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  1. Embed this notice
    Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:23:48 JST Cory Doctorow Cory Doctorow

    I've got cancer but it's probably (almost certainly, really) okay. Within a very short period I will no longer have cancer (for now). This is the best kind of cancer to have - the kind that is caught early and treated easily - but I've learned a few things on the way that I want to share with you.

    -

    If you'd like an essay-formatted version of this thread to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:

    https://pluralistic.net/2024/11/05/carcinoma-angels/#squeaky-nail

    1/

    In conversation about 7 months ago from mamot.fr permalink

    Attachments

    1. No result found on File_thumbnail lookup.
      Pluralistic: Daily links from Cory Doctorow – No trackers, no ads. Black type, white background. Privacy policy: we don't collect or retain any data at all ever period.

    2. https://static.mamot.fr/media_attachments/files/113/431/305/239/018/150/original/2ea009e1961aae3e.jpg
    • Alexandre Oliva (moving to @lxo@snac.lx.oliva.nom.br) likes this.
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:24:00 JST Cory Doctorow Cory Doctorow
      in reply to

      Last spring, my wife put her arm around my waist and said, "Hey, what's this on your rib?" She's a lot more observant than I am, and honestly, when was the last time you palpated your back over your left floating rib? Sure enough, there was a lump there, a kind of squishy, fatty raised thing, half a centimeter wide and about four centimeters long.

      2/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:24:17 JST Cory Doctorow Cory Doctorow
      in reply to

      I'm a 53 year old man with a family history of cancer. My father was diagnosed with lymphatic cancer at 55. So I called my doctor and asked for an appointment to have the lump checked over.

      3/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:24:23 JST Cory Doctorow Cory Doctorow
      in reply to

      I'm signed up with Southern California Kaiser Permanente, which is as close as you come to the Canadian medicare system I grew up under and the NHS system I lived under for more than a decade. Broadly speaking, I *really* like KP. Its app - while terrible - isn't as terrible as the other apps, and they've taken very good care of me for both routine things like vaccinations and checkups, and serious stuff, like a double hip replacement.

      4/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:24:33 JST Cory Doctorow Cory Doctorow
      in reply to

      Around the time of The Lump, I'd been assigned a new primary care physician - my old one retired - and so this was my first appointment with her. I used the KP app to book it, and I was offered appointments six weeks in the future. My new doc was busy! I booked the first slot.

      This was my first mistake. I didn't need to wait to see my PCP to get my lump checked over.

      4/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:24:46 JST Cory Doctorow Cory Doctorow
      in reply to

      There was really only two things that my doc was gonna do, either prod it and say, "This is an extremely common whatchamacallit and you don't need to worry" or "You should go get this scanned by a radiologist." I didn't need a specific doctor to do this. I could have ridden my bike down to the KP-affiliated Urgent Care at our local Target store and gotten an immediate referral to radiology.

      6/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:25:07 JST Cory Doctorow Cory Doctorow
      in reply to

      Six weeks go by, and my doc kind of rolls the weird lump between her fingers and says, "You'd better go see a radiologist." I called the Kaiser appointment line and booked it that day, and a couple weeks later I had a scan.

      The next day, the app notified me that radiology report was available in my electronic heath record. It's mostly technical jargon ("Echogenic areas within mass suggest fatty component but atypical for a lipoma").

      7/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:25:14 JST Cory Doctorow Cory Doctorow
      in reply to

      But certain phrases leapt out at me: "malignant masses cannot be excluded. Follow up advised."

      *That* I understood. I immediately left my doctor a note saying that I needed a biopsy referral and set back to wait. Two days went by. I left her a voice message. Another two days went by. I sent another email. Nothing, then a weekend, then more nothing.

      8/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:25:20 JST Cory Doctorow Cory Doctorow
      in reply to

      I called Kaiser and asked to be switched to another Primary Care Physician. It was a totally painless and quick procedure and within an hour my new doc's intake staff had reviewed my chart, called me up, and referred me for a biopsy.

      This was my second mistake. When my doctor didn't get back to me within a day, I should have called up KP and raised hell, demanding an immediate surgical referral.

