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Institutional Disrespect


SDianneB

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I'd venture a guess that most of us here who have been hospitalized will share at least some of the things I will mention here, especially the #1 "rule" -- "Treat every patient as if s/he is 12 years old." (Ugh) Followed closely by "Always have a supply of cutesy names ready to use to refer to your patients, and try to never use their names." (as in hon, honey, sweetie, etc.) Ugh.

I spent 25 years in the health care administration field, was out for about 10 years, and am somewhat dismayed at the state of this industry today. I guess volumes could and have been written about hospitals, but I am also referring to physicians, their offices and the people who work for, around, and with them.

A standard wait to see the oncologist is 2 hours. The first time, he'd been out of town and I had a friend with me, so we just visited while waiting - no big deal. The next time, same thing -- 2 hours I wait inside a little cubbyhole, door closed, doing NOTHING. I could have had my chemo done and over with and time left over by the time he made it in there to spend about 10 minutes and then send me back to the chemo room. The result was that I spent a total of 5 hours -- count 'em, FIVE -- in that office on that day for what should have taken no more than 2 hours max. Grrr.

Even more than this, the people who work there seem to see nothing unusual or unacceptable about this. Good grief! Of course, almost all of them are about half my age, and at least a few I'd wager are about 1/4 or less my IQ, smacking their gum, giving me one of those "blink blink" looks if I say anything. Aaarrrgghhh!!!

By the 3rd time, I'd implemented my plan --

1) Call first and ask -- and MAKE THEM ANSWER -- how long is the wait today, and if it is more than 30-45 minutes, is it ok if I just show up that much later for my appointment? (Of course, they want you there anyway "just in case," and it's your duty to wait in their boring waiting room -- hahaha)

2) When I arrive and have my vitals taken and my blood count done, I ask if I can go ahead and get started on my chemo rather than sit in a room and wait on the doctor. He can come into the chemo room and talk if he wants while it's being done, or see me after it's over -- whatever.

3) If they insist on putting me in a room, I make them leave the door open so that every time they pass by, they see ME -- a person -- sitting in there rather than a closed door, making it easy for them to forget or ignore that fact. About every 15 minutes, I go to the nurse's desk and ask #2 again, then ask how much longer. (My theory here is nothing more than making sure they know I'm there, and for how long.)

4) I always, always report to the doctor how long I've had to wait, and when his answer is something like he was out of town, I let him know that isn't my problem. It's their job to schedule appropriately, not mine to put up with their inefficientcies. (Of course, we all understand them having emergencies or having to spend additional time with a patient, that goes without saying. But I suspect that doesn't account for very many of these long delays.)

The first time one of the young pups behind the counter gives me "a look" for asking these questions, I will refer her to their own brochure where it talks about them being there FOR ME, and it being their job to make my visit there a pleasant one, and then inform her that MY time is just as valuable as HER time, and she wouldn't enjoy spending 5 hours in a place like that either, and unless I can exercise extreme self-control, will insist that she discard her chewing gum while at the front desk. Eeewwww.

Look how long this got, and this is only one topic ... I have more. Later.

Dianne

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Dianne, yours is a familiar story. First off, we, too, spend about 2 hours when we see the onc. However, when he is with us, it is as if there are no other patients and we get to have his presence as long as we have questions or concerns. So, we have decided that he is "available" to each of the patients that way, and it is okay if we don't get in right away.

I have already shared in another place about our last experience with the chemo, but it bears repeating under this topic. We do report to the onc anything such as delay, drip rate, whatever was not normal during the visit. He has thanked us for this, and even told us this last time that they thought they had fixed the time delay bit but it obviously needed more work.

First, Lucie was supposed to get both Navelbine (her chemo) and Aredia (her monthly IV for bone mets) last Thursday. I asked the attendant which they would be giving her first and got the reply, "Oh, she's just getting Aredia today". I said, "Uh uh, she gets Navelbine, too." Well, that was a delay until they got that sorted out. She got the nausea drip, the Navelbine, and then the Aredia was started. I looked up and saw a very fast drip going, and I knew the last two time, it had taken 3 1/2 hours to administer. I called the nurse and she lowered the rate immediately. By then, Lucie was already nauseous. The IV took less than 2 hours, so you can see it was the wrong rate. We reported that to the onc and he said he would ensure they got it right next time.

