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Insensitivity in the Medical Field

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

I know we have all had this happen to us at one point or another in our battle against cancer but it just boggles my mind to think that after I too have had this happen to me it still affects me as much as it did the first time it happened. You would think that one would get used to it or at least have some coping skill that worked with insensitivity in medicine but maybe I'm the only one who hasn't found the secret to that skill.

I had a kidney stone several months ago and unfortunately it didn't pass, settled into my bladder and has to be removed. I was to have it out at the beginning of the year but I had heart issues and had to cancel and reschedule, only to find out the next date for the surgery wouldn't be til the first week in June. I started to realize that I didn't have certain questions answered like 1. how fast do the stones grow and 2. was the doc sure that it was the stone he saw on the xray he took at the time. The reason I wanted to ask that last question was because when I was in his office for the first time looking at my xray he said, when he first saw it, 'there it is. At least I THINK that's the stone'. WHAT THE HECK DOES THAT MEAN? With a history of NHL, guessing isn't in my best interest from a doc. So I said 'you think?' at which time he said ya he thought it was the stone and then later he said that the radiologist reading the report said yes it was a stone.

HOWEVER, he planted a seed of doubt in my head and that was enough for me. So I call his office last week and the secretary, even though I told her the story and my history, acted like I was totally bothering her and I had to work really hard to get her to ask the doc for the answers I needed. Apparently he was going away for spring break and so he only had that day to answer the questions.

No phone call and off he went I guess, for spring break. So I called today to get the answers and once again the secretary acted like I was bugging her but said she asked the doctor and he said the stone won't grow that fast (now it was 9 months from when I had the attack) and she said the doc said go ahead with the surgery in June BUT didn't answer the next question which was the important one 'was he sure it was a stone' or something else hanging around my bladder? She stopped for a minute then rephrased it and I said well if he says it is definitely the stone then fine to which she said 'yes'. I don't know but I got the feeling she just answered 'yes' to get rid of me so I am no further ahead. Since the wait was so long to pull that kidney stone out the question was a good one 'was that a kidney stone or SOMETHING ELSE' - 9 months is a long time to wait for analysis of a tumor if it isn't a kidney stone and that doc certainly put doubt in my mind.

With histories of cancer, as we all know, information is our only comfort sometimes and how long does it take someone in the medical field to give us that comfort? Does anyone out there know how to cope with this type of situation, once and for all? I am out of ideas. Thanks. Blessings, Blueroses.

green50
Posts: 318
Joined: Feb 2008

I would of also asked if it could be anything else. My Drs offices usually I will leave a message and the nurse calls back not the reseptionist. And they call me the same day. Maybe a new dR? or is this a good one other then the bed side manner? My husband had a dr that was just a fill in at the hospital and he told my husband he didnt have long. I just looked at him disgusted. He didnt say will try this or that or give any positive attitude. I told the nurses on that floor who they were wonderful, they said yea they have to train him to be better with his positive bed side manner they were disgusted too. And they talked to him. YOur Dr probably knows it is a stone and maybe the conversation never got to him. I hope all comes out well Blueroses. I might talk to the dr about being sure of things and if he is don't stammer around about it. And tell his reseptionist you want to talk to a medical person. Take care
Prayers and Hugs
Sandy

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

Thanks for your response. Yes I did ask them that question, could it be something else and of course there was that hesitation that made me more unsure. I told them it was a fair question given my history but the doubt had already occurred when the doctor stumbled around a diagnosis. I don't think I was being over sensitive about it, he just planted a doubt seed. Anywho I wrote down the time and date that she confirmed it was a stone just for the records. It would take even longer to get another urologist consult and they all work together here so that would be a trick to get another one on board and then scheduling preop and surgery that thing will grow to the size of a mountain to get it done by someone else. I am hoping that it is just the stone and that this doc knows what he is talking about. Thanks for your well wishes and suggestions Sandy. Take care. Hugs back. Blueroses.

tasha_111's picture
tasha_111
Posts: 2043
Joined: Oct 2008

Please don't send me to my corner............... But I have exactly the same problem with my Oncologist 'Dr Charisma-Bypass'! Bedside manner '0' points. When I first met him it was like: "You'll go bald, get a wig" and when I told him of my concerns about chemo, he waved me off like an annoying fly and said "Try it, if you don't like it, give up.........It's not my problem if you choose to die"...Ever the diplomat eh?.. Makes you wonder why these insensitive, uncaring and Ghoullish people go into medicine in the first place, it sure isn't because they want to help and assist patients. Maybe the money, Hours and social standing are enough. I ask u!???? Hugs Jxxxxxxxxxxxx

