I have a few ideas that I don't see a lot in cancer circles. Nothing off the deep end like dubious treatments, faith healing or denial (but then those ideas are everywhere across the internet, you'd have to try to avoid them). Simple things, analogies. My favourite is cancer as a siege, rather than a battle. When I pass, I won't be because I lost the battle to cancer, I lost that battle up to a decade ago, years before most of you knew me, and well before anyone would ever do any screening (possibly, although not likely, before my oncologist was even a doctor). Cancer is a well provisioned army, giving seige to your body. Without help, you will sucumb. There is no dishonour in that (which I feel is an unintended implication of losing a battle, you may differ, that's fine).
I think this is the first time my second favourite analogy comes up (it comes up in the comments, not the post). I think it applies to any big change in your life, at least so long as you can accept the implications piecemeal. Those days are completely blocked off to me, they're just a haze of belly button pain, a new, sharp, existential terror, anxiety and a complete lack of sleep. I don't remember what it all felt like, but I do know that I needed those pain killers, and that by needing them I couldn't do a huge part of my job anymore. And that put a timeline on telling my boss about the situation, which put a timeline on letting HR know, etc.. And I know that doing preparation for a colonoscopy at 35, in a maintenance shop with several middle aged men, was only going to beg questions I did not yet want to answer. And that once you've taken a couple of days off for medical testing, even the youngest guys start to get wise.
Every medication, test and appointment brought more scrutiny, and how could they not? People care, they're curious. And when all you want to do is have eight hours a day where you can pretend everything is normal, each bit of that attention spoils your ability to pretend. Until you can't, and you tell everyone how dire the situation really is.
I am glad to be well beyond this stage. I love the currency metaphor for the period in my life between diagnosis and chemotherapy. But I'm beyond that chaotic mess of emotions and personal ignorance. I cannot say I am happy to know everything I've learned in a year, but as best I can remember not knowing anything was much, much worse. Its come up a few times in conversation, but we all genuinely wondered if I'd make it to 2023. And that uncertainty felt much worse to me than knowing that I have between 400-600 days.
Good news! I have something for the abdominal pain now.
Good news! It works really well!
Bad news! I have about the same tolerance for T3s as I do for everything else, so that's fun.
From the comments
James Petrosky: This would be fine if they were for home, but less so for driving and work (especially because the position I'm physically in for driving is really bad for pain.)
James Petrosky: It's great to feel at home in my body for the first time in a year, but the cost is a little bit more of the normal I'm coming to miss more and more every day.
James Petrosky: I've wanted to make posts about "the thing they don't tell you about cancer is" with a thousand little adjustments (buying a new large bottle of extra strength Tylenol every trip to the grocery store, when normally one a year was a lot) but the reality is that you really cling to everything that still feels normal, knowing that many of them have a time limit (the big one for me is work, I think I probably have 2-4 weeks before I go on leave, and I'm not ready to recon with that yet). Today I learned that my reaction to T3s means that I have to give up forklift driving and height work or be risk fairly severe pain. That is a lot of normal lost, and a lot of either lying about why or filling people in on the situation.
What they don't tell you is that normal is the currency you pay along the road to treatment.
And every time you make a payment, the part of your brain you can take a mental break from it in shrinks. Until all that's left is existential terror and exhaustion, from the disease and from the side effects.
That's pretty fucking bleak, I'm not feeling that trash tonight. I have felt that trash, I drove 6 hours alone in pain knowing every second of the trip that the reward I was looking forward to was breaking my parents' hearts with this fucking news. Nothing will ever feel like that.
I'm alright tonight. A little bit high on T3s. Watching math videos and playing with my stupid electronic toy instruments. If I was healthy right now, I'd be doing exactly the same (except it would be cannibis)
It's adorable that I once thought this was oversharing. And maybe it was, but it's got nothing on walking all you all's through the surgical plan in June.
In my defense here, I didn't start writing the diary until September 4th, and my first posts actually talking about medical stuff weren't until the 13th or 14th
Oversharing warning!
.
.
.
Whoda thought that the worst part about the colonoscopy (well, so far, material was sent out for further testing) would be that my sinuses are all plugged and painful
Short discussion about how you can feel great and healthy while still knowing your dying, and that that situation is actually normal, about symptoms and side effects, and planning around them, and about how there's always laundry to do.
I'm 36 now, and my technical selfie abilities have certianly improved, a year of constant practice will do that to you. But more importantly, my comfort with taking my own picture (and having my picture taken) has increased dramatically.
I remember when I was in university, not wanting to be in any of my photos because "why would anyone want to look at me, they want to look at those cool rocks / buildings / geese / whatever. And I wasn't wrong, you should be taking those pictures, too. But I wasn't right. Not in a way that mattered. Its important to appear full of joy in photos, because that is what those who love you want to see. Unless its your job, you aren't going to take a groundbreaking photo of Machu Picchu, but only you and your friends can take one with you and that wonder in the same frame.
The two photos were taken in the same spot, facing the same way. When I said I was bad at selfies, I meant it, it would be months before I found the mirror setting and turned it off.