It all pointed out to me that the patient needs someone to be with them, to be an extra pair of eyes and ears, and to be an advocate. I will not let Lucie go alone. If I am not available, we arrange for a family member or a friend to go with her. Unfortunate, but that is the way it is.

Hope you have better times in the future with this. Forewarned IS forearmed. Don

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Don & Lucie -- I agree with you about having an advocate or someone with you to keep an eye on things. Oncology care givers as a rule are lots more careful than others in checking and rechecking, but I can't help but feel that when they are overloaded with patients and in a hurry, they will make mistakes just like the rest of us humans!

Kim -- maybe we should just give them a big MOON every time they walk by us in the rooms while we're waiting? Ha! If I did that, they might force me to shut the door -- then lock me in and throw away the key!!!

Don't get me wrong here -- I don't expect perfection, but between me and my insurance company, these people are being paid plenty to provide their services. Even if they weren't getting paid, it's their job -- patient care. That's PATIENT care -- not tiptoeing around doctors and blindly following "THE PROCEDURES" just because they are there.

Oddly enough, I find that when I go for tests only and the docs are out of the picture, things are much more efficient. My guess is that they are just like me -- they don't want to be there all night, so they get the job done more efficiently and we all get to go home within a reasonable time frame.

Dianne

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The day that my doctor let me cry and sob for over an hour while he patiently listened , I bet someone was in the waiting room , like you , counting the minutes he was late. I was so lucky to have a listening, caring dedicated doctor. Donna G

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You are truly fortunate to have that, Donna. The Oncologist I go to isn't much in the "human being" department for emotional support (I call him "Dr. Gloom & Doom") but he is an excellent practitioner which is why I stay with him. The Radiation Oncologist is a different matter -- he's also a top notch doc, and a super person in my book.

Like I said, I truly have no fuss at all if the delays are caused by us patients -- that is why they are there. What happened with me on at least 2 occasions is that he had been out of town and they apparently tried to overbook on the day I was there to compensate, and it didn't work too well. I'm one of the luckier ones -- I'm in good shape, and sitting around is more emotionally distressing to me than physically. There were quite a few people there though who were visibly over tired and distressed because of the long wait. This cancer center has people come from all over the country, and some of them drive for hours just to get here the night before so they can be "on time," and then have to wait around like that. I live 10 minutes away -- I can come a little earlier or later in order to help those people be more on time if necessary, and I'd be happy to do it.

This is why I refer to this as "Institutional Disrespect" -- I think it has become so tangled up in the normal course of a day for these kinds of places that they don't see it as being abnormal or unacceptable -- no matter what the reason. They seem to be so caught up in their procedures, most of which they probably couldn't tell you why they have in the first place, and insistent that we all follow them by the book.

(Disclaimer -- I'm using this topic to vent some frustration about less than grand experiences I've had recently. This by NO means cancels out or diminishes the many good and wonderful experiences I've had -- no way. I've mentioned those in other posts too, and will continue to do so, because they are by far in the majority.)

Dianne

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Wow, Dianne....we seem to be polar opposites!

Well, almost. My oncologist is ALWAYS late, but I am SO SURE he is a caring individual, etc., that I wait. I'm not a patient person, but I wait for him. Sometimes, I see people that I KNOW are newly diagnosed. It's easy to read on their faces - and sometimes, I talk to the really distressed ones. THAT makes MY time worthwhile...and then the doctor is all mine. He answers all my questions, he repeats answers that he has given before when I have doubts...he's late, but he's good.

Now, the tests with no doctor around? LOOK OUT! I'm a hard stick - needles are NOT my friends. EVERY time (not sometimes, EVERY time) I have to have a contrast dye, I ask for a nurse...and EVERY TIME, I get some self-assured cocky technician that is bound and determined that THEY can start me, they're "that good"...and just before I pass out, I FINALLY get a nurse (I had tests two weeks before Christmas, a week after gall bladder surgery and those "wonderful" folks poked me FIVE TIMES, blowing four veins and hitting a nerve in my little finger...).

One tech gets a nurse for me immediately now. He remembers me and my tie-dyed shirt, I'm sure (I always wear it for needle days) and doesn't even bother to try. He's my favorite...

