Miserable Week and Not Happy at All

JanJan63

Okay, where do I start. First, I got a partial blockage on Sunday. This one really knocked me on my butt so I've been either in bed or on the couch for the past 6 days. The chills, abdominal pain, nausea, incredible weakness, severe dehydration, the whole gamut. So weak the first day I wet my pants 3 times because I couldn't make it to the bathroom in time. Two days at the hospital getting IV fluids. I finally feel today like I've turned the corner today but it'll be a couple of days until I feel half normal.

My boss let the other woman I work with go the week before so they had to get along without me and with no back up person so I've been feeling guilty as well for not being there.

I saw my surgeon on Thursday for my regular 6 month anal probe. For some reason whenever I get the partial blockages it feels like the inside of my colon gets swollen and irritated which is apparently true because the scope was very painful this time.

Had a good talk with my surgeon and I'm not happy with what he told me. It turns out that the radiation oncologist has been les than honest with me. He said that the radiation blasted the lung mets and was a 'great success'. And that they seem to be growing but they're not sure because it's such a tiny amount they can't really tell. My surgeon said they are growing, there's no doubt about it. It's a very small amount but they are growing and telling me that they're not sure if they are is wrong. He can't understand why they're just putting me off until the next CT scan. He said I'm young and healthy and there's no reason to put off any treatment.

I have a new oncologist that I meet this Tuesday morning and she's probably going to have to come up with a chemo I can tolerate to deal with the growth.

When I started thinking about it I think I know what's happening here. The radiation guy is hoping that his radiation protocal will be the treatment of the future. He needs good stats. If he can say something like 'patient had no appreciable growth within one year of treatment' or that I didn't require further treatment within a year, then his numbers look good. It'll be a year in February so he probably figured he could leave it until then. Or maybe 6 months. Who knows.

The point is, after having had my onc suggest I take aspirins when I'd had three freaking blood clots and not doing anything further or having me checked to see if I'm prone to clots, and then me almost dying, and now this guy putting me off when something should have been dealt with months ago, I feel like the people who I've placed my life in their hands have dropped the ball in a big way. The only reason I'm here today is because of several fortuitous things coming together and saving my life when I got the lung blood clot, and now I'd have been left until who knows when before I got treated. I'm so effing angry right now I could spit. I'm starting to wish I'd sued Miss Well Just Take Adult Aspirin for almost killing me. And now this clown? Funny, when my brother was dying of cancer last year this guy was assigned to him and my brother asked to see someone different because he didn't like him. I feel like the only one I can count on, the only one who tells it like it is and no bs, is my surgeon. His job is just supposed to be monitoring my colon now that he's done his job. Which, by the way is healthy and happy. He said he's going to follow up with my new onc and make sure she's doing something. I shouldn't have to have my surgeon making sure the rest of my team does their job.

So, I've been miserably sick all week and now I'm angry and depressed. I feel like lashing out at these two and making sure they think twice before doing this to someone else. We're cancer patients, we aren't oncologists. We don't know everything about it and we have to count on the people who are the experts to take care of us. When we can't even do that, what have we got left? Dammit, I'm SO freaking angry. For all of us. I doubt I'm the only one that's run into crap like this.

Jan  

Trubrit

Oh Jan!

I am so sad to read your post. I can feel your anger and hurt, and it makes me hurt inside.

I am so sorry to hear the news about the lung mets. Why can't people do their jobs without putting their own agendas first? I do so hope that you get something sorted and started soon. I pray that your new Onc will be as wonderful as your surgeon; and that you kick your rad onc to the curb. 

I am glad you are able to let go your anger here, and I hope it made you feel a little better. Try TRY not to let it stress you too much. Deep breath and exhale it out of you. You don't need to be told that stress and anger churn you up inside, and right now, you need good vibes running through you. 

You're in my thoughts and prayers. 

Cyber hugs!

SUE

UncleBuddy

Hi Jan

I'm sorry you're dealing with this BS. I don't understand why these doctors aren't working their butts off trying to help their patients. The selfishness is unbelievable. I am still reeling from my brother's death, questioning if there was more I could have done for him. Looking back, I think his onc dropped the ball. I think she gave up on him and then wrote him off. She didn't even let the rest of the team know he passed away. His nurses were top notch, they really cared about him. Most of them were at his wake crying along with me. His doctor never showed. I wonder all the time if I should have done more. Get that second opinion. Take care of yourself and fight. 

