Be honest, is it just me or what?!

Chelee · 07-18-2006, 11:13 PM

When I was DX & went to the cancer center closest to me...they handed me all these folders at each stage of my treatment. Patients rights that you get every where you go. How they ENCOURAGE you to be involved in your tx plan and ask questions. How you have a RIGHT to know your tx plan and all options available to you. That all options WILL be explained to you along with benefits & risks of each tx.

Then I got to the chemo part of it and everything went down hill. No one tells me nothing as far as what THEY plan to do with me. I will read on one of my PET/CT scans something like this "enlarged lymph node II in right carotid space, increased activity". So I ask them.. "Whats that mean?" I am told its FINE. I am scared reading things like that. Why won't they just take the time to explain why my PET scan says something like that if its fine?

Why do they hand out these sheets from the hospital saying they WANT you involved in your tx plan...and it explains why its so important that you are. They say its OUR RIGHT to have everything explained and have a say so in tx. But its just NOT happening here for me. It could cost me my life at this rate.

Even today...I got for my 2nd Radiation oncologist visit. Was put in CAT scan, tatoo'd...and told to get dressed and come back Friday for a x-ray...then after that I would start rads. I kindly asked the onc nurse that told me that..."when am I going to talk to the Rad onc doc about what he is going to do to me and where? (I have MISSING ribs on that side and my surgeon is very concerned about them radiating that side without doing major lung damage.) So I NEED to know what this Rad onc doc plans to do with me...I am NOT built like everyone else. My surgeon told me to ask them.

Their booklet they handed me said ALL the SAME THINGS...that the Rad doc would explain everything to me at the consult. And how they WANT you to be a part of your treatment, etc.

So I nicely said...I really need to know what he is going to do so I can better understand this. I said its all new to me. She said "Well...I guess I can talk to him and SEE if he will LET you come in a half hour early on Friday before your x-ray so you can talk to him".

Is ANYONE ELSE here having this type of problem in all areas of their tx? I am JUST going by what THEIR OWN booklet said that they handed me to READ. It said everything would be GONE over and explained in detail. It even said after my CAT scan and tatoo...when they knew what they were doing...I would be HANDED my tx plan and the Rad doc would go over it with me. I was handed NOTHING today other then an appt card. He never talked to me.

Who could I talk to at this hospital WITHOUT stirring the pot to much and making them all mad at me? I just want answers. I am trying to stop recurrances. No one has addressed these big puffy deals on the sides of my neck that I have had and I have been asking about them since Feb! They just say they don't know what they are...but don't worry...because they aren't hard to touch. I need to find out what they are!

Does anyone know how I can get some help here? Who I can talk to at a hospital? I don't want to make waves...I just want the doctors to treat me that way I have been my ENTIRE life...like a person. They make me feel like since I have stage III bc I am going to die anyway...so why bother with me.

Can anyone help me...I am at my wits end. I would switch to another hospital but we can't...we are STUCK in this group plan through the HMO.

I don't see anyone else here having problems getting things explained to them. Everyone here seems to like their onc. I am 49 yrs old...and I have had quite a few doctors through my life and they all LIKED me, and still do...I am a GOOD PATIENT. I don't deserve all this...bc is stressful enough.

Chelee

Lani · 07-18-2006, 11:55 PM

AND WHAT HOSPITAL ARE YOU GOING TO? DO YOU HAVE AN HMO OR COULD YOU GO ANYWHERE FOR YOUR TREATMENT? I always tell people with that many complaints to "vote with their feet" or at least check out whether the grass is or isn't greener on the other side so that they can feel satisfied that they did all that they could to change an unsatisfactory situation. If the grass is not greener elsewhere, then you should expend some energy to try to get
doors of communication open and nail them open.

My two cents, for what its worth.

