

Take care,

Joe

Caps in chat
Joe, I forgot to mention in my reply to your posting that you talked about clarifying in CAPS but, and maybe this has changed over time, but putting words in CAPS in chat usually means SHOUTING the word that you capitalize so that added to the confrontation tone I was mentioning. See how things can be misread in chat? Anywho, no problemo I get your points. Well taken.

blueroses

zahalene said:

clarification...
When using the term 'old-timer' survivor, I was not necessarily speaking of years spent in the process of cancer survival. In this process time looses a lot of its meaning. We tend to live a lot in a short time. An old-timer can be a five year old for that matter. I think we should all get a significant medal of recognition on our second doctor visit after diagnosis. (It takes about that long to get them engraved).

Ain't Dat the Troot, lol
Yippers Zah we sure do live a long time in a short period of it when going through the cancer experience, I totally agree.

terato

"When my ride shows up, I'm getting the Hell out of here!"
Blueroses,

After a horrendous day of puking my insides out because of treatment with cisplatin, bleomycin, and vinblastin, I woke up looking forward to being picked up at the hospital by my father. To rain on my parade, the morning nurse said, "You haven't been voiding enough and 'the doctor' won't release you until your urine output improves." Angrily, I retorted, "Which doctor?" "Dr. Farmen, the resident on duty." She replied. "I don't know who the Hell, Dr. Farmen is and have no idea if he is even familiar with my case. Unless Dr. Watson himself says otherwise, when my ride shows up, I'm getting the Hell out of here!" And, I did and no one dared to stop me! Never mess with a bald guy with one testicle and a ten inch belly scar!

Love and Courage!

Rick

Dreamdove

terato said:

"When my ride shows up, I'm getting the Hell out of here!"
Blueroses,

After a horrendous day of puking my insides out because of treatment with cisplatin, bleomycin, and vinblastin, I woke up looking forward to being picked up at the hospital by my father. To rain on my parade, the morning nurse said, "You haven't been voiding enough and 'the doctor' won't release you until your urine output improves." Angrily, I retorted, "Which doctor?" "Dr. Farmen, the resident on duty." She replied. "I don't know who the Hell, Dr. Farmen is and have no idea if he is even familiar with my case. Unless Dr. Watson himself says otherwise, when my ride shows up, I'm getting the Hell out of here!" And, I did and no one dared to stop me! Never mess with a bald guy with one testicle and a ten inch belly scar!

Love and Courage!

Rick

Hospital Nightmares
HAPPY HALLOWEEN! I hope I never have to stay in a hospital again. Last time I was there I felt like Jamie Lee Curtis in the Halloween movie. Any moment I expected to see Michael Myers himself entering my room welding a large kitchen knife. I could have sworn I was the only patient, or anybody for that matter, on my floor. They take your blood pressure countless times during the night, wheel you up to the cold x-ray room a couple of times a day, are forever checking your urine output. The bed is very uncomfortable, you can never find the right angle to rest or sleep no matter how many times you adjust it. And the call box is always falling off the side of the bed or you think it's falling off. Four days after my surgery I had to get up in the middle of the night to get weighed. And I never want to eat another liquid meal again. I'm not normally a channel flipper but I guess I was while in the hospital. And I totally forgot to watch my favorite programs.

blueroses

terato said:

"When my ride shows up, I'm getting the Hell out of here!"
Blueroses,

After a horrendous day of puking my insides out because of treatment with cisplatin, bleomycin, and vinblastin, I woke up looking forward to being picked up at the hospital by my father. To rain on my parade, the morning nurse said, "You haven't been voiding enough and 'the doctor' won't release you until your urine output improves." Angrily, I retorted, "Which doctor?" "Dr. Farmen, the resident on duty." She replied. "I don't know who the Hell, Dr. Farmen is and have no idea if he is even familiar with my case. Unless Dr. Watson himself says otherwise, when my ride shows up, I'm getting the Hell out of here!" And, I did and no one dared to stop me! Never mess with a bald guy with one testicle and a ten inch belly scar!

Love and Courage!

Rick

That last sentence Rick made me laugh out loud
"Never mess with a bald guy with ....", I nearly spit my drink onto the computer screen laughing so hard. Your feisty attitude when faced with your situation today reminded me of so many like that I went through, just freaks me out at how much strength we have when we feel that enough is enough eh? Well I want to say good for you for standing up for yourself but I hope that you aren't going to get into any physical problems with leaving when they wanted you to stay to check the output. If you have any strange symptoms you really should consider going in to the E.R. in case you run into difficulties, I know going back to a hospital makes you want to gag (I totally feel the same way) but promise me you will go if you aren't feeling right or start having weird symptoms, k?