JanJan63

Thanks for the support, both

Thanks for the support, both of you! I meet my new onc tomorrow morning. I'm scared to try chemo again after what happened last time but I need to get rid of whatever rogue cells there are floating around and get the mets stopped. I hate chemo but I'm not willing to take my chances on diet or simple lifestyle changes alone.

I'm finally back at work tomorrow after a week of dealing with the blockage. I think I'm going to have to sit down with my boss and have a heart to heart about missing work in the future and what we need to do about it. Infuriating. One of the things that makes me feel more normal is being able to work. And the cancer and then blood clot has cost us so much money in missed wages it'll be years before we get sorted out again. I don't need to be missing work and getting short paycheques every couple of months. It's hard enough already. So I lost my business because of the cancer, then wasn't able to get any kind of benefits because of owning my own business, now I'm having trouble working the 28 hours a week I do work. Getting really sick and tired of this crap. 

Jan

Bellen

Partisl blockage

Hi Jan - First of all, good luck with your new Oncologist appt.  It's so important to believe that your Oncologist has your best interests with your treatment plan.  I am travelling 2 hrs each way to have my treatment because I got a better feeling with that Cancer Center and my Oncologist.  So wishing you all the best.  You have been feeling awful - I have suffered with partial blockages for past 5 yrs.  I have a stricture in my small intestine (caused from pelvic radiation yrs ago) which causes painful spasms that last for hrs.  Had a mild one the other day (4 days now getting over it) -  think it was because my first chemo caused diarrhea, then quickly caused constipation. For past 5 yrs I have taken Miralax every day to have bowel movement because my diet is low residue - no fiber.  As a result, I suffer chronic constipation.  Now that I have been diagnosed with CRC, I probably have another area that is narrowed, my stools are very narrow, so I have a double whammy that causes abd pain.  My GP has always said it is very important for me to have a bm every day (keep things moving) and to follow this low residue diet.  It helps, but does not prevent partial blockages. I know full well the side effects you suffer afterwards - I get the same - wipes me out for days, and intestinal and abdominal area takes forever to feel better. Now that I have CRC as well, I may always have this awful pain.  I am so sorry that you have to go through this - wishing you the best. Let us know what this new Oncologist says.  

John23

JanJan63 said:

Thanks for the support, both

Thanks for the support, both of you! I meet my new onc tomorrow morning. I'm scared to try chemo again after what happened last time but I need to get rid of whatever rogue cells there are floating around and get the mets stopped. I hate chemo but I'm not willing to take my chances on diet or simple lifestyle changes alone.

I'm finally back at work tomorrow after a week of dealing with the blockage. I think I'm going to have to sit down with my boss and have a heart to heart about missing work in the future and what we need to do about it. Infuriating. One of the things that makes me feel more normal is being able to work. And the cancer and then blood clot has cost us so much money in missed wages it'll be years before we get sorted out again. I don't need to be missing work and getting short paycheques every couple of months. It's hard enough already. So I lost my business because of the cancer, then wasn't able to get any kind of benefits because of owning my own business, now I'm having trouble working the 28 hours a week I do work. Getting really sick and tired of this crap. 

Jan

Fear and pain...

Re:
"I'm scared to try chemo again after what happened last time but I need to get rid of whatever rogue cells there are floating around and get the mets stopped. I hate chemo but I'm not willing to take my chances on diet or simple lifestyle changes alone."

We all make our choices Jan...

Chemo was not designed, nor can it target, "single cells". That's the major problem with our present care, there is no means of accurately targeting single cancer cells. The only thing that can target a single cell of any type, is our immune system. The notion that they can provide Chemo to "clean up" stray cancer cells has been debunked and refuted by an overwhelming amount of leading Oncologists. The best "odds" given for any advantage of "clean-up" therapy is less than 2%.

But we still have to do what our intuition; our sense of self-survival, tells us to.

The biggest problem of a cancer diagnosis is the fear it manages to instill. It is extremely difficult not to allow fear to direct us, but our inner senses should be noticed and listened to.