Lani

Kimberly Lewis · 07-19-2006, 05:49 AM

What a nightmare this whole thing is! The problem I see is that you can vote with your feet and end up wearing out your shoes!!! I have changed Oncologists 3 times!!! I finally like the one I have but it is an effort somewhat akin to marriage. You have behavior you don't like and you must be careful not to nag or they will become even worse. You try your hardest not to loose it, because tears rarely enlist aid but tend to make them dismiss you. Jeepers its actually much worse than marriage! YOU SHOULD be able to talk to your radiation oncologist before just marching off to be fried! Especially with your concerns - if nothing else get your Surgeon to call him for you if you can't get a resonable response. They talk well together usually, and if one Doc is kind and listens to you - USE him. I am only a few months ahead of you in treatment, hopefully someone else has more experienced advice for you. It is such and ego game going on with Dr.'s, each new one I went to criticised the one before.... I am still waiting for Mr. Right but living with Mr. Ok if you know how to play him.... the NYTimes has a great article on this called "Modern Love, What Shamu taught me about a happy marrige- it is fantastic, really made me laugh hard, plus has some great ideas for relating to your husband. Not that it works on you Dr. but we can try!

Tom · 07-19-2006, 08:34 AM

Dear Chelee,

I am sorry you are having to endure the arrogance of doctors along withj your BC. Over the years of having family member after family member face cancer, and watching the way they were "handled" by various diciplines of medical staff, I have come to one conclusion.

For some reason, be it the intense training physicians go through during their schooling, the long hours they work, or the nature of the personalities that choose to become doctors, they are arrogant and guarded. In today's world, this simply will not stand for many patients.

The solution I have used to combat this problem, is fear. THEIR fear. I hated to adopt such a strategy, but it became necessary. There are many ways to instill this bit of "insurance" in your doctors. The first is through information. If you ask the right questions, at the right time, and use the right language (technical, not obscene...lol), you will see a marked change in the way you are treated.

Each time I met a new doctor for Mom, I would calmly recite her entire medical history, some of it from before I was born, using the language of doctors. Heart issues are always "cardiac concerns". Anything with the liver, "hepatic concerns". Heart murmurs are "valvular insufficiencies". Get it now? I was not trying to be a show off, but simply let them wonder "who I was", and if I might be someone that would recognize poor treatment or mistakes when I saw them. If you speak their language, you leave little room for them to ignore your concerns. Many a doctor has asked me, "are you in medicine". My reply is always the same. No, I just am not amused by professional sports, and choose to read instead. The looks are priceless.

My suggestion is this: get yourself a decent medical dictionary, and an easy to read anatomy book with lots of pictures that describe the major systems of the body. Buy a copy of Dr. Susan Love's Breast Book. Make yourself a nice cup of green tea at night and cuddle up with those books. Not only are they fascinating, but they will give you a basic knowledge of how these "skin suits" we drag around all day actually function. Most of all, come to this site every day and READ UNTIL YOU ARE BLIND. This site is absolutely invaluable as a source of information and personal experience. I am addicted to it, and if I have to buy a wireless laptop for travelling, I am gonna send the bill to Joe and Christine. What were they thinking...lol?

Next, tell ALL of your doctors that you want copies of ALL of your test results when they arrive, no matter how small or seemingly routine they are. This includes either hard copies or CD-ROMs of your diagnostic studies. Keep a copy of all of your blood tests that are taken right before chemo visits. Keep all of this in a ring binder, and carry it with you whenever you go to the doctor. NEVER sit through an appointment without a notepad and pen in your hand. Listen carefully during the visit, and take notes. Ask him or her to slow down when they are giving you information if need be. Date EVERYTHING you write down.

Ask, no INSIST, that your doctors describe in detail the treatment plans each has in mind, and include all of the phases of your treatment. Separate the various aspects of your treatment, i.e. surgery, radiation, chemo, integrative. Make SURE that each doctor understands what the other has in mind for you. Many of these doctors don't know each other personally, and may never meet other than over the phone if even then.

Finally, after they find themselves thinking about your case at night when they go to bed, be firm but pleasant. If you can do and say things that make you doctor review your case in his or her own mind from time to time, perhaps in fear of making a career-ending, new inground pool-cancelling, medical mistake, you have done your job and will receive better treatment. It's a shame that it has to be this way, but as I have explained to doctors before, they have too many patients to treat properly, and too little time to make their decisions because of patient loads. Usually the last time the doctor thought anything about your case, was five minutes before your last visit, when the nurse dropped your case file into the clear plastic basket hanging from the exam room door. I HATE those #%*&@# baskets anyway. I always hook my arm on them when I leave the room...lol. Good luck and let us know what's going on. Take care.