I'm so sorry you had a rotten time today, hopefully tomorrow will be a better day for you. Take it easy.

God Bless kiddo.

blueroses

Dreamdove said:

Hospital Nightmares
HAPPY HALLOWEEN! I hope I never have to stay in a hospital again. Last time I was there I felt like Jamie Lee Curtis in the Halloween movie. Any moment I expected to see Michael Myers himself entering my room welding a large kitchen knife. I could have sworn I was the only patient, or anybody for that matter, on my floor. They take your blood pressure countless times during the night, wheel you up to the cold x-ray room a couple of times a day, are forever checking your urine output. The bed is very uncomfortable, you can never find the right angle to rest or sleep no matter how many times you adjust it. And the call box is always falling off the side of the bed or you think it's falling off. Four days after my surgery I had to get up in the middle of the night to get weighed. And I never want to eat another liquid meal again. I'm not normally a channel flipper but I guess I was while in the hospital. And I totally forgot to watch my favorite programs.

I can relate
Happy Halloween. I, like many people on this site, can totally relate to all kinds of hospital nightmares I'm sure. I was actually in hospital one Halloween and missed my kids big night out, I remember a friend brought in their bags of candy and spred it on the hospital bed for me but I was on treatment and unable to eat anything. Not the place you want to be on Halloween, that's for sure. Reading about all you went through in a typical hospital stay, I had forgotten some of it like the channel flipping, the call button never within sight and that lovely hospital food, liquid or otherwise. Just a real barrel of laughs huh? lol. Well we are both home and not in hospital right now so let's count our blessings. Take care.

terato

blueroses said:

That last sentence Rick made me laugh out loud
"Never mess with a bald guy with ....", I nearly spit my drink onto the computer screen laughing so hard. Your feisty attitude when faced with your situation today reminded me of so many like that I went through, just freaks me out at how much strength we have when we feel that enough is enough eh? Well I want to say good for you for standing up for yourself but I hope that you aren't going to get into any physical problems with leaving when they wanted you to stay to check the output. If you have any strange symptoms you really should consider going in to the E.R. in case you run into difficulties, I know going back to a hospital makes you want to gag (I totally feel the same way) but promise me you will go if you aren't feeling right or start having weird symptoms, k?

I'm so sorry you had a rotten time today, hopefully tomorrow will be a better day for you. Take it easy.

God Bless kiddo.

This happened some time ago!
Blueroses,

The nurse had not taken into account the amount of liquid I had puked up the day before. One end or the other, I had expelled a lot of juice, and I did not intend on spending one more minute in that place than I had to while people I didn't know were measuring my piss! The fact that I am alive so many years later shows I was right!

We know out own bodies better than "they" do, sometimes!

Love and Courage!

Rick

lindaprocopio

terato said:

This happened some time ago!
Blueroses,

The nurse had not taken into account the amount of liquid I had puked up the day before. One end or the other, I had expelled a lot of juice, and I did not intend on spending one more minute in that place than I had to while people I didn't know were measuring my piss! The fact that I am alive so many years later shows I was right!

We know out own bodies better than "they" do, sometimes!

Love and Courage!

Rick

I'm with you: HATE hospitals!
My cancer is still newly diagnosed, but my initial experience with my hysterectomy hospital stay certainly concurs with all of yours. I checked myself out 2 days after my radical hysterectomy after spending the 1st night with a call button that didn't work and a catheter that didn't work. (My surgeon siphoned off more than a litre of urine from my bladder when he came in for morning rounds at 5AM and found me sitting with the bed cranked up to full seated position to relieve the horrible pressure. Even in my post-anesthesia haze I remember them coming in to check vitals and jiggling the catheter and mumbling that "this doesn't seem to be working right', but no one did anything about it.) Then, because I couldn't get out of bed yet by myself due to the 9" gash in my gut, I had my catheter and IV disconnected and had them get me up and put me in a chair for Night 2, so that I could get MYSELF to the bathroom. I already had ZERO trust in any of them. And when my husband came to see me, I lied about having the required 'bowel function' (which was still a good 3 days away), and got myself discharged. I puked all over my room getting into the wheelchair, but I insisted that he wheel me out of there. And the paperwork was done, and so they let me go. It will be very hard for me to voluntarily go back there again. My 1st radiation and chemo are still a week away, and ALREADY, from all the barbaric office biopsies and the first surgery, I feel I have the 'kicked dog' syndrome. Already.

blueroses

terato said:

This happened some time ago!
Blueroses,

The nurse had not taken into account the amount of liquid I had puked up the day before. One end or the other, I had expelled a lot of juice, and I did not intend on spending one more minute in that place than I had to while people I didn't know were measuring my piss! The fact that I am alive so many years later shows I was right!