And no matter what we do, no matter if it's chemo, radiation, herbs, TCM, or any other modality, cancer can reoccur and most often does for the majority of us. My surgeon has assured me of that; he sees it all daily.

Don't allow fear to steer you Jan, there are many ways to fight cancer without being subjected to the debilitating side effects of "conventional" therapy.

Best hopes and wishes for you,

John

 

dancer2

Hi Jan..........have read

Hi Jan..........have read lots of your posts and thought you had it in the bag so to speak.........and having read so much on the subject i have come to the conclusion that we more than likely ( if metastised) that we need systemic chemo and at the same time try with our diet and exercise to keep our immune system  up.............I have been told by my surgeon who did took the tumor out of my sigmoid and that it had spread to my liver ( one spot) that i was stage 1V of course....after not liking the first oncologist's  protocol which left me without any treatment twice for three months i went back to my surgeon who basically told me " it's in your blood,  you need systemic chemo" and she referred me to my new oncologist who said the very same thing.....she also mentioned that there were a lot of good chemo agents o ut there that could just 'melt them away'........now I understood, she wasn't telling me that would happen to me exactly, because they can't, but she sees it all the time and i met a few in her office that have been doing this on and off for over ten years.........that is the problem when cancer metastasises, it will almost always be in your blood ready to attach somewhere.........therefore, scans will always be in ones future......i get it, don't like it, would like to say f--k it and go about my business.............and if it had only stayed in my colon that is probably what i would have done, but that was not the case............so i think they now are going about seeing it as a 'chronic' issue..........til you drop i guess..........like a lot of chronic bad illnesses..........but i also think that we often should do what our 'guts' tell us.........like John23 ...........he went a totally different route.........it worked for him, and that is a wonderful thing, but one  has to be prepared to be into it all the way i presume.............the diet, the herbs, the whatever it all entails......and it's a totally different mindset, and one i would think the homework was done, the talks with known experts, and then of course the pure trust in it all..........I simplly make a nuisance out of myself by asking so many questions i am sure they ( docs) would like to tell me to take a hike.........but that is me......have no problem asking anything..........and i think really good docs have no problem with that, simply because they can answer the questions.......trust your instincts.  You have been very strong and an inspiration to me.

Bellen

Cancer and the battle

Hello all - I also ask a million questions - I have a book full already. Just find that, when I have my appt, if I don't write it on a list, I forget to ask, and it is not easy to get in touch with Onco in between.  Cancer center hrs are 8:30-4 and closed weekends - don't understand this, as cancer and cancer treatment side effects don't disappear - in fact the hrs they are closed always seem to be when side effects are at their worst.  Only other option is ER - when you're ill, weak - sitting in an ER is the worst thought.  Will never understand when cancer is such a serious disease and so much money goes into cancer care and research - find I'm already feeling that I often am "all alone" on this journey, and trying to figure out how to treat myself.  This is why a site like this, and all the members who respond are so important for all of us.  I also can't imagine all the effort and knowledge needed to do something on an alternative level - I am exhausted from everything already and have only had one chemo treatment - took 3 mos of tests, etc and way too much anxious waiting.  Jan, I thought you mentioned that you are Canadian. I am as well - from Ontario.  I had cancer 11 yrs ago and now I have new CRC with liver mets. Had a colonoscopy 2 yrs ago - I thought polyps took 10 yrs to possibly turn cancerous. My Onco said I had done "everything right", in terms of being proactive, so just goes to show you.... I sincerely hope you are feeling better and in better spirits.  I know full well the awful effects of partial blockages and how it really gets one down.  Wishing you only the best, 

JanJan63

dancer2 said:

