...And So Begins The Cancer QOL Database

This is just the beginning of an ongoing series of posts that will undoubtedly reshape the face of medical treatment. Or not. But I think it needs to be done either way.

What exactly am I doing? Simply put, I am attempting to list every non-life-or-death issue that comes with cancer from a patient's perspective to help the newly diagnosed manage better, help the normies understand what having cancer is actually like, and help the majority of clinicians/researchers to expand a typically narrow view of such issues.

I do absolutely need to state upfront that I do not have anger at physicians for not really fully understanding this stuff. After all, some are very aware, but it’s not really part of their jobs to worry about such things that don’t seemingly factor into the life or death equation.

But my belief is that what some might call quality of life (QOL) issues are indeed a significant hidden factor in a patient’s survival. I’ve known folks who have followed very strict “alternative” therapies, stuck with only an extremely traditional approach, utilized über positivity, abused alcohol, been extremely negative, smoked ALL THE WEED, had very healthy diets, had very unhealthy diets, and even skipped treatment altogether. Basically all the scenarios. Some defied statistics. Some did not.

What I can tell you is that literally every patient I have met who not only does the work to fully understand every aspect of how a diagnosis changed them BUT ALSO ADAPTED around that understanding has become what I would call a long-term survivor. Not a thriver (more on that later) but they’re doing well considering.

Sure, it’s anecdotal as we’re only talking like 5-10 people, but it’s something. Only one has died, but that person lived well beyond statistical expectations and passed away with a resolved conscience.

There is a growing movement of highly reputable doctors such as Stanford’s Dr. Abraham Verghese (internal medicine specialist) who agree that patient care is more than a sum of data points. Or at least data points that aren’t being recorded or understood within the proper context. There exists something else in the equation that we are not fully aware of yet. And taking everything in context is fundamental to quality care.

So. what am I talking about? Honestly, I’m not fully sure but I deeply feel there is something to my thoughts. And so begins this project to first get as much as I can formally spat out into the universe for all to see. I mean, have you ever asked a cancer patient how they’re doing? Trust me, they really aren’t ok no matter how good things seem on social media. And even when they are somewhat forthcoming… they’re lying and underselling the suffering… because someone else always has it worse.

THIS IS 100% FACT: even the most model patient isn’t telling the medical team everything.

For this first post (expect this series to go years if I can keep it going - ie not die), I wanted to first focus on some basic terminology that may not seem totally QOL-related but I do think it does give some sort of context to how patients (again, not clinicians) think.

I also don’t think I’ll get everything included in this go-round, but it’ll be a start. I’ll probably do extended posts dedicated to many of these with expanded thoughts, examples, resources, and strategies in the future. Again, this post is just a start.

PS- This will probably be very candid (ie cheeky and borderline offensive to some). Seriously, this is just a first draft. I’ll be gentler in the future when all this gets adapted to a more comprehensive one-stop-shopping resource that really tells it like it is.

For this, I’ll be dividing things into two sections. The first is a list of terms that patients use among themselves. The second contains terms perhaps familiar to medical teams but patients may not define in exactly the same way.

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Cancer Colloquialisms

• Cancer jOuRNeY: And yes, the capitalization is correct. Calling cancer a “journey”, “experience”, “story”, etc just doesn’t really do it justice. One needs to get more expressive of just how world-altering it can and usually is.

• Normies: Unless you have cancer or are a very close caregiver, this is you. no offense, but you just don’t get it. Even medical folks who have seen it up close, do not fully understand just how much cancer impacts a person on many, many levels. If you don’t like feeling like an “other” then welcome to the club. This is not intended to make anyone feel bad. I have immense respect and gratitude to my medical team and supportive friends. This is just the way it is. I can have way more extremely personal and deep conversations with another cancer patient that I barely know than doctors or even long-time friends.

• Muggles: This is a subset of normies who mean very well, but just go about it the wrong way. Typical behavior includes making unrequested health and treatment suggestions, engaging in dialogue that diminishes the full impact of living with cancer, or just demonstrating ignorance. Definitely expect an extended post on this in the future with detailed examples. This is probably the #1 phenomenon we patients talk about behind your back.

