Trust Suckers and Trust Blowers

A person can be either a Trust Sucker or a Trust Blower.

A Trust Sucker functions exactly how you would expect. Trust is sucked right out of you over time. Maybe it’s through belittling, embarrassment, manipulation, non-shared values as to what is public vs. private information, or repeated poor judgment. It feels like air is being pumped out of your lungs and you are left gasping for breath. The sucker sucks because of what he or she needs, not because of what you are doing or not doing. My theory is trust suckers feel very alone and are unhappy with the success, independence, closeness, or whatever it is that someone else has that they do not.

Trust Blowers are the polar opposites of the suckers. Just as you feel emotionally spent after being with a sucker but may not realize exactly why, you feel differently after being in the company of a blower. Blowers send supportive, positive, and uplifting energy your way. Inhaling is easy. They truly want what is best for you. There is an overwhelming feeling of safety with blowers. They are easy to trust because you know a confidence will stay confidential.

I need to dwell with the blowers as someone living with metastatic breast cancer. It’s about not spending essential energy on people or situations that don’t serve my best health. It’s about taking care of myself and not trying to fix someone else. It’s about feeling loved and trusting myself. I don’t have the energy to waste on someone I can’t trust.

I am extremely cautious about whom I trust in my personal life. As I age, I’ve gotten better at reading people and being able to discern whether to trust a person or not. In general, I use the following as guidelines to help make decisions:

  1. Does the person share private information about others when it isn’t their place to share? Someone who talks a lot about others is likely blabbing about me.
  2. Does the person remember what I’ve shared or take an interest in my life? Or are this person’s actions usually self-serving? Why does it matter? Self-serving people will not care when they break a trust because they lack compassion and empathy. They will not think they did anything wrong and that you are the one making too big of deal of things.
  3. Is the person a giver or a taker? Givers have others’ interests at heart. Takers take and move on to the next opportunity.

Cancer has messed with my ability to trust. Before I was diagnosed, I trusted I would remain healthy and be able to work until a normal retirement age. I trusted annual mammograms and results from ultrasounds. When I went on leave, I trusted that the long-term disability company that my school district contracted with was looking out for my best interest. I now feel the goal of this company was to get me on social security disability income so they wouldn’t have to pay as much. I’ve trusted scan results and later received information that contradicted those facts. Facts aren’t up to interpretation.

There are days where I don’t even trust myself.

I’ve struggled trusting medical information. Sometimes I want to scream at the medical world just as I often did with education. There have been times where I’ve felt like a problem or a difficult patient, rather than a fellow human being. I only have minimum access to information posted regarding test results and I feel like information is being hidden from me when I ask for more. It’s my body and I have right to know. I didn’t lie in a scanner for two hours because it was fun. I do better with more information but it is a balance as too much overwhelms me. Then there have been times where I have felt I was not liked. It’s hard to entrust your care to someone when you feel that someone doesn’t care.

One recent instant surrounds a recent cancer medication I took. I had been told it was important to take it consistently in the morning at around the same time for best results. This is true for most medication. However, this apparently didn’t hold true on treatment days because it was more important to make sure labs were all good. It would be okay to take said drug in the afternoon on those days. I had to keep a patient diary to provide data for a study I was involved with on when I took it, what dose, and its side effects. I took the diary seriously. Months later I was told that no one cared when I took the med by the nurse who collected the data. Even while I stared at this person in disbelief, I told myself I would take it in the mornings even on treatment days if no one cared.

I cared.

I still have diaries that haven’t been collected because I am not on that drug any longer and I no longer have contact with this nurse. How important could this data be? What was entered in its place? Was anything entered? I also still have a one to two month supply of this drug that I was supposed to return when I moved off the study. I haven’t been asked to do so since this nurse hasn’t come knocking for it.

Guess who doesn’t care now?

I’m not going out of my way to return any of it. Chalk it up to medical protocols and schedules in the life of COVID. There are more important things our health professionals need to deal with other than my patient diary and unused pills. Yet, I can’t help but question developments in my patient experience when scenarios like this unfold over time. Details deemed important one day were discarded the next. The inconsistency still surprises me.

Trust matters in a patient doctor relationship. I try hard to trust my oncologist, other doctors, and nurses. I do most of the time. I am not the same patient I was at the start of my metastatic cancer diagnosis. I will speak up. I will ask questions. I will disagree. I will persist and ask again if a question goes unanswered. This may not be a matter of distrust as much as needing information so I understand.

I am part of the team.

I expect to walk together.

I won’t follow blindly.

Trust is built over time and is a strong foundation for solid relationships. I will always look for the blowers rather than the suckers in my life whether it’s personally or medically. Whenever there is uncertainty, and there is plenty of uncertainty, I want people I trust with me so we can walk together.

When Your Oncologist Leaves

Two weeks ago my oncologist told me some devastating news – he was leaving. It’s honestly one of the hardest things I’ve heard at an office visit over the years, and trust me, there have been some tough conversations.

He is leaving the UW health system.

He is moving to Florida.

He said he had to go.

What does that even mean?

I know I have been unhappy with some of the management decisions that have trickled down and affected my care. There have been changes I don’t think serve patients’ best interests. There have been facility needs that have gone unmet or approached with band-aids rather than true solutions. There very well could be demands put upon him that I know nothing about and he feels he can’t work in an environment that doesn’t match his philosophy anymore. I don’t know anything for sure other than he is leaving.

He is a GOOD DOCTOR. The best.