Hi Jan..........have read

Hi Jan..........have read lots of your posts and thought you had it in the bag so to speak.........and having read so much on the subject i have come to the conclusion that we more than likely ( if metastised) that we need systemic chemo and at the same time try with our diet and exercise to keep our immune system  up.............I have been told by my surgeon who did took the tumor out of my sigmoid and that it had spread to my liver ( one spot) that i was stage 1V of course....after not liking the first oncologist's  protocol which left me without any treatment twice for three months i went back to my surgeon who basically told me " it's in your blood,  you need systemic chemo" and she referred me to my new oncologist who said the very same thing.....she also mentioned that there were a lot of good chemo agents o ut there that could just 'melt them away'........now I understood, she wasn't telling me that would happen to me exactly, because they can't, but she sees it all the time and i met a few in her office that have been doing this on and off for over ten years.........that is the problem when cancer metastasises, it will almost always be in your blood ready to attach somewhere.........therefore, scans will always be in ones future......i get it, don't like it, would like to say f--k it and go about my business.............and if it had only stayed in my colon that is probably what i would have done, but that was not the case............so i think they now are going about seeing it as a 'chronic' issue..........til you drop i guess..........like a lot of chronic bad illnesses..........but i also think that we often should do what our 'guts' tell us.........like John23 ...........he went a totally different route.........it worked for him, and that is a wonderful thing, but one  has to be prepared to be into it all the way i presume.............the diet, the herbs, the whatever it all entails......and it's a totally different mindset, and one i would think the homework was done, the talks with known experts, and then of course the pure trust in it all..........I simplly make a nuisance out of myself by asking so many questions i am sure they ( docs) would like to tell me to take a hike.........but that is me......have no problem asking anything..........and i think really good docs have no problem with that, simply because they can answer the questions.......trust your instincts.  You have been very strong and an inspiration to me.

Aw Dancer, you're so sweet,

Aw Dancer, you're so sweet, thank you.

Jan

JanJan63

Thank you

Thank you everyone for the best wishes and support and suggestions. As always, I'm so glad I found this forum. You are all the best of the best!

I met the new onc this morning. I liked her. I started out surly because I'd waited 45 minutes and wanted to get to work at least on time, if not early after being off all last week, and she took it in stride and was good about it. I like her. She's a straight shooter without the fluff (which I abhor) and tells it like it is. She's also good at explaining things like my surgeon is while being understandable without being condescending.

Due to my history she does not want to jump on the chemo bandwagon. She wants to wait until the next ct and see how much they're grown since it's very little so far. She said there are some other options as far as chemo goes but she's concerned about using it now and having my cancer become immune to it when it's not really important at this point. She said I'm one who will not get rid of my cancer, I'll be someone who lives with it as well as they can. My husband asked her how long she thought I might have and she told him. This is not something I've ever asked before. She said I might make it another ten years but there's new things coming out all the time and it could be longer. It's the first time I've seriously thought about my expiry date. I know she has no way of knowing but it was very sobering. Perhaps they'll approve ablation here in Canada during that time. I'll certainly volunteer.

I'm disappointed because I thought that some day I was going to get the NED designation. Now, apparently, I never will. It makes me angry. I never did anything to abuse my body and I lived with having severe IBS my whole life. This just feels like a kick in the pants.

Anyway, I'll keep doing what I'm doing and try to do even more. On a positive note, I was accepted to a cancer fighter weekend in the mountains near Canmore, Alberta in November. It's free. It's called Knight's Cabin and they get donations which allows them to put on weekends all about cancer and nutrition and physical health. There are speakers and workshops. I'll learn how to meditate! Me! Ha ha! If you guys knew how high energy I am you'd know how funny that is. I'm so excited!

I'm almost over the patial blockage. Just trying to get my strength back now. Not eating much so that makes it hard. My boss gave me a big hug today and so did the other girls I work with. Life is about quality, not quantity. I have to remember that.

Love to all of you guys! And thank you. Thank you for always being there and finding the information I'm looking for or just keeping my spirits up, for everything. I pray you all find a cure or at least can keep the demon at bay.

Hugs everyone!

Jan

kristasplace

Complacent idiots...

Their incompetence and complacency is a big reason why I turned my back on most of them in the first place. I lost my faith very early on, but when my onc refused to do anything about the lung met, saying he didn't think it was metastasis while the radiologist and surgeon did think it was, I ended up losing an entire lung lobe as a result. That pissed me off, to say the least. They kept so much information from me. I didn't even know about the lung met until I read about it in my medical record eight months after they found it. There simply isn't any real standard they're held to.

We tried to sue the hospital for patient dumping and allowing me to suffer for a year by refusing to give me proper treatment, but the attorney said there were serious caps on the amount of money we'd be able to win, and she would've taken most of it in the end. It just wasn't worth it to take that route when lawsuits can take years and the costs and stresses just exacerbate the situation. Plus, even if we'd won, it wouldn't have changed anything in the system. That was more disheartening than anything.