      9/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:25:28 JST Cory Doctorow Cory Doctorow
      in reply to

      What I *did* do was call Kaiser Member Services and file a grievance. I made it very clear that when I visited my doctor, I had been very happy with the care I received, but that she and her staff were clearly *totally* overloaded and needed some kind of administrative intervention so that their patients didn't end up in limbo.

      10/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:25:36 JST Cory Doctorow Cory Doctorow
      in reply to

      This is a privilege. I'm a native English speaker, and although I was worried about a serious illness, I didn't have any serious *symptoms*. I had the ability and the stamina to force action in the system, and my doing so meant that *other* patients, not so well situated as I was, would not be stuck where I had been, with fewer resources to get un-stuck.

      11/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:25:46 JST Cory Doctorow Cory Doctorow
      in reply to

      The surgeon who did the biopsy was great. He removed my mass. It was a gross lump of yellowy-red gunk in formaldehyde. He even let me photograph it before it went to pathology (warning, gross):

      https://www.flickr.com/photos/doctorow/54038418981/

      They told me that the pathology would take 2-5 days. I reloaded the "test results" tab in the KP website religiously after 48 hours.

      12/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:25:54 JST Cory Doctorow Cory Doctorow
      in reply to

      Nothing was updated. After five days, I called the surgical department (I had been given a direct number to reach them in case of postsurgical infections, and made a careful note of it).

      It turned out that the pathology report had been in hand for three days at that point, but it was "preliminary" pending some DNA testing. Still, it was enough that the surgeon referred me to an oncologist.

      13/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:26:03 JST Cory Doctorow Cory Doctorow
      in reply to

      This was my third mistake: I should have called after 48 hours and asked whether the pathology report was in hand, and if not, whether they could check with pathology. However, I did something very right this time: I got a phone number to reach the specialist directly, rather than going through the Kaiser main number.

      14/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:26:17 JST Cory Doctorow Cory Doctorow
      in reply to

      My oncologist appointment was *very* reassuring. The oncologist explained the kind of cancer I had ("follicular lymphoma"), the initial prognosis (very positive, though it was weird that it manifested on my rib, so far from a lymph node) and what needed to happen next (a CT/PET scan). He also walked me through the best, worst and medium-cases for treatment, based on different scan outcomes.

      15/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:26:26 JST Cory Doctorow Cory Doctorow
      in reply to

      This was really good, as it helped me think through how I would manage upcoming events - book tours, a book deadline, work travel, our family Christmas vacation plans - based on these possibilities.

      The oncologist gave me a number for Kaiser Nuclear Medicine. I called them from the parking lot before leaving the Kaiser hospital and left a message for the scheduler to call me back. Then I drove home.

      16/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:26:37 JST Cory Doctorow Cory Doctorow
      in reply to

      This was my fourth mistake. The Kaiser hospital in LA is the main hub for Kaiser Southern California, and the Nuclear Medicine department was *right there*. I could have walked over and made an appointment in person.

      Instead, I left messages daily for the next five days, waited a weekend, then called up my oncologist's staff and asked them to intervene.

      17/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:26:49 JST Cory Doctorow Cory Doctorow
      in reply to

      I also called Kaiser Member Services and filed an "urgent grievance" (just what it sounds like) and followed up by filing a complaint with the California Patient Advocate:

      https://www.dmhc.ca.gov/

      In both the complaint and the grievance, I made sure to note that the outgoing message at Nuclear Medicine scheduling was giving out false information (it said, "Sorry, all lines are busy," even at 2am!).

      18/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:27:02 JST Cory Doctorow Cory Doctorow
      in reply to

      Again, I was really careful to say that the action I was hoping for was both a prompt appointment for me (my oncologist had been very insistent upon this) but also that this was a very broken system that would be letting down *every* patient, not me, and it should be fixed.

      Within a couple hours, I had a call back from KP grievances department, and an hour after that, I had an appointment for my scan.

      19/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:27:12 JST Cory Doctorow Cory Doctorow
      in reply to

      Unfortunately, that was three weeks away (so much for my oncologist's "immediate" order).