• Cancerversary: As most can figure out, this is a combination of the words “cancer” and “anniversary”. But it means different things to many people. To some, it marks the day of diagnosis. To others, it’s the day shit went sideways in life. Some view it as a happy day to be celebrated. Others view it as a day of mourning and sadness. I don’t usually do more than acknowledge it because it’s a mix of spiritual rebirth and death- except for my next one which will be July 9 (TOMORROW!) and marks five years. Though not entirely applicable to brain cancer (the hardcore brain cancer statisticians go by months, not years), it’s a significant milestone across all cancers.

• Cancer Cake: I only recently learned this one from Kelly Lee Williams on the Cancer for Breakfast Facebook group and I love much about it. It’s a cake that one usually gets for themselves to “commemorate” a cancerversary. It should have a snarky message on it like “Good Job Not Dying!”. It’s not required, but it is preferable to eat it alone to represent the isolation of going through cancer. It does not need to be a solo activity nor limited to a single day of the year. Cancer patients really deserve cake every day of the year.

• Grief Tourism: This is when normies (and usually muggles) make someone’s cancer more about them than the actual person going through it or at least attempting to get attention/sympathy by talking and posting on social media about how awful it is for them when someone they know was diagnosed. Look, we patients get that our disease can have an impact on those around us too. We really appreciate being seen, but there’s a limit, ya know?

• Cancerfluencer: Perhaps related to the Grief Tourist is the Cancerfluencer. Some people will likely take offense to me making that comparison, but fuck it, it’s my Substack. If they want to actually talk about cancer issues more than their own narcissism then they can start doing something similar in addition to posting sexy selfies in the name of “body positivity”. Right… that’s what you’re doing. This behavior has nothing with vanity or making money, you say? Of course.

  I know, I’m an asshole. I’m all for people trying to inspire and motivate and even make money from their new “health demographic”, but come on, now. I’m probably guilty of it, too, to a certain extent. I just loathe the term. Or rather that people choose to label themselves that. I dunno. This one really needs a deep dive to suss out fully. I apologize to anyone I offended. I’m not really educated enough to make a proper judgment.

• Cancer Rage: Some of you may have already picked up on a subtle thread of anger that I express when talking about anything (see my “Cancerfluencer” description for a prime example). My cancer rage is fairly well-managed, but for some it can get quite intense and destructive. I personally always have a low level of suppressed anger over how I feel physically, all I’ve lost identity-wise, the impact on every aspect of my life, and more. A highly transformative thought for me (courtesy of my friend Ian Hutchinson) has been contemplating that at its base level, nearly all anger is fear.

• Caregiver Burnout: Cancer Rage is not limited to just patients and can trigger Caregiver Burnout in those closest to a patient. Nearly every heated moment between my wife and me over the past (almost) five years has really been about anger at cancer. It gets exhausting for caregivers to constantly deal with just about every aspect of life for a couple plus all the cancer stuff. I’ve heard of partners just ignoring the other, even when there is serious puking and suffering going on. There’s a reason divorce rates are much higher among cancer patients (even higher when it’s the woman with bad health)

  

• Cancer Mask: This is a form of code-switching where a cancer patient acts as if they aren’t in physical or emotional pain to both evade attention and not make others feel uncomfortable.

• Donctor: This is a term credited to the brilliant and scintillating Leanna House of the Thanks Cancer! podcast and social media accounts. It’s just a quick way to reference a doctor who is also an oncologist. When you’re dealing with cancer, who the fuck has the time and energy to use all those syllables?

• Financial Toxicity: The cost of cancer is not just for direct medical treatments… and more of those than one might think aren’t covered by insurance. Many treatments recommended by well-respected get refused by private insurance companies. It gets really complicated, but there are travel costs, loss of income, home modifications, and way more. I knew a guy with great private insurance in the USA who still lost his home… while dealing with a grade 4 diagnosis. He died broke.

• Cancer Guilt: This is the deep feeling of pain that cancer patients feel when they continue to live when cancer friends pass away. I‘m glad to be a long-termer in terms of survival, but why am I still around when others aren’t? For me, it’s become a motivation to live more purposefully for those who no longer can.

• Cancer Envy: Generally, this is when one patient is jealous of another who has fewer deficits- ie a seemingly “easier” diagnosis. The truth is every diagnosis sucks… just in different ways. And as odd as it sounds, some patients are even jealous of patients who are seemingly “worse” off so that people will take their situation more seriously.

• Cancer Gatekeeping: This is the nasty habit of some cancer patients diminishing the experiences of other cancer patients as being somehow less important. Let’s get this clear: NO CANCER IS BETTER OR WORSE THAN ANOTHER. They’re all terrible. Wanna know more? Here’s an excellent and wonderfully entertaining video to watch.