We know out own bodies better than "they" do, sometimes!

Love and Courage!

Rick

Oh I so agree
Hey Rick, I thought this just had happened to you, hence the warning obviously about making sure you weren't having symptoms that might have to send you back. Oh I so agree that we, well most of us, know our bodies better than the docs after all who supplies them with the symptoms necessary for their diagnoses? I noticed you said the word 'resident' as well so that struck a chord in me as well, maybe it's just my experiences but I have had to stop residents from doing all kinds of haywired things that I knew weren't in my best interests, it never turned out to be the wrong interventions on my part. We absolutely have to listen to that little voice but have the wisdom to know when to hand it over to the experts as well. This all reminds me of The Serenity Prayer that goes like this 'God grant me the Serenity to accept the things I cannot change ... Courage to change the things I can and Wisdom to know the difference'.

Actually I nearly died, literally because of the 'output' issue during my bone marrow transplant. I was in hospital after the transplant was done and was going to be moved to another isolation unit in another hospital so I had to get dressed. I put on my jeans which I hadnt had on since I got into the hospital 2 weeks or so before for the treatment and I could hardly get the zipper up in the front. They had been plying me full of liquids and I was sooooooooo thirsty, dried out no doubt from the total body radiation, and they had a sheet there to record all that went in to me and what came out. I mentioned the obvious bloating to me, they checked my ankles and said it wasnt a big deal, sure felt like a big deal to me. Anywho they transferred me and the day after I got to the hospital I went into congestive heart failure, a quick acting cardiologist screamed 'GET HER ON DIARETICS NOWWWWWWW', apparently no one was doing the math in the input and output department and it all threw me into heart failure. Been battling that ever since. In that case it was one small symptom that I did report but all ignored.

I look at healthy people walking around oblivious to the possible downsides of hospital stays, they are still blissfully ignorant thinking 'oh well if I get sick I just go in and they will fix me', hmmm. I live near my hospital here and so hear alot of ambulances going in and each time I first thank God I'm not in it for once, and the second prayer is for whoever is in it. Ahhh for that blissful ignorance stage again. lol.

I don't want to sound like I am bashing the medical community as a whole but it's important to be open and come forward not only with the brave battles we wage everyday but with the parts that aren't so pallitable. Heck they saved my life, no biatching here about them for the most part but there is the other side of it we all tend to bump into once and again. Anywho dat's my 3 cents. lol.

blueroses

lindaprocopio said:

I'm with you: HATE hospitals!
My cancer is still newly diagnosed, but my initial experience with my hysterectomy hospital stay certainly concurs with all of yours. I checked myself out 2 days after my radical hysterectomy after spending the 1st night with a call button that didn't work and a catheter that didn't work. (My surgeon siphoned off more than a litre of urine from my bladder when he came in for morning rounds at 5AM and found me sitting with the bed cranked up to full seated position to relieve the horrible pressure. Even in my post-anesthesia haze I remember them coming in to check vitals and jiggling the catheter and mumbling that "this doesn't seem to be working right', but no one did anything about it.) Then, because I couldn't get out of bed yet by myself due to the 9" gash in my gut, I had my catheter and IV disconnected and had them get me up and put me in a chair for Night 2, so that I could get MYSELF to the bathroom. I already had ZERO trust in any of them. And when my husband came to see me, I lied about having the required 'bowel function' (which was still a good 3 days away), and got myself discharged. I puked all over my room getting into the wheelchair, but I insisted that he wheel me out of there. And the paperwork was done, and so they let me go. It will be very hard for me to voluntarily go back there again. My 1st radiation and chemo are still a week away, and ALREADY, from all the barbaric office biopsies and the first surgery, I feel I have the 'kicked dog' syndrome. Already.

