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The biggest blunder I ever made........

coloCan
Posts: 1956
Joined: Oct 2009

was not having a colonoscopy at an earlier time in my life BEFORE the irreversible damage began.....Whatever my lifestyle prior may have contributed to my diagnosis I feel most,if not all, of the responsibility for my condition rests upon myself ,crucially my refusal to do what I knew I should've done, esp since I already had 'roids and a polyp for years.......But just because I blame my own stupidity doesn't mean I wallow in it or allow myself to look backwards or waste time on "what ifs"........

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

The thing about this thought that now keeps entering my mind is about my kids. I didn't have any family history of colon cancer and I led the so called healthy life. So since I got the diagnosis and my onc told me my children (25 and 24) need to have their colonoscopy 10 years younger than I was at diagnosis....why only 10 years? I know it's not what they want to do or think about, but like you said coloCan...why wait for the damage? Look at the young people on here with this diagnosis. And I consider myself as young at 46, there are kids here in their 20's like my kids.

Just thinking, Gail

pscott1
Posts: 207
Joined: Jan 2011

I'm 1 day away from a liver biopsy to see if what the first Onc told me is true. She says my MRI that was done on 2/17, which they didn't do on 1/8 before the colonoscopy or after, but probably had time to do; shows that I have multiple lesions - 15, that it's definitely mets to my liver from the colon cancer, incurable, inoperable, radiation not an option, only chemo and maybe I might see another 4 years! I went for 2nd opinion to Siteman Cancer Center and my new Onc says that he doesn't see what they are seeing. He says spread should never be based off scans alone. So Wednesday I do the biopsy and find out the truth. I have been obsessing over this cancer since I woke up from the colonoscopy and heard those dreadful words.....you have cancer. I eat, sleep, walk, talk and breathe cancer; I've dropped 14 pounds that I'm aware of; I'm sure from the stress that is taking me over. Even when I try to push positive thoughts in my mind, it's like the natural disaster that hit Japan; it just rushes over me, the "what if's" and "what next" and I barely feel like I'm alive anymore. I keep saying if I had only asked for the colonoscopy in 2009 during my 50th birthday, if I had only ate better, exercised more, got more rest, not let life's worries overwhelm me, if, if, if..... I'm running out of reasons why I think I ended up with this horrible thing that has totally changed my life as I knew it. I'm not going to lie; I hate this....I feel like some days when I wake up that I just can't take another minute of this. I mean for God's sake, I haven't even started my chemo yet and I just feel like I could lay down and give up. You're all right though...who knows how we got it or why. We have it and I guess we have no option other than to fight it. So I'll keep going down this road of unknowns and try to make the best of it that I possibly can. I have 3 girls that I love dearly and I am just not ready to leave them; not even close. It is what it is.

Pam

pscott1
Posts: 207
Joined: Jan 2011

I'm 1 day away from a liver biopsy to see if what the first Onc told me is true. She says my MRI that was done on 2/17, which they didn't do on 1/8 before the colonoscopy or after, but probably had time to do; shows that I have multiple lesions - 15, that it's definitely mets to my liver from the colon cancer, incurable, inoperable, radiation not an option, only chemo and maybe I might see another 4 years! I went for 2nd opinion to Siteman Cancer Center and my new Onc says that he doesn't see what they are seeing. He says spread should never be based off scans alone. So Wednesday I do the biopsy and find out the truth. I have been obsessing over this cancer since I woke up from the colonoscopy and heard those dreadful words.....you have cancer. I eat, sleep, walk, talk and breathe cancer; I've dropped 14 pounds that I'm aware of; I'm sure from the stress that is taking me over. Even when I try to push positive thoughts in my mind, it's like the natural disaster that hit Japan; it just rushes over me, the "what if's" and "what next" and I barely feel like I'm alive anymore. I keep saying if I had only asked for the colonoscopy in 2009 during my 50th birthday, if I had only ate better, exercised more, got more rest, not let life's worries overwhelm me, if, if, if..... I'm running out of reasons why I think I ended up with this horrible thing that has totally changed my life as I knew it. I'm not going to lie; I hate this....I feel like some days when I wake up that I just can't take another minute of this. I mean for God's sake, I haven't even started my chemo yet and I just feel like I could lay down and give up. You're all right though...who knows how we got it or why. We have it and I guess we have no option other than to fight it. So I'll keep going down this road of unknowns and try to make the best of it that I possibly can. I have 3 girls that I love dearly and I am just not ready to leave them; not even close. It is what it is.

