[cancer|dreams] A reader questionnaire, of sorts

Last night I dreamt I was involved in the lengthy process of filming a BBC documentary (or possibly mockumentary) about searching for lost Norman treasure in an old English country village. Somehow this eventually transmogrified into me sitting in the driver’s seat of a parked SUV with diplomatic plates in downtown Almaty, Kazakhstan talking to a friend from work (an actual person from Day Jobbery rather than one of those skeevy dream people, :: waves to Dan U. ::), explaining why the Bloggess was so much more popular a blogger than I. And, no, the discussion in-dream doesn’t make sense now. Plus bacon and eggs. Lots of dreaming of bacon and eggs.

Sadly, no bacon and eggs this morning.

Also, it should be pointed out I’ve never been to Almaty. I have, however, been to Ulaan Baator, so my backbrain does have a readymade set for ‘Central Asian cityscape’ available.

I did wonder after I woke up if I should consider splitting my blog into personal/political/cultural/writing stuff (essentially what it was pre-cancer) on one fork, and purely cancer blogging on the other fork. It didn’t take me long to realize that (a) this would be a lot of work I don’t really want to do, especially given the relatively dubious benefits of performing that work; and (b) it would be somewhat dishonest in that I don’t see myself as divided that way, and a lot of what I think about life and politics and writing and my personal stuff is heavily inflected by cancer, as well as vice viscera. So, yeah, we’re not going there unless someone can present me with a truly compelling argument in favor. I mean, that’s why I have tagging and [title brackets] right?

That, however, led me to wonder a bit more about readership here. I am curious as to a few questions, and I’m not going to put this in a poll specifically to enable both verbose and anonymous answers in comments.

So here’s a reader questionnaire, and since turnabout’s fair play as well, consider this an ask-me-anything thread with a non-mandatory focus on the topic of cancer and serious illness.

1) Do you read the cancer posts? Why or why not?

2) Are you a cancer patient or survivor?

3) Do you live with some other serious illness such that the cancer posts are helpful to you in that regard?

4) Are you a friend, family member, loved one or caregiver to someone who falls in the above categories?

5) What helps you most here?

6) What hurts you most here?

I know even some of my frequent fliers in comments are very private about their health, so please feel free to leave your responses and/or questions for me anonymously. This is contra my usual mild preference for signed comments, but very appropriate to the topic.

38 thoughts on “[cancer|dreams] A reader questionnaire, of sorts

  1. 1) Sometimes. Sometimes they are too painful to read.

    2) Yes.

    3) No.

    4) Yes.

    5) I enjoy reading about the things you share — whether it’s cancer, politics, writing, life, etc. It’s interesting to me — and I wouldn’t like to see it split up.

    6) When you’re in obvious distress. I think it’s more empathy than hurt, but it does feel like pain.

  2. Thomas E says:

    1. Yes
    2. I might write about someone with cancer sime day.
    3. I have lipodermatosclerosis
    4. My mother has had recurrant strokes, and a cousin died from cancer.
    5. Seeing how you still manage to write despite your problems.
    6. I don’t like anyone being as ill as you. Fuck cancer.

  3. Allyson says:

    1) Yes, because I care about you (though we have never met) and what you are going through. And because one of my close friends died of cancer in January, and I have a combined intellectual-emotional interest in other people’s cancer journeys. And also because said friend introduced me to your work, so me following all aspects of your blogging life feels like a way of honoring all the gifts she gave me when she was alive.

    2) No, but I lost several family members to cancer, plus the friend mentioned above.

    3) No, but the information and perspectives I get here will probably help me at some point in the future.

    4) Not at the moment, but I have been in the past, both distant and recent.

    5) From a self-interested perspective, your blog posts give me a lot to think about in terms of my own future. Based on my family history, there’s a good chance I’ll end up with cancer someday. I’m doing my best to live a healthy life to reduce my risk, but I also recognize I don’t have control over my future. Reading your posts and comparing and contrasting what you went through with my late friend’s experiences makes me consider how I might want to approach my treatment should I be diagnosed with cancer.