So sorry you had to go through all of that but sounds familiar
Hi Linda. If you are interested you can read my post to Rick about one of my horror stays that set me up for being very leary of hospital stays but when you have to you have to go in but staying conscious is the best idea if at all possible, lol. You really want to monitor what is going on around you and that is why I always talk to people about always trying to have an advocate lined up to speak for you and be with you in the hospital, and in doctor's appts. actually too, to catch things you might miss and to help you through the stays. This brings another incident to mind when I was in hospital. I had a needle go interstitial which means, if you don't already know, it has gone out of the vein and into the tissue so your hand, or wherever the needle was placed blows up like a balloon. I woke up in extreme pain and took one look at my hand and realized that no one had checked on me in awhile. I rang the bell and this nurse who looked like I had just interrupted a very important card game or something came in and said 'lovingly' 'What?' Sheeesh. Anywho I ripped into her and showed her the damage. She changed the site, no sorry or anything and I lie there afraid to go back to sleep, like what the heck is next? I was in quite a bit of pain, not from the interstitial thingy but just from the transplant problems and I noticed it was going on an hour past my pain medication. I called the nurse in and again 'WHAT?' and I reminded her my pain med was late to which she said 'only by an hour I will get to it when I can'. I went nuts on her. ONLY AN HOUR? When you are pain, as you well know, a minute can be an eternity, so I told her I wanted to see the supervisor, she came in and I said 'I don't want that nurse on my case anymore'. She argued with me but then conceded and in came another nurse. But why the heck when we are fighting so much that is truly important do we have to deal with this too? Ya ya, lack of funding, short of staff, blah blah blah, fine then, deal with us as victims of the 'abused dog syndrome', you abused us, not with any malice of course but it hurt - plain and simple, and now we are fearful. Respect us for that, okay?

Again, only being honest and coming forward with the 'other 'side of the cancer experience, we will all feel a bit better sharing our stories of this side without fear of being shunned or invalidated. And that is very healing indeed.

Thanks for your posting Linda, you aren't alone. Cancer research has come a long way and is responsible for keeping many of us on this planet far longer than our ancestors could and we are all extremely thankful for that but like I said before, it's just important to talk out all aspects of the experience. We have been poked, produded, fed toxins, yada yada but again, just respect us when we flinch when you mention another invasive procedure, which to some might even be a needle prick - ENOUGH ALREADY we say, now and again. Just validate and respect us, that's all we ask. Take care.

nsquirrely

abused dog syndrome
After 54 years of relatively good health to be dx with cancer really caused a lot of that abused dog syndrome for me. After two major surgeries in six weeks, cellulitis resulting in three hospital stays, and 8 weeks of radiation, I certainly felt abused. I realize it was all necessary at the time but it sure does cause one to avoid any test, appt, ect that may lead to more of the same. I even stated once in the chatroom that even if deemed necessary I would refuse more surgery. I remember getting grief about that but it was how I felt at the time. I still dread the scheduled checkups for fear it will lead to yet another round of doctors and tests.
I think that a lot of it has to do with the need to feel normal again and get back to the life we had before cancer. Even though I've been told by many that I need to find a new normal, I still try to get the old normal back each day. I have to ask myself how is that working for you regularly and the answer is not well but I still try for it daily. I've even agreed to have yet another surgery to aid that need for normal. I never thought that would ever happen but it is a last resort since other forms of treatment have not done the trick.
I do agree that cancer and all that goes with it leaves us feeling abused in many ways. Physically, mentally, emotionally, financially!!!!! Nothing seems to escape it. All that is left when it is done is a shell of who we used to be wondering what in the world happened to the person we used to be before all this. Yet it is never truly done so perhaps that is the problem. Something to consider?

blueroses

nsquirrely said:

abused dog syndrome
After 54 years of relatively good health to be dx with cancer really caused a lot of that abused dog syndrome for me. After two major surgeries in six weeks, cellulitis resulting in three hospital stays, and 8 weeks of radiation, I certainly felt abused. I realize it was all necessary at the time but it sure does cause one to avoid any test, appt, ect that may lead to more of the same. I even stated once in the chatroom that even if deemed necessary I would refuse more surgery. I remember getting grief about that but it was how I felt at the time. I still dread the scheduled checkups for fear it will lead to yet another round of doctors and tests.
I think that a lot of it has to do with the need to feel normal again and get back to the life we had before cancer. Even though I've been told by many that I need to find a new normal, I still try to get the old normal back each day. I have to ask myself how is that working for you regularly and the answer is not well but I still try for it daily. I've even agreed to have yet another surgery to aid that need for normal. I never thought that would ever happen but it is a last resort since other forms of treatment have not done the trick.
I do agree that cancer and all that goes with it leaves us feeling abused in many ways. Physically, mentally, emotionally, financially!!!!! Nothing seems to escape it. All that is left when it is done is a shell of who we used to be wondering what in the world happened to the person we used to be before all this. Yet it is never truly done so perhaps that is the problem. Something to consider?

