Cross the Line

There are many times in life where people are just trying to get through the day. I am not up for attempting to change the world or my little part of it when I have one of these days. On other days I can be quite formidable. It was on one of these more rebellious days I heard a good old Johnny Cash classic come across the radio – Walk the Line. Do we do what Johnny Cash advises in this song and stay in middle ground area to play it safe? There are advantages to not creating a fuss and staying socially accepted. Respecting boundaries is huge with me. I am not looking to cross any clear boundaries that have been made or have mine crossed. It’s tough for me to hold others to some I have made, but I have gotten better. I can say NO and mean it. Boundaries are meant to mark the limits of an area, to keep us safe, to enable us to play by the same rules.

But there are times you don’t get the notice you deserve if you walk the line all the time. Being a cancer patient is no time to walk the line. Cancer patients must dare to cross it. We must make a fuss because it’s our health that is on the line. Cross it, blur it, erase it, and boldly step into territory where you ask for what you need. New limits may need to be marked and a new set of rules written. These are a few of the times when I think it’s appropriate to advocate for yourself and dare to cross the line:

Cross the line when someone tries to make you feel “less than” because you have cancer, or that you’ve done something wrong because of it, or that if you just did this or that it would go away, or that you aren’t thinking clearly, or that you just aren’t good enough. None of these things are true. There are many pesky questions. These comments are a reflection of the person giving them. Just because I’m thinking about something differently doesn’t mean I’m not thinking about it clearly. It’s insulting to infer my mind is affected because I’m making decisions that don’t jive with decisions someone else would like me to make. I won’t be gaslighted. I believe some comments that fall into this category are made in an attempt to feign that the person speaking them cares or to somehow make themselves look good. MAYBE they are sincerely trying to be helpful, but I don’t get it. You can’t lift yourself up by putting someone else down. Call these folks out while you’re at it. Possible responses may include:

  • Why are you asking?
  • Where did you hear that?
  • That’s not true. (I’m not interested in debating it.)
  • I disagree.
  • Let me answer your question as it pertains to me.
  • I choose not to discuss my health.
  • Choose more of an impolite response of your own choosing.

Cross the line when you feel your treatment plan may not be giving you its best. Patients never fail treatments. Treatments fail them. It’s more than okay to ask questions. Secondary cancer does not equate to substandard or second-rate care. We are not any less deserving than early-stage patients. Treatments need to be given in the spirit of the best possible outcomes as they are for everyone else. Sadness, pain, and suffering are all real feelings that don’t discriminate based on stage or prognosis. We should not have to ask for compassionate care or if something more effective may be available, but if these things aren’t there, cross the line. Keep asking if new treatments are available. You might not know if you don’t ask. Doctors may not know you’re interested in other options if you don’t speak up. Doctors may need nudging. Lots of nudging.

Cross the line if you do or don’t want to do something. This could be socially or medically, especially if you have questions about plans directly involving you. Remember it’s okay to change your mind. Everyone can change their mind and it doesn’t mean things have taken a turn for the worse. Everyone’s interests change and evolve over time. You can have energy one moment and none the next. You have a right to talk more about your treatment if concerns and questions have cropped up after agreeing to or starting something new. You are not being difficult. You are being an informed and empowered patient, a good patient in my opinion.

Cross the line when someone talks about someone who has died from cancer and then tacks on in a hushed voice that he or she was Stage IV. I mean no disrespect – but withstanding complications of surgeries or infections – of course they were Stage IV. It isn’t exactly a newsflash. I know I’m sensitive to those words. It always strikes me as somewhat insensitive and unkind to whoever died. Why does it need to a qualified by a stage label? Someone still died. Yes, life changes with a metastatic cancer diagnosis. I feel the time has passed, long passed, for people to whisper the words “Stage IV” after someone’s name. I’d feel better if they expressed more anger and outrage, asking instead WHY or HOW in this day and age hasn’t more research been directed to lower the number of deaths from metastatic breast cancer. THE NUMBER OF DEATHS HAS NOT GONE DOWN SINCE 1995!! I haven’t figured out a way to effectively address this growing annoyance I have with the whispers. Perhaps my first step is to find out why it matters to them to include the information of a Stage IV label with a lowered voice before I go on the defensive. It’s possible I’m misinterpreting their intent based upon the lens from which I hear it. I could then go on to explain how I’m living strong with a Stage V mindset.