• Pinkwashing: This is when breast cancer (represented by the color pink) is used to sell a wide variety of merchandise with little or no funds actually going to help breast cancer patients beyond the ever-vague term “awareness”. As the aforementioned Leanna House has said, “Is anyone really not aware that breast cancer exists?” Awareness without some sort of action (even delayed or minimal) is largely useless. Similar marketing monstrosities exist with other cancers, but it’s most prominent with Breast Cancers. Please be careful when you think you may be actually helping anything aside from a company’s bottom line.

• Breastie: I know some people really like this nickname for all breast cancer patients, but I personally feel it’s too cutesy for something so awful. As soon as I heard it, I felt it was a term that is designed to make the Normies (see above) feel more comfortable with what’s being discussed.

• Butt Dart: Several cancers include treatments that involve regular injections into a certain part of the body. A common one is the hormone therapy Lupron and it’s not like getting a flu shot.

  

• Benny Nap: I haven’t experienced this one personally, but this is a reference to the deep sleep state that hits from an infusion of Benadryl along with other cancer drugs to avoid allergic risks.

• Menty B: This one seems pretty easy to figure out on its own. Basically short for “Mental Breakdown” which can occur frequently with the many existential crises and mortality confrontations that come with a diagnosis.

• Infusion Walk: This is the super ninja-level move of getting up from an IV infusion treatment and walking around while still plugged in, usually to the restroom. I personally never worked up the courage to pull this one off. It’s a baller move.

  

• Cancer Card: There is an urban myth that many cancer patients get all sorts of special treatment and gifts because their cells are abnormal. Not really. I did get on a plane I was late for once though. For me, the most use I’ve gotten from dropping the cancer card is when I’m talking to someone that I’d rather not be talking to. Just mention cancer in the middle of boring small talk and the conversation will either get far more interesting or end altogether. It’s magic!

• Cancer Ghosting: This is when many friends and social acquaintances disappear from a patient’s life, especially after the initial critical phase treatments are done (ie surgery, chemo, radiation). Sure, it’s natural for some relationships to grow apart over time, but the disappearance of people one thought were close friends is much more dramatic than that. It can exasperate the feeling of isolation that comes with cancer if one is not ready for it.

• Chemo Curls: This is the phenomenon of hair growing back very curly after loss from cancer treatments. Sometimes the curls remain indefinitely or “relax” over time.

• Cancer Bus: This is a reference to the common Muggle reassurance that “any one of us could get hit by a bus tomorrow so buck up, kid, things aren’t so bad.” It’s a sure way to annoy just about any cancer patient.

Why? It may seem like this is an encouraging thing to say, but it’s actually extremely diminishing and also pretty ignorant.

Consider that the cancer with the best survival odds is Thyroid Cancer- only 2% of patients will likely die. Pretty great when compared to other cancers with far deadlier stats. I don’t bring that up to minimize the general shitshow that is Thyroid Cancer, but to compare it to the odds of dying in ANY sort of bus accident- not just getting hit by one. According to the National Safety Council, that number is 0.0000032718% .

And even then, do most bus accident victims know the exact make, model, line number, and street of the bus that’s going to kill them? No, they do not.

It’s not the same thing so just fuck off with this shit already.

• Post Cancer Ho Phase (aka #PCHP): I was initially reticent to include this term as it not only didn’t apply to me- because, short of some sort of medical miracle, I will never reach a “post-cancer” phase of any sort- but also because I became aware of this term through a cancer humor social media account currently under a number of accusations of inappropriate behaviors. Still, the term is inherently accurate. It refers to a period of time following the early phase critical treatments (ie surgery, chemo, radiation) when patients have gone through hell and come out on the other side ready to sow wild oats in “celebration” of a number of psychologically-related issues.

  

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Medical Adjacent Terminology

• Survivor: OK, this one is probably gonna piss some more people off, because I have a lot of strong opinions. I don’t like this term. It defies the rules of the English language. Technically speaking, anyone diagnosed with cancer is deemed a “survivor” from the moment of diagnosis and remains so until… um… death. Name other diseases besides cancer that use “survivor” in the same way. I’ll wait. It’s a word that is traditionally used AFTER something awful has happened. Somebody is a car crash survivor, a heart attack survivor, or an adventure tv game show winner. One of the four doesn’t really fit.