Pam

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

Pam, I also ended up at siteman after the original diagnosis. I found an ONC closer (Dr. Popovic in Maryville, IL I am on the east side as they say) and have been very pleased with the results. I went through chemo in Maryville but all other aspects of my treatment where done at Barnes Hospital through the siteman center. I have nothing but good things to say about every specialist, surgeon, Doc, or nurse that I came into contact with. Considering where I was I am sure I owe that group of specialist and my Onc for saving my life. I understand how you feel, many of us do, and while I can give you know magic elixer or a specific game plan to help you deal with this I will offer you the following. It helped me not to look at to big of the picture or dwell on where I MIGHT end up. At this point you just dont know. Taking it day to day for me was easier and trying to keep my imagination in check helped. Dont go looking for trouble, or beat yourself up with the "what should I have done differently" it really serves no purpose. what is done is done and while it is easier said then done, just putting one foot in front of the other or even holding your own should be looked upon as a victory. I used to drive myself crazy trying to be upbeat and positive all the time, I couldnt do it, and then I chastized myself because I do believe a positive attitude is a benefit in dealing with this disease and by feeling depressed I was hurting my own cause. In time I learned to relax a bit its okay to doubt, to be depressed, or just be damn mad just dont get stuck there. I also have three girls and during the course of my adventure I have seen 5 new grandchildren enter into my life. Hold on to the fact that you are "just not ready to leave them, not even close" and draw your strength from the resolve that is so evident in that last sentence of yours. I am rooting for you Pam!

fair winds and following seas
Chris (greybeard)

SamsWife
Posts: 50
Joined: Sep 2007

Hi Gail -

I've not been on here before (I don't think) but I have visited the caregiver and surviving caregivers sites many times. I wanted to respond to your thoughts about your kids. My husband was diagnosed with stage IV colon cancer in July of 2007 and passed away last year, March 1, 2010. We were also told to have our kids (I have 4) get a colonoscopy 15 years prior to when my husband presented (I think you said yours said 10); he was 46 when he was diagnosed. I'm actually having my kids get a base line colonoscopy when they're 20 because of exactly what you're afraid of and have noticed. I read about quite a few people in their 20's who get colon cancer and I'm like you; I just thought, why wait? Also, my oldest daughter had an inflamed colon a couple of years ago (she's 22 now) and we just decided to get her checked - the docs don't know why her colon was inflamed; they said the usual answers: stress, a virus, etc. My husband always had digestive issues for as long as I knew him and my daughter does also - she reminds of him that way. Anyway, I talked with a gastro-int. doc and he said he thought it was a very good idea to just have them all checked at 20 and then we can go from there. We all know how important early diagnoses are. I don't know if you've ever heard of Lynch Syndrome but I've recently learned about it - you can read more about it on-line but basically it's a genetic predisposition to certain types of cancer. In order to be genetically tested for it the doc's look at three specific criteria and my kids fall within that criteria. The only benefit really of having the test is knowing whether or not you're predisposed to certain cancers and, therefore, should be tested earlier and more frequently than what is normally recommended for the general population. Good knowledge to have though - as we all know.

Good luck to you and God bless.
Tina

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

I too have no history of cancer of any form in my family, I was in good shape athletic and 42 years old when diagnosed. I have told my daughters (all in the mid to late 20's) not to wait for the test. I am in complete agreement why not test early. The history has been established and the earlier the detection the better the diagnosis, right!

Chris
greybeard

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

great post,

I also had roids for years and a less than regular system that I attributed to all the pizza, takeaway and chinese food I would eat. Obviously I had a poly as well, that seemed to thrive on my diet and lifestyle.

I like "what ifs" in moderation.

so,
what if we all live and make it. now thats a good "what if".
what if this curse does not come back and kill me.
we are all human and our lives are a fair bit more fragile than I realised before DX and all the reading.

I don't want to cause another diet war but a small friendly battle could be fun. I got chemo coming up in over a day so will have a bit more time and the dex keeps me up. so here goes.

looking at the slightly bigger picture my irreversible damage start when I become a fat lazy ******* making lots of money working for big greedy companies like CISCO and the BANKS. We worked 16 hour days and had chips, biscuits and soft drinks on tap all day and night. Often we worked 7 days straight and we got paid $1000 US a day to work weekend shifts when I spent my weekends fixing routing and switching problems on some of your biggest air craft carriers and destroyers. It was fun, but the pressure was immense and the diet disgusting. Possibly the unhealthiest life but adrenaline keeps you going for years.

I saw a i dietician back then and made some progress but fell off the health wagon and straight back into FAST FOOD like macdonalds.

Not being really healthy then.
Not having the resolve to stay healthy even about 14 years ago was clearly a mistake.

I also regret not having a colonoscopy earlier, but now feel that being a bit too precious. what about heart disease ( the biggest killer ) and all the other health joys our wonderful western lifestyle uniquely bestows upon us.

If have taken a little time to wallow in it, I have looked backwards and I felt it was time well spent for me to kind of process all the feelings and issues that this cancer has raised.

Particularly now I consider what diet and life style for myself in the recovery phase and for the kids and my wife.

On one hand the responsbility of my condition rests on my parents, government and society.

I was not raised the "that a healthy mind and body should be your top priority" , basically the primary message was the standard greed is good and you better start making as much money as possible as soon as you can.

the media and the government manipulate us easily, "like taking candy from a baby"
why else does BIG FAST FOOD make such HUGE PROFITS and why is childhood obesity a huge issue here in Australia and around the western world.