I appreciate that people care about me. Most of the people in my life are not intrusive. Those folks get the boot. I have reached a point though that when I encounter someone who is either speaking about me or for me by way of assumptions or falsehoods that I won’t let it pass and be quiet. Perceptions about secondary cancer must keep changing. I felt such a wave of relief and support from a friend I had lunch with a month ago who listened with empathy as I shared how I felt about comments I heard about those with Stage IV. She said she knew LOTS of people who were living years past the five-year survival mark. She should know people like me because she’s a director of development with ties to events and donors at the hospital where I receive treatment. I know there are more people like me who are living by example and changing the perceptions, definitions, and conversations around metastatic cancer.

I am done walking the line.

Patient and Family Advocacy

Patient and Family Advisory Councils connect patients and family members with employees in the healthcare system. Members provide input on how to improve the patient and family experience in a specific area. PFAC is the shortened name for these groups. Patients and family members who have been caregivers for patients are called PFAs.

PFACs are a way for providers to gain viewpoints from the perspectives of those on the receiving end of care. Participating in patient and family advisory committees gives patients and family members the opportunity to become advocates for their own health care and that of others. It is also an opportunity to give back and stay involved in the health community.

I joined a PFAC oncological group in the spring of 2015. It focuses on any aspect of oncology and welcomes participants who have been affected by any kind of cancer as a patient or family member who has received care in the UW Health system. My understanding of what happens on more of a business level of health care has been deepened. Surveys are often used to gather and then aggregate information from PFAC members ahead of scheduled meetings. I have completed many. There usually is a guest presenter on a topic.

Truthfully, I often feel as though final decisions have already been made and the purpose of patient/family input is simply to agree with what is being presented. As a result, I often feel somewhat disagreeable when I say something different from what I think they want to hear. Yet, I’m not there to make them feel good and/or validate their work. I’m there to offer my honest feedback and to advocate for the best patient-centered care possible. I’ve also gleaned a few insights into possible options from which I could benefit. Those are added benefits to my participation.

I am one of two members in my group who receives care at a building outside of the hospital that offers cancer treatment in a smaller setting. I find smaller is much more personalized and this is the right choice for me. I am also the only member of the ENTIRE group who is under current treatment. It strikes me as odd. I would think there would be a higher need to recruit current patients for input when it’s THEIR CARE being discussed. My status gives me a unique perspective where I can lend my voice to what I currently experience and my observations.

I thought some readers might be interested in some of the topics we’ve discussed over the past four years. I do not feel I am violating any privacy policies by sharing in general terms. I will not refer to anyone by name. My purpose is to provide a glimpse into the world of Patient and Family Advisory Councils. Sure, I have some opinions and they are mine to share. I am confident you’ll know those when you read them.

The following are a few of the PFAC topics that have been discussed:

Clinical Trials

  • A speaker was brought in to present information with an accompanying PowerPoint. The presentation on clinical trials was largely informative. Time was spent providing feedback on the cancer center’s website dedicated to trials. Feedback was solicited on how to raise awareness of and participation in clinical trials, and discuss reasons why patients may not choose to be involved in them.
  • I perceived the hospital perspective was that patients often do not want to be involved in trials. I believe there are reasons that validate that perception. Personally, I would not choose to be involved in one if I may be in a group that is not receiving the strongest medicine available as compared to another group. It’s too big of a risk for me. Many trials are changing so all patients in a trial receive the drug being tested. If patients understand that, then participation may rise.
  • Trials have also become very specific because of targeted treatments. Often times, it’s the trial sponsors who have restrictions that exclude interested patients because patients do not fit a sponsor’s requirements for the ideal sick patient. Patients are too sick, not sick enough, or something else. Patients would like the opportunity to participate (and potentially greatly benefit), but they are told they cannot. In the end, it’s the sponsor rejecting the patient, not the other way around.