Other alternate terms for cancer patients: Endurer, Cancer-Haver, Cancerfölken, Sarcomies, Carcinomie, Cancerino, Lymphomie, Still-Aliver

• Thriver: Don’t even come at me with this one, bro! Before I get into this one, remember that I’m angry and bitter about cancer and sort of joking. Sort of (see Cancer Rage). I really do get that some people view this as an empowering alternative to “survivor”, but it just triggers me every time. Except for those few that manage to get through cancer unscathed, the rest of us have some serious issues. We might be doing well considering but, really, are we thriving? If you are one of the lucky ones then you’re just bragging and blaming everyone else for their own shitty cancer “experiences”. Anyone else using the term is in serious self-denial. And fuck off with that warrior shit, too. It might help some feel like they’re actively doing something to help their situation. But what’s really going on is that the “survivor” is stuck in the middle of two combatants- cancer and treatments- while they duke it out. The patient is more like a refugee struggling to keep going in the midst of a war. At best, the patient can sneak some supplies to one side or the other. That’s not a warrior. That’s a member of The Resistance. That actually sounds way cooler to me.

• Scanxiety: This is that building anxiety in the days and weeks before an MRI, PET, or CAT scan. And then it continues until you actually get results. And most cancer patients get scans on a regular basis for many years, if not until the end of life. Do you have any appointments scheduled for the rest of your life? I do. It’s weird.

• Terminal: Most people think this means someone is a sure goner, but medically speaking, it refers to someone who has exhausted all available and scientifically recognized treatments. The patient could die today or in ten years from now. No one knows for sure because as much as we know about cancers, we don’t know everything. Regardless of how you define this word, it’s not good.

• Watch and Wait: This means that something potentially bad has been detected in a patient’s system but no immediate treatment is administered (though sometimes surgery is conducted). The medical team then just monitors the troubled area until those pesky malignant cells start acting up. I recently heard the term “Active Surveillance” as a replacement for this and I think it’s way better. Not only does it feel like something is actually being done to help, it reminds me of a spy mission. That’s badass.

  

  Robert Vaughn, the actor who played spy Napolean Solo in "The Man from U.N.K.L.E." television series and the film "The Spy with My Face", died of cancer in 2016 (Leukemia)

• NED: This has largely replaced “remission” in the medical world as the typical normie has come to confuse it with “cured” (another term that isn’t even used for many cancers including brain cancer). NED stands for “No Evidence of Disease” which is more apt and covers medical science’s ass a bit more so people don’t get too excited. It basically means that none of the diagnostic tools currently available can detect any cancer cells present due to size or whatever. It is also sometimes called “clear”. For me, being inoperable and not reactive to treatments, my tumor has been labeled “dormant” due to a lengthy streak of scans with virtually no changes to the bad roommate in my head- known as “stable”. My tumor is still quite dangerous because of its location (brain stem). Should it decide to wake up and grow even a small amount, it’s likely to be lights out for me. I prefer to think of it as medicine’s version of “Silent but Deadly”

  

• Chemo Brain: This is intended to describe how many patients have trouble thinking clearly, but it’s really more complicated than that. Brain fog is not just caused by chemo itself and can be the result of many aspects of treatment as well as a tumor itself. It shows itself in many forms. With some people, it can last just weeks or months yet years for others. To me, it’s really just a catchall term for an area that hasn’t been well-researched. It’s just not a high priority when compared to other issues like… ya know… death. Until then, I recommend lots of brain games.

• Cancer Fatigue: This one is also more complicated than it seems. There are just so many variations. Again, it’s really just a catchall term. It describes how most cancer patients are just so dang tired all the time. It comes in different forms from the physical to mental. Like with me, my body can be fully awake, but my brain feels like it’s been unplugged. It’s not like I didn’t sleep well the night before, I literally cannot function on any level. For most, the chronic fatigue lasts many years at a minimum and only improves some while never going fully away. The body has been bombed by cancer and treatments, and like a city that’s been under siege, it’s never really the same. For instance, I take Adderall (no, you can’t have any) to help me manage my neuro fatigue. But my psychologist tells the insurance company it’s for ADHD so it gets approved (see my previous thoughts on Financial Toxicity). Even then Adderall isn’t really designed for the specifics of neuro fatigue, but it’s the closest thing readily available that makes daily life manageable. It doesn’t really keep me awake, but makes it easier to not fall asleep and thinking is actually possible. Without it, I’m a zombie who naps a lot and can’t think straight.