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

Hey Tash,

Wow you really had a winner of a doc eh? "It's not my problem if you want to die.". Lovely - must have missed that sensitivity training in med school. Sheeesh. Hey listen, not all docs lack sensitivity - obviously - don't think that even needs to be said - it's obvious - but it's just so shameful when it does happen, to top off all the other things we are dealing with. It doesn't take much to lend a bit of support when a patient needs it and fueling their distress just isn't right. Sorry you had to go through that experience Tash, hope you changed docs. Take care. Hugs. Blueroses

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

I hope to have my last chemo on Monday, and then after 8 weeks of radiation, I've PROMISED myself that I will live my life as someone CURED, and will assume, as I did "before cancer," that the little aches and twinges are gas pains or old age. I promised myself that I won't always be waiting for the other shoe to drop; that the fear will melt away and stay at bay. You're a 20-year survivor, Blue. Will doubt always rush in and fan the embers of fear, always? Am I being unrealistic to think that I can turn my back on this chapter in my life and pick things up where I left them once my treatments are over?

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

Linda,

I'm having my blood drawn for tumor markers this weekend and still feel a sense of dread until my doctor confirms that they look "normal". One would think that I could safely assume that nothing would turn up, but that is not the case. A cancer survivor is just that, a "cancer survivor", but in a constant state of vigilance, like a sentry on the wall on alert for the enemy's attack.

Love and Courage!

Rick

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

Hey Rick, Yup I agree, we are always on alert but like I said to Linda, I think it's normal for us to feel that way, just as long as that vigilance doesn't turn to paralyzing fear and render us unable to cope with the day to day on a regular basis. That's my 3 cents. lol Blessings, Blueroses.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Linda, while I have not been at this long (first diagnosed in August of '05), I have been involved with it ever since and have spent much time talking to survivors. I would agree with terato to the extent that there will probably always be at least a SMALL niggling anxiety in your mind.

However, I would also advise that much of the answer depends on you. You can choose to be positive and move forward, or you can wallow in self-pity and the attention that you can garner from being a survivor.

You do not strike me as the type, re the latter, based on your posts herein, including the one here.

My mother, the mother of six, had breast cancer surgery in 1974, and after that you would not have known it had you not seen her in the swimming pool, hacked like a poor butcher's job, but not complaining, glad to be living her life, glad to be enjoying her children, glad to be running around shopping with her grandchildren.

Life will be what you make of it.

Some choose to find reasons to complain. Others choose to celebrate. I think you are of the latter ilk.

And all the more power to you!

As for the original post re insensitive medical professionals, I would advise that while there are a few out there, as there are in any profession, we should bear in mind that they deal with tragedy and crisis on a daily basis and must harden themselves to some extent against becoming too close to their patients, else they will burn out or go crazy.

I say that as a man married to a nurse, so I am apt to be biased, but also much more keenly aware of what these people go through on a daily basis.

Hang in there, Linda. Life is what you make it, and you do not have to go down complaining every other day or so for the rest of your life. You can, as far as I've been able to tell, enjoy life if you choose to.

Take care,

Joe

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

I think I just answered my own question Linda, after reading Joe's posting here. I assume then that you were talking about yourself and your fear of recurrance. Now I think I'm on track (stupid chemo brain, lol). Joe said that you didn't strike him as the type to 'wallow in self-pity and the attention that you can garner from being a survivor', and while I have no idea what the last part of that sentence meant ('attention that you garner from being a survivor') I think that on all of us survivors are totally allowed to wallow in self-pity now and again if that's how they feel, no matter how brave and 'let's get on with it' an attitude they often have. We all have our down times and on this board we have to be able to state that and get it off our chests when we feel that way. I am adamant about that for survivors - that they can openly express the pluses and the negatives here without fear of being shot down in the name of positivity. Yup being positive is great but come on, who can pull that off 24/7? You are human Linda, don't apologize for that. Unless the fear has gripped you to render you incapable of living your life then when you hurt - cry, when you are afraid - talk it out, and when you are having a good day - share that too. If we can't be honest about our feelings here, where can we do it? Hugs Linda, Blueroses.

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

Hi Blue, I feel that having gone through the horror of a cancer diagnosis and treatments I deserve to feel sorry for myself now and then. I don't find it possible to close the door on my cacner experience. I do live my life and enjoy each day but my fear of cancer is always in the back of my mind. I do occasionally feel depressed due to reliving the experience(it was afterall emotionally, physically and mentally devastating).