Tom

mamacze · 07-19-2006, 09:05 PM

Dear Chelee,
It sounds like you have been through the mill and feel more like just another number passing through; rather than a member of your treatment team. It also sounds like you are second guessing yourself and the contribution you can make as an equal member of your treatment team (ie, "I really need to know what is going on....I don't want to make waves....")

My suggestion is that you start right now having more confidence in yourself and what you have to offer your doctors....and you have a lot to offer! You know your medical history, your idiosyncrasies..(like missing ribs) and your surgeon is right! A gap or an anomaly in your rib cage can be a significant factor to consider when setting up radiation oncology treatment parameters. YOu are a vital member of your team.

Forget the literature, remember your important role as an equal team member. Politely but assertively inform the staff (perhaps the scheduling secretary) than you cannot procede with the treatments until you have had a conference with your radiation oncologist. Ask for his first available appointment and then go armed with a written list of all of your questions.

Finally, remember at the end of the day, the doctors are just regular "joes" like you and me. They work long hours, see patients non stop and deal with crisis on a daily basis. They know the treatment routines; but may be so flat out with patients that they get behind on reviewing research results. That is where you come in. Educate yourself so well that you are asking current and up to date questions. In the end, you are the only one who will be the best advocate for you, so get on your computer and get learning! Above all else, do not consent to any treatment until you have educated yourself and you have asked all the questions that you have.

You will do fine. You are ready for this next step. Meet with your doctor and let us know how it went!

Love Kim from CT

Cathya · 07-20-2006, 09:51 AM

Chelee;

What a discouraging situation. It is all the harder to deal with when going through these treatments. In my hospital my onc is sort of like the coach. He directs all the other doctors I see so if I have a question I go to him. Ergo, if you don't have a wonderful relationship with him/her you're toast....without the resources to get the information, etc. you need. If I have any questions inbetween appointments I call his number and leave a message and his nurse deals with it by talking to him. Although this method of contact doesn't sound very effective I have found it has worked very well and my onc's nurses are very compassionate and caring and very quick with the answers. The only other resource I notice around the hospital that might be assist you (assuming that all hospitals basically operate the same way...even in different countries...I suspect they do have similar resources) would be talking to the social worker who is an available resource for cancer patients here. I have not needed her services but see her around quite often in the chemo room, etc. Perhaps she could step in and be your spokesperson in settling down these relationships for you....as you said you couldn't move to another hospital (too bad). I wish you all the best.....it sucks to be you right now....as my son would say.....lol.....but things will get better.....stick to your guns and your better health. Call the President of the Hospital if necessary.

Cathy

Ora · 07-20-2006, 12:43 PM

Everything I've learned, I've learned from the nurses. My Onc is OK, but his nurse told me that she would be my new best friend for the next few years and she meant it. She has returned my call as late as 7 p.m. Same thing with the treatment nurses & my rad Dr. nurse. You have to find someone you can talk to and trust.

sarah · 07-20-2006, 12:55 PM

Chelee,
What hospital are you at? I have been treated in Los Angeles and in France and have always talked to all the speicalists who have explained what they planned to do - radiologists, surgeons, oncologists, so I cannot imagine you wouldn't have a consultation beforehand. Kim's right, you should have it. take someone with you to the hospital to get them to get you a proper consultation. Maybe there's a patient advocate or advisor at the hospital you can talk to .
good luck
sarah

Bev · 07-20-2006, 08:44 PM

Chelee,

My rad onc met with me for 2 hours before treatment for consult. She was the one that did simulations and magic marker stuff. You do deserve to have a 1/2 hour of his time. They may already have you covered with the missing rib, but you do need a confirmation. Everyone's advice was great. BB

madubois63 · 07-20-2006, 11:19 PM

You've had a lot of good advise, but I'd like to add my 2 cents...Remember you are the boss and you are paying their salary no matter if the money is coming out of your pocket or your insurance companies. You have the right to hire and fire. Demand the respect you deserve by taking control of your life/treatments. Be informed, confident and assertive. It may be a lot of footwork in finding the right doctor/center, but it is very important to have a doctor that believes in you....

