[cancer] The strange emotional terrain of cancer

Recently I was chatting online with a friend who has a rather different cancer course than mine, and faces even deeper challenges than I do. We were talking about the emotional context of cancer, how it inflected her primary relationship and had played a key role in the destruction of mine, and how difficult it could be to find support for the fear, desperation and depression that can grip one.

I mentioned that I had rather disturbed my therapist with a recent comment that it would almost be a relief if I received a terminal diagnosis, because at least then I would know what was going to happen and plan accordingly. My friend almost burst out through the chat window, explaining she’d had the very same thought, and wondered if she was just nuts.

As I said to my therapist at the time, no, of course I don’t want a terminal diagnosis. I want to live on in health, very badly do I want that. But what both my friend and I are reacting to in having such thoughts is the profound uncertainty and complete loss of control that cancer brings into our lives.

This is so hard to talk about. That comment about a terminal diagnosis would seriously freak out my friend’s partner if she made it aloud. It would seriously freak out my family if I just dropped it in conversation. The people around me so desperately need me to get better, to be well, to stop living under daily threat. For me to confess such a despairing thought is a direct challenge to what their heads and hearts need.

But the despair is real. The risk is real. The reality is huge.

Often when I talk about this, I am reminded by whomever I’m talking to that we are all mortal, that we could get hit by a bus at any time.

Ok. Listen carefully to me, people.

Fuck that noise.

It does not help, and it’s specious besides.

I am 47 years old. According to the Social Security Administration, the odds of a generic 47 year old American dying within one year, of any causes, are 0.4208%. Slightly less than one in 200. (Assuming I’m reading the table correctly.) They don’t get significantly stronger over the next few years of middle-aged life.

My personal odds of dying within the next five years are 70%. That’s seven out of ten odds.

Take your proverbial bus and shove it. That’s not a meaningful comparison, and it sure as hell doesn’t make me feel any better when someone trots it out. The overwhelming majority of people don’t wake up thinking that at least if they got hit by a bus their life would have some certainty and some closure. They don’t have any reason to.

When you live with cancer, especially an aggressive (in my friend’s case) or persistently recurrent (in my case) cancer, you walk with death on your shoulder every minute of every hour of every day of your life. Every time I look at my daughter, I wonder how much of her life I will get to be a part of. Every time I talk to my parents, I wonder how they’ll survive my funeral if I should die before them.

Is it any wonder we have these odd ideas about dying?

Cancer produces some strange emotional terrain. It produces some strange thoughts, that we can feel guilty, or even crazy, for thinking at all. It opens deep wells of loss and regret that will never be filled, even if we survive.

If you know someone with cancer, one of the best things you can do is make it safe for them to think and say these things. Don’t deny it, don’t talk them out of it, don’t tell them it will be fine. For frick’s sake, don’t tell them that any of us could be hit by a bus tomorrow. Just accept their words with love and friendship and an absence of judgment. Because these are ideas and thoughts that if swallowed up can consume a person from within, until they feel like a hollow shell of desperation.

Some journeys you never come back from. But sometimes the people around you can help you on your way.

19 thoughts on “[cancer] The strange emotional terrain of cancer

  1. Hey honeyhoney

    I think it would be strange if you didn’t have these thoughts actually. Uncertainty is exhausting. Fighting is exhausting. Cancer treatment itself, exhausting, right? And possible death is right there for you, as you say.

    I’m glad you have the guts to keep fighting because you are a precious part of the world. But if you want to consider what it might be like to die, to plan how you would want it to happen, to make noise about it – my ears are right here ^^ Shoulder too.

    I used to read Elizabeth Kubler Ross – I bet you’ve checked her out? I like the lady and it seemed to help at the time though I can’t remember a lot of it.

    We all need reprieve. I got mine this last couple of weeks and I am still absorbing that. I hope you get yours and that you are also given a life sentence and a happy one 😀

  2. I’ve had similar thoughts about my mother recently. It’s not that I want her to die. Not at all. I desperately want her to get better. But she is fighting her SIXTH recurrence of the cancer, and right now she is sicker than she’s ever been. We are all trying to support her through this illness, and it is killing everyone. It’s utterly exhausting. You can get through this kind of crisis once or twice, but when it becomes a yearly event…well, it’s indescribable how exhausting it is. My mother’s prognosis is much worse than yours right now (her odds of surviving the next week are probably no better than even). If she gets through the current crisis, we are virtually assured of having to repeat this WHOLE ordeal again sometime in a few months or a year or something. It sucks.