I have a favorite phlebotomist, as well. I make sure to get to the lab during her working hours. She KNOWS where to "hit" me...

Hmmmm...bottom line here is that I'm willing to wait for QUALITY, but NOT for someone who thinks they are more important than me... Oh yeah, AND, when a patient who gets poked on a quarterly basis asks for a nurse or EMT, GET THEM ONE! There is no excuse for incompetence and causing pain...and five sticks for contrast dye is excessive in ANY lab.

Becky

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I agree that the consistently long waits (1 hour or more) are disrespectful. If it's a continual problem, the scheduling should be adjusted and I'm a big believer in letters to administration to get things changed. I work in a diabetes clinic and I know the doctors often have little control over the scheduling but it's when patients complain (to the right people) that's when things get done.

My favorite incident at the oncology clinic was when the doctor came in and said "Oh, I'm glad to see a smiling face. I was starting to get depressed with all of the sad faces." What??!! I guess they never told him in medical school that people with cancer may get a little "down" sometimes. GRRRRR!

Ok, now I've vented.

Jane

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Throughout this 22 month journey, I have made each and every appointment. It must be said that I am an early morning person and Earl only liked mornings if he stayed up all night.

I have always tried to get the first appointment of the day. This usually meant that you had a shorter wait because the doctor didn't get backed up. From what I understand, insurance is demanding that doctors see more and more patients, therefore they allot a shorter time for each appt. If a doctor is even a little caring, he probable exceeds the alloted time and therefore as the day goes on, the more behind he becomes.

So heres for the early riser.

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I went to the oncologist office this last Tuesday. I was there over 31/2 hours for a consult. They drew blood (stuck me 3 times for that) and then put us in a cubicle....3 hours later the doctor came in. I am not sure this helped but we did open the door....and my chart was in the little tray on the outside of the door. I took it out and was reading it myself..the nurse saw me and came right over. She asked for the chart and said the doctor will be right in. Sure enough, he came in only a few minutes later. :lol:

After all, it was my chart and all I wanted to do was read it. After he got there he was very nice and answered all of my questions. This was another case of being out of town. Last week he was on vacation and they made up for it this week. He was way over booked. I got good news so I wasn't too upset. My husband was a little angry but we just ate a very late lunch and went home.

Nina

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Well I read all of your stories and have a comment to make. The one and only good thing in the way Johnny's appointments went was that we never had to wait long. I suspect the reason for that was because his onc never did more than stand with his hand on the door ready to leave and tell us to go on to Chemo.

I found that they were rushed even when there were few patients waiting. I came to the conclusion that was only to make themselves look important. It was the nurses who really did everything not them. Too bad the nurses don't get paid for the amount of work they do and the doctors the same. I bet then they would not only have more time for their patients but find a heart buried somewhere in all of that ice.

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Becky -- I'm with you on the phlebotomy. I've started telling them "there are plenty of good veins if you know how to find them." And honestly, there are. Someone good at it finds them right away -- one stick and we're done.

The Oncology practice where my doc is has hours from 9:00 to 4:30, Monday through Friday, and they close early one day a week. Where I come from, that would be called "banker's hours." If they would open up the office at 8:00 and stay open until at least 5:00-5:30, Monday-Friday, forget the early afternoon, and stay open on Saturdays at least twice a month, they wouldn't have much of a backlog. They probably wouldn't believe it, but it wouldn't cost them much to do that either if they would just rotate current staff and add a few new people. I'd venture to say that there isn't an Oncology practice in the country that doesn't make enough money that they could spend a little of it making life a little easier on their patients.

Part of me says that I should be grateful I'm getting such good care and that things like this just go along with it, but the part of me that spent 25+ years in the health care field tells me that the industry is turning into something I wouldn't like very much if I were still part of it.

At least the bad things make me so much more appreciative of the many good things and good people I've come across during this ordeal.

Thanks to you all for your responses -- I appreciate every word, and am soaking up all your information and stories.

Dianne

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Dianne,

My appointments with the oncologist are just the "hi-how-are-ya" check up things. I'm not checking in for chemo, etc., just going over the latest scans, Q&A, and updates on new treatment options (if there are any). I normally have these meetings with the oncologist, not with someone else in the office (and he's all mine when he's with me).