      I had the scan last week, on Hallowe'en. It was *really cool*. The gadget was awesome, and the rad-techs were really experienced and glad to geek out with me about the way the scanner and the radioactive glucose they infused in me interacted. They even let me take pictures of the scan visualizations:

      https://www.flickr.com/search/?sort=date-taken-desc&safe_search=1&tags=fluorodeoxyglucose&user_id=37996580417%40N01&view_all=1

      20/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:27:19 JST Cory Doctorow Cory Doctorow
      in reply to

      The radiology report was *incredibly* efficient. Within a matter of hours, I was poring over it. I had an appointment to see the doc on November 5, but I had been reading up on the scans and I was pretty sure the news was good ("No enlarged or FDG avid lymph nodes are noted within the neck, chest, abdomen, or pelvis. No findings of FDG avid splenic or bone marrow involvement").

      21/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:27:31 JST Cory Doctorow Cory Doctorow
      in reply to

      There was just one area of concern: "Moderate FDG uptake associated with a round 1.3 cm left inguinal lymph node." The radiologist advised the oncologist to "consider correlation with tissue sampling."

      Today was my oncology appointment. For entirely separate reasons, I was unable to travel to the hospital today: I wrenched my back over the weekend and yesterday morning, it was so bad that I couldn't even scratch my nose without triggering unbearable spams.

      22/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:27:39 JST Cory Doctorow Cory Doctorow
      in reply to

      After spending all day yesterday in the ER (after being lifted out of my house on a stretcher), getting MRIs and pain meds, I'm much better off, though still unable to get out of bed for more than a few minutes at a time.

      So this morning at 8:30 sharp, I started calling the oncology department and appointment services to get that appointment changed over to a virtual visit.

      23/

      In conversation about 7 months ago permalink

      Attachments

      1. No result found on File_thumbnail lookup.
        http://time.So/
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:27:48 JST Cory Doctorow Cory Doctorow
      in reply to

      While I spent an hour trying various non-working phone numbers and unsuccessfully trying to get Kaiser appointment services to reach my oncologist, I tried to message him through the KP app. It turns out that because he is a visiting fellow and not staff, this wasn't possible.

      I eventually got through to the oncology department and had the appointment switched over.

      24/

      In conversation about 7 months ago permalink
      🗦 𝙴𝚞𝚋𝚒𝚎 𝙳𝚛𝚎𝚠 🗧(🦣) repeated this.
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:28:01 JST Cory Doctorow Cory Doctorow
      in reply to

      The oncology nurse told me that they've been trying for months to get KP to fix the bug where fellows can't be messaged by patients. So as soon as I got off the phone with her, I called member services and filed *another* grievance. Why bother, if I'd gotten what I needed? Same logic as before: if you have the stamina and skills to demand a fix to a broken system, you have a duty to use them.

      25/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:28:08 JST Cory Doctorow Cory Doctorow
      in reply to

      I got off the phone with my oncologist about an hour ago. It went fine. I'm going to get a needle biopsy on that one suss node. If it comes back positive, I'll get a few very local, very low-powered radiation therapy interventions, whose worst side effect will be "a mild sunburn over a very small area." If it's negative, we're done, but I'll get quarterly CT/PET scans to be on the safe side.

      27/

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:28:29 JST Cory Doctorow Cory Doctorow
      in reply to

      Before I got off the phone, I made sure to get the name of the department where the needle biopsy would be performed and a phone number. The order for the biopsy just posted to my health record, and now I'm redialing the department to book in that appointment (I'm not waiting around for them to call me).

      27/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:28:54 JST Cory Doctorow Cory Doctorow
      in reply to

      While I redial, a few more lessons from my experience. First, who do you tell? I told my wife and my parents, because I didn't want to go through a multi-week period of serious anxiety all on my own. Here, too, I made a mistake: I neglected to ask them not to tell anyone else. The word spread a little before I put a lid on things. I wanted to keep the circle of people who knew this was going on small, until I knew what was what.

      28/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:29:12 JST Cory Doctorow Cory Doctorow
      in reply to

      There's no point in worrying other people, of course, and my own worry wasn't going to be helped by having to repeat, "Well, it looks pretty good, but we won't know until I've had a scan/my appointment/etc."

      29/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:29:21 JST Cory Doctorow Cory Doctorow
      in reply to

      Next, how to manage the process: this is a complex, multi-stage process. It began with a physician appointment, then a radiologist, then a pathology report, then surgery, then *another* pathology report, then an oncologist, then a scan, then another radiologist, and finally, the oncologist again.

