How People React to Your Cancer - March 17, 2009

Two weeks from today I will "celebrate" the one-year anniversary of my bladder cancer diagnosis. Despite the feeling that it's only been a few weeks since then, nearly EVERYTHING has changed about me and my life in the last 50 weeks. There was the initial shock, two quick surgeries, the stress of awaiting lab results, BCG series, and judgment days. There was a re-ordering of priorities, physical and spiritual. There was the complete and total change in diet starting August 1. There was the addition of vitamins and supplements. There was trying to work and act like it was all no big deal. And lastly I have added (and hated) exercise. It's been a whirlwind of change. Trying to figure out when (or if) there was time to go play in between medical events, and a new appreciation that life is, indeed, very short was another new experience.

One thing that's struck me is how others react to (and have reacted to) the news of my cancer diagnosis. In reality, there are only two frames of reference that folks have available to them based on their indoctrination and experience.

1) You are going to die. It is only a matter of how soon and how awful the process.

OR

2) You are fine because the cancer has been removed and killed off, and it won't come back. Really the whole thing is over and can be forgotten about as an unpleasant episode.

What people need to know (and are afraid to ask) is whether you are in the first or second category. They desperately hope you are in the second group, so they will "fish" for you to say things that suggest that's the case. Even if you don't intend to, they will interpret anything you say to put you in category two.

Bladder Cancer is unusual in that it's hard to say you are in either category. For high grade cancer like mine, the odds are uncomfortably high for mortality. With early detection and treatment, the prognosis is improved, but not to the degree that any doctor will declare you out of the woods - ever. For low grade bladder cancer the odds are much better. But the reality of bladder cancer is this - you are NEVER going to be in the second category. I will have annual cystoscopies FOR LIFE. Because you can't ever tell people it's finished, they become very uncomfortable with the only other alternative they know - painful, ugly death.

How do people deal with the two scenarios? If they believe you to be in the first category they fell really awful. Because it is bad news, and especially because there is nothing at all that they can do to make any of it better. Seeing you just reinforces that feeling, so you become a pariah, and they will try avoid you, even though they are truly sympathetic.

On the other hand, if they believe you are in category 2, they are truly happy for you. Truth be told, they are equally happy for themselves not to have to be bothered about it. And they will treat you as they normally would, rarely if ever mentioning it.

How do I know this? Because that's exactly how I responded to people with cancer diagnoses. So rude but so true. Having been there myself less than a year ago, I can recognize it in others. Folks deal with me the very same way. Sort of a "please tell me you're in category 2, and we can get on with things..." attitude. Because of bladder cancer's long road before we know if we are ahead of the game (not quite category 2), true status of your situation makes nearly everyone unhappy and uncomfortable. And there is still nothing they can do for me outside of sympathy and prayer.

What I spend a lot of time doing is reassuring others. Since it's not over with to be forgotten about, they are fearful that I must be in a long, unpleasant Category 1 process. Frequent reassurances that things are going well are required. It turns out that dealing with my cancer is even harder on loved ones and friends than it is on me. As it turns out, there are a few resources for them. Anne Orchard wrote a book called Their Cancer - Your Journey. She left a very encouraging comment on David F.'s blog when he was wrestling with this very issue. 

Anne made the point is that there's also nothing you can do to guide others through their journey of dealing with your cancer, other than to be strong and set an example. So don't even worry about it. This means reassuring when you can, and not being bothered when some avoid you. While my situation is not a secret in the workplace, some don't even know, and I don't mention it unless there's a need. Others have convinced themselves that I'm OK, others are still worried that I will be dying soon, and some work hard to avoid me altogether. I try to take it all in stride.

One last word: narcissism. While all of us are self-centered to some degree, having cancer and what you go through and how you adapt IS all about you. Dealing with your having it and what you go through and how you adapt is not about you at all - it's about them. These are two entirely different problems requiring different paths to solution. I would argue that now I have cancer, it really IS all about me. But that fact in no way makes me more interesting.