I understand he has to do what he needs to do. I can’t be mad at him for doing what is best for him. However, if he’s leaving because of some bureaucratic crap coming down from people who have lost their connection to treating, caring, and curing people with cancer, then I am outraged. My gut tells me to be outraged.

Whatever the reason, I am losing my oncologist.

I feel such sadness and an immense sense of loss. I have that feeling of a small child who suddenly discovers she has lost sight of her parent in a grocery store and stands frozen and scared as she begins to cry. I feel broken like a mirror that has shattered into many shards of sharp glass. The image looking back at me is now jagged and distorted. I feel like a kicker who missed placing the final kick through the uprights by inches in a championship game. Everything feels wrong. I am all out of sorts.

My oncologist has been a constant in my life for more than seven years. I’ve seen him every three weeks for the last three years. I’ve known him for about fifteen years because he was also my mother’s oncologist. I have held him to a very high standard. I’ve depended on him to be there for me. This is someone whom I’ve trusted, respected, and knew was one hundred percent on my side. He is a good blend of medical expertise and hope that every oncology patient needs. He understands I have many questions, I worry, and I’ve always wanted (and will continue to want) aggressively appropriate treatment options. I will choose option A with challenging side effects over option B with lesser effects if A can potentially do better work than B. Every. Single. Time.

He’s gone to bat for me on more than one occasion.

He knew how badly I wanted to keep teaching and helped me keep doing what I loved doing for years. He also told me when he thought it was becoming too tough and unrealistic.

He suggested supplements that have helped me feel healthy and strong.

He encouraged more testing that opened doors to current protocols. Protocols that have been good for me.

My oncologist understood me. He viewed me as a person and not just as a patient. I have grown very attached to him. I will miss him.

Where do I go from here?

I am fortunate for a few reasons. The UW Carbone Cancer Center where I receive care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will continue to receive quality care. I am also lucky that if my oncologist is leaving, he is leaving at a time when I am doing really well. I can only imagine how much harder this would be for me to handle if I were struggling physically. Lastly, my oncologist has taught me well. I’ve learned a lot from him about my health. He has really shaped my thinking since we embarked on our doctor-patient relationship. I daresay I may have rubbed off on him, too. At least I hope I have.

I am not always an easy-going patient. I’ve edited consent forms before signing them. Someone there once compared metastatic breast cancer to a cow that had been let out of a barn. It’s Wisconsin. I added on to that analogy and told him, “Just because the cow’s been let out of the barn, it doesn’t mean it can crap all over the pasture.” I’ve questioned, I’ve pushed back, I’ve disagreed, and I’ve complained. Mind you, I’ve also agreed, supported, amazed, and sparkled because that’s the kind of gem I am. And I am a gem. I like to think my spirit has never been diminished there because of my health status.

Oncologists come and go. I understand this is true, perhaps I have been fortunate that it took this long to happen to me. People move on in the professional world all the time. Yet an oncologist is very different. In my eyes, an accountant, dentist, plumber, chef, lawyer, teacher, or other professionals all have very different relationships with the people they serve. The relationship with a doctor is different, more intense, and more personal. I feel lost, abandoned, and alone. This person just isn’t going to be around and that makes it similar to a death in some aspects. A good friend of mine has had two oncologists leave her, and a third tell her she couldn’t see her again because she has passed enough benchmarks in time and is there is no evidence of disease.

The process has started to find a new oncologist so I have one in place when he leaves in a couple months. If you know me, you won’t be surprised that I’ve compiled a list of requirements my next oncologist must have.

My oncologist needs to be:

  • Accessible
  • Hopeful
  • Positive
  • Empathetic
  • Personable yet professional
  • Up to date on current research and new treatments
  • A lot like my current oncologist 🙂

My oncologist must:

  • Have a breast cancer specialty
  • Keep a very close eye on me
  • Advocate for me
  • Remember I am a person and not just a patient
  • Accept and even enjoy my personality (I’m anxious, I’m smart, I research a lot on my own, I advocate for myself, I can be intense and insistent, I’m thorough, I’m hopeful, I’m fun, I cry, I’m sensitive, and I’m tough).

Sure, I have high standards and I am not going to settle for someone who doesn’t meet them. A good fit is essential for my best care.

I am confident I will find the right fit.

Unfortunately, I feel the time has come for me to move away from the smaller clinic setting I love so dearly and transfer to the center at the giant hospital. I need to put more weight behind a preferred oncologist than my preferred location. Truthfully, I’ve heard whispers that the smaller clinic may not stay open. I wouldn’t be surprised if it closed. It would be consistent with the kind of nonsense decisions that have been made regarding that smaller setting. Then, once again, I’d have to make a move with either a new doctor, a new location, or both. More importantly, I don’t know if I can continue to go to my current clinic once my oncologist leaves. Maybe I need a fresh start. It could be the best choice I can make.

It would be tough for me to leave and make this change. I’ve also grown very attached to my nurses, NP, and even the schedulers and people at reception. Everyone is so friendly and it’s one of the reasons I prefer the smaller setting. I get attached far too easily. Still, I must put myself first and make the decision that serves me the best.

I will be fine. I have time to accept this change, make a plan, and transition positively whatever I decide. As for my oncologist, I will thank him, say goodbye, and be forever grateful that I have been in his care for so many years. He’ll always be my oncologist. I’ll just have two now.

Consider responding:

  • What helps you when you need to make a difficult transition?
  • What qualities or characteristics do you look for in your doctor?