If anyone can go through all that and not be permanently changed/affected then my hat is off to them.

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

I agree. When we are feeling down and a bit sorry for ourselves so be it, the feeling will pass but to get upset about it still affecting us even long after treatments have stopped is pointless, it was a trauma, of course the fear will come back now and again but hopefully not as painfully as in the beginning. Hope today was a good day for you Eil. Blessings, Blueroses

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

Must be having a chemo brain moment but were you talking to me and asking me the questions in the last part of that thread Linda or were you referring to yourself as not being able to get over the idea of recurrance? If you meant me, I never think about recurrance because I had an extraordinary experience happen to me while I was in isolation during my bone marrow transplant but of course when I have a scare in my health I don't like the thought then of having cancer again. But it's only then that I think about cancer but again because of that experience I may be unique in my thinking, don't know. The comment about me being a 20 year survivor -don't know why that was mentioned there. Did you mean that after 20 years I am still thinking of recurrance, cause I'm not BUT I have signficant and major after effects that definitely keep me down and bummed on a pretty regular basis. That isn't focusing on my issues of pain and medical intervention - it's unavoidable and in my face daily and I just talk it out here, with those who understand. I really didn't understand the direction of that post Linda, could you explain? Again, I'm blaming the chemo brain, lately it's been pretty bad.

What I do know is that many, or even most, people fear recurrance and I think that's natural to a point. I mean we know the horrors and worries surrounding cancer so who the heck would want that again? But we can't let that fear interfere with our daily lives and when it does then intervention is necessary is my take on it. But only with trained counsellors who deal with cancer survivors specifically, psychologists to me are the best but that may just be a personal preference. I always think of the scenario that it would be so tragic if a cancer survivor fears from the get-go - the cancer returning, ruins their lives and after many years they die of natural causes - cancer never did come back - but they ruined their lives with the fear instead. Not a pretty scenario.

What I also know for sure is that it is SOOOOOOOOOO IMPORTANT to be able to vent our feelings on this board, not just for ourselves, but for all those who feel that they are the only ones who fear and worry and hurt and in reading our posts at last feel validated. Anyone on the outside who hasn't gone through what we have can't possibly understand us and validate us - friends, family and even the medical field at times. That's why I choose to tell it like it is, give up the 'brave' cancer survivor face when I don't feel it and be honest on this board. I owe it to my fellow survivors to tell it like it is.

Take care Linda, hope today is a good one for you. Blessings, Blueroses

nsquirrely
Posts: 50
Joined: May 2007

I understand how you are feeling about a doctor with no bedside manner whatsoever. My gyn refer me to a gyn oncologist who had the bedside manner of an idiot. I truly had no choice but to allow him to do my surgery as there is only three in the area. They are in the same office, too. Since there is only three of them, they are also very busy and I couldn't wait even long enough to see one of the other ones. I had to go back to my gyn to get the answers to important questions. He was so reluctant to answer my question that I refused to sign the permission slip the first time I saw him. To which, he replied then you are going to die. Really???? Is that any way to talk to a person who has just been dx with cancer and is so overwhelmed by it all? I just wanted to understand what the h--- he intended to do to me. Then on the day of my surgery, I said to him that I had talked to my gyn and as long as he wasn't doing the radical vulvectomy----and only doing what he had written on the paper then we would go ahead. To which he replied, this is between you and I and your gyn isn't involved in this. So------he should have been more forthcoming with the information I required in order to allow him to do his job. After my surgery, he sent me to a radiation oncologist with his recommendations for treatment. He requested that she contact him after the first 25 treatments to discuss internal rads. that he wanted done. She tried repeatedly to talk to him and he never returned her calls. I decided to go with her recommendations and at the point said I will need someone else to do my aftercare cause I never want to see him again. Now she takes cares of me herself but I don't know what I will do if the need ever arises where I need to see a gyn oncologist. I also decided at that time if I ever had another doctor so unwilling to give me the information that I required to allow treatment then I would get rid of them and find someone more to my liking.
Hugs and prayers,
Shirley

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

What an awful experience you had. I can relate as many of us on this board can. Isn't it the worst when you are stuck with certain uncaring medical personnel because of situation - where you live and availability of specialists? Ticks me off that people sometimes are held hostage by these kinds of circumstances and then have that stress to deal with on top of everything else. Just shouldn't happen. Well at least you got one doctor who is easier to deal with now and that's a good thing. Try and not think about what would happen if you need that specialist again, who knows you might never have to deal with it again period and secondly even if you do down the road, he may have moved on and a more sensitive doc may well replace him. Try and deal with today Shirley, if you can, and try not to worry about tomorrow. Sheeesh, would be great if I could take that advice myself, lol. Blessings, Blueroses.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

