The Assertive Cancer Patient: Redefines the Disease

The minute you were told that you had cancer, your first thought most likely was, “I am going to die.” I don’t know anyone with cancer who didn’t respond this way.

Then, once you have survived your first bout with cancer, you live with the fear that your cancer will return. You count off the months and days to the five-year cancer-free mark, when, for most cancers, you are considered cured. And you probably assume, as I did, that if your cancer metastasizes, it certainly will kill you soon.

If you are reading this blog and you have had one bout with cancer, my hope and prayer for you is that your cancer will never return and you will continue to be healthy.

But, for many of us, it is time to redefine cancer.

In the old days, when cancer treatments were cruder, the disease was either cured with the first round of treatment or it killed you, rather quickly.

Now, however, the ranks of people living with cancer are growing. (Elizabeth Edwards, welcome.) Most of us have metastatic disease, which means the cancer has spread from its original site. We are the “new survivors” in the cancer patient/cancer survivor paradigm—alive, possibly for many years, but not cured. Most of us will never be cured, and we need to learn to live with that.

For us, it is time to redefine cancer as a chronic illness that can be managed. This is a very different way of looking at cancer. Most of us will have periods of treatment followed by periods of remission, and fairly good quality of life throughout.

@ Jeanne Sather 2007.

Comments

[Katrina]

I recently explained this to a coworker. She asked me how it felt to know that my husband would likely die from melanoma soon. How I feel about the question aside, I explained that I wasn't expecting him to die. Right now we are dealing with a chronic illness. Yes, some day it will likely kill him, but for now it is chronic. It requires regular treatment and medication to keep it in check (hopefully). He is currently pretty healthy overall. I told her that, much like diabetes it will likely require surgery, regular medication, and would yes, likely kill him. This is just like any other chronic illness. I hope for a cure for all of them.

When death becomes more immediate, well - then we'll figure that one out when it comes. Just like every other human.

[jeanne]

Thanks, Katrina, for explaining that so well. And then, as you say, there is the whole question of people asking that kind of questions?

How do you deal with that? I have a strategy I call "keeping the shields up," which keeps a lot of questions from being asked in the first place, but it's not a perfect strategy.

Probably there is no perfect strategy, but do you have any more?

It's not just in the health area--all sorts of personal questions. When my older son, who is Japanese and obviously NOT my biological child, was little, total strangers used to ask me the most intrusive questions, usually in the grocery store.

My favorite, for sheer effrontery, was, "Why did his mother give him up?" From a total stranger, to whom I had not even been talking ...

And of course you always think of the best replies when it is too late ...

Jeanne

[Katrina]

I'm not really good and softening my speech when some one asks a question. Some say it's a fault, others appreciate that about me. It would bother me more if people walked on egg shells thinking they know the answer. I kind of find it refreshing when they just come out and ask. I just come out and answer the best that I can. Often it is not what they expected to hear or want to hear ala "do these pants make by butt look big?" - "kind of". When people know you'll give a direct answer and not think of their feelings, sometimes they think before asking. Some one once told me that you shouldn't ask a question if you don't want the answer.

[jeanne]

Good points. I agree that it can be refreshing when people just come out and ask, but sometimes it really sets me off. Especially these questions from people who are not my friends--total strangers, semi-strangers, etc.

And of course it all depends on how stable I am at the time, and that varies widely.

No right answers, that's for sure.

Jeanne

[Stewart Bell]

Hi, Jeanne, this is Stewart. I just started reading yesterday. I was startled to see your entry about cancer as a chronic illness because I had been groping toward such a statement talking to Lis just the other day. I was thinking about you and how long your struggle has been going on. The way I put it was, it seems like if you have cancer and your goal is to be cured, you probably won't make it. But if your goal is to live as long and as well as possible (whose isn't?) - and if you are strong-willed - you may succeed.

I think simply calling your cancer a chronic illness is brilliant. Did that spring unaided from your own mighty brain or can you remember someone else planting the seed? It is a paradigm shift of the first order (with apologies for that over-worked phrase). I will share it with as many people as I can.

[jeanne]

Hi Stewart--the "chronic illness" view of metastatic cancer came from my incredible oncologist, Dr. Livingston, but it works for me.

Thanks for helping to spread that idea.

It really helps those of us living with cancer if the folks around us see our diease that way, like diabetes or heart disease, and not as an urgent crisis.

Let me know when you are ready to talk about blogging. There's also some info on this blog, under "Blogs" in the caregory cloud to the right, that will get you started.

Jeanne