      30/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:29:33 JST Cory Doctorow Cory Doctorow
      in reply to

      That's a lot of path-dependent, interdepartmental *stuff*, with a lot of ways that things can fall off the rails (when my dad had cancer at my age, there was a big gap in care when one hospital lost a *fax* from another hospital department and my folks assumed that if they hadn't heard back, everything was fine).

      31/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:29:37 JST Cory Doctorow Cory Doctorow
      in reply to

      So I have been making *extensive* use of a suspense file, where I record what I'm waiting for, who is supposed to provide it, and when it is due. Though I had several places where my care continuity crumbled some, there would have been *far* more if I hadn't done this:

      https://pluralistic.net/2024/10/26/one-weird-trick/#todo

      32/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:29:45 JST Cory Doctorow Cory Doctorow
      in reply to

      The title of this piece is "how to have cancer," but what it really boils down to is, "things I learned from my own cancer." As I've noted, I'm playing this one on the easiest setting: I have no symptoms, I speak and write English fluently, I am computer literate and reasonably capable of parsing medical/technical jargon. I have *excellent* insurance.

      33/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:29:59 JST Cory Doctorow Cory Doctorow
      in reply to

      If any of these advantages hadn't been there, things would have been a *lot* harder. I'd have needed these lessons *even more*.

      34/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:30:11 JST Cory Doctorow Cory Doctorow
      in reply to

      To recap them:

      * See a frontline care worker as soon as possible: don't wait for an appointment with a specific MD. Practically any health worker can prod a lump and refer you for further testing;

      * Get a direct phone number for every specialist you are referred to (add this to your phone book); call them immediately after the referral to get scheduled (better yet, walk over to their offices and schedule the appointment in person);

      35/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:30:28 JST Cory Doctorow Cory Doctorow
      in reply to

      * Get a timeframe as to when your results are due and when you can expect to get a follow-up; call the direct number as soon as the due-date comes (use calendar reminders for this);

      * If you can't get a call back, an appointment, or a test result in a reasonable amount of time (use a suspense file to track this), lodge a formal complaint with your insurer/facility, and consider filing with the state regulator;

      36/

      In conversation about 7 months ago permalink
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      Evan Prodromou (evan@cosocial.ca)'s status on Wednesday, 06-Nov-2024 09:30:36 JST Evan Prodromou Evan Prodromou
      in reply to

      @pluralistic *WHEW*

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:30:43 JST Cory Doctorow Cory Doctorow
      in reply to

      * Think hard about who you're going to tell, and when, and talk over your own wishes about who they can tell, and when.

      As you might imagine, I've spent some time talking to my parents today as these welcome results have come in. My mother is (mostly) retired now, and she's doing a lot of volunteer work on end-of-life care. She recommends a book called *Hope for the Best, Plan for the Rest: 7 Keys for Navigating a Life-Changing Diagnosis*:

      https://pagetwo.com/book/hope-for-the-best-plan-for-the-rest/

      37/

      In conversation about 7 months ago permalink

      Attachments


    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:30:51 JST Cory Doctorow Cory Doctorow
      in reply to

      I haven't read it, but it looks like it's got excellent advice, especially for people who lack the self-advocacy capabilities and circumstances I'm privileged with. According to my mom, who uses it in workshops, there's a lot of emphasis on the role that families and friends can play in helping someone whose physical, mental and/or emotional health are compromised.

      38/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:30:59 JST Cory Doctorow Cory Doctorow
      in reply to

      So, that's it. I've got cancer. No cancer is good. This cancer is better than most. I am almost certainly fine. Every medical professional I've dealt with, and all the administrative support staff at Kaiser, have been *excellent*. Even the doc who dropped the ball on my biopsy was really good to deal with - she was just clearly drowning in work.

      39/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:31:09 JST Cory Doctorow Cory Doctorow
      in reply to

      The problems I had are with the system, not the people. I'm profoundly grateful to all of them for the help they gave me, the interest and compassion they showed, and the clarity and respect they demonstrated in my dealings with them.

      I'm also very grateful to my wife, my parents, and my boss at EFF, all of whom got the news early and demonstrated patience, love, and support that helped in my own dark hours over the past couple of months.

