Saturday, 12 November 2016

I guess I'm now a cancer survivor.

I've been thinking a lot lately about the term 'cancer survivor' which I guess is a club I've now joined.

A lot of cancer groups consider anyone who is living with cancer, has had cancer, or is in the terminal stages of cancer (this one confuses me), to be a cancer survivor.

Some people don't consider anyone to be a survivor until after a year in remission. Some people start using the term as soon as they are diagnosed. The cancer society says that anyone who has been affected by someone with cancer can consider themselves a cancer survivor because they 'went through' the disease as well. 

So...congrats for being a cancer survivor? Although I really don't see it going over well though if Isaiah started referring to himself as a cancer survivor. I've read that spouses of people with cancer have a higher risk of depression and anxiety for the first few years after treatment so it's not like they are totally unaffected. He took care of me when I couldn't get out of bed, got me to the hospital when the chills made it so I could barely move, and made me the same bland rice and chicken meal for weeks on end. It's just having a giant needle stabbed into your spine, getting feverish chills, and having your bones ache isn't quite the same. Get your own word, Isaiah!

There is also the term 'previvor' which is used to describe people who have a genetic mutation which makes them susceptible to cancer, like the BRCA mutation. Some people feel the label 'previvor' takes away from women who have had breast cancer. But others find it helpful to explain the stress and panic of being susceptible to a deadly disease. I've never heard anyone use that term in real life so maybe it's just one of those things a committee came up with and everyone else rolls their eyes.

Of course, with the pushback to 'previvor', there is also pushback against 'survivor' with some people calling themselves instead 'thrivers' or 'alivers' as they've now decided to thrive in life? I don't really get it.

I didn't think of myself as a 'survivor' during cancer treatment and I guess I consider myself one now even though I'm not a fan of the term. Not that I think 'thriver' or 'aliver' is much better. I don't like the militaristic terms. I've never liked the whole 'winning' and 'losing' part of the medical language. It's like you're a survivor until you're dead and then you're a loser? "Here lies Allison, a cancer loser." Although it's not like cancer is winning much after you die as the cancer cells die too, it's more technically a stalemate. "Here lies Allison, it was a cancer stalemate."

Although I'm not big on 'survivor', there isn't really a good replacement term and I understand why people like using the word. Cancer is terrible. Chemotherapy is the worst. From what I hear, radiation is no walk in the park. Going through that and coming out the other side is something to relish, it's a big thing in most people's lives and the whole process does feel like surviving something very intense. I think the term survivor can also help people put that part of their lives behind them.

But I must say having the cancer gone from the body doesn't mean that there aren't lingering effects. Not just physically where it takes a long time to recover from what the chemotherapy medication does to the body but also the psychological part of it. The continued anxiety of "what if/when will it come back?" is very really. Apparently 9 out of 10 people who are in cancer remission are worried about a relapse. And may I just ask, "who is this 10th person?! It's called remission for a reason, the literal definition is 'a temporary recovery.' How can you be so chill?!"

I think the reason I find a lot of these labels ridiculous because, having CF, you never get to be a survivor. Maybe I'm just bitter against those who get to be free of their disease. Or maybe I just resent every time anyone called me a 'CF survivor' and I thought about all the ways I would never be free of having CF. As there is no cure, you are always in the losing category. You try to stay as healthy as possible until you die from lung failure, or get a transplant and start the whole cycle over until you die of a lung infection or organ rejection. I know it sounds fatalistic but it's what happens.

I've seen some 'CF warrior' around which, I guess, makes sense. More sense than 'CF survivor' but it's still in the military realm. Must everything be an exhausting battle? I wonder if diabetes has anything. Diabetes champion? Diabetes knight?
Think of all the things to put on a business card, Allison Watson: CF warrior, transplant recipient, cancer survivor, diabetes manager, and part time library clerk. I'll need a big card.

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