Our bodies, our lives
April 8, 2015 6:11 AM   Subscribe

In the coverage and discussions, our voices are unheard, our lived experience silenced from a discussion that impacts our lives in a way that journalists and think-piece writers and even doctors cannot understand. I struggle sometimes when I hear stories of people with cancer that most likely would be cured if only they followed the treatment regime suggested by their doctors who make the decision to follow a [complementary and alternative medicine] remedy. Not even your doctor will judge you though.
Elizabeth Caplice writes about of living with (likely terminal) cancer, the temptation to believe in miracle cures when the reality of having to undergo cancer treatments are so dire and how little cancer patients themselves are heard in the ongoing debates about treatment and alternative medicine.
posted by MartinWisse (13 comments total) 25 users marked this as a favorite
I have been with physicians and residents throughout their rotations in a radiation oncology clinic, and part of the field that I work in works hand-in-hand with these physicians, so I've had some experience reading the literature on which these diagnoses are based. I don't want to diminish the work that is done, but as is evident, it's a very inexact science, both in determining the prognosis and in treatment. Most of the treatment modalities are just trying to "burn" the disease out of you. They are the state of the art, but the art is pretty brutal (lo Fletcher-Suit applicator, or hdr prostate brachytherapy, or a gamma knife head frames) . Furthermore, after diagnosis, patients are essentially scored on varying rubriks and there's little flexibility w.r.t what will happen after that.

Compounding this is insurance who ultimately decide what will or will not be paid for. I hate to speak ill of Obamacare, but one negative side effect, as it's been explained to me by more than one healthcare provider, is that many of these insurance standard practices and pricing have now been, under the ACA, codified as law (although if someone else can speak better to this, please do).

In short, if the man in the black coat comes for me, I would seriously consider slipping away with him in a morphine fog.
posted by johnnydummkopf at 6:55 AM on April 8, 2015 [7 favorites]

That was a hard read. I have an uncle who basically has filled the role of father figure for me since my Dad died when I was 18 who is in what we all know are the last stages of colorectal cancer. There is so much "I don't know" out there, not because the physicians and specialists aren't on the cutting edge of what's possible, but we just...don't know.

There's also the added pressure of family who say that cancer patients need to "fight" all the time, when many times the "fight" just means prolonging days on the planet, with the hope that the horrible struggle will yield a healthier, stronger future someday in the distant future. The fact that this future isn't at all guaranteed doesn't seem to dissuade too many people except the patient, who is often the least listened-to.
posted by xingcat at 7:20 AM on April 8, 2015

Hmm. I think everything she says is true and important, but I also don't know how much it has to do with Jessica Ainscough and Belle Gibson, the controversy over whom she uses as her jumping-off point. Those were people who used the authority that came from having cancer (or in Gibson's case, apparently from falsely claiming to have had cancer) to speak to an audience of people who mostly don't have cancer. It sounds like a lot of the discussion of Ainscough is kind of bullshit: it was her body and her life, and if she chose not to have terrible, disfiguring surgery and it ultimately cost her her life, then that was her legitimate decision. I don't think it would have been my decision, but that's easy for me to say, and I'm truly in no position to judge. But the bullshit conversation about Ainscough's medical choices seems a little separate from the issue of people who have had cancer building media empires off of giving unscientific medical advice to the general public.
posted by ArbitraryAndCapricious at 7:48 AM on April 8, 2015

Thank you for this article. My father recently died of stage IV colon cancer.

Many people had well meaning advice but I noticed that often we felt like we knew what was best for him. Often times he didn't want to see anyone, he didn't want to make any choices and it seems he just wanted to go away. It was very tough.

I am guessing that in addition of choices of treatment, it is important for family members to remember that everyone should be in control of their own lives. Not everyone is as heroic as Scott Stewart, nor the definition of heroic should be defined by those famous cancer survivors that fought to the very last minutes.

My father died only 6 weeks after first being diagnosed, even though we were expecting a year of life. The more I think about it, the more I think he would himself be happy with this outcome as his life wasn't his own anymore and he truly hated that.
posted by The1andonly at 7:59 AM on April 8, 2015 [7 favorites]

Unless you have sat in that place, and had the life sentence of cancer handed down, there is no way you can understand how it feels.

This. A thousand, a million times this. Even my wife, who lost both her parents to cancer and is the rock that is holding me up through the process of fighting my own stage 4 diagnosis, acknowledges that she can't begin to know what it's like to be the patient.

Thank you for posting this. I will be sharing it widely.
posted by ElDiabloConQueso at 9:15 AM on April 8, 2015 [10 favorites]

When I was going through cancer treatment, I was in no condition - physically, mentally, or emotionally - to do as much independent research as I normally do. I did the best I could under the circumstances, but for the most part I was completely dependent on indifferent strangers to tell me what could or should be done.