      40/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:31:16 JST Cory Doctorow Cory Doctorow
      in reply to

      I hope you're well. But you know, everyone gets something, eventually. When you find yourself mired in a broken system full of good people, work the system - for yourself and for the people who come behind you. Take records. Make calls.

      Look after yourself.

      41/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:31:24 JST Cory Doctorow Cory Doctorow
      in reply to

      Next weekend (November 8-10), I'll be in Tucson, AZ: I'm the Guest of Honor at the Tuscon science fiction convention:

      https://tusconscificon.com/

      eof/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:32:16 JST Cory Doctorow Cory Doctorow
      in reply to
      • gz

      @godzero Thanks.

      In conversation about 7 months ago permalink
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      gz (godzero@sfba.social)'s status on Wednesday, 06-Nov-2024 09:32:17 JST gz gz
      in reply to

      @pluralistic
      Oh no! So glad you caught it early and all the best for a full and quick recovery.

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 09:32:20 JST Cory Doctorow Cory Doctorow
      in reply to
      • Meredith

      @dangerousmeredith Thank you.

      In conversation about 7 months ago permalink
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      Meredith (dangerousmeredith@c.im)'s status on Wednesday, 06-Nov-2024 09:32:21 JST Meredith Meredith
      in reply to

      @pluralistic I'm glad the cancer was caught early. All the very best wishes for your treatment and recovery.

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 10:12:52 JST Cory Doctorow Cory Doctorow
      in reply to
      • Matthew Merkovich

      @MattMerk I'm glad to hear it.

      In conversation about 7 months ago permalink
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      Matthew Merkovich (mattmerk@mastodon.social)'s status on Wednesday, 06-Nov-2024 10:12:53 JST Matthew Merkovich Matthew Merkovich
      in reply to

      @pluralistic Sorry to hear all this, Cory, but you've been hearing that a lot lately. I know because I just ended treatment a year ago for my also very treatable form of cancer. All my friends live in Southern California, and a couple of them said I needed to go to UCLA for the best care, but here in Boulder County, CO, I got world-class care, with next day appointments, an Oncologist from MD Anderson, and a wonderful care team. 1/

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 10:14:24 JST Cory Doctorow Cory Doctorow
      in reply to
      • Amber Or Bust

      @masp Thank you.

      In conversation about 7 months ago permalink
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      Amber Or Bust (masp@wandering.shop)'s status on Wednesday, 06-Nov-2024 10:14:26 JST Amber Or Bust Amber Or Bust
      in reply to

      @pluralistic Fingers crossed for you! And thank you for sharing this in the best possible way.

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 10:14:44 JST Cory Doctorow Cory Doctorow
      in reply to
      • cmdln

      @cmdln Thank, Thomas.

      In conversation about 7 months ago permalink
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      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 10:14:59 JST Cory Doctorow Cory Doctorow
      in reply to
      • Anne of Green Cables

      @AnneOfGreenCables Thank you.

      In conversation about 7 months ago permalink
    • Embed this notice
      Anne of Green Cables (anneofgreencables@noc.social)'s status on Wednesday, 06-Nov-2024 10:15:00 JST Anne of Green Cables Anne of Green Cables
      in reply to

      @pluralistic so glad you're OK, it is easily treatable, and you have the wherewithal to deal with bureaucracy.

      In conversation about 7 months ago permalink
    • Embed this notice
      cmdln (cmdln@thecommandline.social)'s status on Wednesday, 06-Nov-2024 10:15:04 JST cmdln cmdln
      in reply to

      @pluralistic I am so glad there is plenty of cause for optimism. I am amazed at the lessons and advice you are sharing, let alone dealing with the experience itself.

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 10:15:14 JST Cory Doctorow Cory Doctorow
      in reply to
      • CC_FL_IT_GUY

      @devans143 I wish you the best of luck and care.

      In conversation about 7 months ago permalink
    • Embed this notice
      CC_FL_IT_GUY (devans143@phpc.social)'s status on Wednesday, 06-Nov-2024 10:15:16 JST CC_FL_IT_GUY CC_FL_IT_GUY
      in reply to

      @pluralistic You are quite literally your own best advocate. I trust the Oncology people I visit, but I read all their notes, ask questions, and push to get answers. So far so good.

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 10:15:17 JST Cory Doctorow Cory Doctorow
      in reply to
      • Darren du Nord

      @darren Thank you.