    6) Your journey brings up painful memories of my friend’s struggles, but I don’t begrudge you that. I read in spite of the feelings that come up. I appreciate your honesty.

  4. Patricia says:

    1.Yes, I read the cancer posts along with whatever else you write here.
    2. I am a cancer survivor. Twice.
    3. No.
    4. No.
    5. I am helped by the way you write about cancer here. Both times I had cancer, {11998 and 2000} I had cancer, I wrote about it and my feelings about it but I had to do this in secret since both my doctors and my family were convinced that dwelling on what I was going through would make me worse.
    5. There is nothing that hurts me here. Unless you die, and you are not allowed to do that…

    1. Jay says:

      wrote about it and my feelings about it but I had to do this in secret since both my doctors and my family were convinced that dwelling on what I was going through would make me worse.

      Wow… I am very sorry to hear that. Open-ness is so much less dangerous, I think.

  5. Jan says:

    1. Yes I do. I read them to understand. I have been through Cancer and my Mum died of cancer.

    2. Survivor

    3. Not serious illness, chronic disease.

    4. No

    5. I learn so much.

    6. You going through this Jake. I wish there was a magic wand that would take this all away.

    I admire you.

    Jan

  6. Sarah Grey says:

    1) Yes. I started by reading your writing posts. Writing through illness and personal tragedy is part of that. I’m tired of fluffy happy writer blogs where the worst thing that happens is the cat pukes on the new IKEA rug. If that was the worst life had to offer, writing would be easy.

    2) Nope. Not yet.

    3) No, but my son is “medically fragile,” so some of your medical-care rants are shockingly relevant.

    4) Yes. Everyone I’ve known on my father’s side has died of cancer. Currently, my dad has pancreatic and my aunt has lymphoma.

    5) Knowing, to some degree, what my loved ones are experiencing. They’re very secretive about suffering. No really, they’re fine. It’s just chemo.

    6) That there’s such a taboo surrounding illness and mortality. That illness is so isolating. That there’s a shortage of empathy in the world.

    1. Sarah Grey says:

      Er, #3 should read “Not cancer, but….”

    2. Jay says:

      Yes to all of this. Thank you. And good luck an good health to your son and father and aunt.

  7. Michael says:

    1) Do you read the cancer posts? Why or why not?
    Usually, but not always.

    2) Are you a cancer patient or survivor?
    No, though I did have thyroid nodules initially misdiagnosed as thyroid cancer.

    3) Do you live with some other serious illness such that the cancer posts are helpful to you in that regard?
    No.

    4) Are you a friend, family member, loved one or caregiver to someone who falls in the above categories?
    My grandfather died from Leukemia, my mother-in-law has multiple myeloma.

    5) What helps you most here?
    Can’t really answer that right now. Requires deeper consideration.

    6) What hurts you most here?
    Se #5.

  8. Brian Hiebert says:

    Jay,
    I read all of your posts for many reasons. I read the cancer posts because I had a serious stroke a couple of years ago and reached this blog through your friend who had the bicycle accident (can’t remember her name) and TBI. Alslo, I’ve met you a few times at conventions through JVP and enjoy the links as well as all the posts. You link to stuff I like so I read your blog about every other day when I can.
    Best,
    Brian Scott Hiebert

  9. Josh says:

    1. Yes. I read those posts because I care. I don’t know you except via what you share on this blog and some of your fiction, but I still care. I can’t read your blog and not care.
    2. No
    3. No
    4. No, but it’s likely that I will be in the future.
    5. I don’t know that I can point to any one specific thing that I can point to that helps in the cancer posts, so I’ll tell you how they have helped me in aggregate… I’ve always thought that I didn’t grieve well. I dread funerals because I fear that I will say the wrong thing or fail to express grief in the proper way. My uncle tells me he’s still reeling from the loss of his mother who died several months previous, and I say “that sucks” and I feel like the lamest person in the world that I don’t have better words than that. I care, and I hurt for him, but words fail. From what you have shared, I now think that no one grieves well and no one has magical comforting words. I feel like you have given me tools to approach my own grief and the grief of others honestly and without fear.
    6. If you mean hurt as in harm, then absolutely nothing hurts. Empathetically, I’ve hurt with every item of bad news I’ve heard from you since I started reading your blog a few years ago.