So I don't blame myself as I see my poor lifestyle reflecting the environment I was living in. The few healthy messages get overwelmed by all the other unhealthy messages we get in our modern lives.

My biggest priority is to raise my kids as healthy as possible in mind, body and spirit in their formative years.

yours in better dieting ( at least for today )
pete

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

This is a good post like all the others and we should have no "battles" against each other. Our battle should be against the monster we share. Let's just share our info to win in any way that we can manage for what works best with each of us.

Gail

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Hi Gail,

So I promise no more diet posts today off to sleep.

The little battle I foreshawoded was to be forte with ideas and arguments than personal.

its just I wokeup at 2am and cannot get back to sleep and I thought this post either help me get back to sleep or keep me up. I have just stirred the pot a little.

I agree completely "Let's just share our info to win in any way that we can manage for what works best with each of us."

Its just this diet stuff is really close to my heart. No punn intended. For the last few months I have gained a Kg or two each week. Every visit to the ONC, she says keep your weight under control or else. I am seeing her tomorrow and have skip breakfast hoping to have not gained anything. My ONC is cute, blonde and has a tough side. So I am wise to be a little apprehensive, she will probably smack me. My whole diet thing, is where most of my focus is at present with my treatment and its so frustrating the difference between hospital dieticians and naturopaths.

I will jump on the scales now. I wonder how much weight I can loose between now and 12noon, thats 8 hours. I am going to wear really lite weight clothes and thongs rather than shoes. And empty my pockets into my chemo carry bag. This should keep me in her good books. I might even get a walk in this morning.

hugs,
Pete

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Pete...I have gained 10 pounds since beggining of Dec! I was down almost 20 from diagnosis though so I guess I need some gain. But 10??? so fast????....I'm with you on wanting to watch that :)

Gail

coloCan
Posts: 1956
Joined: Oct 2009

do not follow in my buttsteps and to have a colonoscopy as early in life as possible just in case I've passed it along.....As I had already stopped tobacco and alcohol (tho not until after damage was done)and had been exercising for years until the tumor I didn't yet know about increasingly hindered my lifting, the only major area in my current life needing to be changed has to be my diet......I'm trying to abide by the current guidelines suggested by the parent .org of this site as well as those of the other .org and .gov sources of cancer info, such as aicr or nih as well as the various sites I've found in my readings.......I think I need to ramp up my exercising to workoff the excess pounds I've put around my midsection....(Pete, in my own way, I'm with you on eating/living healthier than we did before)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi steve,

are you a weight lifter ? I am planning to get into it.
I won 6 months gym membership and have been saving it for the winter here.
its good post steve and I just got a bit carried away with all the diet discussions I wanted to kind of explain my fat hogg background. I am with you as well in eating and living as long and as healthy as possible and I think they are related. And also blame is pointless. Acknowledging risk factors and being careful.

all the best Pete

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

...and others don't? I know mine didn't.

If tomorrow something shows up in my scan, I'm going to blame depression and divorce! lol

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Weight gain shows thatbyou are taking in more calories then you are burning. Meaning little or no excercise. I am not working now, but I must have burned a lot if calories at work! I am a bit over weight, my ONC knows my diet so he just said don't overdo the carbs, and to get off my butt, yes, he said that!

coloCan
Posts: 1956
Joined: Oct 2009

a tumble as i started watching too much TV (never into TV much except during Tx when too sick to do anything else)during snowy winter. I also need to be careful exercising with TV on; never do it watching Laurel&Hardy or anything else that might make you laugh as you can seriously hurt yourself ...

As for weights, my overriding concern now is: no injury to stoma therefore I only use bodyweight or dumbbells, no more barbells,tri or curling bars,etc as I feel safer dong DBs and bodyweight (no science behind this decision,just my feelings) with the objective being to get as strong as possible for whatever else might happen; no longer interested in size/def, tho that will/has returned to some extent...I'll never get back the strength I had as I no longer do real heavy stuff like deadlifts and bentover rows,nor do I attempt personal "records"......My lungs are also declining abit tho last breathing test indicated no noticeable further deterioration than what my COPD had already done....(For a while I thought tumor was causing recent weight gain til I saw onc past Fri so You're right,Ms Nana,my intake is exceeding the calories burnt moving around)So, with that as my incentive, its time to get off my *** and play with my dumbbells........steve

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Were it so simple.... weight gain = more calories than you are burning.

Do you know how many people have tried laying that guilt trip on me over the years? I could play the broken record... and they all sound so self-righteous like the answer is simple. Stop eating so many calories and burn off those that you do eat... simple.

Such bs abounds in our society.