I'm so sorry you're having to go through this. It seems like nearly every, single one of us has, or is, experiencing some form of complacency that jeopardizes our lives. That means it's happening everywhere, all over the world. I don't know how we can change it, or if it even can be changed, so our options are very few. I've learned that giving myself the freedom to question every last thing a doctor tells me has helped. If they think something is just fine, I go to another doctor and see what they think. If I feel they're still wrong, I'll push for a test, screening, or whatever. Many an ailment has been found by simply being a difficult patient. Hey, it's our lives, NOT there's. We have the right and justification to be as annoying to them as a splinter under their toenail.

I hope your new oncologist is levels above your last one, and something is done about those lung mets.

Hugs,

Krista

Trubrit

kristasplace said:

Complacent idiots...

Their incompetence and complacency is a big reason why I turned my back on most of them in the first place. I lost my faith very early on, but when my onc refused to do anything about the lung met, saying he didn't think it was metastasis while the radiologist and surgeon did think it was, I ended up losing an entire lung lobe as a result. That pissed me off, to say the least. They kept so much information from me. I didn't even know about the lung met until I read about it in my medical record eight months after they found it. There simply isn't any real standard they're held to.

We tried to sue the hospital for patient dumping and allowing me to suffer for a year by refusing to give me proper treatment, but the attorney said there were serious caps on the amount of money we'd be able to win, and she would've taken most of it in the end. It just wasn't worth it to take that route when lawsuits can take years and the costs and stresses just exacerbate the situation. Plus, even if we'd won, it wouldn't have changed anything in the system. That was more disheartening than anything.

I'm so sorry you're having to go through this. It seems like nearly every, single one of us has, or is, experiencing some form of complacency that jeopardizes our lives. That means it's happening everywhere, all over the world. I don't know how we can change it, or if it even can be changed, so our options are very few. I've learned that giving myself the freedom to question every last thing a doctor tells me has helped. If they think something is just fine, I go to another doctor and see what they think. If I feel they're still wrong, I'll push for a test, screening, or whatever. Many an ailment has been found by simply being a difficult patient. Hey, it's our lives, NOT there's. We have the right and justification to be as annoying to them as a splinter under their toenail.

I hope your new oncologist is levels above your last one, and something is done about those lung mets.

Hugs,

Krista

Blessed

You post makes me feel extremely blessed to have the Oncologist and Radiation Oncologist that I have.

The first time I sat down with my Rad Onc, he pulled up my CT scan and showed me in detail, what was on there. He has done that every time there has been anything questionable. My Oncologist comes in with my written CT report and reads through it with me. I had no idea that a Doctor would try to keep information from their patient. That is nothing short of appauling. 

I do know several patients who don't want to know, but that is their choice. 

SUE

Helen321

You're in good company Jan.

You're in good company Jan.  I'm convinced that this doctor did my surgery because the one he was supposed to do was 10,000 and the one he did while I was under was 38000 and only an extra 4 hours.  He never woke me up to ask me if he should do it, he asked my sister who was my proxy.  I really think these doctors do a lot of unnecessary things for stats and $$.  He and another doctor had told me that a permanent ostomy would not be necessary but suddenly it was.  I'm convinced he did it on purpose or made an error and was trying to cover it up.

Helen321

Meanwhile I really do hope

Meanwhile I really do hope you feel better, that sick feeling is just awful and no  one deserves that.

JanJan63

kristasplace said:

Complacent idiots...

Their incompetence and complacency is a big reason why I turned my back on most of them in the first place. I lost my faith very early on, but when my onc refused to do anything about the lung met, saying he didn't think it was metastasis while the radiologist and surgeon did think it was, I ended up losing an entire lung lobe as a result. That pissed me off, to say the least. They kept so much information from me. I didn't even know about the lung met until I read about it in my medical record eight months after they found it. There simply isn't any real standard they're held to.

We tried to sue the hospital for patient dumping and allowing me to suffer for a year by refusing to give me proper treatment, but the attorney said there were serious caps on the amount of money we'd be able to win, and she would've taken most of it in the end. It just wasn't worth it to take that route when lawsuits can take years and the costs and stresses just exacerbate the situation. Plus, even if we'd won, it wouldn't have changed anything in the system. That was more disheartening than anything.