Chemotherapy Preparation

  • One evening, oncological pharmacists presented information on why patients wait so long for their chemotherapy drugs. There have been days I’ve waited three hours from the time after an office visit until my drug drips into my body. It takes considerable time to make chemotherapy for an infusion. Pharmacists can’t make it until the oncologist has released the order for it. This is dependent on the patient’s office visit and dictated by results from labs looking at blood counts and metabolic functions. Kidney function, white cell counts, liver enzymes, and other numbers or functions out of kilter could delay or cancel a treatment. Each drug is made specifically for a patient. Dosing is specific to a patient’s needs and once made it can’t be used on another patient if the intended patient is unable to use it. It expires after about twenty-four hours. Money is lost if it goes unused. My blood boils a bit at this economic consequence because in my world patient care outranks profit every single time. Hiring more pharmacists would lessen the time a patient has to wait. Patients would get what they need more quickly. An on-site facility to make the chemo would be helpful, but apparently this isn’t deemed essential. Again, financial factors are at the root of these decisions. My blood pressure can only climb because of them. Don’t mind me, I’m just a patient.

Genetics Clinics

  • On another evening, a presenter gave an overview of genetic counseling and progress in identifying genetic markers that increase a person’s cancer risk.
  • The benefits of DNA banking were shared. I was somewhat unimpressed as it seemed the biggest benefit would be to the company providing this service. DNA banking is an option available outside of genetic counseling. Many questions float around in my head concerning how my DNA would be used.

Appointment Scheduling

  • At first, this didn’t seem like a terribly pressing topic, certainly not one to take an entire PFAC meeting to discuss. But it did.
  • The chemotherapy managers and oncology directors were gathering input on which patients needed to be seen by oncologists and which patients could be seen more routinely by nurse practitioners. Who was considered urgent? I get good information and a slightly different perspective when I see my nurse practitioner, however, I will always prefer to see my oncologist over her. He has more expertise.
  • Other members in the group nodded their heads and quickly agreed that this was a great idea to see a nurse practitioner more frequently. It isn’t from my perspective. This is where my situation as a current patient is so important. Doesn’t every cancer patient think his or her care is urgent? I am just as urgent and as important as another patient. It seemed to me like some patients were being labeled as more valued than others. The thought was perhaps patients who were further out post-treatment could be seen by a nurse practitioner if they only came in once a year. Well, no, these patients need to be seen by an oncologist, too. Recurrence happens even when patients have passed a five-year cancer-free benchmark. I’ll say it again: the oncologist has more expertise. A nurse practitioner may miss something that an oncologist may notice.

New Clinic Design Planning

  • A new campus is being designed on the far-east side of Madison. An interior designer presented current design plans that were extremely comprehensive and detailed. I was impressed with what is being planned. The plans are patient-centered and inclusive to coordinate many aspects of care in one setting.
  • Input was sought after for any aspect of this clinic. I felt the designer presenting genuinely considered all comments were important whether they were about parking lot locations to what kind of treatment room options would be enjoyed or needed (open, semi-private, or private). I seemed like the lone voice expressing how important private treatment rooms were for patients. As a patient, I have intensely private discussions about my health with my treatment nurse while receiving treatment. I don’t want to share that information with others, nor do I want to hear their confidential conversations. HIPAA laws exist to protect patient health information. I expressed very strongly that privacy must be ensured in treatment areas. I was thankful someone agreed with me who had called in for the meeting. Even if privacy were not a concern, cancer patients have compromised immune systems and should not be sharing space with others or others’ family members who are sick and may or may not be showing symptoms of a virus.

The recommendation in my group is to serve in a PFAC group for five years and then make room for someone else. I don’t know how closely that guideline is followed; some members in the group have been there more than five years already. I do enjoy the other members who have been former patients or caregivers for family members. Everyone brings something different to the table. We volunteer our time because we feel we can make a difference. We all advocate for the same thing – the best care for patients.

Consider responding:

  • Have you ever advocated for change in your health care or that of a family member? How? What happened?