Chelee · 07-22-2006, 02:10 PM

Lani, Wow, I am totally overwhelmed by all the replies and ideas of how to help me.
I WISH I COULD go to another hospital or center for tx...but I can't. Thats how THEY get away with this crap in my opinion! They KNOW they have you locked in and you can't do anything about it. I am in a HMO...and its a GROUP that you are enrolled in. You can ONLY go to this ONE hospital and through this GROUPS doctors. If you go OUT OF NETWORK as they call it...it costs a fortune. So they know you have no way out unless you are rich.

I did change to another oncologist once in this group...but they all know each other so it doesn't help much. At first it seemed better...but in the long haul...nothing really changed...in fact its worse now.

I have always been the type to WALK from any place I am NOT happy with...and I would love to in this situation. But its impossible. So I have been TRYING to do like you said...OPEN up some other doors. I did manage to open a NEW door with this big head lady that runs & over sees the doctors, infusion room, and all aspects of treatment. She seemed really nice and open to my concerns and problems. She tried answering all my question and tried to address all my concerns. (But I will wait to see if there are any repercutions to this?) I don't want to get too excited about it.

Sometimes it seems like I am getting some where and then it comes back to bite me in the butt.

But she really did seem very nice and even made a call to a doctor to come up and read and EXPLAIN my last PET/CT scan to me. I did not expect that. Seems she really is trying and she did say someone SHOULD of answered all these questions for me. (She KNOWS they didn't after talking to me.) She did see how happy I was when I left. I told her thats all I have wanted is things explained so that I don't have to leave there and go home and worry about whats really going on with me since no one will explain anything to me.

She said to come back ANY TIME If I need things answered...that she would be more then glad to help me. (Hopefully she will go and talk to all these people that have been blowing me off.) She would never tell me if she does...but that is what I am hoping she does.

I don't think she was very happy to see the few things that I could NOT get answers too and I have a RIGHT to know these things. Plus she could see WHY I was so worried when my PET scan says I have a enlarged node II in he carotid space. But yet I told her my doctor said not to worry about it. I don't think she was very happy about it. I hope I am not reading her wrong...and that she really does care? Time will tell.

Thanks Lani!

Chelee

Chelee · 07-22-2006, 04:04 PM

Tom, I can certainly tell you have been through enough of what I have been experiencing from reading your reply. You are SO right about these doctors being arrogant and GUARDED. The only thing that bothers me is I FEEL like I am the ONLY one down there that will keep pushing and talking to third parties till I get answers or the care I need. (In fact, they all tease me and call me the trouble maker.) Why...because I ASK questions and want answers about my own health. That makes me a bad guy?

Do people really just get worn down and give up and let these doctors get away with NOT answering them? Seems these doctors wouldn't do this as often if they had to answer for it more often? But I do know from personal experience...it is very hard going through this entire bc journey...both the phyical and emotional part of it. Let alone the treatment & have much energy to push hard enough to get the answers we as patients HAVE to have to make informed decisions. We are fighting for our lives...isn't that enough...then on top of that we have to fight with them to get them to find out whats going on or to get necessary test & scans done. (I don't literally fight with them...but you know what I mean.) Actually I have been far to nice...even my husband tell me that is half my problem. (Maybe it is...guess that needs to change.)

Tom, I really like the strategy you layed out here for me. I have been asking for ALL my lab results, PET scans...even copies of the DISKS so I could have them for my own records. I recently got ALL my medical records from the day of my surgery which THEY (My doctors) were suprised to find out i got ahold of. Thats what made me have even MORE questions? I found LOTS of things in those reports that they NEVER mentioned to me and they should have. I am going to do it the way YOU said too. I will tell ALL my doctors I want a copy of all test results when they arrive no matter what they are. Lab, CDs, scans, Rads report, you name it. (I haven't been doing it that way...and that way is MUCH BETTER.)