    1. Jay says:

      To your number 5 especially, yes. I had to learn that myself from another friend with serious chronic illness, and it’s a lousy lesson at best. But better learned than not.

  10. Karen F. says:

    Jay, I’ve followed your blog for years, not faithfully, but more often than some others I follow. I do read the cancer blogs to find out how you are doing, and to know what you need prayer for. The writing blogs as well, but not as much because you make me feel guilty that I’m not applying myself to my craft as much as I should. Yes, I am a cancer survivor (Thyroid) with other chronic ailments. And I’ve had many family members who have passed due to cancer, and a few close friends as well. Do your cancer posts help me? Yes. Seeing your courage and fortitude in your life situation inspires me to know that it will be possible when I get that other form of cancer that I believe is probably waiting for me down the road. What hurts me here is that you have to go through it. Strangely enough, what helps me is how you are going through it, day by day, with optimism or realistic pessimism, but peppered with determination and stubbornness in all the right places. God bless, my friend, and give you peace.

    Karen

  11. JRBooth says:

    1) Do you read the cancer posts? Why or why not?

    Yes. Several reasons, mostly stemming from losing my dad to cancer when he was 46 and I was 22.

    Also, you’re a good writer, and you don’t pull any punches, and you remind me to Quit Messing Around And Do The Important Stuff Because You Never Know.

    2) Are you a cancer patient or survivor?

    No.

    3) Do you live with some other serious illness such that the cancer posts are helpful to you in that regard?

    No.

    4) Are you a friend, family member, loved one or caregiver to someone who falls in the above categories?

    No.

    5) What helps you most here?

    Your unflinching honesty. And your posts about being a dad.

    6) What hurts you most here?

    The reminder that when he was my age, my dad was going through these things, and I don’t feel like I did enough to support him and my mom and my brothers.

    And FWIW, I would prefer you not split your blog. It’s all you.

    1. Jay says:

      To your number 6, about how you supported your family, I fear for my daughter in this. As you were young, so is she. Her need to grow and live doesn’t give her the focus on me that my parents and siblings and age-mate friends have. I desperately want her not to have to forgive herself later for what she feels she might not have done for me now, and if I may presume terribly, I imagine your father might have felt the same for you.

  12. MtnSk8tr says:

    After thinking about your questions overnight, I’m ready to weigh in.
    1) Do you read the cancer posts? Why or why not?

    Yes, I read the cancer posts. But, I read most of your posts no matter the topic. I also read your blog prior to your very first diagnosis because it is consistently interesting, thoughtful, articulate with an excellent command of the English language, and gives new POVs to consider. None of that has changed. The thing that has changed is I follow your blog even more closely since your diagnosis for professional insight into the intimate world of someone struggling with cancer — but even more importantly, because I sincerely care about you Jay, and what you are going through. It allows me to know what it going on with you without intruding, being insensitive, or further draining your limited energy.

    2) Are you a cancer patient or survivor?

    No.

    3) Do you live with some other serious illness such that the cancer posts are helpful to you in that regard?

    No.

    4) Are you a friend, family member, loved one or caregiver to someone who falls in the above categories?

    I’ve lost good friends to cancer, as recently as 1.5 months ago. Family members are long-term survivors. I’m a “caregiver” in the professional sense — many of my patients have been diagnosed with cancer at one point although I’ve never been directly involved with prescribing & administering their chemo / radiation / etc. I’ve had to tell a number of patients that their findings were worrisome for cancer and that was why I was ordering more labs, imaging, a biopsy, referring them out, etc.

    5) What helps you most here?

    Intimate, even brutal insight into one person’s journey through ups and downs, including things that are rarely talked about let alone acknowledged even by the person himself. It should be noted that I feel this is your individual experience, and that other people have different ones, also with unique insights.

