Monday, July 2, 2012

What Words Do You Use?

The other day someone asked me "Do you have cancer or have you had cancer?" I answered "I had cancer because I have no evidence of disease right now but... I know it can come back at any time. I can go back to having cancer."  I don't particularly like having to qualify my statement but that is just the way it is to be a woman who had ovarian cancer. And there are women throughout the country dealing with the same question. The NCI on it's SEER webpage says "On January 1, 2009, in the United States there were approximately 182,758 women alive who had a history of cancer of the ovary. This includes any person alive on January 1, 2009 who had been diagnosed with cancer of the ovary at any point prior to January 1, 2009 "

That question got me to thinking about the terms I use to talk about my journey with cancer.

I call myself a cancer survivor. I have some friends who also call themselves survivors. They take on the title as a honor. In other words, they have been there, done that and they are still here.  I have other friends who shy away from that term. Some because they are still in treatment ,others because they only had surgery and not chemotherapy or radiation and some just want to put the cancer behind them.

I have said I kicked cancer's *ss - twice which denotes I had a fight with it. I have also said I have battled ovarian cancer for 7 years. I know people who despise the use of war terms when it comes to dealing with their cancer. I think of it in those terms because I have not been able to find another term which denotes studying the situation, pulling together my resources ( doctors, treatments and family/ friend support) , deciding on a plan and then overcoming a danger that is a threat to my life. I don't care that the threat is not an external threat but an internal one. I don't care that the treatment is no longer on my front lines any more. But I continue to deal with the side effects of the battle and must stay prepared to fight by doing follow-up blood tests and scans. I still deal with  emotional issues knowing it can come back. It feels like I have a cloud over my head. Right now while I have no evidence of disease it isn't raining. I deal with cognitive issues which has slowed down how I process information . I need to write things down or I will forget to do things or I will just  totally miss things I am supposed to be doing. I still deal with neuropathy issues and have been trying a number of  non-prescription ways to deal with it. So yes I am still in the battle.

I have never said  I have been cured.  Nope not even back in 2006 before I recurred. My doctors say I am living with a chronic illness which might "flare up" at any time.  For me this disease makes me feel a bit like Eeyore-  I have a cancer cloud over my head . It might not be raining now but it could in the future. What do I do about that cloud? I get involved in things that are not cancer related. I paint , I read, I take my dog to agility classes.

Let's get back to my journey. One of the definitions of journey is "the passage or progress from one stage to another."And that what my experience with cancer has been like . I've progressed from that newly diagnosed patient, through the patient in treatment , to the patient trying to find her new normal, to the patient who has a recurrence, to the patient in treatment again , to the patient once again trying to get back to normal. For me at least,  normal is the constantly changing terrain of being a person who was diagnosed with ovarian cancer .

What words do you use to describe your experience with ovarian cancer?

Every Day is a Blessing!


Catherine said...

I had breast, not ovarian cancer, but nevertheless I will correct myself still if the words, “I have cancer” ever spill into conversation, because I don’t have cancer. I had cancer. Like you recurrence is on my mind, but I no longer feel the need to share that in general conversations. If people ask, I say I’m done.

Very interesting points you’ve raised about language. Seems to me we all have our own personal feelings regarding terms and descriptions. I feel as though that’s okay, so long as we respect each other’s interpretation of this experience.

Dee said...

Thanks for the comment, Catherine.
I agree with you that we all find the right terms to describe our situation. And as our situation changes we might choose to use a different term.

Our life experiences without cancer may influence the words we choose and even patients with the same cancer type have different experiences so you are correct that we must respect each other's choices.