Back at home after Barrie trip, at the Balm Beach breakwater. Look, I'm 35, I know I'm bad at selfies, and I would normally only share the really good ones. But that isn't what this album is about.
Its been a constant stream of fake medicine, weird new age bullshit ("energy healing"), natural nonsense and, the most frustrating to me, faith healers, for the past year. Mostly on Facebook ads, although genuinely a lot less than I expected, and while Facebook is really bad about taking down con artists, their block function seems to work in a very absolute way. I don't see a lot of objectionable cancer stuff on Facebook anymore.
On the wider internet, things are more dire. Google is terrible about letting you block dangerous advertisers, and the place I spend the second most time is YouTube. Google ads power much of the rest of the internet, too, making it often difficult to navigate.
Its all very frustrating, because even though some of these clowns might genuinely believe in what their doing (new agers and natural fanatics are generally in this camp), the whole lot of them get a lot of people killed. I devoted much of my adult life to scientific skepticism, which puts me, personally, in a good place when it comes to these people. I've seen their claims, often am familliar enough with their products to know if they've been properly tested, and if that testing reflected well on them (none of the things I listed pass these tests). And, if I don't know their products and claims, I have a strong network of people who I trust and who I can ask.
None of which helps the people who were not fortunate enough to be exposed to skepticism. Or those who grew up in the church, and think seeking out real medicine is equivalent to questioning their faith. Or people who's support group is made up of those well meaning frauds who still get people killed.
I want a call to action, to tell you to write your MPP/MLA to kick medical fraudsters out of the medical system, and your MP to put these con artists in jail. But their lobbies are far, far too powerful, because their lies are too profitable. The best I can reasonably hope for is that we can save a few of our most vulnerable from wasting their time, their money and, in the case of people like me, what little life they have left on dangerous charlatans.
If your wondering how fast advertisements for nonsense natural remedies take over your feed, it's within hours (maybe quicker, I was at work and not paying full attention).
I've already blocked and reported a half dozen.
Right now I'm still in a position where I can laugh these off, block some scammers, and move on. If I start to break, someone please just point me at Science Based Medicine to set me straight again ❤️
Friends, thank you for consistantly giving me an escape from a world dominated by existential terrors at every turn. Thank you for keeping me in cute animal photos through chemo and scans and dozens of blood draws. You made it easy to be hopeful when it was possible to be hopeful, and have helped me be peaceful, level and calm now that there's nothing to do but wait. Each and every one of you is fantastic, and while I may have been able to get this far without you, why would I ever want that?
Gone is the pain (literal and figurative) I felt when I wrote this, gone is the terror of the unknown. The horror remains, at least a little bit, but mostly what I feel on this anniversary is gratitude. Thanks for being there, and I sincerely hope you'll remain. It's going to be sad, but there'll be cats at least.
Friends, this is not going to be a happy post. I understand if you take a pass, just know that you're all important to me, you brighten and give colour to my life, and that I love you all.
I've been diagnosed with cancer of the appendix. Its already spread to at least two other places. This is the source of the gut/abdominal/belly button pain I've been complaining about for a while. We've only suspected for just over two weeks. and only had it confirmed this week, so I don't know what the outlook is like, but I'm choosing to be hopeful.
Work friends, please keep this to yourselves. Work is the only place I can pretend things are normal right now and that is important to my mental health.
All friends, please don't tell me you're praying for me. That's often used as a passive aggressive threat towards atheists, and while I know you don't mean it that way, I'm already emotionally spent.
Again, you all mean the world to me, and the world is a better place having all you in it ❤
This isn't even an anniversary I remembered, but on this day in 2022 my partner and I sat with the surgeon I'd been seeing for my abdominal pain and had all our worst fears confirmed by the results of test after test. And you know what? It's fine. I forgot. My partner and I went to the Toronto Zoo, not to mark time but because it's a fun way to spend a summer day.
Apparently the beaver at the zoo has passed away, and that hit me much harder emotionally than August 17 ever could. The beaver wasn't the fattest or roundest of the fatrounds, but they slept right against the glass window that opened into their lodge, so you could always get a good view. The beaver was probably my favourite exhibit.
I have no appointments in the next month. I've grown used to seeing someone every week or two. It's honestly become part of my identity. I'm not upset about it, obviously, but it's still weird. I've been busy, and my strength has been returning, which is also nice.
Today I learned that I have no idea what an ounce is, nor do I have an idea why a medical professional would be using it
From the comments
James Petrosky: I was talking to a dietician, because my diahrea is only going to get worse over time and I wanted some advice. It's fine until we come to meat. I think it was 18 ounces of meat (maybe just red?) per week maximum. But because I got so confused about this unit, I can't remember if it was red, the time interval, or even if it was 18. I'm pretty sure it's per week because that's a lot for a day. And I think the dietician confused ounces to cups with ounces to pounds because I thought it was 8, so that's two contradictory things that are now locked in my brain, ready to cause catastrophic problems in the future
Anyways we're going with generic advice for now, which means more soluble fiber, being careful about insoluble fiber, and patting down foods for extra grease. Nothing I didn't know, but sometimes I need an expert to motivate me.