As to writing things down...that one I have wired. LONG before bc...I have always written everything down. I have a journal with every page date and have always wrote down details of my family life..when we went some where to important things like what was said at my doctors appts. I have journals going back 18 years. I have told them I WRITE everything down..so you think they would be more concerned. I can always see how un-comfortable they seem when I get in their office. I pull out my folder with my paper and pen in hand & I write down everything. I have told them all I documet everything. I always have my list of questions in hand which I NEVER get answered. My doctors are so good at talking without saying anything.

But that is where you said to learn all the TALK. To talk their language. Now that I have NOT done...but I will. That even makes alot of sense. That I can do since medical issues have always interested me. Like they were concerned about my lungs...so NOW i will address my lungs as a Pulmonary problem...instead of lung problem. I have a second CONSULT Monday morning with my Rad doctor because he did NOT address my issues at my last appt. Boy will I be ready this time.

I have a little extra reading to do to get ready for it now...but it will be well worth it.

I like the way you said to ask....NO, INSIST my doctors explain in detail. Tom you really have given me some great advice here! I can't tell you how much I appreciate it. It comes at a valuable time to me especially since I have this appt Monday with that Rad doctor. This Rad onc doc I am seeing was looking at me last time like he was listening...but he WASN'T. And that could cost me my life. I kept telling him I am MISSING RIBS on that right side...I can't have anymore LUNG damage. (Or should I say *Pulmonary problems*.)

I think I have tried so hard NOT to make waves, or make them mad at me...that is is causing me more of a problem like my husband keeps saying. This week I will attack this differently and let you know how its going.

Thanks so much for your in site Tom. I really believe your post will help me alot. Its such a SHAME that doctors have so many patients these days that they can't spend more then 5 to 10 minutes with you IF your lucky.

Thanks again Tom...I really appreciate you taking the time to help me out. I need all the help I can get...I have been at the end of my rope lately. I didn't know what else to do/try? Now I do.

Chelee

Chelee · 07-22-2006, 04:22 PM

MaryAnn, That is what is coming across loud and clear. I do need to be a bit more assertive. I have been so nice its not funny for fear of making them mad since they have my life in their hands. (Then being STUCK in this group of doctors rather I like it or not does not help.) If I could walk...I would of been gone long ago! They KNOW they have you because you can't switch unless you can afford to pay out of pocket...and there is no way I can. They know this. That is one thing bad about many HMO's. Even PPO's are better.

Kim, You hit it right. This place I go to is being run like a MILL. That is funny because the place I went to for a 2nd opinion said the place I go to sounds like a MILL. LOL I am serious..they really did. And it seems just like that...all you hear is "NEXT".

Your so are right Kim, I DO second quess myself all the time. You guys are telling me what my husband has been trying to get through my head. But I have never had to deal with bc before and this has been so scary as you all know and have lived yourselves. I am usually NOT like this when it comes to my health...in fact I have never had problems like this with my physicians. They have always been good to me and answered my questions. This place acts like they OWN you and you have NO say in your tx and I know that is NOT true.

Its time I get more confident as you said and assertive. I did just tell my husband the other night this mrs nice guy is going to come to a end because its just NOT working. (I don't mean I will be offensive or or yell...but show then I DO have a say so in my care..and they do owe me answers. )

Whats doctor Phil say "People treat you the way you ALLOW them to treat you." That is so true!

You guys have been great! All of you have lit a fire under my behind and given me some good and well needed advice how to handle this. Now....here's hoping I come back after this week and tell you all things are looking up.

Thanks to all of you that replied...I can't tell you how much I appreciate it. I sincerely mean that.

Chelee

Chelee · 07-22-2006, 06:48 PM

Hi Kimberly, Your post sounds like you have been almost the EXACT same place I am at. Oh my heart goes out to you. Isn't it awful having to fight this dreadful disease and have to keep switching oncologist and trying to find just ONE that is in your corner and really seems to care about whats in your best interest instead of being treated like a *number*.

I liked your one liner there about voting with your feet and wearing out your shoes. lol (So TRUE!)