I can tell you some of the "personal life" my doctor has - he's a dad, I'm not sure on how many kids, ages, etc., but he has kids...and a wife... BUT, I don't see where HE has much of a life (and he has a "choice", his patients do not). He's on call, even when he's out of the office. He has a satellite office so patients from outlying areas don't have to drive so far to see him - he's in that office two days per week. He does rounds in the hospital, starting at 5:00A (I know this because he called on my grandfather in the hospital). I'm not sure when his practice OPENS because I have afternoon appointments (I'm still working) - but I KNOW that it doesn't close when his office staff goes home. His appointments are scheduled up until 8:30P! I'll bet he doesn't get more then six hours of sleep a NIGHT and then it all begins again.

I wouldn't want his life, I don't care HOW MUCH he gets paid! The man is dedicated, and I'll wait for him as long as needed (I've just learned to take something with me to occupy my time). Heck, if I took small craft projects, I could sell 'em under the business name of "Time On My Hands"! :roll:

I worked for a doctor for about four months - never again. Glad my team isn't like him... :shock:

Take care,

Becky

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Well, I can add my two cents on a couple of things here. Dennis was very fortunate to have a very kind and compassionate oncologist that always took all the time we needed to ask questions or just to chat! He was one of those men that really let it get to him when things weren't going well. He was a very big man...very tall. His staff and patients called him the "teddy bear."

On the other side of the coin, there were issues that were complete nightmares. I would always go with Dennis for appointments and for treatment. It's amazing the things they can let slip up when someone is not there to keep them on their toes. Like Don, I have had to tell the chemo nurses what meds Dennis was supposed to have on certain days. When they would double check, they would find I was correct. This is scary!!!

Also, we have had to wait for appointments...sometimes for long periods of time. but I feel the quality of care we were receiving from Dr. Kayalah was well worth every minute we waited to see him!!!! He always treated Dennis as a very special man rather than just a statistic!!!!

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Well, let's just say that in this practice, that the doors are closed and locked at 4:30, and only those still inside can get out! I will give them credit for scheduling the chemo patients so that those who have to stay longer get the earlier appointments, but they scurry around to get everyone out by 4:30 so they can all go home. There isn't a soul there after about 5:00 -- 5:15 at the latest.

This group of oncologists rotates going to satellite facilities and, of course, I know they make hospital rounds in the mornings, but that doesn't mean that some chemo patients can't be treated while they are doing all that rather than just waiting for hours to see a doctor for a few minutes before starting chemo. Once the vital signs and finger stick are done, unless there is some reason to see the doc before chemo, my vote is to just get the show on the road, and see the doc later. This can't be done for everyone, of course, but based on people I've talked to while there, I bet around a third of the patients in the waiting room at the same time as me could be scheduled this way. And the reason they don't do it like this automatically? "THE PROCEDURE." (gulp)

No medical reasons, no safety or patient related reasons -- it's "THE PROCEDURE," by golly. ("You will be assimilated ...")

I have 4 docs that I see regularly -- Primary Care physician/Internist, Pulmonary doc, Oncologist, Radiation Oncologist. Of those 4, just about all of the negative experiences I've had come from the Oncologist and his office. They are all based from this same Cancer Center which is one of the top places on the planet, so the care I get as a whole is excellent.

I'm sure I'm one of those people they do NOT want for a patient, because I worked in health care for so long and I may notice more things that many of their patients, and might just be more picky. (ya think? :wink: )

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Well, I have been deemed "Trouble" by the onc nurse because I'm so pushy, but she respects me and I can tell that. We have a good laugh, too. I really don't care what reputation I have as long as it works in Lucie's favor. I have come to feel it an honor to do this for her, so she doesn't have to deal with it as well as fight the disease. Don

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Something Snowflake said struck a chord, I was thinking the same thing last time. I was feeling bad for the oncologist, wondering how HIS quality of life is! I know he has 5 kids and I heard he makes time to spend with each one, but WHEN?

Our fist appointment with him was at 8am. He put my mom in the hospital that day to begin treatment (boy was that a shock). He was into see her at 7:30 at the hospital. He was there on a Sat morning at the hospital. SO obviously he works at least 6 days a week, and long long hours. He was there the Fri after thanksgiving, new years eve, etc. How does he do it????