For example: You all know how horribly ill I was with the first round of Irinotecan chemo... such a bad reaction that others hadn't seemed to experience. I was literally bed ridden for 14 days... did not have the strength to even walk around the apartment. I could not keep anything down... forget food or solids, but I couldn't even keep broth or water down. I was violently sick to my stomach, bringing up fluids after fluids after fluids. Likewise, severe diarrhea where there was no waste, it was just fluid/water. Major intestinal cramping/spasms that no amount of medication could get under control. I KNEW I was getting seriously dehydrated when my legs shrunk to the point where I did not recognize them. Yes, I should have gone to the hospital to be rehydrated but I was in too much pain and too sick... there is no way I could have sat around in the ER until I got looked after... just too darn sick. 12 days without food and very little fluid (although I did try, if for no other reason, so that I could have something to throw up). It would not have surprised me in the least to have lost 20 lbs in that 2 weeks.... obviously mostly all fluid/water weight, but still. No calories going in for 2 weeks and losing that much fluid should equal a sufficient weight loss. Guess what? I gained 8 lbs. GAINED 8 POUNDS!!

So that "oh, you just need to take in less calories to lose weight" is so not necessarily true or accurate, but the gullible love to hang on to stuff like that. After all, if you read it on the internet, it must be true. And anyone trying to point out that this is not accurate information in all cases and it doesn't apply to every scenerio or every person... that's when you get those coming out in droves to argue and tell you you are wrong.

So, sorry if I don't join in on the "If you really want to lose weight, then watch your diet, watch your calories" because that is bogus information and I am actual proof that this is not the case for everyone.

Cheryl

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Good start on this topic, Steve! I find it interesting that people blame themselves, but then, we all come from different circumstances and backgrounds so I guess our perspectives are all going to be different.

I am not a goody-two shoes by any stretch of the imagination, but I have never been a drinker. I'm trying desperately to appreciate wine , because I love the idea of going out with a friend for a chat over a glass of wine. Or going out for dinner and having a glass of wine with dinner... but I am sooo not knowledgeable about wines, it will be a very slow process with me. I just plain have never liked the taste of alcohol, so any alcoholic drinks I have, they have to be disguised in fancy drinks so I can't taste the alcohol... sort of defeats the purpose, no?

My diet/lifestyle/environment was the typical 50s/60s high carb, make the food dollar stretch. But it wasn't just our family... that WAS the diet back then and no one thought anything of it. My father hated anything that resembled a fruit/veggie... so my mother had a heck of a time trying to get us to eat them. I mean, if Dad didn't have to eat them, why did we? He is now 86 years old, healthy as a horse, has all his faculties together, self-taught himself everything he needs to use on the internet (does his stock trading, etc. on his computer now)... and basically has not eaten a fruit or vegetable in his life. Doesn't make sense, does it?

As for a colonoscopy... when they did find my tumour (I was 52 years old), they said that the tumour was at least 10 years old. So had I had a colonoscopy in my early 40s, we would have found it at the polyp stage, snipped it out and I would be none the wiser of what would have happened had I not had the colonoscopy. But in my 40s, I had never even heard the term "colonoscopy". How can I blame myself for not having had one earlier when I didn't even know they existed. The first time I heard the term was when I was 50 and a co-worker was taking the day off because he was getting one. I asked him what it was and why the heck he was getting one? He said that his family had a history of polyps so it was more a preventative thing. Well, it was news to me because this was a procedure I had never heard about... and since I had no sign of pain or discomfort, it never dawned on me to ask my doctor if I should get one.

When they did find the tumour... which was large, had perforated the intestinal wall and had been growing for at least 10 years... I was shocked. How come there had been no signs it was there before we found it? Fast forward until after the recovery period from the surgery, my surgeon then wanted to do a colonoscopy to make sure that there were no other polyps/growths. This was my first colonoscopy... AFTER the surgical removal of the malignant tumour. The colonoscopy showed everything totally clean. Not even any little benign polyps. I was unlucky to have had ONE polyp that left unattended, grew and grew and became malignant. So my Stage IV cancer is all based on one rogue polyp that didn't get nipped early in it's growth period because I had no idea what a colonoscopy was and I was under 50 so no one suggested going for a colonoscopy just for the heck of it. And no, there is no history of colon cancer in my family.

Call it bad luck, but I just can't blame myself for not doing something I knew nothing about. I can't blame diet/lifestyle because I happen to have one rogue polyp that was left unattended because I was not "old enough" to get the "Have a colonoscopy once you hit 50". One rogue polyp has changed my life, turned my world upside down. I can blame diet for a lot of things (weight gain, not being able to lose weight), I can blame lifestyle for laziness, lack of exercise, being way too content so not having to suffer to get a roof over my head or food on the table. I feel I live a very rich life even though I am not wealthy (in $$$)... but I am so wealthy in friends, support and being able to do all the things I love to do and able to retire early so I CAN do all the things I love to do.

