Why do so many cancer patients die? Because of the incompetency that surrounds them.

My cancer job started with my attempt to get my weekly chemo local. Also, to try to get a shot sent to me just to make things more convenient since my insurance covers that. Nothing was easy. Every call, every conversation required not only my full attention to details, but my demand to be in control of my care, my demand for something that my insurance will cover, my demand for making things easier on me the PATIENT. Of course, by now I am used to the waiting and more waiting. As on the Big C show, Kathy the cancer patient sarcastically tells her doctor, “thanks for finally showing up”. As a cancer patient, you hope for the one person in your every day chain of events to have some compassion, forget the intelligence because somehow most office staff (outside of UCLA) seem to think you are making a hair appointment or a pedicure. So, after 6 phone calls and a doctor visit, Hoag cancer center called “as a courtesy” (so the nurse told me even though I called there 6 times) at 630 pm to say that my chemo wasn’t going to happen because of a wrong signature, wrong paperwork. Are you kidding me? Not sure how it isn’t their fault since during my last call I was assured by Ms. A that everything was good and all set. I guess another lesson learned that you cannot believe anyone and must get evidence. After tears and debate with the nurse that she  just thought chemo could just happen next week or reschedule (AGAIN not a hair appointment!), I called all doctors on cell phones, Jim scanned and sent emails, and we waited. Luckily, my UCLA oncology doc did phone back to say he was sorry and he would call in the morning, but worst case is that we would have to drive up to UCLA AGAIN. To say the situation is frustrating as this morning it is not resolved is an understatement. To know that nurses and offices just don’t think this is a priority is just beyond belief.  When fighting every day for your life, do you really have to fight for every paper, every signature, every treatment?What cancer patient has the energy to do this daily? (let alone for over  3 years in a ROW!) is there someone on my side? Yes, my UCLA oncologist.Does he have the time for resolving all these hiccups in my treatment…he tries and makes every effort. I still don’t know what I am doing today, but I know I will get chemo somewhere. It is just completely baffling that every step of the way is a challenge. Unfortunately, I am not even talking about the cancer progression. It is the daily chore of demanding the treatment I need that would be easiest for me. This system is so broken that when you meet someone or anyone on your side, you have to be thankful and grateful. There are so few who will be on your side and this is the unfortunate truth. I also cannot forget that mistakes can happen too. If your nurse or doctor doesn’t have the new hospital system down or doesn’t have the attention for details large and small, then a lot can go wrong. It has happened to me and I pay attention and have Jim at my side every chemo to ask too. I refuse to accept mediocrity of care for cancer treatment or for any medical treatment. You shouldn’t either.  I cannot stop questioning or demanding for the best. I just don’t have a lot of energy left to do this and no one can do this except me since HIPPA (sp?) dictates this. So, as the clock approaches 9am, I will begin my battle for demanding my chemo and demanding the right paperwork and signatures. How about if every patient gets hired as a temp worker and PAID for all the incompetence they have to deal with? Again, I am always accepting of  a simple apology instead of the finger pointing and denying that this is “their fault” and somehow it is mine.  Another day, another battle, another fight, and I haven’t even had my pre-meds for chemo.

2 Responses to “Why do so many cancer patients die? Because of the incompetency that surrounds them.”

  1. Karen Moultane Oden Says:

    Joanie, it is heartbreaking and scary to hear about your struggle not only against cancer but against our heath care system. You, Jim and Alec are amazing and such an inspiration. Your cancer job must be a very lonely and difficult. Keep fighting for what you and your family deserve.

  2. melinda Says:

    Hi Joanie!
    My heart breaks for all your struggles! Johanne sent me the link to your blog and I cried reading through every entry. I miss your happy face at Canyon Vista and please know I think of you always.
    Lotsa love
    Melinda 🙂

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