There is little doubt that there are some pretty bad doctors out there. I have walked out on four over that last six years. And I have driven 350 miles one way to get to a doctor I could trust. I have two standards that I live by. They have to read my file and answer my questions. I can't take the chance of adding more damage to my body then I already have. I have little use for production line medicine and work hard at developing a good relationship with anyone that is going to work on me. I learned a long time ago that I could get more information and answers if I had a good relationship with the scheduling nurses. If it takes candy and flowers then they get them. But its a cheap price to pay compared to always waiting for answers.

Getting past cancer is always a personal issue as we all have different coping skills and support structures. And some of us are left with constant painful reminders. But we need to get control of our lives back along with our dignity that was trashed during treatments. I don't look back unless I am trying to relate to someone on here or help someone locally. I make plans for the future and constantly push my limits. I have not found anyone that looks forward to their scheduled cancer checks. But they are a cause for celebration when things turn out good. If I was going to live my life by "what might happen" I would be in a nuclear fallout shelter underground. I would rather be out in the sun and don't plan on climbing in a hole for cancer or anything else. So fight for every bit of your life you can get back. Bless you Slickwilly

green50
Posts: 318
Joined: Feb 2008

Amen Slickwilly Amen
Prayers and Hugs
Sandy

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Thanks. I went outside last night to get my dog. I fell down 3 steps and thought I broke both wrists and my tailbone. My neck is reminding me how much it hates to get shaken up. So its a vicodin day, but tomorrow will be better! Ya gotta hate ice ha ha. Bless you all Slickwilly

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

That dog is out to get you Slick, lol. You 'thought' you broke your wrists and tailbone, did you? Did you get xrays? Don't tell me, your a man and you can take it, right? Well with vicodin you can take it, lol. You remind me of House. lol

Tell that dog to quit getting you into trouble, what a pain he is. Literally. Take care old boy and please stay off the ice. Sheeesh. Blessings, Blueroses.

tasha_111's picture
tasha_111
Posts: 2043
Joined: Oct 2008

Take more water with it! LOL..........So sorry you are in more pain, take care Jxxxxxxxxxxx

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

Blue, I wasn't in any way criticizing you for venting when I mentioned '20 year survivor'. I just am so hoping that the worry of recurrance will disappear once I don't have the daily reminders of the bald head and have all the constant doctor's visits of 'being in treatment' behind me. When you said how the doctor callously inserted that doubt/worry in your mind, my initial thought was: "after 20 years, will my mind still immediately 'go there' instead of the having the easy confidence I ALWAYS enjoyed pre-cancer that I was fine, that it is nothing but gas or a small sports-related injury, etc.? I enjoyed such ridiculously vibrant good health all my life, and actually thought of myself as unbreakable, immune to all illnesses. 55 years old and I was NEVER sick before; worse medical experience had been a bad case of poison ivy. I yearn for a return to that arrogant confidence in the strength of my own body. Your post hit home to me personally that I may never recapture that rock-solid assurance of my own excellence health again.

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

I think the reasons I asked the question was because of the 20 year survivor comment in the midst of one of your comments so that confused me (doesn't take much to do that these days, lol) and secondly because you always seem very 'up' so I thought - hmmm, must mean me. lol. K, thanks for clearing that up. I read another post under this thread and I figured that is what you meant. No worries.

Oh no my post shouldn't have made you feel that you will never be as you were, everyone is different. On this discussion board though, as you have obviously noticed, there are a bazillion different types of cancers, treatments, and outcomes so no two experiences are really ever quite the same. You have to remember that I was treated 20 fricken years ago and some procedures certainly must have changed for the better since then I'm sure. Also I had different treatments than you did no doubt - different drugs - and a whole lot of issues that you will most likely never see so I wouldn't take any posting on here as if it will automatically pertain to you.

Yes many people do have side effects from treatments but depends what treatments they had. Many people aren't ever quite the same but that doesn't mean they can't function or won't be happy in their new 'normal' as some call it. There may be alot to be learned from a person's new normal if that is where they are headed too, a new way of looking at things.

