Frame of Reference—The Disease Olympics Part 1

I first remember hearing the phase “the Cancer/Disease Olympics” during that fracas involving Pancreatic Cancer Action’s “I wish I had breast cancer” PSA back in 2014. I wrote “Want Attention? Just Say Breast Cancer” in response; and included in that blog post is a link that will take you to the video, and more commentary (it reflects my own views; I urge you to research other views your own self). I remember that whole episode got really nasty; I even heard a few people sent death wishes/threats to the pancreatic patient who uttered the line. She did die not long after that, if I remember correctly. Just proves how quickly things get out of hand  especially when a subject raises passions.

And what subject is that? Disease/Cancer comparison and competition. I think the “official” definition of Disease Olympics is the competition for limited funding between advocates for diseases: to “win” increased funding for one disease means funding for another decreases. But I think in a more general way Disease Olympics can refer to the game of “who has it worse”, and research funding is just a piece, a large piece, of that picture. I’ve been sitting on a post about all this since early 2013. Two things happened back then: 1) A breast cancer patient I followed on one social media outlet wrote something so upsetting about being competitive with her cancer that I took a hard look at myself and have been doing so ever since, and 2) Journeying Beyond Breast Cancer wrote a wonderful piece asking Is There a Hierarchy Among Cancer Survivors  (read it now, especially the comments, which are the crux of the discussion!). I kept writing about these incidents off and on, and it has now grown to three parts—this is the first part. I’ve been sitting on the post not only because it grew so unwieldy, but also because it is an ugly subject and I have some ugly confessions to make. I want to be completely honest, and as awful as this topic is, avoiding it won’t make it better—not saying conversation about it will either, but, I’m trying anyway.

The more I wrote about it, the more I realized that the comparisons are present even when those doing the comparing don’t think they are doing it, or rather they don’t know or understanding exactly the things they are comparing. For me the worst compare/compete stories are within the breast cancer community. That’s the third part. Slightly less awful are the comparisons/competitions between cancers—as the Pancreatic Cancer Action story shows—and between cancer and other diseases. That’s part two, and it will not be easy to write or read either. But before I started going into all those areas I had to write about a realization I had while considering comparison from as many angles as I could.

I cannot condone the competitive aspect at all. But when it comes to comparison, I do pause. Comparison can be useful, if careful. The most obvious example, at least in my experience, is the fact I tended to seek out other cancer patients with the most similarities—as in those HER2+, since I seemed to be an oddball in an estrogen-based cancer world there for a while. That was the biggest issue for me. Other aspects, like finding others at Stage 3, others who had a lumpectomy, not a single or double mastectomy, others who did not reconstruct, others NOT BRCA positive, and of course, others in my age range—all those things I sought out as well. All those aspects have become less and less important as I’ve progressed away from my diagnosis date. Views and attitudes about positivity and the bullshit around cancer have become waaaaay more important to me. It was just in that first rush of dealing with treatment, of trying to grasp what the hell was going on, that I desired to find people with the most similarities. I still have a habit even now of paying more attention to such silly aspects; it is not that I do not care about, say, Triple Negative cancer, it is more like—cancer is so damn complex, it’s hard to wrap my head around it all sometimes. The bottom line however, is to not let those details cloud the bigger picture, the commonality we share.

That may sound a little hippy-dippy, airy-fairy coming from a Curmudgeon, but it is true!

I will go so far as to say my cancer experience has helped me in my current line of work. As I’ve mentioned here on this blog and other places, I am a pet sitter, but that job turned into caring for a primary client with Chronic Lyme. So I’ve wandered into so home health care tasks in my job. Things like hooking up IVs, administering medicines, keeping a strict schedule (know that old nugget about nurses waking you up in the hospital to give you meds? well, I understand the need to adhere to a schedule no matter what now), paying close attention to dietary restrictions—heck, even cooking—I do all these things now. And yes, they are easier to do BECAUSE I went through the cancer experience. In short, I now appreciate the damn infusion machines that I hated so during chemo. Having to set the drip rate on an IV manually, using my eyes and the metronome app, well, it got tricky for an impatient brat like me. Argh, medicines requiring a slow drip rate are THE WORST!

