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The 'abused dog syndrome'

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

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's picture
zahalene
Posts: 624
Joined: Nov 2005

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's picture
blueroses
Posts: 527
Joined: Jul 2008

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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's picture
blueroses
Posts: 527
Joined: Jul 2008

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

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's picture
blueroses
Posts: 527
Joined: Jul 2008

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.

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

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's picture
blueroses
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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's picture
terato
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Joined: Apr 2002

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's picture
Dreamdove
Posts: 175
Joined: Sep 2008

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's picture
blueroses
Posts: 527
Joined: Jul 2008

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.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

"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.

terato's picture
terato
Posts: 384
Joined: Apr 2002

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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's picture
blueroses
Posts: 527
Joined: Jul 2008

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.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

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.

terato's picture
terato
Posts: 384
Joined: Apr 2002

The thing that bothers me most, is the assumption that patients are mere "cases" incapable of independent thought. I remember a young resident asking me if he could present my case when he went on rounds with his interns. When I informed him that I was having difficulty with side effects and explained that I had not yet had my vinblastin, he asked me if "vinblastin" was an anti-emetic. I told him that it was one component in my "chemo-cocktail" and he went on his way. The next day, he brought his interns around and asked if I had had my dose of vinblastin yet. As he concluded and began moving his group out of my room, I overheard him explain that vinblastin "...was one component of (my) chemo-cocktail". Should I have sent him a tuition bill?

Love and Courage!

Rick

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Good one Rick, those residents - gotta love em. Ahh the stories we all could tell about that one group of medical sorts alone. lol

Actually I try and make it a rule of mine that if a resident does anything to treat me like less than a human being or ignorant I do my best to set him/her straight as tactfully as I can. Of course it depends what the situation is when I am in hospital and my pain level or heart's situation (2 of the reasons I normally find myself in a resident's care), sometimes tact goes out the window and I just let them know that I am not a case first, I am a person first. Maybe the next patient who doesn't have as much strength as I mustered with this particular resident will be treated better because I took the time to educate him/her.

Way to go 'Teach'. lol

nsquirrely
Posts: 50
Joined: May 2007

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's picture
blueroses
Posts: 527
Joined: Jul 2008

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

nsquirrely
Posts: 50
Joined: May 2007

I'm sorry it took me some time to get back to you with an answer. I just thought that we should consider the idea that feeling abused comes partly from the fact that it seems to be a neverending process in our lives once we have been dx with cancer.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hi, NS, If I could just jump in here for one second just wanted to add that I totally agree that this feeling of abuse does come directly, for most, from the constant barrage of tests and procedures that follows diagnosis. The constant repetition of pain and fear would make any person hesitant or terrified of the next painful event and so it goes on and on making one feel 'abused'. It can be a pattern for sure. Too I think we must consider not only the repetition causing this syndrome but even one horrendous procedure or news can produce the same thing. I often wonder how many cancer patients suffer from Post Traumatic Stress Disorder, a condition mostly linked to war and accidents. How different is it to be traumatized by war within our own body? Hmmm, maybe that should be a new link. What does everyone think?

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

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.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

With my hysterectomy just 3 weeks ago, I can already see how wary my grandkids (ages 6 & 7) are around me, warned repeatedly by their parents not to hurt or tire or cough on this new 'sick Grammy Linda'. But for both days of this 'between treatments' weekend, I did everything in my power to be 'the old me' for them, the pre-cancer grandma they had a couple of months ago. This was our first 'sleep over' weekend since my surgery, and over the course of 24 hours, we went to two different playgrounds, even though I was unable to catch them when they couldn't make it across the monkey bars, (but that gave them extra incentive to make it across to the ladders on the other side!) And we walked to the Dollar Tree and bought PopRocks to explode in our mouths; and went to McDonalds so they could play in that playland, and went for huge make-your-own-sundaes at Friendly's. And just as they have always done, curled up in bed in the dark, the grandkids grilled me about all the big things they've been wondering about that no will talk to them about ("Are you trying not to die?" "Will you be able to see me from heaven?"), and I let them see my big new scar, and did my best to answer in reassuring age-appropriate ways all of the ga-zillion questions about radiation and chemo that little people will have after over-hearing the adults talk around them. And my incision was finally healed enough that I could let them snuggle against me to watch TV. And for 2 days, I was 'the old me' and they looked so happy to have me back. And so was I. You who have been living with cancer longer, please tell me, is that the trick to this?: in the reprieves between treatments, do you have to pack it all in and LIVE as hard as you can and BE YOU as much as you can? In those little windows of 'normalcy' do you try and regain as much of YOU as you can, even as the cancer re-defines who that is?