Opinions offered up here, including mine, are personal observations and sometimes they match up with others and sometimes they don't. The key is positivity if you can at all pull at off as often as possible and you may well be one of those people who, after treatment, carry on as before. The best advice I was ever given before all my treatments started was from a doc who said ' never compare yourself with anyone else who is undergoing even the same treatment for the same type of cancer as you are because remember, they are different people and may respond in totally different ways to you '. So I listened to others experiences with an open mind but never said 'oh no that will be me' because of what that doc shared that day.

I think that after a person has had cancer we do, at times, tend to 'go there' as you said, if a health situation arises for us or if we experience something that reminds us of our time with treatment. That's normal. After treatment is over we can't just forget all about it completely - it's traumatic - but if you can get back to your life and be able to work and play then that's something to look forward to. Hold a good thought Linda that that will be you.

Blessings, Blueroses

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

Linda, I'm very sorry to have to say this but I don't know how a person who has had cancer can ever get over it--I mean to forget about it and return to the way things were. I thought I would do that. Here I am 22 months NED and it's my stumbling block. It probably has something to do with the stupid abnormal paptests I keep getting. Realistically I might have been like this anyway. I too was very, very healthy and took my health for granted. I never developed the health problems so many people seem to have as they get older. I kept my weight down (never had a weight problem) and didn't have any addictions. But I'm waiting for the other shoe to drop........Cancer isn't like the flu or common cold you just suffer thru and get over that. Wish it was.

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Yesterday marked 4 weeks since my surgery for prostate cancer and my doctor says so far things look great, we'll know with the final psa test next month. I've been told by family and friends that once the surgery is over you'll have nothing to worry about. Well I'm staying positive and feel very relieved, but I can't see how I can ever just move through life without this being in the back of my mind. It's easy for everyone else to say well it's out now you can go back to normal, yeah well removing cancer isn't like removing your tonsils. I'll always be a little nervous going for the psa test, which have to be done yearly for the rest of my life. The things I can do are what I'm doing now, changing diet,increasing the exercise and enjoying life even more. I won't let it stop me from celebrating life, but it's definitely hanging around in my thoughts. On the subject on insensitive medical personnel, I can relate very well. I chronicled alot of my experiences in "Diagnosed at 40" on the prostate cancer thread. Upon meeting my urologist the morning of my biopsy he held a short conversation with my wife and I that gave his view of my future. He assured us that everything was going to be ok and that he had a guy last week that was 43 with a psa of 5, and he was certain he had cancer. He continued with, yours was much lower, at which time we interrupted and said, "No it was higher." He cleared his throat, looked at his notes and said, "oh I'm sorry." Well I had complications from the biopsy which placed me in the hospital for a night a week later. I was told repeatedly to make sure I made it to the appointment the following day to discuss my biopsy results once I was released. My wife and I made the appointment the next day with much anxiety,but with hope in our hearts. We were led back to an examining room and before we can sit down the doctor walks in and loudly exclaims, "So... I hear you got some cancer in ya prostate!" I was in shock and my wife even asked if he was joking at which time he explained that no it was no joke. He then asked ,"They didn't tell you when you went to the hospital?" "Well I guess they left it up to me to deliver the bad news." I sat down and he spent 10 minutes talking mainly to my wife, handed us some books, and wished us luck. Now I don't have an MD but I do work with people everyday and I've gone over that scenario a hundred times in my head as to how I would have handled things. How about, "Did anyone discuss your biopsy results when you were in the hospital?" "They didn't?" "Well sit down and let's have a talk." I had many more experiences with that medical facility, which I fled as quickly as possible, but that one will always be remembered.

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

That story of insensitivity sure brings back memories of several of my own experiences, I am sure we can all, as survivors, relate to this topic for sure. A few careless, poorly thought out words by a doctor/nurse can do so much harm just as much as a few well thought out and kind words can give such comfort. Does it take any more time to do the latter?

With the economy being as it is today and with all the cutbacks I fear for cancer survivors and patients alike in this rushed and stressed medical world we live in now.

