This morning's paper has an article offering a handful of DOs and DON'Ts for talking with cancer patients. It's written by a comedian, so it's (sort of) funny. It's written by a comedian who claims to have cancer, so it's written from his own personal experience.
I've done a few Google checks:
... Yes, "David Smiedt" -- the author -- exists and is a comedian.
... Yes, he is reported as having cancer.
... No, a search for "David Smiedt cancer scam" does NOT lead to a whole swag of attacks on yet another "cancer survivor" scam.
So, reassured that this person may be truthful and has not (yet) been identified as a scammer, I read on. He writes:
... I have science on my side, really good science.
That reassures me, too. Of all the doctors who have advised me, treated me, just spoken to me about my cancer -- perhaps a dozen so far, half of them specialists in cancer -- every single one of them is a fully qualified doctor! You know, the sort of doctor who studies basic doctoring at a real university. Who then spends several years studying even more, just to feel really qualified to speak to me about what ails me.
These are doctors who really *know* some *real* stuff about medical science. And about cancer. I put my trust in them because they are doing their best to know all that real medical science now knows about my cancer. And they are doing their best to apply their skills and knowledge to *my* particular cancer.
I love my family. They provide love and support both for me and for Deb, who has to put up with me. Some of my family also send me links to people who are able to sell a cure for cancer. I appreciate the thought. I did a bit of a Google on the latest.
... Well who the hell is Kris Carr and where did she get certified as an oncologist? Kris is an actress and, in 2003, was given a diagnosis of epithelioid hemangioendothelioma [EH].
You may ask, Why should I listen to some "scibabe" who posts humour, insults and vulgarity on the web? Just as I ask, Why should I listen to an actress -- when the problem is cancer? Here's a bit more from that scibabe post:
...
It is curious that she's labeled as a cancer survivor [snip] because… Kris Carr still has cancer. Yeah. Funny that. Kris Carr is still riddled with the same smattering of tumors today that she was on the day she was diagnosed.
Anyone can sell a cure for cancer. All you need to do is put the word "cure" on the snake oil bottle. That does not mean that it will actually *cure* cancer. Specially if the "cured" cancer is not the same as your own cancer. So (a) Carr has EH, (b) I have GBM (and some other, probably unrelated) cancer, (c) Carr *still* has her EH.
She is not able to cure her own cancer, I doubt that she will be able to cure mine.
...
She's become a "cancerlebrity," a person famous for beating cancer (ignoring that she still has cancer). She's selling inspiration, a lifestyle.
That is what scibabe believes is being sold by Carr: inspiration and a lifestyle. Which is fine. After all, placebos have been proven to work... Proven by real medical scientists, apparently. By scientists who have tested the placebo effect with good scientific methods, who admit that they do not know "why" -- but they are still able to demonstrate that yes, placebos do work. Carr, on the other hand, appears to have stuffed herself with all sorts of stuff and says, I'm still alive therefore all of that stuff is working. Again from scibabe:
...
Correlation isn't causation. But since she's doing so many things in her routine, it's hard to figure out what's working and what's just bullshit.
I prefer to be treated with methods that have been tested. Re-tested. Questioned, analysed, separated out from the other dross of a desperate yet inspirational lifestyle. Or, as Smiedt wrote:
... [Don't] tell me about how your auntie Beryl's best friend, Vera, cured her cancer by drinking only olive oil milkshakes and avoiding any foods with an 'e' in their name. No, she didn't.
But Carr has survived her cancer! All those years since the diagnosis in 2003! Well, that's just the way it is: some cancers grow fast, some grow slower. As her own
http://kriscarr.com/meet-kris/ website says:
...
I was diagnosed with a rare and incurable (yet thankfully slow-growing) stage IV cancer.
Slow growing.
...
Carr is among a growing number of people living and thriving with cancer, thanks to medical advances as well as a progressive philosophy in oncology that recognizes past mistakes of over-treatment and welcomes alternative medicine as a partner in the healing process.
Yes, real oncologists are willing to look at alternative medicine. In the ten years since the SciAm article, real oncologists may have tested some of the Carr self-treatments. I wonder if there have been scientific studies of the cancer curing effects of shoving green waste up the patient's bum? Would it need to be shoved all the way up from my bum to my brain?
Wikipedia (
https://en.wikipedia.org/wiki/Epithelioid_hemangioendothelioma) offers some interesting points. With actual references, though you'll need to go to the article to get them:
... It often has an indolent course, and many affected people have survived for decades with multi-organ disease. The extent and number of organs involved apparently has little effect on longevity.
Not that there are many people who actually have EH. Perhaps twenty new cases each year in America. Yet, "many affected people have survived for decades with multi-organ disease." Perhaps some of those other EH survivors lived only on olive oil milkshakes?
I appreciate the thought behind the link to Carr. I hope that Carr provides inspiration, that her paying customers will shake off their gloom and get on with enjoying whatever life is left. I do not think that she will cure any cancer.
As I see it: I now have Three Years, One Calendar Month and an Unknown Number of Days in which to plan for Life. That 3+1+n is statistically optimistic but it is only for planning purposes. That gives me plenty of time to plan -- and perhaps to do -- whatever it is that I will enjoy doing.
When I initially accepted that I'm going to die sooner than I expected, I began to plan for Death. For sudden and unexpected Death. I was positive, I was accepting, I had an underlying feeling of worry.
Now, with a 3+1+n time always ahead of me, I am positive, I am accepting... I have no underlying feeling of worry. Sure, the occasional disbelieving feeling of gloom. A sudden thought of, wtf I'm gonna die! But it passes. I spend more time doing what I enjoy: Reading, writing, talking, emailing... with friends and family. And planning for the best use of my next 3+1+n.
If I were Kris Carr I would be bottling and selling my 3+1+n. But I'm not. I'm happily blogging it for free :-) Because -- I enjoy it.
Just as I enjoy reading about alternative therapies. But my enjoyment comes from "critical thinking": as I read I am thinking, what are the strong points of this information? what are the weak points?
A few hours spent reading around a topic is time well spent. Enjoyable. And I am reminded -- by this particular topic -- that good diet is important. Time spent being told to have a positive attitude would be... time wasted. And I'm not even going to consider paying money to have green waste shoved up my bum.
Unless it is recommended by one of the medical "team" who are treating my cancer. Because if an real oncologists says, Do this, I believe that they have a good reason for the suggestion. A good reason, that is, that is related to *my* health. And that has the backing of real research, real attempts to prove, that the recommended treatment will help.
Yes, there are alternative treatments.
I have decided to follow the alternatives that have been tested. And re-tested. And shown to have some *real* chance of keeping me alive... despite the cancer.
I don't entirely *reject* other alternatives, some may work. In a limited fashion, in very specific circumstances. But with limited time in each day I am limited in the number of treatments I can take.
I choose to take the treatments that have been *proven* to work. For *my* cancer. And that, I'm afraid, leaves no time for inspirational authors who peddle expensive "cures" to the gullible and the desperate.
Though I do have the time -- as you may have noticed -- to post my own opinions on what may work and what will not. And those opinions you may take -- or leave. Because that is your choice. And my own opinions are presented for free. Which may be all that they are worth :-)