I can imagin how horrid it was after all that time clear thanBAM
I have been where you were when you found out it was back, but just for a few weeks, when they THOUGHT they found something then started throwing the word NHL recurrance around before they even knew what the heck it was. Put me into a major fearful state of any test or doctor or suggestion of ANYTHING while at the doctor, for me it turned out alright then but to tell you the truth now I still wonder what the heck those nodules are and is it just a precursor to recurrance? I never thought that way before, once I had treatment and it was gone it was gone and I didn't worry about it coming back but it's just been toooo much and even though I have been down with many side effects from my bone marrow transplant the possibility of fighting the BIG ONE again is so scarey and sets me growling like an abused dog whenever they come at me with any medical instrument or idea.

Yup, it's necessary - you are right but still you have to be in control as some things might not be necessary (medical intervention I mean) and there are usually ways to make it easier for the patient and they have to be reminded of that sometimes, sometimes you have to fight to save yourself unnecessary grief. I remember before transplant they were going to do another bone marrow sample and that is very painful. I had had 2 before, both awful and so I said 'why the 3rd one?' 'You are going to do the transplant no matter what you find in the marrow, right? They said 'right' so I said 'why put me through that again then?' They said 'oh, okay'. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

I have fought for medications, anti nausea drugs, different easier procedures, suggested one specialist actually talking to one of my other ones to help me double up on surgeries for different things saving more anaesthetic - man you sure have to be well to be sick - so much strength you have to have when you are the weakest - standing up for yourself sometimes.

Ya I can imagine the room coming down on you for not wanting to do whatever to help you medically but at the same time if they knew what it entailed to us who have had so much intervention they might think twice. But it's an automatic response to want to help someone who might be giving up and that's probably what they thought. It's not about giving up it's about having had ENOUGH.

I agree that a lot of it is about wanting to feel normal again, after going through it all, and just the thought of it all over again is often too much to bear.

Yup I do also, as most of us do I am sure, wonder about what happened to that person the way we used to be, granted I became a better person too though in many ways after the cancer experience. However I would be untruthfull if I said that I would choose this path to realization, if given a choice. Everything for a reason though I suppose.

Like you said, it is never really over for many, well all actually, in one way or another I'm sure.

I'm not sure I understand what you meant by 'something to consider'? You mean the idea that since it is neverending no wonder we feel abused? Could you clarify that please, thanks

Dreamdove

nsquirrely said:

abused dog syndrome
After 54 years of relatively good health to be dx with cancer really caused a lot of that abused dog syndrome for me. After two major surgeries in six weeks, cellulitis resulting in three hospital stays, and 8 weeks of radiation, I certainly felt abused. I realize it was all necessary at the time but it sure does cause one to avoid any test, appt, ect that may lead to more of the same. I even stated once in the chatroom that even if deemed necessary I would refuse more surgery. I remember getting grief about that but it was how I felt at the time. I still dread the scheduled checkups for fear it will lead to yet another round of doctors and tests.
I think that a lot of it has to do with the need to feel normal again and get back to the life we had before cancer. Even though I've been told by many that I need to find a new normal, I still try to get the old normal back each day. I have to ask myself how is that working for you regularly and the answer is not well but I still try for it daily. I've even agreed to have yet another surgery to aid that need for normal. I never thought that would ever happen but it is a last resort since other forms of treatment have not done the trick.
I do agree that cancer and all that goes with it leaves us feeling abused in many ways. Physically, mentally, emotionally, financially!!!!! Nothing seems to escape it. All that is left when it is done is a shell of who we used to be wondering what in the world happened to the person we used to be before all this. Yet it is never truly done so perhaps that is the problem. Something to consider?

I tried to get the old me back
nsquirrely, I have really attempted to get the old me back but maybe that was a mistake. My hair is back to normal, my physical activity level also. My life is pretty much the same and I have the same job. I did move to a more convenient apartment very close to where I work. I basically have the same activities in my life as before. However, dating is a disaster. I find it very difficult. I am not the same as before, physically, mentally, and emotionally. Yet a part of me still wants to be like I was before the hysterectomy. But I want someone to love the "new" me. And that seems to be the hard part.