It wasn’t that I relied on my cancer experience to say, “Oh, I’ve experienced that, no big deal!” That would be awfully dismissive. No, it was more like, “Yeah, that happened to me, it sucked, now how can I apply my gained knowledge here?” Having the frame of reference of major illness and the operations of medical industries has helped: I was surprised and pleased to find the infectious disease center provided materials similar to what I was given at the start of chemo. Was I troubled by just being in a medical facility, by having these upsetting memories? Sure, but at the same time, I was entering into the role of caretaker in another frightening illness situation. Having that frame of reference, experiences to extrapolate from, it was only helpful. Being able to say, “oh yeah this is like that was for me,” made me more efficient, and not too rattled.

It is so NOT about one upmanship.

So is there an undercurrent of one upmanship, or maybe one downmanship (since it’s not about who is better, but who has it worse, right?) in diseases and patients? If so, can it be resolved? No, but I still think it should be discussed.

Has using comparisons ever been helpful for you, to help you understand parts of your illness?

Advertisements

Disconnected. Slog. Resentful.

This October I feel more disconnected than ever from the Pink noise. And yet, I feel more burning resentment than ever, too.

Before I got online this morning and saw all the posts about submitting 3 words to GMA for some Pink crap they are doing, I was already thinking about how the words and phrases about to fill all media are so damn meaningless (just like I thought this last year: Some Word Problems). I saw silly grocery bag (pictured below) with the ribbon and the words “inspire hope”, and all I could think was, “what does that even mean?” I snapped this picture while I was waiting in the checkout line, and naturally my gaze fell onto the People magazine with Jackie Collins on the cover—barf (I am sorry she died, but completely disagree with her views and am so jaded about ALL celebrity cancer stories that I just always want to barf when I hear of them).

What do these words mean? What have they to do with my every day slog?
What do these words mean? What have they to do with my every day slog?

I am so tired of all the slogans surrounding cancer, and even all illnesses. They are so disconnected with the everyday slog that is the very nuts and bolts of treatment. This is why I’ve been especially touchy this year about the showy symbolic activities, such as wearing a bald cap, for “support”. How does this bald cap, or taking off a bra, and then maybe hanging it on a mailbox, do anything for that every day, minute to minute, nitty gritty, SHIT that is treatment?

I don’t write often about my primary client; I take care not only of her pets (since, technically I am a pet sitter), but also I am a secondary caregiver (her husband is the primary) for her Chronic Lyme treatment. First of all, hers is not my story to tell exactly, and secondly, there is so much controversy surrounding Lyme and I am unwilling to wade into it. Chronic Lyme patients will read this and know the everyday slog of which I speak: the IV treatment regime, the schedules, the horrific side effects. Cancer patients will know some of it, and can take an educated guess about the rest.

This is only the tip of the iceberg in describing my daily life. I won’t go into the scary dark places: the reminders of my own experience as the receiver of caregiving, the horribleness of side effects. Just know that the past few months have been especially difficult. I’ve been super busy and often so tired when I finally sit down to my laptop that I can barely read the many posts by my favorite bloggers (my saved links on Facebook and bookmarked web pages to read later “when I have a minute” are now out of control).

When I see “inspiring” slogans on t-shirts and what-not, and smiling crowds in races or on idiot morning TV shows, with those little clips detailing the same old story, I just think—is this the real life? No, it is not.

Patients face disease and treatment alone, ultimately. Yes, good people do lend real support—not the fake, symbolic kind exhibited by head shaving, but real stuff like listening, holding, cooking, cleaning, etc. But no one can experience the nausea, the constipation, the diarrhea, the exhaustion, the FEAR, and so on, for the patient. And people holding up signs in a video clip don’t help me when I have a relapse of cancer panic, or when I nervously, fearfully, watch my client to make sure she stays awake long enough to not choke on her food.

THAT is my everyday slog. How can I help but feel resentment when I see all this we-are-fam-i-ly sign-holding, waving, smiling, on TV? I did not go into warrior mode and kick cancer’s ass while I was in treatment. I slogged it out taking each day as it came. I do the same now. Lyme’s ass is not being kicked; we’re just taking one day at a time, slogging it out, doing the best we can and working toward better days. Cheering crowds make me feel so disconnected with the realities of illness and treatment.

That is what illness, cancer and Lyme, are to me: a SLOG. And the celebrations about to ramp up for Pinktober make me feel DISCONNECTED and RESENTFUL.

And those are my 3 words—but they won’t be the last words I speak.