I hope you are getting better care now and it was so wise of you to leave that facility as soon as you could. All the best, Blueroses.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I am sure that many of us have been through an emergency room or doctors office in the past few months. It has become painfully clear that we suffer from a doctor shortage not only in the U.S. but all over the world. The high cost of becoming a doctor $200,000+ has pushed many out of general practice and into specific high dollar areas. Rural areas of the country don't keep good doctors very long as they are in high demand. General Practice doctors are almost becoming a thing of the past as they need income to pay off college debts. Its sad that my children will not be able to maintain one doctor for much of their life as I have. I have had my GP for 25 years and consider him a friend. Last week one of my daughters had a bladder infection and no insurance. I told her to call my GP and he would take care of her. She was pretty surprised when she called him and explained she didn't have any money. He took her in right away and gave her the needed medication. Then he said she could pay him whenever she had some money. Nothing to sign and no disrespect. Just one doctor taking a patients word that she would pay for his service. When my daughter called me and said she had received treatment I had my wife call his office and thank them. I have seen 25 doctors over the last 6 years and 4 were pretty bad. So I guess that is not a real bad average in this world we live in. The problem with doctors really hits home when cancer is involved and time is critical. Doctors with too many patients don't have time to read files and they have to justify any tests to the insurance industry. They have to weed out the drug addicted people looking for prescription drugs. Many times such as in my case, the first ENT thought I was just looking for pain drugs. Only after I tried to take a swing at him did he schedule an MRI on my head that found a mass and a brain tumor. That completly changed his tone with me but I never saw him again. There is no simple solution to all of our medical problems no matter what country you are in. I see that Britain in now refusing some cancer treatments as they are too expensive. In the Netherlands many patients are offered assisted death by doctors long before its called for. My step grandmother was offered assisted death by a few doctors and lived quite happily for another 6 months. It always seems to come back to money. And I don't think anyone's life should reduced to dollars. Slickwilly

green50
Posts: 318
Joined: Feb 2008

Another thing to contend with is insurance. I have Medicaid and have a 700 dollar spend down. Well I take chemo every month so I am suppose to pay the 700 a month spend down. Can't take the pill Dr wanted me to because I would have to go into drug store and give them the 700 a month towards paying for the chemo pill that is approx. 2000 dollars. So I go to the cancer center and get the drip. Thank God they are understanding there and I pay my $20 a month toward my spend down. HMM this rate take me the next 200 years to pay but anyway Medicaid pays anything over the 700 and the Dr excepts what they pay so I can get the MIllion dollar treaments a month LOL just joking about the million but anyway they are compassionate where I am at. Why does life have to be in the name of money? hmm. I will be ON Medicare next year and then maybe find a medigap or something. Hopefully government will figure out something but until then I am getting my treatments and they can't get blood out of a turnip LOL I am thankful for my Cancer Center. HOpe all of you get better treatment of what you deserve.
Prayers and Hugs
SAndy

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

Sandy, I have medicaid also and I am very thankful because I would never have been able to pay for the surgery and treatments and tests and checkups. For many years I had no health insurance and never went for checkups. But I have noticed that during the last few checkups I don't see my doctor anymore. I only see the physician's assistant even though I made my appointment with the doctor. So if it's the physician's assistant during my May appointment, that means it will be an entire year since I've actually seen my doctor. They don't call me or tell me ahead of time so then I could re-schedule if he is not available. First I thought it was just a coincedence but now I'm starting to think medicaid maybe doesn't want to pay for a gynecological oncologist for someone in remission. However, I have concerns about the abnormal paptests I've been getting and during one of the checkups the physician's assistant asked me how many men I've had sex with. I didn't know what to say and muttered something but I really don't think she even knew what kind of cancer I had had (ovarian) and maybe thought I had cervical cancer. I don't even have a cervix! I am aware that sometimes ovarian cancer spreads to the cervical cuff area but that has nothing to do with how many sex partners I had over the years. So I think next time, before my appointment, I'm going to call and ask if I will be able to see the doctor instead of the physican's assistant. If I can't I might as well go to a GP. At least then I'd be able to see an actual doctor.

green50
Posts: 318
Joined: Feb 2008

The only time I dont see my Dr is if he is at a discussion board meeting then one dr is there to take over but 99% of the time I see my Dr. I am lucky where I go plus I have know the nurses for almost 7 years and trust them as well. I just know your checkup is going to be great.
Prayers and Hugs
Sandy

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

Unfortunately it's true Slick - it always comes down to a buckereeno. Pretty sad when a person's life is at stake. In Canada we have had basically free healthcare but I can see that fading with prices now put on docs filling out forms and so on. I can see us moving towards privitization and that's a scarey thing indeed for most people. As the babyboomers start to creek the insurance companies are upping their premiums so that some can't afford to even have that type of insurance - you can see it all cracking at the seams up here. We still are much better off than countries with no national medical but how much longer is the question here. Day by day I guess.

I too have a GP I have known for about as long as your GP and she is invaluable and the best thing about her is how much she validates me. I do notice however that more and more docs are realizing the side effects that many survivors share and comment by comment when I see a new specialist it's a good feeling to know that they see the issues. Up here we have just had a story out that many docs are choosing not to work in hospitals - that's a scarey thought.