I'm so sorry you're having to go through this. It seems like nearly every, single one of us has, or is, experiencing some form of complacency that jeopardizes our lives. That means it's happening everywhere, all over the world. I don't know how we can change it, or if it even can be changed, so our options are very few. I've learned that giving myself the freedom to question every last thing a doctor tells me has helped. If they think something is just fine, I go to another doctor and see what they think. If I feel they're still wrong, I'll push for a test, screening, or whatever. Many an ailment has been found by simply being a difficult patient. Hey, it's our lives, NOT there's. We have the right and justification to be as annoying to them as a splinter under their toenail.

I hope your new oncologist is levels above your last one, and something is done about those lung mets.

Hugs,

Krista

Wow, yu went through the

Wow, yu went through the lobectomy? That must have been terrifying! For me they're saying that that would have been my best bet for getting rid of the lung mets but with being on the blood thinners it wasn't an option. The thoracic surgeon gave me about a 30% chance of surviving the surgery and said he wouldn't be willing to work on me. I was relieved at the time. I already have a dead lobe on that lung from the blood clot. Have surgery or have radiation, easy choice, but it turned out that radiation will not get rid of all the cancer. I was unaware of that. I thought I was free and clear. I feel so stupid now. Stupid and gullible.

Thanks for the support.

Jan 

JanJan63

Helen321 said:

Meanwhile I really do hope

Meanwhile I really do hope you feel better, that sick feeling is just awful and no  one deserves that.

Oh my goodness. I don't know

Oh my goodness. I don't know what to say. The one basic thing we need in all of this crap is to have faith in our doctors that our best health is their utmost concern. To think otherwise is terrible.

Thanks Helen, I'm finally getting on top of this blockage crap. It's been almost two weeks and I still feel run down and not back to normal. Eating is an issue. I don't want to eat. I made myself eat 8 crackers for dinner last night. No breakfast today and now it's 3 in the afternoon and I'm making soup which will be my first meal of the day. This is probably why I'm not getting better faster.

Every time I see your avatr I smile. Best picture ever!

Jan 

John23

Blind trust

Re:
"The one basic thing we need in all of this crap is to have faith in our doctors that our best health is their utmost concern. To think otherwise is terrible."

No. NOOOO. It is not "terrible" to question your physician. A second opinion should be mandatory for any life-changing procedures.

My expert surgeon took out 1/2 of my small intestine. I was under general anesthetic (totally out). That loss was completely unnecessary; there was no reason to remove any of the Ileum. The blockage was at the stoma. It's unfortunate that I'm still alive, since it destroys any ability to legally recover losses. I'm stage four since 2006 and already on "borrowed time", there's not much of a loss to prove in court.

My Gp misdiagnosed water in my lung as Pneumonia and prescribed an antibiotic that damn near killed me. The fact that I have a "short bowel" (no colon and 1/2 of small intestine) was overlooked when deciding the antibiotic to use. My Lung specialist properly diagnosed my problem as water in my lung (from taking PICC line hydration at too fast a rate). Had I gone to him prior to taking that antibiotic, I would not have had all the related problems from that antibiotic.

My local surgeons said I required a total pelvic exentoration. They referred me to a facility that could perform that major operation. The new facility found that the major operation was not necessary. (operation to remove that tumor has yet to be done).

My gastro doc (a very well respected one) refused my requests for a colonoscopy/sigmoidoscopy saying that my condition I was experiencing was normal. I asked her every three months across a year before being hospitalized for being unable to pass urine. The reason? I had a tumor in the rectal stump that grew into my bladder. It could have been located and removed a year prior.

It is not "terrible" to question or doubt your physician's decision. Blind faith does not work well when it comes to your life. If there is any reason; any internal, intuitive "little voice" that's telling you to question something, for cryin' out loud.... Listen to it.

It could save your life.

Be well,

John

ron50

There is a new program starting up in australia

Looking into ovarian cancer.  Ovarian seems to have one of the worst records of any of the cancers with the exception of lung and melanoma. It is rarely found early enough and even with the most aggressive treatment rarely does it result in the desired outcome. The thrust of the research is that despite all of the factors against survival some women do survive cancer free. They are looking into why and in particular what is different in the survivors compared to non survivors. They have already made some remarkable fingings and are hopeful that new treatments will be forthcoming. Which brings me to the question that I have been asking for nineteen years..Why am I still alive, and why am I the only one asking? Perhaps they just don't like me.. Hugs Jan.....Ron.