• Palliative Care: Whenever I tell people that I have a palliative care team, they get all concerned that I’m dying sometime soon. Sorry. Palliative Care deals with all the stuff that my oncology team isn’t really best suited for. Palliative Care makes sure all the members of my multi-state medical team are on the same page. They handle prescriptions for random issues that aren’t life or death. They found a psychologist in my area with experience specifically with cancer patients (it makes a HUGE difference). They are in place for when I do have to go into the hospital and are there to explain my health situation so I don’t get an accidental brain surgery when ER doctors get freaked out. That almost happened to me once when I went to the ER with kidney stone pain. Really. I got a Palliative Care team in place shortly after. I recommend it for every cancer patient. It’s fairly minimal and just makes life easier.

• Hospice: Hospice is what most people think of when they hear Palliative Care. It’s the care someone gets when a donctor believes a patient is in the final months of life. It’s all about making sure the patient is comfortable as they get ready to pass. Hospice care can be provided at home or in a facility. And though not common, there are cases of people not dying after receiving Hospice care and going back to “normal” life with cancer.

• Toxic Positivity: I was once listening to a podcast with a very prominent psychotherapist and they were saying that Toxic Positivity wasn’t a real thing and it was just psychobabble. Of course, the therapist was working from a definition that was incorrect. She claimed it was the idea that too much positivity can impact someone adversely. Toxic Positivity is actually the idea that there is some type of “positivity” that is actually a denial of reality and usually diminishes the experience of the person receiving such pithy statements as “Just be grateful that you’re still alive- others have it much worse”. The idea that someone shouldn’t feel negative feelings at any point is ludicrous and unhealthy. The basis of therapy is that stating dark thoughts allows you to better process and release them. Sending positive energy to someone is great, but just fuck right off with that “good vibes only” shit, ok?

  

• Red Devil: This is an alternate name for the chemotherapy drug doxorubicin (aka Adriamycin). This intravenous cancer medicine is known for its clear, bright red color that will also turn your urine or other body fluids a reddish color for 1 to 2 days after a dose is given. Adding to the fun is severe nausea, vomiting, hair loss, and heart toxicity!

• GoFundMe: Most people have heard of the money raising site GoFundMe. To cancer patients, it represents America’s third-largest insurance company. Look it up.

• Side Effucks: Is it “Effucks”, “Effukts”, or “Effux”? I’ve seen all three used among Cancerfölken (my preferred term), but does it really matter? Many medical staff know of them from extensive experience but often don’t get (and in some cases don’t believe or diminish) how bad they are. And they may not be that bad, but when paired with many other Side Effucks occurring simultaneously, it gets to be a little much. I frequently use the analogy of being poked by a bunch of sticks at the same time. One alone may be manageable but the tolerance factor goes down aggressively with each “poking stick” added.

  A Very Short List of Common Cancer Side Effukts:

  Neuropathy: Shooting pain and weakness in the peripheral limbs that in turn creates balance issues There are a number of causes, but many cancerinos suffer with it as a result of toxin damage to nerves from cancer treatments.

  Hemiparesis: This is a lesser form of paralysis where only one side of the body or a limb is impacted. For me, the entire left side of my body is weak and lacks coordination. I will definitely be exploring therapies for this in future posts.

  Aphasia: It’s more complicated than this, but simply put it’s trouble recalling specific words and putting thoughts together coherently.

  Vestibular Issues: Basically a fancy way of saying balance issues.

  Intention Tremors: When brain signals get all wacky in trying to move limbs. Like when I reach for a toothbrush with my left hand and my arm starts getting a mind of its own and smacks me in the face. Yes, that really happened.

  Depersonalization: For most carcinomies, this is a subconscious coping strategy. For me and my balance issues, my consciousness “leaves” my body and I observe myself walking from outside my body and guiding it like a remote control car. I also tend to separate from my body when I am forced to process complex situations. This usually results in an emotionless blankish state replete with poor word choices and rigid, repetitive thought. That stated, I do feel cancer has made me far more empathetic than I was pre-DX (DX=diagnosis). I’m still able to be highly productive (like writing things like this) but there’s a whole slow process I’ve learned to do it.

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Here are two more videos that I did with Leanna House in case you can’t get enough of our next-level banter:

And don’t worry. I won’t be making posts like this every day. But I will be making them a lot. If you’re interested in helping me with this massive project then leave a comment or reach out to me through:

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