<p>Why, thank you, Mafool!</p>
<p>I’ll have to be sure to remember to show your post to my wife and two sons (ages 20 and 16) when, as happens on occasion (believe it or not), they appear to be regarding me in ways that are, uh, rather less admiring.</p>
<p>(As for dinner, perhaps there will be a time, somewhere down the road, when we can all gather somewhere for dinner to celebrate what I hope, and trust, will be LTS’s good fortune in winning this particular battle.)</p>
<p>We will have to find a very large venue for that celebratory gathering.</p>
<p>another lung cancer “survivor”</p>
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<p>Count me in for dinner. Epistrophy, your last post is so inspiring!</p>
<p>Well, you are the hero of this thread, of course, a gentleman-in-waiting, the the great hero LTS.</p>
<p>I agree with mafool – we’ll need a very large gathering place to celebrate!</p>
<p>Has anyone mentioned Robert Schimmel’s “Cancer on $5 a day: Chemo not included”? It has good reviews</p>
<p>Count me in on the celebratory dinner, too. </p>
<p>LTS, I’m dying to hear the blow-by-blow description of your encounters today…</p>
<p>LTS- I hope all is going well for you today. Sending you thoughts of peace and hope.</p>
<p>LTS, looking forward to your update about today and thinking of you now. Sending positive vibes.</p>
<p>LTS- Sending all my prayers to you today. Awaiting good news.</p>
<p>Of course prayers and “dinner plans” here as well.</p>
<p>(Sigh) I wish I could say that I was able to get someone held accountable, but, the best I can come away with is to say that at least I don’t think that the head of the radiation oncology department is going to be messing with my case very much any more. </p>
<p>Unfortuntely, the call(s) - it ended up being four calls, because they didn’t have her on the phone, so, they had to keep going back to her - ended with me asking that they NOT pursue this further with my doctor in that department; he isn’t in today; I don’t want him harrassed, and I don’t need to alienate the scientist who might end up saving my life. </p>
<p>The director of radiation oncology tried to lie yet one more time by sending back the explanation that I was being staged for “BOTH” possibilities - whole brain radiation, and cyberknife, “just to cover all of the possibilities”, and that there had never actually been any “change”. I attacked this straight on with the obvious response - that this lie was even more ridiculous than the 20 or so that preceded it - and, I got no admission of any kind, instead she tried to say that we should talk to the doctor when he returns tomorrow (sort of like she tried to blame the financial people). </p>
<p>The hospital reps and execs offered to continue the dialog with the doctor tomorrow, but, I pulled them off. I need my doctors focused on helping me win this battle, not playing games and having to deal with the uncouth behavior of a non-physician administrator. I came away with multiple verbal guarantees that no one is going to be permitted to make a decision outside of my doctors, with my approval. </p>
<p>This is really frustrating. I am an excellent communicator. I should have been able come away from this with something more concrete. I am disappointed that I could not accomplish more, and that this person skates away with her terrible behavior.</p>
<p>LTS, it is possible that she will not be able to skate. Maybe she will be dealt with, without you being told about it. I know it doesn’t seem like it will happen, but it is a possibility. In any case, the fact that you pursued this & didn’t let her get away with it may help others down the road. If that is the case, then you DID accomplish something today.</p>
<p>LTS, I agree with Kelsom… you DID accomplish something merely by raising objections. I also stand by my earlier observations – this is probably systemic and common practice, with non-physician administrators routinely making cost-saving decisions that impact patient treatment. One person raising a fuss isn’t going to change the practice. But nobody ever making a fuss is what allows the practice to exist in the first place. </p>
<p>So one person raising a fuss WILL make them think twice the next time around… and maybe they will be more cautious, or handle their financial concerns in a different way. So there will be a change… but as Kelsmom says, the change may not be immediate and it may not be apparent to you. </p>
<p>Anyway, keep strong – we are all very proud of you and rooting for you every step of the way!</p>
<p>LTS, there is nothing to stop you from reopening this issue later, after your recovery, should you want to do so.</p>
<p>A study of patients who filed malpractice claims revealed that many of them would not have filed their claim if the provider had just admitted a mistake and apologized immediately. It’s very sad that the standard procedure is to cover up, deny, lie…</p>
<p>You did the right thing in standing up for yourself and I’m sure other patients will feel the positive effects of your actions. I am so impressed with your determination and energy!</p>
<p>Mafool - thank you - but - it just seems so hopelessly overwhelming sometimes. I really am an outstanding communicator. I did my very best here. The overwhelming majority of persons fighting this disease and similarly lethal diseases don’t have my resources. There typically isn’t the best possible support system, great insurance, a healthy bank account, terrific friends, a great daughter, and you can be sure there is no CC community and no posts of best wishes and no prayers and certainly no Epistrophy links. How in the world is a person supposed to be able to take care of managing all of the aspects of reaching for recovery of their health AND deal with this nonsense at the same time? </p>
<p>You wouldn’t believe what this has been like - doublespeak all the way around, you needed to have brain like a steel trap to catch each progressive lie. </p>
<p>It’s bad enough that it is necessary to read every single report, research every treatment option, datamine for clinical trials, explore all sorts of out-of-the-box therapies, etc., to have to deal with this on top of all else is just a bit much. </p>
<p>O.K., I’m done whining. Back to doing what really matters…</p>
<p>Muffy - edited because I saw your post; I can believe that. What made me pursue this so doggedly in the first place is that this director has just lied again and again and again, each time blaming the blameless or the absent (the financial people, the doctors, perhaps even the maintenance staff eventually would have been targeted), and, when called/caught in each lie, just simply created some other ridiculous story out of thin air. If she just would have admitted to being a serpent in the first place I likely would have let it go earlier…</p>
<p>LTS, have you considered writing this whole thing up (if you have the time available) with all the details of the conversations that took place and sending it to the hospital board? At least that way something would be in some files – possibly even the personnel file of the miscreant director.</p>
<p>LTS, It was my intention that the notion of revisiting the issue at a future date, if you wanted to, might be a way for you to “let yourself up” about not solving all of the world’s or even that hospital’s problems today!!</p>
<p>JEM, I think that is going to have to be a “later” situation. I am leary of alienating key members of my medical team, and I cannot know just how this person may be positioned in the organization. I don’t mean to say that I think for even one minute that one of my doctors might make a different or even adverse decision about my care based on internal political issues, but, I think it’s better for now to have the doctors - and by extension the execs - 100% focused on helping me resolve the cancer. </p>
<p>Later, then, it will be time to address situations like this, but under the broader context of how in the world to even begin to try to fix this mess. Let’s face it, this woman didn’t do what she did because she decided it would be fun to mess with me; she did it because the system is asking - and presumably rewarding - this specific sort of behavior from her. I’d guess today might have won her a raise and a promotion as equally as a reprimand - who can tell??? So I think it can only be addressed in the broader context of fixing the health care system.</p>
<p>As for my part, once I get through this, if I can at least get to remission, I’m going to try to do everything in my power to help those who are struggling with serious illnesses and who lack resources. I’m no Bill Gates and never will be no matter how many gifts God gives me, but, I’m going to write the checks myself. I feel horrible for people who are facing these issues all alone…</p>
<p>Mafool/cross-posted, yes, you read my mind. It’s far beyond my ability right now, anyway. Plus I worked all day on top of everything else…I’m getting very tired of cancer invading the joy that is my work life.</p>