<p>So, my day starts with a call from the radiology department. They need to repeat the MRI with contrast, so, when can I come back in? </p>
<p>I asked, why didn’t they simply do it yesterday, when I was already there, and even had the IV in, and was ready to go? </p>
<p>They said they called my doctor but he didn’t call back until later in the afternoon. I said well he ordered it with contrast, why the need for the call to my doctor? </p>
<p>Anyway, I asked a few more questions but I am no closer to understanding why they didn’t use constrast yesterday but today they will, so, I will go back on Monday for more of this.</p>
<p>LTS…sorry for the frustration, which you don’t need on top of everything. It does seem odd that he HAD ordered the MRI with contrast and then they didn’t do it that way and maybe questioned the order and tried to call him but indeed, he really did want it with contrast. Oy. </p>
<p>“I said well he ordered it with contrast, why the need for the call to my doctor?”
OY!! Silly you with all your questions.
wonder who is going to be the first to stand up to explain to the patient why the complete studies weren’t just uhh. completed as ordered…somehow…I see everyone taking one step back.</p>
<p>I would make very sure that they don’t charge you for 2 scans! You must be tempted to charge them for your wasted time - I’m sure you have a high hourly rate!</p>
<p>Unfortunately, I see that every day. CT, MRI, X-rays being repeated on at least 25% of patients. It is probably one of the largest insurance scams
I don’t know how the insurance works, but I bet you, if your deductible for the year is already exhausted you will be charged twice, and the insurance company will pay without even thinking twice. This is one of the ways for them to raise our premiums across the board! My insurance about doubled in the past 10 years! Did my wages???</p>
<p>Well…I went and got more scans. At first I told them to reschedule me for Monday, but, then decided I didn’t want to be worried about this all weekend, so, I went and got more. Scared me to death when the attendant said the radiologist would like to see the original films from the January PET. Then I realized, why be frightened, the cancer diagnosis is already on the table, the worst possible thing that could happen is confirmation of another met site, and if that happens, my doctor has a trick for that. But telling myself that doesn’t help much and so I am still worried. </p>
<p>Epistrophy, you may very well be right. The woman does have a daughter same age as mine (she volunteered this). But it’s irritating, and not helpful at all. I could understand if I had invited that sort of discussion, but, I didn’t. Nor would I have, considering there were other patients in earshot and I am sure several complete strangers overheard my health history and my diagnosis. </p>
<p>In a way, that is one of the most irritating parts of this. When we talk to estate planners, bankers, business continuity people, etc., they will typically ask “what are you trying to accomplish”. I will respond by explaining that I have a health issue and the prognosis is generally very poor. They will then respond by laying out various options so we can choose. What they do NOT do is make unsolicited comments about how hard this all must be, etc., for which I am very thankful. I am trying to do business, not to have an emotional ejaculation, and to me, going to get a scan is just another business transaction in the process of fighting this horrible disease. But it’s the healthcare environment where people step over the line, continuously. Just like when I picked my film in Miami - I didn’t ask the clerk to read the file, or to comment, and I certainly didn’t invited her commentary on it and her promises to pray for me. All I did was show up at the counter and ask for copies of my scans. Why not just give me what I came for, without editorializing on it? Those comments are supposed to make me feel better somehow?</p>
<p>Faline2, re comments, this (CC) is a different environment. A health care professional who does not have a relationship with me, who I have not chosen to interact with and who is merely completing an operational task doesn’t really have my permission to open dialog to personal issues, such as how hard things must be for my daughter. The last thing in the world I want to do is focus on that, especially in hearing range of other patients.</p>
<p>LTS,
In my case, it was another patient who came over to me, took my hand, and lamented how badly she felt that I was so young to have cancer. I had been so strong thru everything, but her sympathy cut to my core. After months of holding it together, I fell apart when alone with my surgeon.</p>
<p>After similar experience with MRIs, I insist they be contrast. Once I drove to MDs office to get definitive prescription. We do learn.</p>