Blessings, Blueroses.

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

President Obama has heeded the call of the 47+ million uninsured and the even larger group of under-insured and is determined to pass some form of universal coverage this year. Unlike the proposed reforms of Hillary Clinton in the early '90s, this time around, Obama will have the support of both business and medical provider groups: http://www.healthcarereformnow.org/author/docs/coverage_crisis.pdf. I have read that Obama is willing to sacrifice parts of his energy agenda to gain Congressional passage on health-care, he may even push for a simple majority vote to guarantee passage.

The entreprenurial spirit will be unleashed when a lot of middle-aged Americans will no longer be bound to their employers for fear of losing health coverage and establish businesses of their own, hopefully healing our damaged economy. This is not just my hope for America, but my hope for Canada as well. Our bodies may be sick, but our minds are creative and our wills are strong.

Love and Courage!

Rick

green50
Posts: 318
Joined: Feb 2008

Thanks for info Rick and yes our will is strong. I will be praying they do the right thing.
Prayers and Hugs
Sandy

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

My wife and I saw a movie last night that my aunt had suggested I watch after hearing of my experiences with doctors in the beginning of my treatment. We had waited until I had surgery to watch it, but it did bring back some similar experiences. It's pretty old but still a good movie, it's called The Doctor and stars William Hurt. It's based on a book called "A Dose of My Own Medicine". Basically it's about a doctor with no bedside manner and arrogance who is thrown into the world of being a cancer patient and sees the medical community from the other side. I'm sure alot of you have seen it, but it was relevant to the initial subject so I thought I would share my experience.

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

Yup I heard of that book and movie and actually I wanted to give that book to one of my insenstive oncologists way back when I was going to treatment but couldn't find it. I thought the book was called 'The Doctor' or maybe I am thinking of another book. Yup I guess no matter who we are you just don't know how it is for someone unless you have literally walked a mile in their shoes. Blessings, Blueroses.

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Rick,

Here in canada we are lucky that we do not have to pay for our health care. We have to pay for pain meds, nausea meds, or anything that we would use at home. We do not have to fight for coverage, argue with insurance companies on which doctors we want to see.

I hope your new president makes it that way in the US, so cancer patients have one less fight in front of them.

Hugs,

Sue

Folks24
Posts: 97
Joined: Feb 2007

Working people really have no idea what REALLY their health insurance costs. Back long before my lymphoma diagnosis, I was laid off from my job and elected Cobra. I was paying $50 mo for health insurance so thought it'd be maybe $100 at most. NO - $450 and I was healthy then! Talk about shock!!!

I have also run across insensitive drs, etc. I've gotten the "dumb" ones too. I even had one tell me my "blood/node problems" were probably caused by my cat - I had this 2 yrs before I even got a cat. Duh! There is a place here in town that has a rep of you don't go there to get blood drawn. They are terrible there. I tell other places and they say "oh yeah" and that I am easy to get blood drawn from. I got a great gp. He knew things were not right and kept sending me to drs until I finally got a diagnosis. It took 2 yrs and my gp got ticked at the "so called specialists". So I learned the sad fact that doctors don't know everything and sometimes not much - even the specialists. It would be nice if the drs would put themselve in OUR shoes once in awhile to understand what their patients are going through.

I always tell folks to be proactive for themselves with their doctors. If it was your mother, father or sibling - would you let the dr get away with that? Would you ask more questions? Etc. I was proactve for my folks for many years so I'll admit it is hard being proactive for myself but I am learning.

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

Folks24,

I adopted a practice, in dealing with physicians and attorneys, of sending them letters itemizing my questions and concerns prior to my appointments, keeping a copy for myself so that we would both, literally, be on the "same page". The respective professionals would, therefore, have had the time to prepare answers without having to "to follow-up and phone me in a few days". With attorneys, this proves to be a real money-saver, since every minute they spend on the phone is money on your bill. Having a copy means you never "forget what I was going to ask".

It's not enough to see a medical or legal professional, you have to be a "professional" patient or client to receive the service to which you are entitled.

Love and Courage!

Rick

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

Hey Folks, Thanks for sharing your story of strength in the face of cancer treatment. I love hearing these stories of proactive people who fight for answers til they get them - even when they are weak themselves - physcially. You go Folks.

Just to add to what you said is the fact that I find, personally, that if I go into a doctor's office and they treat me badly in any way, I don't only owe it to myself to make my statement known on how I feel about that treatment but I owe it to the next cancer patient who is unlucky enough to come in after me and get the same lousy treatment and so on and so on. If we can muster up the strength to set those kinds of docs straight then just maybe they will think twice about treating the next patient the same way. I am always hopeful that sooner or later it has to sink in to some extent. lol.