We normally wait a long time too. My dad is the MOST impatient person in the world but we don't mind because we fill privileged to have him as our doctor. And when we are in the room with him, it is just US, he focuses 100%. It is amazing. And there are always emergencies in oncology, nature of the game. For instance, one of my mom's scans showed a blood clot, well the doctor had to get involved right away even though she was not scheduled, which could ahve thrown other things off for his schedule. It is a tough business to be in :)

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Dear Dianne,

Well, I just had a flash back from 9 years ago when I did my chemo,, reading your story. :roll: I ALWAYS waited 2 hours for my Onc Doc too, but his nurses and the office staff KNEW he was a late bloomer so after my first 4 appointments with him, waiting two hours, sometimes longer, I would call and ask the front desk gal, (Diane) "How late is he today?" and she would say, oh........ well over an hour, and I would say, okay, my appointment is at 10, I'll see YOU around 11:30ish? She would laugh and say, YEP, that would be about the time! And that's what I did. Only I had a great OFFICE STAFF to work with and deal with. After 9 nears of doing that, I still keep in touch with all those people, even though I don't see my Onc Doc anymore! :wink:

I am sure you know as well as most of us do, that these doctor's today are over booked! God Love 'em for being there for us. All I can say is when I went through all that 9 years ago, I learned one very important thing in life.

(PATIENCE) God knows I needed to learn that! :)

God Bless Ya, and hang in there.

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Connie, you're probably right, but patience is NOT one of the virtues I picked up a lot of in my life! If I really and truly thought this office was working as hard as it could to at least meet us (the patients) halfway, I wouldn't be so negative about them, probably. But like I said -- when you have limited office hours, everyone goes home at 4:30 and has an afternoon off during the week plus all day Saturday, it's a little hard for me to buy that they aren't just shuffling people in and out of there a bit like herding cattle.

To try and talk with the office staff gets you most often a bimbo-stare and faster/louder smacking of the chewing gum. They want you there at your schedule appointment time because you get the finger stick and vital signs done, then wait for 2 hours. That way, the staff can get their part done, and go home at 4:30, leaving the Oncology Nurses the task of getting everyone's chemo done after a 2 hour wait to see the doc. This I'd understand too if there were a compelling reason to see the doc before having the chemo, but with me there isn't one, and never has been. What we discuss can be discussed during or after, and I could be well on my way.

Here's another tale about this bunch -- on a Saturday when I felt a bladder infection coming on. Every time I go in that office, someone tells me "just call us if you need us -- any time." I called immediately when I felt the first symptoms. Almost 9 hours later, I finally had an Rx in my hand. NINE hours. Well, at least it wasn't something life threatening.

Call 1 I got the answering service and was told they'd call me "right back." After an hour, I called again, they verified my phone # (it was right), and said they'd call me "right back." I told them that if they couldn't help me to please let me know and I'd call my internist, and they thought that would be a good idea, so I did. Finally, someone from the Oncology office called back, and I told her my symptoms. I got in response a tirade about how they couldn't just call something in without knowing what I had, so I asked her what was I supposed to do -- stand in the yard flapping my hands? Go to the ER for a freakin' bladder infection? What??? She finally said she'd call the doctor on call and see what she could do. (Gee thanks.)

I called the Internist and told him never mind. (I later found out that his answering service hadn't contacted him until just a few minutes before I made the 2nd call to let him know I didn't need him to call me.)

She says it will take her at least an hour to get the Rx, and that she will call me back and let me know when it's done. Two and 1/2 hours later, I hear back -- the Rx has been called in.

I get my friend to drive me to Walgreen's, they have the Rx but it isn't ready -- they tell me the patient (me!) indicated they would pick it up after 9:30 that evening. I assured them I was the patient and had told them nothing of the sort since it had been called in by the doctor's office. So, there was a 30 minute wait, and I finally get the meds.

I get home, and find out I have only half of what I need -- I have the antibiotic/sulfa drug part, but not the analgesic part to help with the symptoms. (Anyone who has ever had a bladder infection knows well how it feels - ugh.) I needed the little brown pills that turn your urine orange! Rather than start a 9 hour process again, I opted to call my GYN doc (a friend) and she got that done for me, but it was another 2 hours.