      In conversation about 7 months ago permalink
    • Embed this notice
      Darren du Nord (darren@c.im)'s status on Wednesday, 06-Nov-2024 10:15:18 JST Darren du Nord Darren du Nord
      in reply to

      @pluralistic so sorry to hear, but congrats on early detection! Hoping for your health and longevity.

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 10:23:18 JST Cory Doctorow Cory Doctorow
      in reply to
      • Matthew Merkovich

      @MattMerk Thank you. I agree -M4A now.

      In conversation about 7 months ago permalink
    • Embed this notice
      Matthew Merkovich (mattmerk@mastodon.social)'s status on Wednesday, 06-Nov-2024 10:23:19 JST Matthew Merkovich Matthew Merkovich
      in reply to

      @pluralistic I felt a little bothered that your care in California had so many bumps, mostly because I loved my life in The Golden State. And I hate to see what you had to deal with, no matter how not-that-bad it was.

      I'm glad to see you are doing better, though. I'm NOT glad that you too now have years of hitting your insurance deductible for all the followup visits.

      This insurance-company-CEO-pay-care system we have really needs to go!

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 10:56:36 JST Cory Doctorow Cory Doctorow
      in reply to
      • Dalia_Z

      @daliazygas I agree. Thanks.

      In conversation about 7 months ago permalink
    • Embed this notice
      Dalia_Z (daliazygas@mastodon.online)'s status on Wednesday, 06-Nov-2024 10:56:37 JST Dalia_Z Dalia_Z
      in reply to

      @pluralistic Excellent advice on how to advocate for yourself. Nothing is worse than waiting for results only to find out information had slipped through the cracks.

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 11:25:50 JST Cory Doctorow Cory Doctorow
      in reply to
      • Aphrodite ☑️ :boost_ok:

      @Aphrodite Oof. I hope you're well now.

      In conversation about 7 months ago permalink
    • Embed this notice
      Aphrodite ☑️ :boost_ok: (aphrodite@chaos.social)'s status on Wednesday, 06-Nov-2024 11:25:52 JST Aphrodite ☑️ :boost_ok: Aphrodite ☑️ :boost_ok:
      in reply to

      @pluralistic

      “Easy mode” cancer is still cancer.

      My cancer 12y ago could’ve been called an “easy mode” cancer, but it still cost me a third of my kidney and required a 12h surgery.

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 11:26:01 JST Cory Doctorow Cory Doctorow
      in reply to
      • shonin

      @shonin Thank you. I hope you're OK.

      In conversation about 7 months ago permalink
    • Embed this notice
      shonin (shonin@mastodon.world)'s status on Wednesday, 06-Nov-2024 11:26:03 JST shonin shonin
      in reply to

      @pluralistic I have leukemia and a stuttering heart, so have had parallel experiences to everything you describe and especially the "good people broken system" part. Wishing you a clear path and may all the tigers that jump in your way prove to be tigers you can pet. 🙏

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 11:26:19 JST Cory Doctorow Cory Doctorow
      in reply to
      • aswack

      @swacknificent Thank you.

      In conversation about 7 months ago permalink
    • Embed this notice
      aswack (swacknificent@fosstodon.org)'s status on Wednesday, 06-Nov-2024 11:26:20 JST aswack aswack
      in reply to

      @pluralistic thank you for sharing your story and advice! Sorry to hear you’ve been contending with this frustrating system, glad the prognosis seems good!

      In conversation about 7 months ago permalink
    • Embed this notice
      Cory Doctorow (pluralistic@mamot.fr)'s status on Wednesday, 06-Nov-2024 11:32:58 JST Cory Doctorow Cory Doctorow
      in reply to
      • VulcanTourist

      @VulcanTourist Hope you get a clean bill.

      In conversation about 7 months ago permalink
    • Embed this notice
      VulcanTourist (vulcantourist@autistics.life)'s status on Wednesday, 06-Nov-2024 11:32:59 JST VulcanTourist VulcanTourist
      in reply to

      @pluralistic

      Hello and well met, fellow caught-early-and-treated early cancer survivor. For me it was colon cancer, also treated through KP. It's only been a few years yet, and I'm due for another status colonoscopy in mere days.

      In conversation about 7 months ago permalink

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