Quick Update: Patient Advocacy and Navigating the System

Two weeks down to two days!

After much to do, I was able to secure an allergy appointment yesterday via the phoning a friend method of speeding things along (see yesterday's post on navigating the system). I could not be accommodated at BWH for a week, so I walked across the street to BIDMC and received immediate care. The allergist I saw was fantastic, and called over to BWH to expedite my infusions, for which I am extremely grateful.

With her help, and the heroic efforts of my primary providers, as well as from nursing providers in the desensitization unit, I was able to secure an appointment for my infusions today, which reduced my delay in treatment from what was looking like two weeks, to only two days. 

Downstream effects

Unfortunately, I cannot get back on my original schedule, which pushes the next infusion back by five days, which pushes back my radiation by a week, which means that 1) I will not be able to complete chemo and radiation by the new year (psychologically, I was hoping to leave this mess in 2013, and start fresh in 2014), 2) my move is delayed, and 3) I may not be able to make my delayed start date for my new job. Not to mention how this affects my husband going to his board review course (which now starts the day after my next infusion, as opposed a week later, when I am more able to take care of the kids), my own patients, and all of the other aspects of my life that are not cancer-related. 

I am still waiting to receive an apology from the nursing staff ultimately responsible for the delays. Further, no one has offered to at least give us free parking on the day of the error-- that cost, and the healthcare costs associated with the event, all fell on me (not to mention personal costs, which I outlined in my last post). 

Cancer is NOT my life.

As much as possible, I try to make sure that cancer does not rule my life, but rather is a hiccup in an otherwise full and happy existance. Events like this one make that very, very difficult. I am quite sure that the powers that be who were responsible for this mess will claim that this was a "patient safety issue--" but it was not. It was a communications error, and an error that occurred due to vacation scheduling. My life has already been upheaved enough by this diagnosis and treatment. I do not need additional (and unncessary) obsticles thrown in my way. My new goal (pathetic as this is) is to be able to actually taste Thanksgiving dinner. We will see if I get there.

Small victories: You can make a difference!

I am still waiting to hear back from the patient representative, however, on the plus side, it sounds like the Farber is working on putting a new system in place so that this does not happen to other patients. If I can prevent this torture from happening to someone else, I will count this whole thing as a moral victory.

Puppy love 

As for my family, in the middle of all of this mess, we decided to get a new puppy. We need a little joy in our lives! I am thinking of smugling him in in a bag and claiming he is a therapy dog-- hey, it works in New York City restaurants! I'll have to check Ebay.