We’ll do what you want. Not.

When did (some) doctors go from thinking of themselves as demigods to being wimps refusing to be decisive and accountable?

It’s quite possible that my medical oncologist is intimidated by me. (I expressly put that in the passive form.) Maybe he’s not used to dealing with knowledgeable, independent thinkers and straightforward speakers like me as patients.

Maybe I’m reading him wrong. We’re both wearing masks and face shields that cut out so much of the important body language.

We engaged in another prickly dialog today before my second chemo (Paclitaxel) infusion. Found myself having to explain the world of doctor-patient relations according to me.

It started when he told me again that the risk of neuropathy (numbing of extremities through nerve damage) was the key side-effect we had to monitor in me. We were discussing whether I should start taking a B-complex. I informed him that I have an over-sensitivity to B6 that can easily lead to toxic levels in my body and, in fact, it has before. He didn’t know what else to offer. Didn’t say he’d look into it.

He just said, “We’ll do what you want.

Well, I must admit, I jumped on that. I quickly retorted with, “No, we’ll not do what I want. I don’t want to be here. We’ll do what is best for my body and we’ll do so together.

I continued, “Our overarching goal, our objective, is to get my body in a shape that discourages cell division and cancer-cell proliferation. To do that, we must be a team.

I depend wholly on your expertise. You know the general protocols in these cases, yet we both know that there is a science and an art to this. So, I depend on you to be both the scientist and the artist, to modify the protocols into a customized, individual treatment program for me, my body.”

“You’re the canvas,” he interjected. Okay, whew, yes, that landed all right.

“Right,” I said. “I’m the expert on my body. That means you listen to me for what I tell you about my responses and concerns. That’s how we are a team.”

Again, I continued: “I want you to understand that my personal objective is to put as little medication as possible into my body. Each drug has potential unwanted side-effects. I want to take just enough to do the main job. If a preventive drug is to avert a 5% risk of something, I want to know about that, and then we decide together whether to go with it or not, with you having the final say.”

The best doctor gives the least medicine.

Benjamin Franklin

We went on to discuss my unpleasant reaction to the Dexamethazone I had taken in pill form this morning. This medication was prescribed to me as an anti-inflammatory to stave off allergic reaction to the chemo. With a new understanding of my objectives, the doctor was able to remove that drug from my now short list of extra oral medication, and add a lower dose to the cocktail before the chemo infusion. Let’s see how that works.

In the end I asked him with my smile hidden under my mask and face shield, “Do you find me to be a problem patient?

No, I wouldn’t say problem.” We both laughed.

“Maybe just a bit makulit.” (A lovely Tagalog word that I poorly translate as persistent to the point of annoyance.)

It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.

Sir William Osler

I would happily settle for a competent professional who has the confidence and ability to actively listen to me.

And I’m curious how this doctor-patient relationship will develop over time.

Do you challenge your doctor(s)? Do you know and explain clearly your expectations?

Or do they intimidate you?

Or maybe you think I was too hard on my medical oncologist today?

PS. Note to self: don’t wear pants with buttons to an infusion session… hard to open/close with one hand when visiting the toilet together with the infusion stand. LOL! #minilesson

13 comments

  • Bravo, my friend! I salute your standing in your power and being clear with your Medical Oncologist. Knowing your body is so important and making your concerns known and more importantly, heard is huge, I pray for your complete recovery daily.
    Hugs!

    • Thank you, Judy! 💮🙏💮 It’s not always that I feel the right words come to me. More often it’s long after a difficult conversation that I think, “I should’ve said…” But this day I got out what I needed to say, and I knew it, so I wrote notes on it right after he left the room. I’m glad I still have my wits about me. Hugs back! 🤗

  • Oh I’m sure I’m a makulit (maybe even mayabang as Sidney says below) 😉 I love the way you approached this! That’s exactly what I’d like to say in such a situation but doubt very much I’d have such words.
    He’s a big boy with a big job and his words were dismissive. Your reaction was right on point!
    Take care

    • Thanks, Jodi. Maybe most self-respecting Westerners would be mayabang, at least to some degree. What I’m learning is that few have the skills to adeptly manage their illnesses. The key challenges include lack of critical thinking and research skills to navigate through the mess of misinformation found online. Maybe another topic to mull and write about 💮🙏💮

  • Cisca, you ROCK!!!!! Your amazing body appreciates every assertive, supportive, team-building act you initiate in order to block those cancer cells. Keep on rockin’.

    Love you muchly.
    -jenniekins

  • I will not comment much on that. You know what I think about doctors.
    Like in every profession you have the good ones, the bad ones and a vast majority of mediocre ones (I believe this applies to all professions).
    But if a plumber makes a mistake this will not be a life-threatening mistake.

    Let’s face it. For most doctors we are just a number. In Europe they don’t even have time to listen to you.

    My brother swears by German doctors, and I tend to agree with him. There is a sense of professionalism, of knowledge combined by high technology that make them stand out.

    You are right that there SHOULD be a partnership between doctor and patient. Again, I don’t have the impression this is often the case.