    1. Jay says:

      I’ve been following your blog about her travails. I can only imagine. (Well, I *can* imagine, I don’t mean that as the empty social phrase it often becomes.) It’s so hard to know how to think, sometimes. And I’m very lucky compared to many other folks dealing with these issues, your mother very much included.

      I’m sorry you are all going through this.

      1. Thanks–and I did not mean to make a comparison between her situation and yours in that way. Now is not the time to admonish you to count your blessings. What you’re going through is very difficult and it’s not fair.

        1. Jay says:

          Oh, I didn’t take your comment that way. It came from me, trust me. And this is decidedly *not* a contest to see who gets the most cancer merit badges or citations for suffering. Sigh.

          1. Hmmm…cancer merit badges. Someone should do that!

  3. Maureen McHugh says:

    I found the uncertainty to be torturous, especially when it appeared I had relapsed. I knew too much the second time around.

    If people can be convinced to confess of heinous crimes using 16 hours of sleep deprivation and fear, how torturous does months or years of uncertainty become? OF COURSE a terminal diagnosis seems like it would at least end the uncertainty. (It appears it actually doesn’t, by the way. There’s still a ton of what if’s. But I can only assume it answers a ton of questions.)

    And you’re right, Jay. Thanks to cancer I now live in a world haunted by death. Death is real and omnipresent. And yet, I do not expect to be hit by a bus, okay? Nor, for that matter, do I cherish every moment.

    1. Jay says:

      Heh. Yes, even in the best of lives, some moments don’t deserve to be cherished. Me, I sleep through a fair number of moments.

  4. PWStrain says:

    I’m not sure what you gain personally, Jay, from writing these cancer entries and being so open with your medical life. Perhaps it’s a catharsis, a release, a space to get it out there and out of your system.
    Whatever the reason, I’m so very appreciative of each entry. You’ve helped me deal with my wife’s recurring cancers in a way that I just wasn’t able to before I found your blog. I think that I understand her now on a more emotional level, and am better able to cope myself and help her as well.
    So thanks.

    1. Jay says:

      Paul, I’m very glad it helps. My current project is in fact to build an index to the history of the posts, highlighting key elements for people new to the blog.

      As for what I get out of it, I guess that’s two things. One is that I’m an external processor when it comes to managing my own stress and fear. Blogging this so publicly is essentially the ultimate in external processing. Two is exactly your response. If I can convert my stress and pain into something that helps other people, that eases my own sense of suffering and makes me feel like all this horrible crap has a greater purpose.

      So thank you.

    2. Jay says:

      Also, I meant to say good luck and good health to both you and your wife. I’m sorry to hear what she’s going through.

  5. Damian Kilby says:

    Thanks for sharing these kinds of thoughts and experiences Jay.

    1. Jay says:

      You are welcome. I’m glad the discussions are illuminating and/or useful to you.

  6. Leslie Claire Walker says:

    Jay, it’s completely understandable to have those thoughts and feelings. I’ve always thought the best thing a friend can do in this circumstance is just to hold space for the wide range of thought and emotion without judging. Thinking of you and sending a virtual hug.

  7. Giggsy says:

    It’s fair to have anything thoughts and feelings, but at the same time, keep trying to stay positive, hang in there, and kick cancer’s ass!

  8. When cancer came for my grandfather for the third time, he hid it from the rest of us. Only when he could no longer hide his weight loss did he admit to it. For a long time I was upset he did that. Now I’m upset we made him go through another round of surgery to fit our view of him and the world. He had two heart attacks and parts of his colon and pancreas removed from earlier cancer fights. I think he just didn’t want more of his life taken away from him in an attempt to save what remained.

  9. Phil says:

    One of the hardest things about having cancer is managing other people’s reactions. Those closest to you, you want to protect and yet need their support Managing their understanding of prognosis can be so stressful

    A friend told me his fears for himself and his anxieties for his family. He could be totally open with me because he knew, as a fellow fighter we could share the same cancer emotions that someone who has never had cancer could only guess at including our fears of how loved ones would survive
    post our death. How do you have that convo with your child? I couldn’t as a parent my instinct is to protect.

    Gravitating to those who get it is natural. Balancing loved ones hopes and fears can sometimes be very difficult, the instinct is to protect.

    Your blog makes perfect sense 🙂

    Apologies for typos – sent by phone

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