Staging The Course…

I have a rather broad range of interests, although some days it may seem to others (and to me) that my life is focused solely on my illness. It’s impossible to get any further away from it than my imagination and distractions will allow. There was a rather sombre moment in a conversation with my nurse this afternoon when I’d shared that I’d realized recently that not only have I forgotten what it’s like to feel healthy and pain-free, even in my dreams I don’t know what that feels like anymore. All my dreams (for someone who rarely sleeps more than four hours a night I still sneak in a lot of nocturnal creativity!) seem to incorporate some degree of disability that needs to be accommodated.

I follow a few bloggers and Tweeters who are either themselves seriously ill, have a family member who isn’t well, or their life’s work is to help those who are struggling with illness. A few days ago I came across the following blog, written by Erika Lade for The Huffington Post.

It isn’t my story, but quite a few points resonated with me and I’d like to share it with you. I won’t have the chance to figure out what life will be like post-illness, but the quandary of how to deal with my relationships with others and my realities of the time I have left isn’t far off base from what Erika has experienced.

Nobody Shaved Their Head for Me

I battled cancer for a year, did chemo, surgery, radiation, the whole lot -- and nobody shaved their head for me. You know all those stories of people who get diagnosed with cancer and ordered to do chemo and their best friend jumps in and immediately says they'll shave their head with you? Stuff like that?

Well, that doesn't happen as often as you think. The one thing that has held true about cancer, during and after, is that it will leave you disappointed at some point by every single person you know. And I had no idea that it would change every relationship in my life the way that it did.

At first, there is the rally. Everyone comes to your aid, everyone cares. Everyone is sending stuff. Loads of packages arrive to your house and flowers cover your living room. Then you start treatment and things slowly wane. The texts and presents become less consistent, people go back to their normal lives and you trudge, seemingly unendingly through treatment.

An inverted figurative graph is formed: While the shock and awe of your diagnosis has worn off to those around you and they slowly return to normalcy thinking that you are ok, things for you as cancer patient have only gotten more difficult. And for you they crescendo and build up. Yes, treatment might be working, but you feel more and more miserable while everyone else gets comfortable with your status as cancer patient.

Reflecting back, I think I subconsciously started staging my friends in the same way cancer is staged. A Stage I friend is the best you can get, checking in with you a lot, offering support, honest support and just bringing you things even when you say you are fine. A Stage II friend checks in periodically and is that one that you can go to when you're feeling rotten and truly be honest with. A Stage III friend is on the periphery -- they know what you're dealing with, but they can't handle it themselves, so they treat you uber-normally. They're the friends you can go to when you want to feel normal, but you know they have no idea what you're dealing with. A Stage IV friend is the worst, as they have basically just checked out since you told them you were sick.

There are lots of variations here, of course, and Stage IIAs and IIIBs, etc. Some people are Stage I friends for a bit then fall to Stage IIIB pretty quickly.

If you are positive and put on a front to your friends, if you wear a wig and look 'normal' then often the perception of you is that you are fine and "a trooper" or some other form of a Cathy cartoon that is "hanging in there." In reality, continuing through cancer treatment just gets harder.

Then, it seems, everyone shifts their focus to start asking you when "you're done" or when you'll "be done" with this cancer stuff. But the truth is that you are never done. When you finish treatment, that is when things get even more difficult, in some ways, because you begin to try to figure out a few things, namely a) what the hell just fucking happened b) how do I continue a normal life now and c) how do I grapple with the notion of recurrence and every ache and pain sending one into an obliteration of anxiety.

And when you are done with treatment, that is when cancer becomes intensely isolating, because a notion of post-treatment care in our current healthcare paradigm is non-existent and everyone in your support circle is just glad you are done and wants to move on from the nightmare that just happened to you. And you want this so badly too, but unfortunately the cancer cloud looms heavy over you and you cannot simply forget and move on. It is part of you.

As my friend and young adult cancer advocate Kaylin Andres recently noted, we need to reframe our notion of cancer as part of life and not simply part of death. As cancer becomes more and more common in young people, we must begin to shift the dialogue to focus not on how to accept cancer as part of our lives, but how to stop denying its presence.

Whether you see it in my body or not, cancer will always be a part of my life. As patients and thrivers, we would love to be able to speak to those around us about our cancer without them looking at us with sad eyes and a sense of morbidity. We are afraid, but cancer is truly a part of who we are, physically and mentally, and we need to be open about that in our relationships and our lives.

Maybe whether people shaved their head for me is the wrong thing to focus on. Cancer can go into remission but it never goes away. Fortunately, the best friendships stay around too.

No one shaved their head for me. But lot of people did a helluva lot more than that.