Tapping Into Resources

When we first met with my surgeon following my diagnosis, she gave us a big fat binder filled with so much information and useful resources.  There were tabs to separate all the information and keep track of doctors and appointments.  The binder also contained more business cards, flyers, and booklets than I would know what to do with.  I spent the first few days post diagnosis with my nose glued in this binder.  The first few weeks, I was so good about documenting all of my appointments and lugging the binder with me wherever I went.  I have sort of lost track of the binder these past few weeks. 

There was a business card for a nurse navigator in the binder and it was recommended that I make contact.  The nurse navigator along with a social worker help me create my team and game plan.  They are just there for me during my entire course of treatment. The nurse navigator acts as the team leader and provides support and education and helps the whole process make more sense for me. 

So, I never really got around to calling Nancy.  But on December 30, she called me.  I didn’t call her back until January 4.  Once I hung up the phone, I immediately wondered why I had waited so long.  Nancy suggested that I attend one of the workshops called “Beginning Your Breast Cancer Journey.”  These workshops are held monthly.  By the time I was diagnosed in November, the workshop had already passed and December was just too crazy.  The next workshop was scheduled for January 11 and so I put it on my calendar. 

The workshop was held at the Breast Center.  I was hoping to learn something new and secretly hoping I’d meet some other women going through the same thing as me.  I was sure that if I did meet other women, that I’d probably be the youngest one.  Well, I was the only new patient to attend this month’s workshop.  There was snow in our forecast for later that day, so it’s possible that maybe some people just didn’t want to risk driving if they didn’t have to. Since I was the only attendee I had the opportunity to talk one on one with a social worker and an employee from the DE Breast Cancer Coalition.  Nancy, my nurse navigator was supposed to be there too, but she had a death in the family.  Usually the session will review the different diagnosis stages, treatment options, and general information about breast cancer.  Given all the info that I had easily blurted out, the women knew that I did not need this information and so they just sat and talked to me.  They listened to my story and asked me some questions.  Finally the social worker (Michelle) asked if I had looked into some of the other resources that the hospital offers.  Umm, no.  This is where I finally admitted that I can’t do this on my own.  Up until this point I was just so focused on learning as much as I could on my own.  But I’m starting to get flustered when I can’t answer questions or accurately defend my decisions.  I had recently called UPenn to try to schedule a second opinion appointment.  The new patient coordinator asked me what kind of biopsy I had.  Well, I couldn’t remember and I just went blank.  The coordinator was abrupt and seemed shocked that I could not remember.  I finally screamed into the phone, “I’m sorry, but I’m under a lot of stress.  I’ve never had cancer before so I just don’t know what I need to do.”  She still didn’t warm up and I still haven’t gone back to check my notes and see what kind of biopsy I had.    

Alright, back to the January 11 workshop/session thing I went to…Within one hour, I had told two strangers my story, had been placed with a peer mentor, and had been introduced to a psychologist and a nutritionist.  Before I left the center, I made appointments to come back and meet with both the psychologist and nutritionist.  So, I was kinda bummed that I didn’t get to meet other BC women, but I’m really glad I kicked myself out the door and got my butt to that session.  I found that one hour or so to be a great use of my time and I’m so happy that I finally decided to tap into some of the resources available out there.  And it was so great to have people who are not emotionally connected to me just available to listen.  Although I’m getting tired of driving back and forth to Christiana, I think that meeting people face to face rather than talking on the phone was definitely more beneficial to me.

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2 Responses to Tapping Into Resources

  1. Jen Rasmussen says:

    Wow Lex, you’re such a trooper! Glad the surgery went well and have been thinking about you. I’ve learned from doctors (and their receptionists) that we don’t go to all of them because they’re nice- it’s a shame so many of the best doctors have such poor bedside manner. I know UPenn has such a good reputation…have you tried Johns Hopkins??? We need to reschedule our lady date. Let me know what works for you.

    • Thanks Jen! I’m still keeping my appt at UPenn as it was not the doctor I was speaking to on the phone, but just a coordinator. Hopefully, I won’t get bad vibes/service from the doc! I’ll email/call you about our lady date. xoxo.

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