Just some words from someone who’s been there, shared with the hope of helping other patients avoid so much unnecessary suffering…
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Google at Your Own Risk
Advice for cancer patients: If you really want to make yourself sick…
… google your symptoms, possible diagnoses, treatment options, treatment side effects, drug data sheets, possible complications, ways to die, and life expectancies.
The business model of websites like WebMD and Healthline.com is clear: Make lots of money by infiltrating your day with endless clickbait advertising, almost none of which is useful and much of which can be dangerous.
You’d think that places like NIH, Wikipedia, and Mayo Clinic would provide well-organized libraries of accurate, useful, up-do-date, empowering information that is sensitive to your needs as a human being.
Instead, what do you find?
- Information that’s either too narrowly focused or too general to be useful.
- Incomprehensible medical jargon.
- No insight at all into the differential diagnosis process.
- The occasional horrifying image.
- Alarming language that sends your stress level through the roof.
- Even more things to add to your already long list of things to worry about.
Perhaps this is the way it has to be in any complex, dynamic arena such as cutting edge medicine, but no matter…
Because, in my experience, none of my internet searches answered the simple and obvious questions (too many to list here) that might have empowered me to act or given me some peace of mind. Quite the opposite: They filled my head with outdated, useless, and often misleading “information” that left me even more uncertain, anxious, depressed, and disheartened than I was before. Furthermore, none of these searches even remotely helped to diagnose my cancers or to define a path forward. On the contrary, most were a wild goose chase that delayed the correct diagnosis—postponing treatment and prolonging suffering.
Rant complete, I leave you with three pieces of advice:
- The internet is not the place to play doctor on yourself.
- You are an individual. Your case is unique. Nothing on the internet appreciates this fact. (Perhaps AI will change that someday).
- Find doctors who will listen. Find doctors you like, trust, and respect. Establish a relationship with them. And help them to help you.
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Pain Management: Don’t Be a Hero
The single most important lesson I learned about dealing with cancer pain… and the only unsolicited advice I give to other patients when I have the chance:
Don’t be a hero.
There is no reason to add physical pain to the overwhelming emotional burdens you’re already carrying.
So, let your oncologist (by way of the triage nurse, chemo nurses, or your doctor’s medical assistant) know you are in pain or in any discomfort whatsoever. They want to help. Work with them and be absolutely honest about your symptoms. There’s almost certainly a way to help you feel better.
Asking for help isn’t being a crybaby.
Asking for help isn’t being a bother.
This is so important that it’s worth repeating in bold an all caps…
DON’T BE A HERO.
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Pain Management: It’s Okay to Ask for Help
It’s taken me years to learn how to manage my many cancer pains properly…
Partly because there’s no manual for doing so.
Partly because everyone’s journey is unique.
Partly because I had to learn that cancer pain does more than hurt.
Partly because I had to learn how the medical system works.
Partly because my medical professionals and I needed time to get to know each other.
Partly because finding the root cause of certain pains is not easy.
Partly because finding the root cause of certain pains requires lots of tests and testing takes time.
Partly because some pains come and go.
Partly because some pains move around.
Partly because I was still learning what cancer does to a human body.
Partly because I didn’t want to be a crybaby.
Partly because I didn’t want to be a bother.
Partly because I hoped the pain would just go away.
Partly because I wanted to experience what full on cancer pain really feels like.
Partly because I was afraid of getting hooked on pain killers.
Partly because I didn’t understand how certain pain medications worked.
Partly because I didn’t understand what it means to “stay ahead of the pain” (pain meds take time to start working).
Partly because I didn’t realize how many highly effective palliative interventions are available: medicines, surgeries, and radiation treatments.
I have gone under medicated and under treated–sometimes for days and weeks–because I under reported the nature and the severity of my pain symptoms.
And so, I repeat my only unsolicited advice: Don’t be a hero. Don’t suffer needlessly. Don’t do what I did. Let your health care providers know you’re in pain or any discomfort whatsoever. It’s almost guaranteed that they know exactly how to make you feel better.
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The Importance of Being a Good Patient
At the risk of insulting anyone’s intelligence by stating the obvious, allow me to make a few quick points about statistics and patient outcomes:
- There’s no such thing as an average patient.
- There’s no such thing as an average outcome.
- Half the patients do better than average and half the patients do worse than average.
- The distribution of outcomes tends to vary widely, from exceptionally poorly to exceptionally well.
- Such distributions tend to look like a classic “bell curve”.
- Such distributions are not typically explained by randomness.
- A major factor is one’s genetics. Alas, there’s nothing medical science can do to alter one’s DNA. At least not yet. Epigenetics is another matter.
- Another factor is quality, access, and affordability of one’s healthcare system (a huge socioeconomic, political, and ethical discussion better saved for another time).
- But a major factor is the behavior of the patient. In a phrase, “Good patients” tend to perform above average and “bad patients” tend to perform below average.
At the risk of sounding like a toxically positive cheerleader, let’s draw some logical conclusions from the above:
- Being a good patient increases the probability that your treatments will be more effective.
- Each choice to be a good patient tends to increase the probability of a positive outcome.
- The effect of each choice to be a good patient is accumulative.
- Over the course a one’s cancer journey, one will have tens, hundreds, possibly thousands of opportunities to be a good patient.
- Being a good patient is a choice, something you can control.
Sidebar: Take heart knowing that medical science is always making progress… moving the average outcome for many kinds of cancers in the positive direction, sometime in leaps in bounds.
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How to Be a Good Patient
Being a good patient means doing what you can in concert with the medical system to maximize your quantity and quality of life. Here’s a list of ways to do so:
- Be on time for your appointments.
- Be nice to everyone you meet.
- Take your meds as directed.
- Follow all prep instructions.
- Get your tests done on time.
- Pay your bills on time.
- Do your screenings as required.
- Be absolutely open and honest with your doctors.
- Help your doctors help you by having a list of questions in advance.
- Don’t be afraid to educate your doctors as needed.
- Assert yourself when you need help.
- Assert yourself if there’s something you’re not comfortable with.
- Assert yourself if there’s something you don’t understand.
- Encourage your doctors to talk to each other.
- Eat right, stay hydrated, rest when you must, and exercise when you can.
- Wear a protective mask as needed.
- Get vaccinated as needed.
- Realize that the medical professionals caring for you are human beings too… doing highly skilled and emotionally heavy work in an imperfect healthcare system. Show your appreciation to them every chance you get.
Sidebar: Being a good patient isn’t just good for you. Being a good patient also benefits other patients, the medical professionals who are caring for all of you, and anyone else who might benefit from your behavior… not just today but for countless generations to come.
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Frank’s Cancer Story continues… For Family & Friends