I have experienced just what you mentioned. When you mentioned its like a marriage and you have to be careful not to nag or it gets worse. Oh boy do you have that right! Seems like everything I did to get THEIR attention, or to find out why I could not get answers to my questions...things got worse and worse. I was having my surgeons nurse practioner that knows all these people very well intervene for me to see what the problem was? They all told her there was NO problem. In fact my oncologist told her she likes me and as far as not telling me what I need to know...thats just the way she is. (Say what!) Long story shorter...every time I TRIED to fix the problems by one means or another...it got worse and worse. It was like a power play to them...they wanted to SHOW me who holds all the cards. They win every time...and they know full well I am STUCK seeing the same doctors in that group which are all in the SAME building.

I FINALLY got it through to them that I will NOT be going to Rads until that Rad oncologist answers my questions. So what do they do?! They ALL know down there that mornings are same as impossible for me. (So they make sure all my appts are as EARLY as possible to make sure i am misrable.) I am ready to call the "ADA"...because before bc...I am disabled...and they have been making my life a living he$$.

This Rad onc doctor has been trying to avoid me it seems. So I told the girl Friday I would NOT be starting rads till he talked to me...period. I said I am missing RIBS on that side and I can't afford to have anymore lung damage or if I need chemo again...I won't be able to do it if I can't breath.
I said this Radiation doctor has NOT ran in to anyone that has MY problems...so he NEEDS to tell me what his plans are so I can decided whats best for me. So she comes back and tells me my appt is 8:30 AM Monday knowing full well that is too early for me. I said you CAN'T make it later. She said he is REALLY busy. Isn't that too bad...I have waited six months to get to this point...you can't tell me that is the ONLY day he can talk to me and it HAS to be 8:30 AM.

(I know WHAT they were thinking...that if they made my appt EARLY knowing I don't like mornings...that I would just CANCEL it and go through with Rads and he*wouldn't* have to talk to me.) I know all their games!

Plus non of this makes sense. They said I HAD to start rads at least between 3 to five weeks at the most. It will be SEVEN weeks this monday. So if he is right...its already to LATE for me to start? Why did he tell me 3 to 5 wks and drag it out so I am going to be starting so late? Nothing has went right since I started this. ARGH!

Thanks for your post Kimberly. Good luck with Mr. OK...and I pray you find Mr. Right SOON!!! I don't think thats asking to much. Good luck to you. Hang in there...some how we will come out of this ok regardless of how they made it so difficult. Hang in there. Hope your Rads is going ok so far.

Chelee

Bev · 07-22-2006, 10:11 PM

Chelee, your story makes me think I would go out of network and try to get a reporter to do a story on it. You are where you are, I don't think there's any evidence that waiting a few weeks changes things. I just know there are times you get PO'd. Your docs are probably not going to kill you, but they certainly don't sound like advocates. (sp)

On the other hand, I don't know that your treatment would be any different if you go elsewhere, they just might be nicer. Same sh++, different location.

As I would want my treatment done in a timely fashion, I would continue on your course, but email your local paper and see if they might be interested in your story. I think the docs want to do right, but the system is screwed up.

Somehow I think they think they're doing the right thing, but from what you said it's marginal and full of pain. Keep at it, you want the very best. Sometimes, it's just too much for patients to deal with.

So if it's a matter of rudeness , let it go. I think your docs have been rude. The most important thing is to get rid of the cancer crap, and only time will tell. So you have my permission to be the most obnoxious patient . But... your'e doing the right stuff. Good luck. BB

Tom · 07-22-2006, 10:45 PM

Congratulations Chelee, on growing "extra parts in your briefs"...lol. They can be a nuisance when sitting on hard chairs, but they really come in handy when you find you are getting the "50 cent tour" of your cancer treatment plan. You now have the spirit, the information, and a plan in place to take control of your treatment. It may feel odd to be in charge for the first time, but you will grow comfortable with your new found confidence. We are all proud of you.