But do I blame myself because I didn't catch that rogue polyp? No... I didn't even know what a polyp was, so how could I have been on the lookout for it? And I seriously can not say that my diet (which was high in carbs) was responsible for creating ONE LOWLY polyp that happened to turn malignant ;)

Cheryl

ketziah35
Posts: 1154
Joined: Jun 2010

As I read this, I pushed away from the corn bread and fried chicken I have prepared to eat. It reminds me that I have to work on my weight before I follow my mother's cancer plight and parents' diabetes.

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

When I was buying a business long ago, my father and my partner kept saying "Aren't you scared, you are risking everything by doing this" I used to tell them that "I have no time to think about how I am going to fail, I only have time to think about how I am going to make this business succeed".

This is how I try to think about things in life. When I start to think "what if", I tell myself that I have plenty of things that I need to do, that will affect the quality of my life now, so I need to focus on those things instead. I tell myself thinking of those things is a waste of my time. (Please do not think that I am saying that this is the only way to think, it is of course not, it is just my way of kicking my own butt, so I don't let myself become depressed)

You see I have bipolar disease, and if I let my brain run away with negative thoughts, I get majorly depressed, and then I have trouble functioning. Finding out I had cancer, actually snapped me out of a deep depression. I became so worried/obsessed about my wife and cats, that other people told me to stop worrying about them, and worry more about myself, but that is just not in my nature. I am the breadwinner, and without me, things will be harder for them financially, and I am the emotionally stronger one too.

Please don't blame yourself for your condition, let that anger drive towards things that will benefit you and your family. Stressing yourself out, is just adding fuel to the flames.

PS ColoCan I love your very informative posts. I always look forward to them

Sandy

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

I thought I was being good.  I had my colonoscopy six months shy of my 50th birthday, and all came up clean.  One year and two months later I was back at the GI with blood in my stool.  The PA said that since my last test was clean, there was no way that this was cancer, and my insurance would probably not pay for another colonoscopy so soon.  She then said I probably had an internal hemorrhoid.

So, no treatment for another year, then the pain started.  GP said hemorrhoids.  When it was getting hard to bear he sent me to a surgeon.  He took a real good look (whatever he stuck in there, it felt very large) and recommended Desitin.

In January of '10 I had a fever and groin pain.  This time the GP thought it was a hernia.  In-between seeing him and the hernia doc my inguenal lymph node blew up like a balloon.  So now it was an infection.

Four rounds of antibiotics later, off for a CT. That was the last week of February.  No calls and a busy month for me, so it was three weeks later when I threw my back and went back in.  Asked about the CT.  The GP had to leave the room to get it, and when he came back he told me to cancel whatever plans I had and get a colonoscopy.

So, even doing everything right, the outcome can be bad.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

blake,

I did not know your dx background before.

Our insurance's are so different. I appreciate mine more after hearing your story.

I had blood one day, GP the next.

Insisted on colonoscopy, GP relented after some pushing on my side.

six days later officially joined the semi colons.

what a difference between countries and insurances, and I know you US guys have many strong points over us in treatments. all our systems have pluses and minuses.

at least if we are aware of them we can manage the issues as well as we can.

it just sux when you see the difference with people you care about.

sorry you got such a slow DX. I know of a few of these types of cockups. My friends sister inlaw died at 33, she pestered her doctors for 18 months about pain down below, she only survived 3 months after dx and left 2 kids. In someways our medical systems have lots of room for improvement.

I believe the discussions we have here, helps us be the best patients we can be, certainly more informed and possibly more demanding. To be honest I think that why we have no effective real life bowel cancer support groups around here. Just my opinion.

Pete

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

You can't wallow in what ifs. I know that I ignored symptoms and ended up having colon cancer. It was kind of strange that I actually had symptoms, because I was diagnosed at Stage 1. But it took sort of a 2 x 4 to get me to have myself checked. I had "diarrhea" and looked in the toilet and saw a bowl of blood. YIKES!

We can't do anything about the past, but we sure can work on the future. My way of doing that is to work with Relay For Life and try to spread the word about having colonoscopies. And I am trying (not really well sometimes) to exercise and lose weight to take care of myself.

I was lucky in that my cancer was found early, but I been left with fear and worry, not to mention a chronic pain condition that makes me hurt every day of my life.

*Hugs*
Gail

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I had a colonoscopy 5 years before my DX and they didn't find anything, ONC thinks they missed it. So here I am stage !V. My primary care doctor kept telling me it was gas and I kept arguing finally got my referral for another colonoscopy 3 months later. I should have listened to my sister and gone to the emergency room, maybe it wouldn't of made it to my liver.

But, oh well!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

The Dalai Lama, when asked what surprised him most about humanity, answered "Man. Because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived."

Cheryl

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi cheryl,

what a lovelly quote. that made my afternooon.

cheers,

Pete

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Leave it to the 'Lama to diagnose my condition - I could not have worded this any better.

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

That is so true!