JanJan63

John23 said:

Blind trust

Re:
"The one basic thing we need in all of this crap is to have faith in our doctors that our best health is their utmost concern. To think otherwise is terrible."

No. NOOOO. It is not "terrible" to question your physician. A second opinion should be mandatory for any life-changing procedures.

My expert surgeon took out 1/2 of my small intestine. I was under general anesthetic (totally out). That loss was completely unnecessary; there was no reason to remove any of the Ileum. The blockage was at the stoma. It's unfortunate that I'm still alive, since it destroys any ability to legally recover losses. I'm stage four since 2006 and already on "borrowed time", there's not much of a loss to prove in court.

My Gp misdiagnosed water in my lung as Pneumonia and prescribed an antibiotic that damn near killed me. The fact that I have a "short bowel" (no colon and 1/2 of small intestine) was overlooked when deciding the antibiotic to use. My Lung specialist properly diagnosed my problem as water in my lung (from taking PICC line hydration at too fast a rate). Had I gone to him prior to taking that antibiotic, I would not have had all the related problems from that antibiotic.

My local surgeons said I required a total pelvic exentoration. They referred me to a facility that could perform that major operation. The new facility found that the major operation was not necessary. (operation to remove that tumor has yet to be done).

My gastro doc (a very well respected one) refused my requests for a colonoscopy/sigmoidoscopy saying that my condition I was experiencing was normal. I asked her every three months across a year before being hospitalized for being unable to pass urine. The reason? I had a tumor in the rectal stump that grew into my bladder. It could have been located and removed a year prior.

It is not "terrible" to question or doubt your physician's decision. Blind faith does not work well when it comes to your life. If there is any reason; any internal, intuitive "little voice" that's telling you to question something, for cryin' out loud.... Listen to it.

It could save your life.

Be well,

John

Thanks John. What I meant was

Thanks John. What I meant was that to have to suspect or think that our doctors do not necessarily have our best interests at heart is a terrible thing to have to think. We're constantly scared. We're constantly worried that it sgoing to come back or get worse or pop up elsewhere. It's terrible to have to think that the people we have been referred to to make sure those things are being looked after might drop the ball or have their own agenda in which our best health may not be what fits in with what they're doing.

With all the uncertainties of cancer and the fear we should at very minimum be able to trust our medical team. That's the one sure thing we should have. To not be able to trust them is unacceptible.

Jan

JanJan63

ron50 said:

There is a new program starting up in australia

Looking into ovarian cancer.  Ovarian seems to have one of the worst records of any of the cancers with the exception of lung and melanoma. It is rarely found early enough and even with the most aggressive treatment rarely does it result in the desired outcome. The thrust of the research is that despite all of the factors against survival some women do survive cancer free. They are looking into why and in particular what is different in the survivors compared to non survivors. They have already made some remarkable fingings and are hopeful that new treatments will be forthcoming. Which brings me to the question that I have been asking for nineteen years..Why am I still alive, and why am I the only one asking? Perhaps they just don't like me.. Hugs Jan.....Ron.

Thanks Ron. I'm hoping

Thanks Ron. I'm hoping something will come up in the next while and give me a few more years than she said. I'd like to reach 70. But I also want a half decent quality of life. I wish my husband hadn't asked how long. It was something I didn't want to know. I realize nobody can really tell but I'm finding I'm obsessed with the number. The first thing I did ws calculate if I'd outlive my dogs and horse beause I don't want to worry about them after I'm gone. My husband would look after the dogs, of course, but they're much more attached to me. My horse, my daughter would likely keep him but I'd like to know that he's not old and crippled up somewhere. He's always been healthy and might outlive me by a bit. I want to die in peace and not worry about thse left behind.

My biggest concern is my daughter. We have a small family and her dad, my first husband, has never been much of a dad. She gets along with my current husband but they're never been close. She's been in an off and on long term relationship with a guy I can't stand and who treats her like she's unimportant. He will not take care of her emotionally when I go. I so want to see her settled with someone who will be there for her. That's my number one fear, her having nobody or that useless jerk she's with.

Jan