    6) What hurts you most here?

    The suffering of a fellow human being, their family and friends. I especially ache for The Child and your mother. That I am acquainted with all of you in real life brings it home even more acutely.

    1. Jay says:

      For whatever it’s worth, I’m pleased to help you help others. That is one of my primary stated purposes in all this obsessive documentation, after all. 🙂

  13. Alexis says:

    1) Yes. I find them clinically, emtionally, personally and intellectually interesting. I also read them because I have known you since we were teenagers. Had we never seen or spoken to one another again, I would still have always considered you my friend. You are one of the reasons I am still alive.
    2) Stage III breast cancer survivor, 8 years out.
    3) depression, PTSD
    4)Yes, yes, yes.
    5)Your directness. Your wonderful writing. Your well-reasoned, insightful commentary.
    5)It helps me most to know that you are, at least some of the time, happy.
    6)knowing the odds are not good. That is not to say that I don’t wish to read about your life, the good, bad and ugly, but that I do so knowing it will not always leave me smiling. It is still a gift to know you.

    1. Jay says:

      Likewise, and I’m glad you’re still here. For reasons both from the old days and more recently.

  14. Sydney says:

    1. Yes, I read them because I am an information gatherer by nature. Knowledge is power. Also, I simply want to know how you are.
    2. I am neither a cancer patient nor survivor.
    3. I have no serious illness.
    4. My dad had cancer.
    5. What helps me most is the information. Cancer is still so secret, and so many people hide what’s happening, from doctors to patients to family members.
    6. What hurts most is reading your pain. I’m sorry. I’m so, so sorry.

  15. 1) Most of them. Why? Because I care and because I want to better understand the progress of the disease and the mental state it engenders. When I don’t it’s either because I simply don’t have the time or mental energy to process it.
    2) A minor sarcoma.
    3) Metabolic syndrome (aka insulin resistance)
    4) Yes to all. Which is also why I know I will face some of these issues in the future.
    5) The honesty.
    6) There are some wincing moments, but nothing that really “hurts”. Mostly because of realizing missed opportunities or past misunderstandings in personal history.

    1. Claudia says:

      1. I read all the cancer posts. Several years ago, I had a few brief exchanges with you on the Amazon forums, then one day you said you’d be absent due to cancer treatment, and I’ve followed your blog ever since. I have missed the Jay who was showing thru so brightly in those posts before all your ills befell you.
      2. No.
      3. Yes – I live with the sequelae of a month+ long bout of encephalitis in 2002 (people aren’t meant to run fever of 104F for more than a month). I also live with a disease like lupus but not lupus – a connective tissue disease not otherwise specified that’s turned me into a chronic pain patient since my late 40s (I’m now 61). I know all too well what serious illness can do to the mind and the body.
      4. Both my parents died of cancer – as the only child, I was the only caregiver. A dozen years later, I still cry myself to sleep at night, wishing I’d done more, wishing I could change the past, knowing that wishes are not horses.
      5. Seeing what real courage looks like, feels like – and admiring the unflinching honesty that touches all that you touch.
      6. The loss of yourself that you endure is what hurts the most, and knowing the pain that your child suffers. Even though I was no longer a child when I lost my parents, my age made the loss no less painful. She’s a beautiful girl, your daughter, and the pride you take in her and her accomplishments both helps me and hurts me, because for her to face even the thought of life without you in it is a pain I recognize all too well.

  16. Paul Strain says:

    1) Yes. I feel connected to you and the disease through my own experience and your posts.

    2) My wife is.
    3) Yes. Your posts have helped me separate the long – term effects pf my wife’s ‘cure’ from her person,

    4) See above.

    5) I think just sharing your journey, and knowing that someone else is going through this.

    6) The fact that I can’t do a fucking thing to help you.

