Cancer World

Having a loved one with cancer moves you from your normal existence to what Christopher Hitchens termed the “land of malady” but that I call “Cancer World.” It’s a world with its own vocabulary, like any other specialized world, and each cancer has its specifics. You learn about staging, invasive versus non-invasive, and you finally learn how to pronounce “metastasis.” (I had previously only heard the verb form, “…whether the cancer has metastasized.” Turns out, you pronounce the noun quite literally.) As Hitchens notes, you also “fight” cancer, never suffer from it, and people who’ve been successfully treated for a cancer are not “recovered” but “survivors.” While most cancers are in fact life-threatening, and people with the cancer in remission are never 100% sure every last cell has been killed and the cancer can’t recur, the fact is that the flu can also kill you, and there is no guarantee you’ll never get another infection or that it will not flare up again. Then again, the survival rates for the flu are to be envied.

But all that pales against the sudden influx of facts and statistics and treatment options. You don’t talk about mere “survival” but “5 year and 10 year rates of survival and recurrence,” and you can quote them by stage and cancer types. Oh yes, there are many types of even breast cancer. They can even be plotted on a matrix: invasive or non-invasive, ductal versus lobular, which of three possible hormones the cancer might respond to or none of them. You find yourself unconsciously picking up terms from the doctors and nurse practitioners who patiently explain things to you. There is or is not lymph node “involvement.” You don’t ponder surgery to take out all the breast tissue on both sides and replace them with fakes, you consider a “radical double mastectomy with reconstructive implants.” Very quickly, these terms become second nature.

With breast cancer specifically, but also cancer in general, there seems to be a profusion of flower decorations, icons, and imagery. Always white, delicate, and peaceful, possibly in an attempt to balance the certainty that many of the patients around you are facing a terminal illness while others are fighting fear that theirs will be. Still, I find the profusion of white lilies disturbingly funereal.

On the positive side, everyone in those parts of the hospital or office go out of their way to be nice. Perhaps it’s because there is no malingering in Cancer World: it is a disease best detected by blood tests and tissue samples, not subjective patient reports. There is that element, too, but it’s always better when it’s detected without any symptoms on your part. I’ve read that in emergency departments and primary care physician offices, the term “GOMER” is used (Get Out of My Emergency Room) for hypochondriacs (and not only them, but that’s a darker side). There are no GOMERs in Cancer World, either. It’s sufficiently scary and the treatments sufficiently unpleasant that nobody there wants to remain any longer than they absolutely must.

In Cancer World, certain things are understood: food is something to be managed as much as enjoyed, because nausea is a constant part of most treatments. When there isn’t nausea, there are taste changes: things that used to taste good don’t anymore. Certain treatments dry out the mouth and promote sores, so eating acidic things is discouraged. And since anti-nausea meds are going into you constantly, you don’t want to do anything that might further upset your system, so spicy foods are also out. And even if they were in, they might not taste good. Planning activities is a very tentative thing: fatigue builds up through treatment, and recovery from surgery is variable.

Emerging from treatment to walk around the outside world when you know the person beside you has just undergone chemotherapy is an odd experience. No one can tell just looking at her that she’s undergone this: there’s no cast, your hair does not instantly fall out, and the effects take a couple of days to set in. Explaining the cancer to people means educating them on the nuances you’ve just spent a few weeks mastering. And often, people are more devastated than you are, as they don’t know the statistics as well as you. Or in other cases they think it’s less of a deal than it is…because they don’t know the statistics as well as you. Comforting others about your loved one’s cancer is a surprisingly common occurrence.

I don’t doubt that a similar transition happens for transplant patients or members of any other group of people who share a life-changing characteristic and visit a series of institutions designed to deal with that characteristic. It’s just remarkable that there’s so little communication between Cancer World and this world given the number of people it affects. When you announce a diagnosis of cancer, people come out of the woodwork with family members, friends, and colleagues who have had or, worse, died from some cancer, frequently even the cancer you’re dealing with. Yet these don’t come up the way car crashes or even heart conditions do. Maybe it’s that there are no dramatic events around cancer after the initial diagnosis, delivered in an office or over the phone. No one rushes in to give chemotherapy just in time to revive the patient.

Hopefully this gives you a glimpse into Cancer World so you better understand what friends with cancer or who have loved ones with cancer are experiencing when they’re off dealing with it. There’s one last thing that’s surprising about Cancer World that you should know, but that warrants its own post.

6 thoughts on “Cancer World

  1. Sandy,

    That was an eye-opening post. You’re right in that cancer seems to be a taboo subject, and ideally, it shouldn’t be. I think that people want to pretend that cancer isn’t a real threat to loved ones or themselves until they’re forced otherwise.

    I empathize with your “Cancer World” portrayal, in that I see it as a heightened state of awareness. Both you and Amy see the world a bit differently now, and have a better idea of what’s important to you. I hope this awareness lasts well after Amy is recovered and cancer-free.

    Best wishes to you and Amy as you both get through this.


  2. Thank you for posting your thoughts about this difficult moment so articulately. I have marveled several times how there is this “before and after”-ness to cancer – your life before the diagnosis, and then everything that comes next. And in a way, it is very private – the visible side effects come to the party quite late, so one walks around for a long while knowing this is going on and the discomfort with it, before anyone else would obviously know. And of course, it’s not a happy hidden thing. Maybe that’s where all of those pink ribbons came from – a way to clue people in that something was up?

    I wish Amy a quick and complete recovery, for you the strength to support her and yourself in this difficult time, and that both of you are soon able to enjoy life to the fullest.


  3. Thanks for posting this, Sandy. You and Amy are in my thoughts. I wish I could say I would be praying for you, but well, you know how it is—”I’ll continue donating to the scientists working for a cure” doesn’t have the same ring.


    • Since I’m not religious, donations are extremely welcome (though honestly, the idea of a single “cure” is…dubious…but “sucking less” is also a noble goal), and I take prayers to be just a specific kind of positive thought. I appreciate them all.


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