Corkage fee for port access, not every oncologist is the same, patient rights and the ride continues

First, I am still awaiting my results from my scan from yesterday. Let’s just say that the scan went a bit into uncharted waters which is saying a lot since I have been doing this 2010. When I arrived, I was met with a favorite technician, but then things went off track. I had my power port card (VIP card that comes with your port after surgery plus the free booklet and bracelet). I should have gotten a clue when the technician told me several times to show the nurse my VIP card. I have memorized the info and have been fully educated by my UCLA nurses on gauges of needles. I saw the needle which was larger than what is normally used plus the adhesive bandage is something I am now allergic to. I asked the nurse and told her of my allergy and she kept saying that this was all they had. I explained that I cannot have that bandage, but she ignored my request. Meanwhile, I noticed that I was sitting in a pool of my own blood as she forgot to cap the line. I asked for paper towels, but she was arguing about pulling of the adhesive that was now causing itchiness. Great, just how I wanted to start my scan: bloody and itchy. Then, my favorite tech returned with his face in shock and got the paper towels and put the cap on to stop the pool. I demanded a new nurse and told them that I was going to walk over to the cancer center dripping blood so I could get the paper tape. After this, nurse continued to debate me, so what else could I do is cry and demand for my hubby. My favorite tech, ran to get another nurse since he knows I cannot sit still for hours with a rash on my chest spreading to my neck. Of course, nurse B said it was only a bit red. Last night, I saw the rash grow as I told them it would, but who am I ? Just the patient! After calming down with the help of my fav tech who knew if he brought Jim in that we would have left! Especially if Jim saw the pool of blood on me….he would have assumed a crime scene gone wrong instead of a simple scan procedure. Thanks to my tech, all proceeded. Nurse B changed adhesive to paper tape products and crime scene was cleaned of all evidence. After the scan, fav tech asked me a zillion questions as he said to get as much info for the radiologist, but we did our analysis paralysis (what our family is famous for) and came to no conclusion. Nurse A decided that she should dispose of my radioactive line in the sharps container (okay very frightening), but tech saved the day. Then to top it all off,nurse A told me that next time I should bring my own needles, bandages etc…because this scan is a BYOS (bring your own stuff) and then they will only charge you a corkage fee of $500 to access your port??? Come on Nurse A? Again, I think of other cancer patients who get this type of scan. am I the only one to get the ignore the rights of a patient treatment? You know what I will do with this info…oh yes, COMMENT card time and yes, I have names of all involved.
While waiting for results and sending numerous emails to my doc, he did call to explain that this new doc who is arranging for my chemo at Hoag cancer center only goes by the book. There is no personalized approach as she treats the average patient.I know by now that a stage IV, 3 years of treatment should not be treated like an average patient. So, I don’t know if I will be able to get chemo and this doc thinks it is better to look at one number than the whole picture of me as a patient. I am not following the logic, so it is better to have my cancer get worse than take a chance and give me the chemo based on my number being off by .03 ???? Plus, they can give me a shot to stimulate my counts, but instead it is better to have my cancer grow and I should become sicker? How does this make sense. Again, this is why you must find a doc who hears you and understands you and looks at all of you as a whole patient. I don’t need these extra bumps in the ride. I do have a wonderful internist who will override and do what I need with just a word from my doc. Does this always have to be so difficult? Again, what do the other people do? Is this why the statistics are so poor because many just give up the fight for their rights or aren’t lucky to have a doc who will fight for them? Pain, frustration, and suffering aren’t just side effects of chemo, but the side effect for fighting for your rights as a patient. My fight continues as I am off to try to get chemo at Hoag Cancer Center…

2 Responses to “Corkage fee for port access, not every oncologist is the same, patient rights and the ride continues”

  1. Johanne Padilla Says:

    I am so sorry that you had to put up with all that BS with your scan. It sucks that you had to deal with it. You are so amazing and strong. Keep the faith my friend. You are in my thoughts daily. I miss seeing you around Canyon Vista. Thanks for blogging- your writing is so insightful and touching. Take care beautiful girl and keep posting.

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