AnneCan
Posts: 3692
Joined: Oct 2009

(after much mis-diagnosis) I was shocked. I said to the surgeon who diagnosed me,"I have never smoked one cigarette, had any illegal drugs,I hardly drink alcohol, I have really tried to live a good life". He said to me "Anne, you are just unlucky + there are very bad people who will never get cancer. I remind mysellf of his words whenever I start to go down the blame road. Other words that have stuck to me were from the surgeon who was going to do by resection. He said, "keep telling yourself failure is not an option". I do. A social worker I met said they are often surprised at who the long term survivors are. I want to surprise everyone. It is too easy to blame ourselves, our diet, etc. but no-one knows for sure. I actually had a double barium contrast which purpose was to detect cancer in 2005. Results were clean, except for diverticulosis + hemmorhoids. When I visited my family doctor several times before my diagnosis, she told me to eat more metamucil + it probably was hemmoroids. She told me she could not "justify sending me for a colonoscopy, given I had the clean barium enema 3 1/2 years prior. Try to look forward, not back.

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herdizziness
Posts: 3642
Joined: Apr 2010

I gave up beating myself over what signs I missed a while back. Sure, it comes to mind, the should of's, but I quit whipping myself over it.
I'm just going for today, for tomorrow, for next year, screw yesterday.
Winter Marie

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CherylHutch
Posts: 1399
Joined: Apr 2007

>> I'm just going for today, for tomorrow, for next year, screw yesterday.

Oh! She said screw!!!

Winter's being a potty-mouth!! LOL!!!

Cheryl

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herdizziness
Posts: 3642
Joined: Apr 2010

I forgot to watch what I said!!! LMAO

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Winter Marie, that's the kind of thinking I need to keep around.

Gail

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KathiM
Posts: 8077
Joined: Aug 2005

not putting ME at the top of my own 'list of important people in my life'!!!!

And, old habits are hard to break....I am constantly battling that very thing....(*smile* I'm number 1, I'm number 1...*smile*)

Knuffels, Kathi

luvmum
Posts: 457
Joined: Dec 2010

I know I shouldn't respond your post with this but I want to let you know, I share the same feeling... 'what ifs'...

I hate myself and I can never stop blaming myself, no matter how many times I talk to the father, no matter how many times I pray for forgiveness!

If I could have being more persistence pushing my husband to arrange colonscopy for my mum a few years ago, if I could have done it myself earlier without relying on my husband to do it for me... if I take my mum's diarrhea and stomach pain more seriously.... all these ifs will never disappear!

When I see my mum is suffering from chemo, and will suffer from the liver resection in 2 weeks time, I just cannot forgive myself!

Dora

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plh4gail
Posts: 1238
Joined: Oct 2010

Dora, You need to make that the last time you blame yourself for not catching your Moms cancer earlier. Just be there for her in the right now and be the wonderful loving daughter that you are! As you read in all of the above, and if you didn't read them, go back and read all of the above posts. We have all been in your shoes and hopefully learned from it. Now is the time to be strong and active in her health care, now that you know what you're dealing with. You can do it girlfriend!! :):):)

Love and hugs, Gail

luvmum
Posts: 457
Joined: Dec 2010

Dear Gail,

I know, I should stop this ... sometimes when I'm feeling down and when I see my mum is feeling bad, I will blame myself again... but I'm really trying very hard to move forward and not to look back. I've finally read all the threads here and I really admire all of you. Thinking and acting positively, you are all strong fighters. I really wish I could have half of your strength.

Gail, thank you so much for your kind words and encouragements. I will not give up and will still try my very best to take good care of my mum so she can recover faster, or at least to make her feel more comfortable during this hard time.

Please take good care!
Lots of love from Dora

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greybeard64
Posts: 254
Joined: Mar 2010

Gail said it best and I agree. I want to add something though. My wife went through the same scenario. She never suspected what was going on and she is an outstanding nurse. She beat herself up for awhile but has accepted the fact that it's also not her fault. now she jokes that "tums" ( a over the counter med for stomach discomfort) will not cure cancer. She suggested these when my symptoms first started.

I dont know what your profession or background is but lets face it how many people went to doctors, complaining about symptoms that after the fact seemed to "obviously" point to cancer and they still didnt find out until much later they had it. If people in the medical field can miss it, why should you expect more from yourself? Sometimes it doesnt seem to matter what we did or didnt do...."S#$t just happens" as they say.

Bless you for your care and compassion for your mother, she is a lucky lady to have you, and you are obviously a attentive caregiver. In my book, that makes you an angel.

Chris

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I went for a routine colonascopy. No symptoms, no pain, I was 51 yrs old and had already waited a year too long. Doctor removed a large polyp 11 inches into my colon. Started at the very end of the colon and worked his way out. I was sound asleep until he burnt out that polyp woke my right up. after he removed the polyp exam was over he said everything else was clean "NOT" he never went back in to do the other 11 inches. (from the polyp to the anal canal) When I write this out my anger starts to get the best of me. anyhow 3 months later I had blood in my stool but didnt think anything but hemroids since he was just in there. I waited another 4 months as it got worse i got scared and my primary told me to schedule another scope. went to the same doctor this time woke up with a cancer diagnosis in the rectum 2cm tumor. I wanted to seriously hurt this guy and i think he knew it, he was all apologies and admitted to missing it on the first go round.
Now I spent time being mad at him and then turned the anger inward. I hadnt done a very good job of taking care of my insides. I liftrd weights and looked good on the outside but drank too much and ate all the wrong foods. I had quit smoking when my son was born and when he was 16 I was going through a divorce i picked up the butts again.