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

linda, I do have windows of normalcy more and more. I feel like the "old me" often, but not often enough to say I am the "old me." Jan. of 2009 will be 2 years since the ovarian cancer diagnoses. And people in general are more comfortable with me. There are those who will never be comfortable. I can see fear in their eyes. I think it's fear for themselves, fear that it may happen to them and what would they do? Could they be strong and survive or will they crumble and their whole world collapse around them. Hysterectomy is very difficult for a woman and something I never thought would happen to me. But yet as time as gone on, I actually feel almost "normal." "Normal" as I sit here at the keyboard! I thought I would be all empty emotionally because my uterus, fallopian tubes, ovaries, cervix, and even my appendix are gone forever. Those parts kind of defined me in some ways because for so many years I planned my life: to find a man who loved me, get married, and have children. Well, 2 out of 3 of my children are grown up and I have been divorced for 16 years now. Those parts they took out can no longer define who I am. I have been forced to move on. So I have tried to be "ME" as much as I can, whoever that is, in the life I have left.

sandybe
Posts: 40
Joined: Aug 2008

Normalcy is all I have been striving for since my first diagnosis almost two years ago. My children are still young. All through treatment I never missed a hockey game or a dance recital, I made it too all but one baseball game because I was too sick. I tried to live as close to normal as I could for my kids aged 6 and 8 at the time. I think it was just as important for me to live the same kind of life as before the diagnosis as it was for my children and husband. It was very difficult at times, and I know I paid for it physically at times as well. My mother would get upset with me because I was doing too much, and I could totally see her view of things, but to me it was important to be there for my kids as much as I could. My children knew what was happening to me, but are still so young to completely understand. I felt better myself being with them. I guess I made them my priority, and a little bit of normalcy for me.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I'm so glad that you found a way to remain as close to normal as was possible and sounds like even went beyond what you should have been doing but if it worked for you then that's the important thing. I too had young kids when I was sick and thank God they were also too young to really know what was happening, unfortunately I was extremely ill after having congestive heart failure during transplant so I couldn't have done half of what you were able to do but I know that I tried my best too, for the kids sake to fight off symptoms of the treatments as well. I am so glad you got to feel even that little bit of normalcy, I am sure it carried you a long way. God Bless and take care.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My little grandchildren are the only ones that dare to talk about whether I might die. They love me as much as they love anyone on earth, but they don't have the same fear of that possibility as the rest of my family and friends. Last year when their pet rabbit died, and every summer as the hermit crabs from the beach and the goldfish from the Fair die, they wipe away their tears and matter-of-factly repeat what I've always told them: "All God's creatures poop; and all God's creatures die." And their simple openness this weekend actually took away most of my own fear. I told them that I will try not to die any time soon and will fight hard to stay here with them in this world. They agree with that, even with their pure unwavering faith in our eventual reunion in heaven. And now that we've talked about it, they'll have an easier time accepting the changes in me during my upcoming radiation and chemo. And I will make these amazing children a priority during the periods between treatments where I feel good, and do everything I can to rise to the occasion by being "the old me" as much as I can whenever I can. What a wonderful discussion board this is that we start out this thread talking about being de-humamized by our insensitive treatments, and end up counting our blessings!

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Kids are so great for lifting ones spirits in so many situations aren't they? I believe they are so honest and connected because they haven't been on the planet long and still remember 'the source' and 'the truth' so clearly. But after years on this planet they learn about pain and negativity and all that could be seen as dark and slowly that innocence vanishes to some degree or another. Wish we could all stay as connected as we were in the early years, think of what a different place the world would be then?

Your Grandkids sound truly enlightened, thanks it seems, in great part to you. Keep up the good work, it benefits all concerned.

I agree that this discussion board throughout is a blessing to all who read the posts and even though I feel it's necessary to talk out all sides in the cancer experience, good, bad and ugly I do feel that invariably it leads one back to what they have that is good in their lives. Glad you came to that conclusion too. Take care.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Linda,first off I am so glad you had such a fabulous time with your Grandkids, as the old Grammy Linda, bet that did you more good than all the meds on the planet eh? So glad you could muster up enough energy to do that, wonderful. I am sure it did a great deal for the kids as well, to get some answers to their questions and see how things haven't changed that much at all. Great job Grammy, all the way around.