Having the moniker "Troublemaker" won't win you any popularity contests, but it will help you get the best possible outcome. Nothing makes a male doctor pay attention, like a woman that shows up with her panties in a knot...lol. It's a shame that it has to be that way, but too bad. Again, they have too many patieints and too little time to make life-defining decisions. In a sort of slow-motion kind of way, they are acting as an ER trauma physician when they see you in their office. What they decide or recommend can affect your life in the same way, only over a longer period of time. Keep up the good work, and read your books and pamphlets.

Remember that you don't have to be rude and obnoxious to make your point. Just be firm and accurate in all you say. Words mean things, and speaking properly from a position of knowledge will have a positive impact. Imagine how I felt when a secondary onc asked me what Tykerb was when I explained that I wanted Mom to have it if I could make it available to her. Another physician in radiation oncology some toime ago, had not heard about the Bayer HER2/neu Serum Assay blood test, and asked how it could possibly work. When I immediately responded that it measured the level of circulating oncoprotein itself, he was clearly embarrassed in front of his intern, especially when the intern frantically jotted down what I had just said. If I had my way to influence cancer treatment, it would be to insure that busy, overloaded physicians have someone whose sole purpose was to keep them informed, day by day if necessary, on the latest research information.

One thing that I did shamelessly for one physician, was to make them a small decorative furniture piece (essentially a knick-knack) for their home. It was something that I knew would be displayed prominently, and seen every day in their normal course of life. I did that for two reasons. One was that I wanted to show my appreciation in some small way (a hundred dollar bill didn't seem appropriate) for their special interest in Mom's case. The other was that I knew that each time they looked at it in their home, they would have to (even if only subliminally) think of where it came from and why. There is no way to measure such an effect, but every little bit helps. Who knows? They might be thinking, "oh that pain in the ass" when they see it, but who cares why as long as they remember Mom as well. You get the point. I will not hesitate to do whatever it takes to see that Mom gets the best treatment she can. Firearms displayed prominently in my belt are reserved for particularly desperate situations...lol. Take care and keep us informed.

Best Wishes,
Tom

sarah · 07-23-2006, 05:50 AM

Chelee,
Everyone had good advice for you and Tom is a perfect example of a cancer patient having a caring but tough advocate looking out for them. I think we need to clone a few of the great men on this site! (Tom, Al and Joe spring immediately to mind and there are others as well.) Chelee, do you have a friend who could go with you to the hospital and fight on your behalf to get your questions answered? I think it's hard enough for the patient to fight to be well without fighting to be heard or fighting insurance companies. I hope you can find a good advocate. Maybe speak to some of the local cancer associations and see if they can't send someone out with you - they'll know how to handle the situation. You don't need this added worry.
all the best and remember even though they may not be answering your questions (which is wrong) they still may be giving you the correct medecine. i hope so.
all the best
sarah

Chelee · 07-23-2006, 03:04 PM

Sarah, I wish there was a Dept. close to each hospital where you could go pay someone like Tom, Joe, Al or other men like them to go with us.

Rent a Advocate! lol Oh how I wish.

What bothers me is my husband HAS taken me to almost everyone of my appts since this started. I wanted the extra pair of ears. Plus he has always been good about asking question that I forgot too. He is so different then me. He always looks so serious and doesn't play around and expects answers to his questions. If they don't fully answer a question...he will keep it up until they do. (I dont' think they like it.) But too bad...I sure can't get any answers. But even with him there its ALWAYS been like pulling teeth. My husband has always said "Whats with these people...what does it TAKE"!! He gets so ticked off its not funny. (Not in their office...when we are home.)

So far nothing has worked with these people at every stage of this nightmare. My husband is firm, direct and to the point...and I am always smiling and being super nice. We are SO different in our apporch. My husband tells me I am too nice. He doesn't want me to be nasty or cussing them out...but to be more serious and firm with them. More like Tom has said about being FIRM. Men think different and usually get a much better response then us women it seems to me?

I never us to like to believe that saying that this is a mans world. In alot of ways it is. Men are treated so differently and taken much more seriously then us women in certain situations.