So when it comes right down to it I did it myself. could the doctor have saved me from having a permanent colostomy?? Maybe we'll never know, but now that I'm almost done with my mop-up chemo one year later, it's all water under the bridge. Most importantly now is keeping my 2 sons 21 and 18 healthy and i'm not off to a good start. their diet is terrible even though they played sports all of their lives.

This is a great thread good to get this stuff out and good to hear everyones point of view with regard to diagnosis and diet. I am eating alot healthier now and even juicing once a day. Good health to all!!! Tom

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plh4gail
Posts: 1238
Joined: Oct 2010

Tom, you didn NOT do this to yourself. It happened. You know... a lot of these posts include that we had symptoms that our Dr's as well as us kind of brushed off or misdiagnosed or goofed in some way. My story as well, although I didn't tell mine on my earlier post.

I just wanted to tell you buddy to stop with the self blame please. :) It's not true, and I'm in the same situation with my kids. I want them to get a colonoscopy now to have a starting point. And start watching and thinking about their diet. Now I'm not sayin they have to turn the cheek to burgers and beer forever ....just sayin...think about stuff....LOL....or they just might be turning the OTHER cheek if you know what I mean :)

Love and hugs to you, Gail

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pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

try and find a healthy restaurant.
I have the same gaol to bring up health aware kids.
your dx story sux as well, so sorry mate!!!!!!!!!!!!!!!!

lets just say LOTS OF ROOM FOR IMPROVEMENT in the medical system and how we use it.

at least people who read this board are informed of the type, size and frequency of the COCKUPS. all around the world. its not surprising doctors are clearly faliable and are human. In life threatening issues a second and third opinion buys certainy, treatment options. I even had a **** scan at one hospital. If i did not have a 2nd opinion my tumour would have been treated as a t3 not the t4 it was. glad I avoided that.

tell yoiur boys about thhe fitest marathon jogger who dropped dead of a heart attack. his arteries were clogged.

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coloCan
Posts: 1956
Joined: Oct 2009

more comprehensive and prognostic ways of detecting CRC other than the pathology analysis that generally follows the snipping of tissue during the colonoscopy procedure,most revolving around blood tests and genetic/biologic markers which may also indicate potential likelihood of mets in lungs/liver in the future......

Again, guidelines concerning diet, nutrition , exercise and cancer, can be found at the ACS, AICR, NCI,and other cancer.orgs and .govs as well as the CRC-specific orgs (fightcolorectalcancer.org, formerly 3C)web sites and most provide free booklets, info.etc

One good book to read has been cited here before, "Anticancer: A New Way of Life" by Dr Servan-Schreiber, specifically the shiny,color pages in the middle,- page 9 of these for CRC- between pages 178-179 (if you don't want to read it all)

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lisa42
Posts: 3661
Joined: Jul 2008

Yes, I agree that "Anticancer: A New Way of Life" is a good must-read book for everyone! I know many people here would rather not think about the nutrition aspect of cancer & as I've said before, I don't believe that diet is what causes everyone's cancer. I do believe that it is the case for some, but for others it may have been stress, family genetics, chemical exposure, metal toxicity or "who knows what". Even with chemical exposure and metal toxicity, some people get cancer and others do not. Everyone's body has a different level of tolerance and sensitivity. I guess this could explain why someone who eats horribly, never exercises, smokes, is couch potato, etc. might end up living a long life and why someone who lives a very healthy lifestyle still might end up with cancer.
I guess with not knowing for sure what causes the cancer, my thoughts are that I want to try to do all I can and minimize the possiblilities of cancer. Since I already have stage IV cancer (as my husband likes to tell me "the cat is already out of the bag- so aren't your efforts of changing how you eat and taking all these herbs kind of pointless now?") No way, I say- I don't know if I can change my immune systems's ability to fight it off or at least keep it from spreading further, but I'm not going down without trying my best to do what I can to get rid of the beast! Of course, I'm still doing chemo and doing what my oncologist recommends, but for me that doesn't feel like enough (especially since after 3-1/2 years of chemo, I still have cancer in my liver and lungs) I feel desperate, I guess, so maybe prompted more than some others might feel, but desperate people do desperate things, and I want to live!!
Anyhow, the anticancer book mentioned does mostly focus on diet, but also talks about making lifestyle changes. Change is hard & I have resisted doing it for the past 3-1/2 years & now I'm kicking myself for not making changes sooner. Can't change what has already transpired, so I'm not going to beat myself up or feel guilty about what I've done or not done... I'm just going to move forward and do what I can- if I still succumb to cancer, well I'll get satisfaction now that no one will ever be able to say I didn't go down fighting till the end!
To... LIFE!!