Half the side effects I had - some of which have had permanent consequences - were things that NO medical professional warned me about before starting treatment. If I had a nickel for every frantic phone call to a doctor's office (almost all of which involved frustrating phone-tag, missed messages, answering system loop nightmares, etc.) I made about some unexpected development for which the answer turned out to be, "Oh, yes, that's a known effect, sorry about that, sucks to be you," I might have been able to pay all my copays and deductibles. In the case of cancer, I don't think it's right to place all the burden of research on the overwhelmed patient. It would have made my treatment, and all the decisions involved in it,so much easier and more effective in the long run if someone,anyone,had given me a bullet-point list of all *possible* side effects and how they might be managed. I didn't need the horrible, gut-wrenching fear and shock that came with the sudden, intense attacks of bone pain in the middle of the night any more than I needed the weeks it took to get someone to prescribe medication for it - why didn't the doctor say, "Oh, by the way, there might be some bone pain," and make arrangements for the prescription to be ready if I called needing it? Why aren't oncology nurses trained not to do things like literally shrug and say, "Yeah, that happens," after you've dragged yourself across town on two buses trying to not scream so loud you'll get kicked off? Why doesn't the local cancer resource center offer something like phone counseling instead of focusing on yoga classes and makeovers?

Every oncology practice should have patient counselors and advocates available throughout the entire process. It's too much for somebody that sick to bootstrap herself through with nobody who thinks of her as something more that a walking tumor.
posted by The Underpants Monster at 9:33 AM on April 8, 2015 [19 favorites]

Gah! I forgot - no patient should be told AFTER THE COURSE OF CHEMO IS FINISHED, "Oh, by the way, you might want to get your hearing checked; these particular drugs can cause hearing loss or deafness."
posted by The Underpants Monster at 9:34 AM on April 8, 2015 [6 favorites]

A very amazing article, the patient is exquisitely generous to share her time and insight, with us.
posted by Oyéah at 9:36 AM on April 8, 2015

I have stage IV melanoma. The good news is that there are drugs which can actually be effective, for some people. The bad news that it's still pretty dire.

Early on, when this was discovered, I was in the hospital, a day after spine surgery, and an acquaintance visited and gave me a book called Proof of Heaven. My atheist daughter and pagan wife were there, daughter complimenting me on my restraint.

This disease may well (or may not) end my days, but each day I am alive feels like a repudiation of this person's (well-meaning) efforts to provide me comfort.

My wife tossed the book into the first free bin that she saw.
posted by Danf at 10:20 AM on April 8, 2015 [16 favorites]

I have terminal brain cancer.

Go ahead-- pray for me to any god, do something with my chakras, do remote energy healing of my cancer, ponder my spirituality...

BUT don't do it with me present, and don't tell me what to do.

Great article. Thanks.
posted by miss tea at 11:09 AM on April 8, 2015 [11 favorites]

I can thoroughly understand why people would either want to avoid the misery of some cancer treatment regimens, or avoid dealing with issues of agency and mortality. Sometimes all the options are horrible.

But f*ck anyone who tells me I'm doing cancer wrong. That is accusing me of *living* wrong. As a queer Jew I have an extensive collection of replies to judgemental bigotry. Try me. Even on my bad days, you'll regret it.

(I'm one of the "lucky" ones with slowly progressing metastases; with adequate medical management and no chemo or radiation, I'll be kvetching for decades to come.)
posted by Dreidl at 1:20 PM on April 8, 2015 [4 favorites]

Oh yeah, wanna be helpful?
What about asking "How can I help?"

The laundry and liquor shopping won't do themselves.
posted by Dreidl at 1:23 PM on April 8, 2015 [10 favorites]

Stage 4 breast cancer, mets to lung, liver & bones. I'm 46. I have no fucking clue how long I get to bounce around on this beautiful planet with y'all - the prognosis for my kind of cancer is a median 3 years - but until the day I make that exit, I will lose my shit on anyone disrespectful enough to suppose they know more about my cancer than my oncologist and I do.

NOBODY gets to weigh in on my cancer unless I ask them to. You can stuff your sour sop leaves and your apricot pits and your lemon and baking soda up your ass. I told my therapist last week that I am writing a book about cancer and the first chapter is, "How To Do Your Cancer." And the whole chapter is: HOWEVER THE FUCK YOU WANT.

Also, co-signing this: Every oncology practice should have patient counselors and advocates available throughout the entire process.

The first call I made after the dx was to my mother. The second was to the counseling facility I have used on and off for more than 10 years. I asked for a therapist that had worked with patients with terminal illnesses before - talked to Alex on the phone the next day and saw her the day after that, and we've spoken at least once a week and sometimes more for the last two years. I can't imagine trying to face this without her in place, she is as essential a part of my care team as my doctor is.
posted by deliciae at 10:12 PM on April 9, 2015 [6 favorites]

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