Most of my doctors and nurses have been fabulous along the way but it only takes one to say something carelessly to bring us down if we are vulnerable. Some people just can't speak up for themselves so if we get a 'strong day' and have the chance to make the point with a doc who needs it, then let's hope we will do the right thing and stand up and let him/her know.

Sounds like you had a physic doc there who saw signs of upcoming cat issues in your health even before you got a cat. lol.

Hope this post finds you having a good day. Blessings, Blueroses.

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

I don't believe becoming proactive comes natural to some people. I was never a very aggressive, assertive person for most of my life but things happened that made me aware that I could no longer be a passive person when it concerned the health of my children or myself. If you don't ask questions, try to find out information, disagree or question a medical decision, you place yourself totally in the hands of someone who might forget or neglect you. The morning of my port removal I found out from the nurse that I was supposed to get my port flushed out periodically after I finished chemo treatments. Nobody had said anything and I was never told to make an appointment for that all those months. I'm just lucky there were no problems. Afterall, my port was connected to an artery in my neck. The look on the nurse's face showed the shock of realizing nobody ever told me to do that. Another situation was when I called to find out the results of my second paptest (previous one came out abnormal) because it was over 2 weeks and I never got a postcard or anything. First time I called after 3 weeks because I never heard anything. For the second test the nurse said the results were good. But then there was a message on my answering machine when I got home from work that day. Since it was Friday early evening, I had to wait until Monday morning to return the call. I spoke to a different nurse and she said the test was abnormal again and it even showed some changes from the previous one; that I needed to retake it on my next checkup. Of course I'd be concerned because even though I've been NED for ovarian cancer for 23 months now, sometimes cancer spreads to the cervical cuff area. My mother recently was hospitalized because she fell in her bathroom and broke a bone in her upper thigh. She was in agony and had to wait 3 days for the surgery because on the day it was scheduled they realized they didn't have the correct sized rod in stock. She was getting shots of morphine but apparently that wasn't enough for the pain--maybe she needed something different or something. Everytime I've been in pain in the hospital they have always taken care of the pain for me, including the bowell obstruction which I would rank nearly (not quite) up to childbirth. Now, a couple of weeks after her surgery, she still speaks of the terrible pain she had to endure then. And I always say the same thing; that it's too bad they couldn't have helped her more with that. She always says they did. Apparently not. She lays there passive because she's 82 and trusts that they will do the right thing by her. I know better. I like Rick's suggestion that you prepare a list of questions and concerns and send it in ahead of your appointment. Elizabeth

tonybear
Posts: 92
Joined: Mar 2009

the doc i saw after i got my biop report of cancer had a god complex. i am native american and i don't show much emotion (unless i'm laughing). my wife is from san antonio tx, a mexican with some fire in the blood. she had already called the cancer centers of america and had some questions for the good doc. he got upset when she started asking medical questions. then she went off on him about him being the professional and the questions were because we needed information. i guess he had never ran into a verbal chain saw. we left and didn't go back there. i had my present doctor tell me. God doesn't mistake himself for a doctor and i don't mistake myself as God. a lot of these responces talk about always watching. it is now a habit with me. what i eat, how do i feel, did i take my drugs. it is a life style change for me. no more happy go lucky. i know i am blessed, i am trying to maintain my blessings.

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

Hey Tonybear, Sorry to hear about the insensitivity of your former doctor but so happy you took a stand and moved to someone who you could actually get answers from. Many of us have come upon the 'God' complex in doctors and it always seems so strange to me because if it weren't for us patients handing them our symptoms they couldn't be effective doctors at all. So strange the way some of them act. Unfortunately today the medical field is swamped with patients now asking informed questions, not like the old days when a patient would go in and whatever the doctor said went - no questions asked - actually they were kind of treated like God - they healed and we had no hand in how we were treated or what we knew personally about our illnesses. The computer changed all of that as well as new treatments allowing us to live longer and with better quality of lives in many cases. We speak up now, armed with the knowledge we have acquired through the internet and other survivors stories.

Of course there are many many sensitive physicians and nurses and caregivers out there, no mistaking that, but it just takes one insensitive doc or nurse to really set us back - IF we allow it to. Our job I believe is that when we come across such a medical professional we, like you did, set them straight on our rights and our needs. Good going.
Blessings, Blueroses.

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