  17. Ellen Eades says:

    1) Yes, absolutely. Jay, I’ve liked you ever since I met you many cons ago (and especially since I saw you co-captain an auction with Ellen Klages…wow) and your cancer journey is an intrinsic part of you. I wish it wasn’t and I’d still read you if it vanished tomorrow, though, most happily. I admire your fierceness and your willpower, both of which I sometimes feel lacking in myself, and so you inspire me. Not to mention your politics. And then there’s that car.

    2) No.

    3) No.

    4) My father had prostate cancer, but mostly suffered from Alzheimer’s. Until recently I had only distant friends with cancer. About eight weeks ago a closer friend was diagnosed. I’ve been more deeply affected by his illness and am trying to visit weekly and cook for the family to help out.

    5) As a former PA, your healthcare rants hit home for me and I cheer your outrage. I’ve shared some of your medical-insurance fubars on my FB page. But what I find helps the most is simply the gift of being inside your mind, seeing your life through your eyes, being able to understand what it’s like to be a sick person in all the TMI detail, because I firmly believe that there’s no such thing as TMI, really.

    6) Knowing that you’re suffering and that there’s really nothing I can do to help you. I can only be one of the many bearing witness and hoping for you to beat the long odds. Hang in there. Fuck cancer.

  18. 1.) Most of the time, yes. Sometimes I skim because they can get squicky. But I’m genuinely interested.

    2.) No.

    3.) Yes to serious illness: but it’s mostly well-managed and livable. The occasional constraints it puts on my physical life are almost nothing compared to the deleterious effects Cancer lays on you.

    4.) Not as such. I have had family members who have passed away due to cancer. I know it lurks as a possible bogeyman in my future, with a slightly higher risk than that of the general population.

    5.) I don’t know that any of the cancer posts “help”… They’re informative but they’re terrifying.

    6.) Sometimes the posts get, as I said, squicky. Also… I will go and enjoy “The Hobbit” soon… and then when I’m done I’ll be thinking of you, because your lament at possibly missing the latter entries in the movies made a strong impact on me. It’s also painful to come to grips with the idea that some really great story projects you’ve been working on may not come to complete fruition if you pass too soon.

    1. I hope that doesn’t make me sound like a horrible person… Since I don’t know you personally, your blog and your writing are the primary mechanism by which you’ve impacted my life, so those are the things I’ll feel most directly if you were not here.

      1. Jay says:

        No, not at all a horrible person. This is the context in which you know me. (Or know of me.) 😉

  19. Cora says:

    1) Do you read the cancer posts? Why or why not?

    Yes. Mostly because I want to know how you are.

    2) Are you a cancer patient or survivor?

    No, thank goodness.

    3) Do you live with some other serious illness such that the cancer posts are helpful to you in that regard?

    No. I’ve got some pain and allergy issues, but nothing remotely similar.

    4) Are you a friend, family member, loved one or caregiver to someone who falls in the above categories?

    My maternal grandmother died of breast cancer five years before I was born. Her illness and death still cast a shadow over my childhood, because my mother cast her as this unassailable paragon of goodness while quietly resenting my grandpa’s second wife, the woman who was my real grandma to me. As a result, I’m still left with a lingering resentment against a woman I never knew. I know that I’m being unfair to my biological grandmother, but I can’t help disliking her.
    I have several other cases of chronic illness, severe disability and cancer among my extended family and friends. A neighbour went through chemotherapy at around the same time as your first go-around.

    5) What helps you most here?

    That you’re honest about everything, including the ugly aspects. It seems to me that there is a strange sentimentalisation of cancer in western culture in recent years. On the one hand, cancer is a frequent subject in documentaries, popular culture, etc… and we are constantly told that we must not ignore and suppress the subject. On the other hand, cancer patients are as these strangely serene asexual beings who do first learn to really live their lives and do everything they always wanted before elegantly fading away. It’s a bit like the romantisation of tuberculosis in the 19th century and IMO just as dishonest.
    I think your frank posts serve as an antidote against the kitschy cancer concern sentimentalisation of the popular media.

    6) What hurts you most here?

    Reading about people being ill and in pain is unpleasant.

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