<p>So many things in life require self-education–and after you’re an expert, you may never have to use your knowledge again. Building a house (or planning major renovations) is one. Battling a major disease is another. Too bad patients apparently can’t rely on health professionals to all be competent professionals. </p>
<p>(Not to impugn the reputations of most of them. And they are human and make mistakes, too. But still.)</p>
<p>LTS, the clerk’s promise to pray for you brought back a memory. An adminstrator in our dept was diagnosed with cancer (colon, I believe) almost 20 years ago. At the time, she was in her early 30’s and the picture of health. The prognosis was not good. She was about to have surgery. Her secretary, who is very religious, was going around crying, saying that she was afraid that the administrator was going to die and go to hell because she had not been “saved,” and loudly proclaiming that she was praying for her. Needless to say, this was not at all helpful to the young woman who was facing a dire prognosis. She went through the surgery and chemo beautifully, and maintained a cheerful attitude even when lung mets were discovered a year or so later. She is still in the same job and in apparent good health (although still not “saved”).</p>
<p>^^ not really relevant, the secretary was a close associate and not a stranger intruding into personal space, but I like the “surviving despite grim prognosis” aspect, too.</p>
<p>LTS, I agree with what epistrophy so gently suggested in an earlier post regarding the technician’s remarks about it being hard on your daughter and so forth. I think that those in the health profession are naturally ‘caregivers’ who usually have very warm intentions. I don’t think it is just like a business transation with a financial advisor. I think that this person likely MEANT well and was trying to be compassionate. The problem arises, however, in that you are the one who is ill and none of us, nor this woman either, really knows what it is like to be on the receiving end of these well intended compassionate statements. And so, you are telling us that it did not work positively for you and rather reminded you of all that is already upsetting to you. I just don’t think this woman intended that and probably was trying to reach out and be understanding as a mom herself and who is in a caring profession. It is just that her words did not work for you and I understand how that was so for you. While well meaning, often such folks don’t know what may be the right thing to say and think they are saying words of compassion, but then the hurting party feels quite differently on the receiving end. While I am sorry that her words were so upsetting for you and that she crossed a line for you, I hope you might consider that in a helping profession, that she was trying to be compassionate in a way that she thought was appropriate but it wasn’t fine for you and only you know what that felt like. These folks deal with a lot of people and what touches off one person in a bad way may have been just what another person wanted to hear. I suppose that they could just stick to business, but my guess is that the nature of their job is to reach out and be “personable” and compassionate. Unfortunately, only you know whether the receiving end of it was comfortable or not and in this case, it obviously was not. So, I am sorry this happened for you, even though I think the woman might have meant well.</p>
<p>LTS, I now totally get what you are saying about the editorializing, even though I didn’t understand it yesterday when you descried it. It must be very difficult to have to deal with people’s various and unsolicited reactions to your situation all day long. You don’t need more burdens and it would be nice to have medical transactions be more businesslike and non-emotional, like the way you describe the attorneys.</p>
<p>I went in for surgery 2 weeks ago and had to do a bunch of pre-surgery lab tests at the hospital and not once did someone say “oh this must be so difficult for you” while they were drawing my blood or doing a chest x-ray. They were nice or funny or rushed or businesslike but they didn’t try to connect with me on an emotional level and I actually appreciated that. Yes the idea of this unexpected surgery was difficult. These things are. Yes I was nervous and sad and scared. But I had my H and close friends to support me emotionally (just like you have your D and friends) and any kind of sympathetic response during a test by someone who didn’t even know the situation would have just been troubling and irritating at that point. Kind of like someone in the middle of disaster preparations running around in circles saying “isn’t this horrible everyone?” and wasting time rather than just doing their job. Ugh. I’m sure the lady meant to be comforting but just didn’t realize what she was doing. Still. You have every right to be angry. A routine medical test should be performed in a business like way unless a client is obviously emotionally distressed and seeks comfort from the technicians. The lady read her own fears into your situation and her response unfortunately was self-indulgent, at your expense. </p>