They have even PROVEN that men are taken much more serious if they go into an emergency room with complaints about chest pains. They are taken right in and dealt with where as women they will tell them its anxiety, or PMS, or they are menopausal....they aren't taken as serious. They proved more women DIE because they aren't treated the same way men are and they said this has to change. Well I am starting to thinks its in more areas of the medical world then just cardiac issues.

I am exhausted dealing with just living with my DX...let alone having to fight to find anything out about myself. We live, eat and breathe bc...isn't that enough. I know one day I called this nurse practioner about THIS problem I am having and I am NOT a big crier, and I hate crying in front of anyone. Well I was telling her what was going on...asking her what I could do...how worn out I am. Then I started to explain how I come home from ALL these doctors appts and HAVE to spend HOURS on my laptop to diagnose myself and all the words on my PET/CT scans. I said its EATING UP all my free time I have...I said my time is very important to me now....why should I HAVE to spend hours doing this when its the doctors job to explain these things that are so simpe to them. Then BAM...I just broke down and started crying. I was so embarassed. I told her I should NOT have to do this. My doctor should be explaining my PET/CT scan results with me. I said I come home and look all this up and I am likely to read more into it then I should. She agreed and went to speak to my doctor...but nothing has changed as always.

They say you need to keep a positive atitude...but they sure make it hard when they won't tell you a darned thing. Its makes you worry more!

You would think these doctors would have more compassion for someone with a DX like mine. I feel like a piece of gum on the bottom of their shoe. I have never been treated this way in my entire life from any of my doctors. This has been unreal.

Thanks Sarah.

Chelee

Chelee · 07-23-2006, 03:40 PM

Tom, You sure are a funny guy. I think its LONG over due that I grow some much needed parts in my briefs as you said. lol I love your sense of humor!
I also liked your comment about me getting the "50 cent tour". That REALLY is about what I have gotten so far. You come up with some good ones.

I have a bunch of questions written down for my Rad onc appt tomorrow morning. I think they are good ones. I am going to wipe off that silly grin I get on my face and be more serious tomorrow. I am NOT leaving till I get a answer to every one of my questions.

This entire health care system needs a MAJOR over haul. They have far too many patients and so little time. Things need to change. But my primary physical told me years ago that things would get WORSE before better...and he was right! He said the bigger these HMO's get...the more control they will have which will cost us (the patient) & the doctors. Its so true...I have lived through it. I know its not easy for these doctors at times either...but they still choose that profession and their mistake, or not talking to us could cost a lot more then a paycheck.

It sure sounds like you keep them on their toes Tom. lol Knowledge as we all know is power...and when they see you coming they know they can't dance around you! (Thats a big advanage to you.) They probably think you really are a doctor some where but you just aren't telling them. lol I bet you make them a bit nervous.

Thanks for all the words of wisdom and the much needed help. Hopefully I will have a better outcome tomorrow with this Rad onc.

If something doesn't change soon, I think I might do as Bev mentioned..take my story to a local newspaper. And believe me..I know which one. I worked at one for six years.

I hate to do that...but this has really been a nightmare.

I just want to be treated like everyone else...nothing special. I am not use to doctors not taking the time to explain anything to you. I have NEVER had this problem. I will let you all know how it goes after tomorrow.

Thanks a million to all of you.

Chelee

Peggy · 07-23-2006, 07:53 PM

Chelee,

I agree with all the advice given, but thought I'd just reframe it a bit. While you are being assertive and seeking the best treatment, you might also think about the amount of energy you are using being angry and upset with the system you are in. That energy is desperately needed by your body right now to fight the cancer and heal itself. Do what your need to do, insist on what you need...but at the end of each day...let it go. Don't waste your precious energy. I also have Stage III (only c instead of a) and certainly understand your concern...but, while everything you want is reasonable and to be expected and you have every right to insist on proper treatment both as a person and as a cancer patient...you must take charge of yourself....even if everyone is not telling you everthing they should, you can still find an area of calm within yourself from which to draw strength. This might be the best approach for you right now.....These are just thoughts. There is a lot of research on how much we have within ourselves that will lead to healing. Draw on those resources too. Anger and frustration have a place in our journey but should not dictate the journey.

Peggy