Improving Your Cancer Patient Experience: Sherri’s Inside Scoop

Sherri blogs at http://www.sherrifillipo.com

Sherri Fillipo has a unique perspective–she’s a former nurse who has been living with metastatic breast cancer since 2012. Sherri spent more than 25 years as a nurse–first in the operating room and then as a patient safety and process improvement specialist. You can read Part One of Sherri’s story here. In Part Two, she offers some practical tips for patients. –Katherine O’Brien, Secretary, MBCN

 

When were you diagnosed with metastatic disease?

My primary diagnosis was in 2010, five days before my 50^th birthday. We were scheduled to take the big 5-0 trip to San Francisco, one of my most favorite cities twelve hours after receiving the diagnosis. We made the trip, although a blur. It rocked me. I had bilateral invasive ductal carcinoma. They stopped counting at five tumors…I am ER+PR+ Her2+ – had bilateral mastectomies and completed my chemo regimen. Later I had reconstruction.

I begged my husband to get me out of the town/state we were living in. Remember I had just moved there and then received my diagnosis? We moved to upstate New York but forgot to leave the cancer in Virginia. Six months after our NY arrival, I was diagnosed with mets to the liver, fall 2012. I made it 22 months off chemo before the spread. Chemo again. Clear until fall 2014. On chemo currently. I am on an odd two-year cycle.

 

What do you want people to know?

I want the world to know if the cancer doesn’t leave the breast, you don’t die of breast cancer.

AND if it didn’t leave the breast, you did not “survive” breast cancer because you were never in imminent danger of dying. (This is what my mother calls my edgy self!)

Unfortunately, while 70 to 80 percent of those treated for early stage breast cancer won’t have  a metastatic recurrence, 20 to 30 percent will–and we don’t know who will have a metastatic recurrence. That’s something many people either don’t know or prefer to avoid thinking about.

I love Dr. Susan Love’s quote: “You can be assured if the NFL is wearing pink, our nation is breast cancer aware!” Meaning, let’s move on beyond basic awareness to concrete action, people.

 

Does being a nurse help or hinder?

Being a nurse both helps and hinders. I have spent my adult life inside hospitals. I understand the strange world of healthcare. I try to be gentle when I am a patient because I will tell you nurses and physicians secretly hate caring for their own. They feel like they are being watched (they are) but like I wrote above, we don’t always speak up. Last week I was at an unfamiliar place for chemo and I knew that there was a protocol that required a 30 minute wait post-therapy. When I broached the topic with my nurse, she told me she had never heard of such a thing and didn’t believe it was true. Ah, there I was in a dilemma. She did not know I was a nurse. I knew what I was talking about but in the end I did not speak up. (I also had a colleague with me who would address that later with the department.)

My frustration not being able to work keeps me blogging and keeps me at the computer researching and reading. I also review articles for the national organization Association of periOperative Registered Nurses (AORN).

My friends and family think I can be too forthcoming, too objective but I cannot help it. I am a nurse. I have a terminal illness. Not enough is being done and I am going to talk and write about it. So, in that sense being a nurse helps put some weight (?) behind some of what I write about.

 

Infusion Centers: How do they work?

I am not going to pretend to understand everyone’s infusion center process. That would be a full-time job! But there are things that can speed up or slow down processes:

• Having blood work as soon as you arrive – this allows the blood to be processed while you are having vitals taken and beginning to talk to your physician; bloodwork will be run stat which is hospital lingo for being completed within 60 minutes. I have heard of facilities which require you come in on a different day than treatment. That doesn’t sound patient-centered to me and it could cause delays on treatment day if they can’t find your labs or if you need to have them redrawn.
• I encourage patients to bring in written down questions. This makes the time spent with their physician much more efficient. I carry a small notebook around with me everywhere I go (read: chemo brain) so I have them ready to go when we are together.
• If you need refill prescriptions, take a look before you leave from home. Write them down in your book. This way when asked, you won’t have to think back on what you may or may not need refilled. While this seems like it is only impacting you, if you think of a physician’s day being a series of dominoes, keeping it efficient for yourself, keeps it efficient for others. Meaning an extra five minutes with you while you sort your meds out in your head added to the next person’s extra five minutes, leaves you if the afternoon patient potentially being seen later than you want.
• Also, if you forget a symptom or a prescription and end up calling back in to the office, remember that offices have different policies. Some will try and snag the doctor between visits and will call your drug in, while other offices will wait until the end of the day and make potentially dozens of calls to pharmacies. If your office does the snag and grab approach, your call has halted the progress of the flow of the center – not for long but when you add up multiple stops in a day, the flow is going to get backed up. *Note: don’t misinterpret, they all want to help. Don’t let this stop you from calling if you need to.

 

Nurses and Techs: Do they understand MBC?

This is my personal opinion and mine alone. Yes, I think the nurses ‘get’ it but if you were to ask my nurses over the past two years if I have pushed them to talk about death and dying, they would shriek, “Yes! A thousand times!” The truth is they don’t want to talk about it. Even though they are oncology nurses. And if pressed, they will admit it. They also didn’t like when I stopped the Perjeta I was taking. In fact my nurse was livid with me. Not kidding. Then the next time we were together she told me I had rocked her boat. That she had never had a patient tell her oncologist that she was stopping something when they weren’t at end of care. I simply didn’t want diarrhea 24hours a day, seven days a week. She told me she learned so much by having to look at someone else’s perspective. They will tell you, I push them – because I can!  Make sure you clearly communicate your quality of life. If you feel as though your concerns or issues are being dismissed, it might be time to consider making a change in treatment providers.

The techs? No, I don’t think they fully understand the nuances of the disease. I wish they did but  in general, you have to think of them as bright but task driven employees. So, while they know the basics of some diseases, I would not expect them to talk at much depth about them.

 

Who do you talk to if you have a complaint?

It depends on the type of complaint. As a good nurse, I always knew I needed to go up my chain of command and for the most part, that would be a good thing to do – at least at first. If I had a complaint about an employee in my infusion department, I would ask to speak to the manager or director of the department. If you are so inclined, you could speak face-to-face at that time or ask for her business card to call her later.

If it is a complaint that is broader or one that you just don’t feel comfortable talking with unit leadership about, you have several options:

• Inquire if your hospital has a Patient Advocate – these people spend their lives talking to patients and family members about a myriad of things.
• Nurse Navigator- Some hospitals have Breast Cancer Navigators who do a wide variety of things for the patient, from assisting with making appointments, to working with financial departments on the patients’ behalf to listening to any issues the patient might have regarding her care.
• My department also has a social worker, dedicated to oncology. This would be a resource.
• You can ask to talk to the Director of Patient Safety – this person is always on the lookout to enhance not only safety but the patient experience.
• You can ask to talk to a member of the Risk Management Department – in some hospitals Patient Advocacy is a part of this department.

 

How do you have a good relationship with your medical team?

I don’t think I have ever been asked this before! Well, you should never have to worry if your nurse or doctor is having a good day or not. They are there to provide care. But the human side of me (the nurse in me?) always tries to interact with each member. I know all too well the behind-the-scenes goings on and I do try to make my time with them pleasant. Sometimes I will say, “Boy, you must be tired. This place is really hopping today.” Or something like that. It humanizes us all.

I think points I made up above would be appreciated by the staff: have your thoughts together, know if you need refills, have your questions/concerns in your head and thank them for taking care of you.

Really, staff love to hear they are doing a good job. If you can, a nice note is always appreciated. (They get photocopied and placed in personnel files and can do wonders at evaluation time!) No need for gifts. Staff can’t accept them anyway but positive words to supervisors, managers etc. go a long way. But only say it if you mean it! If there are problems, see the list above for resolution!