<p>I’m sorry this happened and am wishing you the BEST possible news on your new scan.</p>
<p>On the other hand…LTS is a remarkable individual, there may be some people who appreciate the sympathy/empathy/interest/hugs…it is so very difficult to know. </p>
<p>An example, if you are walking down the street and see a severely physically handicapped person, if you look and make eye contact are you staring? If you do not look and make eye contact are you not acknowledging them? I have had both discussions with people, it is always tough to know who wants sharing and who wants privacy- I do think medical professionals should refrain from breeching the privacy policy.</p>
<p>My Dad has had several cancer things going on, first prostate and now a rare abdominal one, he wants to talk to every one all about it, any one will do, he loves to talk, goes to cancer support groups and shares his story with any one who will listen and listens to every ones reply stories. He also tells all the people he meets about my mom’s breast cancer story and she gets furious, she is very private, does not want to talk to any one about it and feels it is her story to tell or not, not his. He should not be sharing her story of cancer with his volunteer buddies around town. She was caught early and it is no horrid chemo story, so he does not need support dealing with it, he just finds it all fascinating and has no sense of privacy.</p>
<p>The same clerk or fellow patient that would thrill my Dad and infuriate my mom, so what do we the public do to react the best way to the people with whom we deal??</p>
<p>Well, as well meaning as someone might be, that doesn’t mean the person isn’t instrusive/annoying. Besides, LTS is entitled to her reactions. She is only telling us.</p>
<p>And how about how difficult it is on her, one of her greatest difficulties being worrying about her daughter.</p>
<p>bookworm- it is especially difficult to deal with sympathy isn’t it? So often we are so strong unitl some one is nice to us, then we dissolve and not always at the best time- sorry that happened right when you wanted to be strong and focused on your interaction with the doctor.</p>
<p>I would also imagine LTS is dealing with a variety of comments each and every day, what might make sense in the contex tof one comment can become stressful when it is repeatedly occuring, over and over every day. I would imagine she is just tired of ANY comments from anyone.</p>
<p>I try to treat people in a way which allows them to be functional in the situation I encounter them. A few years ago, an acquaintance through a business establishment had lost her husband and teen-aged son (murder/suicide) about a month prior. I had heard about it from her boss, and I could not go in there without acknowledging her grief. So I took a small flowering plant with me, handed it to her saying, “this is a meager gesture, but I hope it will make your day a little brighter”…I hugged her, and then we went on with business. Her boss told me she had appreciated the acknowledgement. </p>
<p>It is hard to know what to do, how to handle the human connections. Most people mean well, but they do not have enough personal experience with such things to know how they would need to be treated. Some do not, however, they are voyeurs to other’s suffering and angst…somehow they feel better about their own lives and well-being in the presence of the worries of others. </p>
<p>Inevitably through this journey you are encountering others who do not know what to do, and they make the wrong choice for you…usually because it is such a strong reminder of the things about which you are trying so hard not to think. Hopefully all of us will learn a little more and do better for each other from these difficult lessons.</p>
<p>Hugs (and a small bright flowering cyber-plant), LTS. Lorelei</p>
<p>This is a tough question, LTS, thanks for helping all of us.</p>
<p>My uncle - husband of my mother’s sister - just died of Parkinson’s and pneumonia on Monday. I called my aunt, and just said, I heard, I’m sorry. Then I asked her did she want food? She said no.</p>
<p>I was thinking, oh well, I will just bring it any way. But then I thought, well, actually knowing her, she might just obsess if it didn’t get eaten. In other words, I had to really work my mind to understand her, not just my own urge to help.</p>
<p>Seems to me the issue is knowing what to say for the basic acknowlegement, and how to really listen and watch for the response to know if you continue.</p>
<p>I can imagine, were I in health care, that the many many people I would see with illness might sometimes just touch my heart. And I would hope in that case, I could still put my patient’s needs above my own, and only say what was suited to that person.</p>