This is why I call all this "institutional discrespect." It's the office staff, the doctors themselves, technicians at times, nurses at times, answering services, pharmacies, etc. Everyone seems to be so worried about their little piece within the system that they forget why they are there in the first place -- their patients.

Dianne

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I hear you Dianne! I have been in doctor's offices where the staff people are just plan RUDE and VERY disrespectful! Wonder what ever happened to COMPASSION and UNDERSTANDING? I guess it's not in the JOB DISCRIPTION! :roll:

Sure hope things turn around for you. I feel your frustration and BOY do I understand! (((((((DIANNE)))))))

Hang tough my dear. At least your sorta ONE step ahead of them, you know what to expect!! Not much help is it?! :wink:

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After the first time or 2, I finally figured out not to let this stuff bother me. Now, I pretty much expect it going in and (unfortunately) am seldom disapointed.

One thing I do notice a lot is that if people aren't trying to schedule around doctors, things go faster and more efficiently. It's when you put the docs in the mix that things get bogged down, and they go into "CYA" mode!

Dianne

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with so many stories I just wanted to share a couple of mine.

My treatment was screwed up from the very beginning. Some due to my HMO, some just the doctors. I've had doctors tell me reassuring things and others tell me "not to waste their time, I was terminal." But I have two experinces that will always stand out.

I had a thoracotomy for tumor evalaution (biopsy, etc.) and was immediately started on chemo. After my chemo rounds were completed I was sent out to Geisinger Hospital (a large hospital in PA about 2 hrs from my house) for an additional thoracotomy to try and remove my tumor. The surgeon told me that he didn't know for sure if he could remove it or not. I asked him if I could see another surgeon that might be more specialized. Well his office moved heaven and earth or so they made it seem in order for me to be granted an audience with this surgeon. This man must have been the busiest man on earth because my visit should have been a candid camera episode. First of all I was alone (never had anyone to go with me to chemo, radiation, appt or surgery-Lucie you are one lucky gal!) so I was at their mercy. The nurse showed me into the room and told me to undress and put on the old paper gown, and wait.... I waited 1 hour. Finally he comes in introduces himself and gets paged. The emergency room... runs out to make a phone call comes back about 45 minutes later. Talks to me again, one of the nurses runs in and tells him she needs him... so I wait. But the best part is when you wait in those rooms at hospitals long enough... the lights go out. Some sort of timer I guess. So every 30 minutes or so the lights would go out and I would be fumbling around in the dark in a paper sheet trying to find the sensor to get the lights back on (no switches, that would be too easy!) he ran in and out of the room 3 times before I talked to him for all of 20 minutes (he wasn't very nice and wouldn't operate on me) but my "visit" last over 4hrs!! 4 Hrs waiting in a little room-half the time in the dark. I could never find any nurses in the hall and there was no way I was walking too far in a paper top. Incredible!

BUT... the best care I had came from the wonderful sweet man (Jim)who gave me my chemo infusions. After I was told my tumor was inoperable they sent me back for chemo in cojunction with my rads. This caring man helped me through my 6 round chemo the first time talking with me while I cried etc. and now I was back and my prognosis was worse. My chemo infusion time was going to be 8 hours! The oncologist wanted me to get a port and go to the hospital each week for chemo. But I just couldn't do it for some reason it just seemed as though checking myself into the hospital would seem to be too much like I was really sick :shock: seems stupid huh?? Anyway I talked with Jim (the tech) and told him how scared I was and he told me that he would do it for me in the office! so this wonderful man would come in once a week on his off day open the office for me to begin my chemo at 7:00 am. he then sat and watched TV with me all day, even shared lunch with me (he brought lunch for us because he knew I wouldn't eat otherwise) and then followed me home to make sure I was okay. he worked with my veins so I didn't need a port and actually made me feel like I was worth something. He was in his 50's with a wife who was ill off and on.. God just seemed to fill this man with compassion. I've been back to see him several times and he is still a sweetheart. When I was the most scared and the most concerned-i was sent an angel.

Sometimes the worst care, sometimes the best care. I just keep hoping that when I'm getting the worst someone out their appreciates that they are getting THE BEST!

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