Lisa :)

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pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

did you see my post about master and commander. probably not, no onme commented but it was from reading anticancer.

I am looking or will make an online copy the others to read ( assuming they order the book if they like it )

we should have sticky posts like on other sites, where we could have a selected reading list. just an idea. surviving survival and anticancer would be on my list.

Pete

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Oh, how I wish I had acted sooner, myself. Even after I put it off so long myself, my doctor still acted like I wasn't a cancer risk (with no risk factors or family history at all of cancer & I was "too young" supposedly at "just" 40). So, even after I acted and went to the doctor, it was still another 5 months before I had a colonoscopy and was diagnosed as stage IV rectal cancer, with it already quite profusedly spread throughout my liver and both lungs.
But, as we say too- it's really no use bemoaning what has transpired and what cannot be changed. The only way others can benefit from my loss now is that I can spread the word to others to act on any/all symptoms and get checked out! My own brother still won't act, even 3-1/2 years after my stage IV diagnosis he still hasn't ever gone to the doctor to request a colonoscopy. His angle, he claims, is that his insurance is so bad that it pays for almost nothing so even if they found something, he could never pay for any treatment. I told him how there are ways he could be helped, especially as he is quite low income, but he won't listen. He is so concerned about me, but still won't act for himself. It really does concern me. Fortunately, my cancer genetics were tested and I was found to not have the family hereditary type, but I still know that he needs to be checked soon, as he has now just turned 40.

The thing that makes me the most frustrated with my whole situation & I've heard it from so many other people is that the doctor and nurse practitioner that I first saw blew it off & decided to not be proactive and to not take the "better safe than sorry" attitude. I definitely had a lot of blood, so my insurance paying for my colonoscopy was no problem- that wasn't the reason. I really think the doctor and nurse were just ignorant that colorectal cancer can really present itself in someone younger than their standard age of 50 to do colonoscopies & really just thought there was no reason other than hemmorhoids for my bleeding.
Now, in retrospect, I know that my many, many years of having digestive upset was due to my being gluten intolerant, which in turn caused irritable bowel. It is my hunch that because my colon and rectum were always irritated, that the polyp formed and then grew into a tumor and that is probably what caused my cancer. I had never really complained to my doctor until that point in time about my digestive problems. I had always been that way and my mom was that way too. Being quite ignorant about irritable bowel, colitis, etc., I just thought that was the way I was wired and that it was "normal" for me. I had years of diarrhea, which is why I really wasn't alerted, because there really wasn't a big change in my bowel function- they were functioning the way they had been for years, which was badly, but that was my normal.
I think word is getting out a lot more in the past couple of years to doctors- I know my family doctor has since said that she has seen several cases of colorectal cancer & in several people in their 30's', 40's, even a couple in their 20's. We know this to be true on the CSN board here- I would say most of us are under 50. I do wonder if we on the CSN board are a true representative of ages associated with this cancer- perhaps the older people mostly just aren't ones to go on an internet support group. Heck, my own mother is 67 and she just finally purchased a computer, so I know she would never go on a board like CSN if she were ever diagnosed with cancer. Hmmm...
Makes me think a lot...
But thinking doesn't help unless it is put into action- so now I'm a spokesperson everywhere I go for getting tested and checked out if there are ANY signs or possible symptoms. Better safe than sorry is my motto! Now if only my own brother would listen...

Hugs to all,
Lisa

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pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

only nit picking but thinking and the contents of these posts are tremendously benefical to us all.

I believe our "thinking really helps" then posting a reply "that really helps more"
i am comparing and contrasting thoughts, feelings, knowledge, experiences. dammit we are colorectal experts in many mnay ways.

of course actions help even more. but it all starts with thinking and caring.

Pete

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Sundanceh
Posts: 4408
Joined: Jun 2009

....made one about a year ago about this time. I cancelled my surgeries and scans for financial considerations - stayed working on my job so I could get my name on a project that I'd worked on - all the while the new tumor grew and grew big.

Angel "nudged me gently" and made me see the err of my ways. I try not to think about it too much - the last 10 months has been the fight and there's neve any time to wallow when you're up to your elbows in treatments.

We just hope that we become wise enough to not make the same mistakes twice - that's the journey, that's the enlightenment.

-Craig

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KathiM
Posts: 8077
Joined: Aug 2005

I'm still learning....looking to change my life once again....reached an impass with my beau...After 20 years, we are talking about splitting up....I feel lighter!

Hugs, Kathi

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pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

sorry to hear about possible split.

we grow and change alot from our extreme life experience cnacer, so sometimes our spouses get disconnected. its sad when this happens. I hope your happiness is maximised which ever route the relationship goes.

if you get a chance read "surviving survival" its awesome.

Pete

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