In the beginning, as I was going through my first chemos and everything was so new to me in how rotten I felt and how much I couldn't do anymore, I do remember several times feeling such a loss oh how things used to be. However as time went by, new symptoms kept coming up and others not going away, I stopped thinking about normalcy and started to live day by day - actually it was all I could do really. I have my up and down times but I don't really think of normalcy anymore. Maybe I have just forgotten what that was like now that so many years have passed. Maybe every cancer patient has their own ideas as to how to bring back 'normalcy' into their lives, or cope with their new normalcy, maybe depending on how invasive the health situation is in their lives at any given point. God Bless.

TereB
Posts: 288
Joined: May 2003

There have been times when I have felt the Abused Dog Syndrome. It usually happens when I've been having too many tests. By the time I go for a blood test, my urge to run is huge. And the moment I see the needle I start crying. A blood test is not so bad, it's just one test too many. I also suffer from Avoidance. There are times when I am due for many tests and I feel the strong urge to cancel the appointment. Once I am there for the tests, the urge to ran is big.

To me the MRI machine is just like a coffin. I am now able to have my MRIs without a sedative and can even take a nap while I'm in the machine. Your mind can help you in many ways to deal with all of this.

I guess I've been lucky that I go to a nice hospital. It is the policy of the hospital to treat all the patients in a very nice way and to not allow any of them to be in pain. This works very well for me most of the time... until I get tired of being in the hospital and want to go home but I am not allowed to. I become the scared abused dog ready to bite to protect myself.

The last time I was in the hospital was for a total hysterectomy. Many things went wrong and I was there for three weeks. My sister who lives in another city was worried, she thought maybe my husband was not telling her the truth, that I was probably dying. To her, three weeks in a hospital is only for very sick people. My husband came to my room with a camera, said my sister didn't believe him when he said I was doing OK so he wanted to send her a picture of me. I must've been under the influence of the morphine because I actually lifted my gown and let him take a picture. Just before he left I told him to tell my sister not to show the pic to anyone. He sent her the picture and told her that if she was going to show the pic to anyone, to charge at least $5 and split it with him. He is very lucky I didn't find out about this for a very long time.

After having so many tests, most of us do not want to have anymore. The same with stays in the hospital. I think humor can help us go thru all of this. Maybe we sometimes get so angry because we are scared.

Take care,
Tere

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hi Tere, I really do thing a big part of the this 'syndrome' is fear, like it is for a dog who has been abused, absolutely. Again depending on the level of medical intervention in kind and frequency I think they syndrome can be great and long lasting or fleeting. We all also have different pain level tolerances so that plays into whether or not we have experienced this as a significant problem as well. This posting to discuss this 'syndrome' is only to allow those of us who have felt this at one time or many to express ourselves and more importantly to feel validated that it's just not us who feels antsy at even the slightest suggestion of more tests. This posting is not to be negative about the cancer experience in its entirety but to mention even the less pallitable parts as well. You hear everyday of how brave and strong we cancer patients can be and that is very true but even the brave and strong have their weaker times too and I think it's important to be able to talk about all aspects of the experience as I mentioned in another recent post. I myself are very grateful for all the newest in medical breakthroughs and the many wonderful nurses and physicians and hospitals I have been in but keeping the subject all smiles and 'hang in there's, and 'you're so braves' needs to be balanced. At least that's what I feel the beauty of this site does, allows us to express ourselves openly on whatever part of the cancer experience is troubling us or we want to share at any given time. Chat spaces who edit out personal views, albeit as long as they are done politely and without malice, do us a great disservice. Thanks to CSN for giving us an honest platform.

terato's picture
terato
Posts: 384
Joined: Apr 2002

to CSN for investing the time and effort to making this site so user-friendly as to inspire this level of meaningful activity, much greater than with the previous incarnation of this site. This quality and frequency of dialogue serves a crucial need of cancer patients, at every stage of our disease, as well as their families. There is no greater healer than one who has been through Hell and back and is willing to share the wisdom learned through the experience.

To CSN staff, I extend my gratitude.

Rick

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Ditto, Rick. Well said.

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