Chondrosarcoma – ah shit, bob's sick

A couple of nights a week, or as time allows, I do some degree of research on the web about living with cancer. Rarely do I ever come across an article that provides any actual useful information and reflects the reality of the situation. Most organizations and hospitals are offering what I might call “cookie cutter” information with absolutely basis or grounding in reality.

What I mean by “cookie cutter information”, is that it seems like some one, long ago, made up a list of what it might feel like, to have and live with cancer, and nothing else has ever added or changed in it since. Well, except for updating the style of language to make it sound new and fresh again. In other words, I don’t think anything constructive has been added to the basic information you get from these organizations since the nineteen fifties … and I mean that honestly.

Without getting into the politics of it, I consider this pretty frightening considering the wealth of many of these organizations and their lack of:
a.) being in touch with reality;
b.) b.) collecting and mining any real life data.

I don’t say that to insult these big organizations (although, I could justify that most them deserve it), but something is wrong.

With millions and millions of dollars to allegedly spend on research, they offer no realistic “look” at what a cancer patient is facing, or about to face for the rest of their lives … and that bugs the hell out of me.

I don’t want to name what organization I got this from, because the idea of this is not to smash a particular organization, but more like organizations in general. Now I do believe there are some whose intent is real, and the work they do by far out weighs the example I want to make here. Although I should add here, (being true about keeping this blog realistic), that in my personal experience, the bigger the organization, the more they failed at actually helpful. Short of providing people with jobs. That being said, here’s what happened:

The other day, I was talking with a friend who is about to face chemotherapy treatment. Somehow, we got on to the subject of appetite, and how it’s effected during and even after treatment.

I explained what and how it was during my treatment and that even now, food intake just isn’t what it used to be. And for those that are close to me know … I loooooove food and cooking. I have managed to maintain my weight, but it’s been, and continues to be, a real-life struggle that I have to face everyday.

So when I got home later that day, I decided to search out some possible suggestions that I might be able to pass on to my friend …

Here’s a good time to stop for a minute, and think about the time, when a person is first being diagnosed with cancer, and how sometimes, it can take weeks and or months for that diagnosis itself to sink into your mind. To really and honestly face the fact that you, yes you, indeed have cancer.

Sometimes, even during treatment, it can be hard not to place yourself outside of reality, as if you were watching this happen to someone else. But then you snap back, and realize … it’s you, and it’s going to be you for the rest of your life, so face it and get on with living.

… and so, as I researched the subject, I realized that I wasn’t finding any realistic accounts, or perhaps, I was simply finding the stupidest suggestions a person could make. Not only that, I found that just about every hospital or organization had almost exactly the same useless information.

In a nutshell, they copied each other, and they all used the same old facts that where written before anything was really known about cancer (and that fact is still true).

They all start off with something like this:
“You may find that cancer or cancer treatment has affected your sense of taste. Food may seem to lack flavor or taste too sweet, salty or metallic. Usually these changes are temporary and will improve with time. In the meantime, do what you can to maintain your calorie intake and meet your body’s protein, vitamin and mineral needs.”.

Now let’s take a look at this paragraph and dissect it, then re-assemble it into a realistic statement … and then see what we think about it.

First sentence problems:
“You may find that cancer or cancer treatment has affected your sense of taste.”

First off, there is a huge difference between “cancer” and “cancer treatment”, and it’s impossible that any solution could possibly pertain to both situations.

When talking about “during cancer treatment”, it should say, “You will find that cancer treatments have affected your sense of taste” … why you ask? Because it will.

Imagine the tender-ist, tastiest, juiciest, steak in the world, cooking on your BBQ, the smoke swirling up into the neighborhood, grilled to absolute perfection and now instead of covering it with A-1 sauce, you dump two ounces of “Liquid Wrench” on it. Yum, take a few bites of that, and you’ll begin to get the idea of how your taste buds might be affected.

I mean really, … why tell people that it “might affect you?” Truth is, it’s going to affect you … for sure. Food still tastes “off” to me, where eating was once a joy for me, it’s now simply a necessity. But for different reasons other then cancer treatment.

How much “too sweet, too salty, or too metallic” are you going to eat anyway? If your food tastes like that, how much are you going to eat? Let me tell you, not much.

So the truth is, your appetite “is” going to be affected by just about any powerful cancer treatment. I’m not saying you’re going to starve! … but you can expect that during treatment, there’s a ninety-nine percent chance that your appetite is going to be affected and the result will be weight loss.
Prepare for that. If you have a few extra pounds on you, like I do, you can easily handle it … but it’s important to understand that. It’s the truth.

If you’re the thin or “skinny” type … you want to consider trying to put on a few extra pounds while and if you can. This way during treatment, you can stay out of trouble with weight-loss.

Now, it’s clear to understand that chances are good that your going to lose some weight, and now that we understand that, let’s look at why. Can it really be because food might taste like metal? … we that could surely be one reason why that I can personally attest to, but is it the only reason?
Oh, I don’t think so …

Oh damn, it’s late again and I have a busy day tomorrow. Let’s see if we can keep this subject going because there’s a lot more on this subject I’d like to talk about. Besides, I have more to say about those organizations this try and pass out this free mis-information.

Maybe I’ll make a quick snack! Anyone want to join me for some salty, metallic marshmallows?.