    Let me also say, a bit off topic, that most doctors are not trained to prevent illnesses BEFORE they occur. You have high cholesterol we will give you statins, you have too much acid in your stomach let’s give you acid blockers, you have water retention in the legs let us give you this or that. There is not much emphasis on natural cures and a holistic approach of the patient. I agree with doctors like Dr. Hyman, Dr. Chatterjee, Dr. Weil and some others that 80% of the illnesses, including cancer, could be avoided (or disappear) trough a healthy lifestyle.

    A lot of cancers are caused due to food and other environmental causes. Cancers that could have been avoided by adhering to a healthier lifestyle. Maybe even some degenerative illnesses connected to old age can also be avoided preemptively.
    Prevention is almost inexistent in the medical field (hopefully there will be a wind of change). Unless you really research for yourself and listen to your body nothing will happen. With prevention less money can be made and less medicines will be sold so who is interested in that (except the patient)?

    I discovered all this initially through the link about the brain that you posted 3 years ago ( I was initially a sceptic but Dr. Hyman blew me away). Then I went down the rabbit hole.
    I know it might sound like I am the victim of a placebo effect, but I feel much better and sharper than 3 years ago (also my mind). My creeping brain fog disappeared, and my memory is much better now. To achieve this, I lowered my sugar intake by 90%, I don’t eat any kind of processed food anymore, I am 80-90 % vegetarian. I eat mainly a lot of vegetables (all colours) and a bit of fruits. I try to have enough sleep and try to avoid stress and I meditate. I also increased my physical activities. As simple as that. I might lack a bit of protein and I am trying to remedy this.

    Prevention is key. Healthy living is key.

    My fear and my visceral dislike of doctors in general gives me the strength and the motivation to skip temptations even if I miss out on a lot of the “good“ things in life.
    The next two decennia will prove if my gut feeling was right or wrong.
    I should have done this 20 years ago but better late than never.

    PS. Filipinos in general don’t like to challenge authority and most people here look at Western assertiveness as being “mayabang” (arrogant). The word “makulit” (teaser/nagging) is cuter, more diplomatic and less offensive but I bet your doctor thinks you are mayabang :-p
    That being said Western doctors also tend to know it all but are more used to patients who are assertive.

    • Edit: It works… 8 minutes is more than enough if my answer is not in book form :-p

    • You gave me my smile today, Sidney… for starting out with “I will not comment much on that” and then proceeding to write more than I did in this post… AND I understand that you in fact agree with me.

      Yes, he might well think I’m mayabang, but that’s his problem. I am the patient-client-customer. I also suspect that a part of him understands that he can learn from me as a patient. Maybe that really is mayabang of me to say. LOL! You are also right that there are cultural perspectives at play, and it’s up to both he and I to recognize and appreciate that.

      I am on the same page with you that prevention is key. But there are many things in our modern environment that we have little or no control over. My cancer (or my Dups) was not caused by intentional bad choices on my part. I’ve lived mostly a healthy life, going back many decades.

      And I’m soooo glad I got you hooked on Dr Hyman… I don’t doubt at all the positive effects you’ve experienced in changing your food and movement habits.

      I also agree with you that all professionals come in a standard deviation of incompetent-competent, and there is more than one scale to evaluate them on. Few doctors are functional/holistic and I’d even venture to say that the more specialized a professional is, the less they know outside their specialty.

      I’m dealing with a medical oncologist. I expect him to know about the latest studies in chemotherapy and related medications, but not much else, like prevention. By the time patients get to him, it’s too late for that anyway. Could he know more about related nutrition and other lifestyle help? Yeah, probably. But I’m not counting on it. Hence my managing my own care. (I even had to correct the prescriptions they give me when the intern made a mistake!)

      Am appreciating you and our dialog. Ingat!

  • My doctor doesn’t believe in vitamins which confounds me too. He says, “if it makes you feel better to take them, do that. But they do not help much. Just eat good food.” I was so surprised he did not endorse vitamins in addition to good food! I prefer to want to feel comforted that they (doctors) have THE answers. I don’t mind the Demi-god personality. I do challenge all the time and ask many questions. Many doctors will say to me either you have never been sick or you have been sick a lot. I hope you build a mutual understanding and that your Doctor can adjust to your style of hearing information best.

    • Joey, I’ve done a lot of research on supplements over the years, and I stick to science research (not “wellness websites”). Many sups really are useless. Good nutrition first. I take only a few (magnesium, boron, cod liver oil) for specific body needs, and that’s the trick, knowing what you need. You need to find out which vitamins and minerals are missing in YOUR body and supplement only those… with wholefood, not chemical, supplements. Multiple vitamin pills are a waste of money.

      That said, I really do not expect a doctor, especially a specialist, to have the knowledge of a functional/holistic practitioner. Hence my insistence on doing my own research and hence my insistence that my doctor listens to me. As I will listen to him. (For instance, he’s right in general about my need for a B-complex, so I have to sort this out. I’m already taking propolis made by bees that are a natural B-complex, but may not be enough to stave off the peripheral neuropothy.)

      The demigod doctor has an attitude problem because they THINK or PRETEND they know it all, when they don’t. That is dangerous.

      I’m strong enough that I will make this particular relationship work. Thanks, Joey. xx

By Francisca

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