Cancer Selfies

Hospice

Hospice Suite. St. Joseph's General Hospital, Elliot Lake, Ontario.

The hospice suite is my home now. I've been in treatment for a partial bowel obstruction for a few weeks. For a while, it was promising, but then things turned, and the word hospice was uttered more and more regularly.

I have thoughts about many things, about how we talk about people as having lost their battle with cancer (you do you, but it's not for me), the ubiquity of Fuck Cancer bumper stickers (you do you, not for me) and even my own cancer as a seige (I like it more than a battle, but ultimately it shares the same problem). I can't stand the hushed tones and terror in our voices, as though it was some cheap fantasy villian.

All I've got, after two years of treatment and surgeries and hospital stays and mounds of medications and so much vomiting is the slowed down, minor key, horror movie trailer cover of Abba's Waterloo. Something fun and wonderful turned terrible, terrible but somehow compelling.

I intend to remain in hospice for the majority of the remainder of my life. I would love to see people. Lots of people. The celebration of life that will follow my passing will be a smaller, quieter affair, to reflect the wishes and needs of my family.

The Hospice Suite is located at St. Joseph's General Hospital in Elliot Lake, Ontario. 70 Spine Lake Road. Visiting hours are listed as 11AM-7PM, but staff have been really flexible with us so far.

Elliot Lake is two hours from either Sudbury or Sault St. Marie, has one hotel (Hampton Inn, it's nice), there are highway side motels (varying quality) and some options in Blind River (40 minutes away).

Because of disease progression, and especially the amount of painkillers I'm on, I don't have as much internet energy as I used to. I'm trying to read everything as I can, but I won't be able to respond as I used to. It's just the nature of my Waterloo.

I love you all, you've meant so much to me for as long as I've known all of you, and especially for the last two years.

PS the hospice is animal friendly, so you might get to meet an orange cat (but she's been anxious, so we might leave her at home)

PPS this is a catholic hospital, and that's a complicated question for the healthy to debate, I'm not interested in that debate, any discussion of religion (I'll fist bump and share a Coke over some forms of annihilation) and any discussion of politics.

PPPS I don't know how long I have.

From the comments

There were many kind responses to this post. I don't have the heart to go throuhg them again. The scrapbook records them.

Consider donating to St Joseph's Hospital in Elliot Lake, they do excellent work for a small community. They're working on improving their oncology area, which is very close to my heart. These improvements will allow more patients to recieve their treatment in the community they live in, rather than traveling two hours each way to the nearest cancer centre.

If you want to keep your money closer to home, then please consider donating to a hospice. The one here has given me and my family so much joy and comfort in a very difficult time in our lives time. I don't think I'd still feel as alive and vibrant, and I would not still be creating, without the care this hospice provides. Hospice is a gift we all deseve at our appointed hour.

Body Horror

I think that scene in Annihilation where the guys intestines are writhing like snakes captures how I feel a lot of the time

From the comments

James Petrosky: Cancer is living body horror. There are constant new and grotesque violations. You always know the ultimate cause (those immortal detector cells), but your never sure what devious plot they're on now.

You know how the movie ends, and what the last few minutes look like. But you'll never predict that third act bear monster / the loss of the ability to feel comfortable when your sitting or lying down. The violations do not stop.

Heat Wave

It's a heat wave! I'm using a heat pad on high! What a wondrous time to be alive!

From the comments

James Petrosky: No, I don't have AC. I don't even have particularly good fans (job for tomorrow). But at least I'm on the edge of the hear wave, and we're down to 25, which is what I kept my apartment at all winter

The return of belly button pain

I'm experiencing an awful lot of belly button pain for someone who hasn't had one in over a year

From the comments

Mica Richard: A phantom navel could be a good Halloween cocktail

James Petrosky: Mica Richard features an olive without pimento

Cancer is Biphobic

As part of my pain prevention and management routine, I have to sit like a regular person at all times. Which means that in addition to a handful of other very bad things, cancer is also fucking biphobic.

From the comments

James Petrosky: This is a very silly joke that is also 100% factual

Ëmmy Smäll: welp I just almost horked the water I was drinking out my nose

Justine Wiesinger: Oh no, with your feet on the FLOOR? 🤢 I have been struggling with this over the past week

James Petrosky: Justine Wiesinger I can't even cross my legs for very long (but also can't make myself stop doing it)

Justine Wiesinger: James Petrosky Yes all week I felt unable to do crafts like cross stitching because I couldn't pull my feet up onto the couch so what's the POINT

Justine Wiesinger: UNCOZY ❎DISRESPECTFUL TO QUEER CULTURE 👎👎

Mareile S. Håland: The dreadfullest cancer fact yet 😮 /lh

Christa Pace Martin: That’s just rude.

Stefanie Culp: That’s just disrespectful of it and during pride month too, how dare

Ross Keith: I fucking knew it

**Rebecca Liddle Blair: Nooooooo…whyyyyy… I have spine issues that also don’t like that I bi-pretzel, but I do it anyway!

Sarah Baggs: Ugh when I’ve hurt my hip and need to sit up straight to avoid the pain it is like TORTURE

Reflecting on HIPEC

There are a lot of times in my life where things didn't go quite as planned. Today is the one year anniversary of she they went nearly as far from planned as possible. This day in 2023 was HIPEC surgery day.

I expected to be a lot more emotional about it. Expected the past week to bring some dread or excitement, but instead I've only broken routine for my little adventure yesterday. I want to say I got the buttertarts or lemon squares to celebrate, to mark time, but I wasn't thinking of any of that.

So here's to surgery day, the day we all lost hope for a cure, or long term treatment, and the start of when I stopped letting that bother me.

The following was originally posted June 9, 2023

Months ago I expressed my distaste for the cancer as a battle or fight metaphor. It might represent some people well, especially those with stage 1 illness, but it doesn't reflect my experience. For me, cancer has been a seige. And today, friends, the relief forces have arrived, and we're going to do our damndest to break that seige. We done everything we can to ensure success, and now it's all in the hands of the fates.

The variaties of lower back pain.

Another day, another exciting new pelvic/lower back pain preventing me from living my life (doing laundry, going to Blind River to try a chip truck)

From the comments

James Petrosky: T3s work on most pain pretty well, except this one. Nothing works on this one. Maybe a round of chemo will, but that's just trading bad symptoms for bad side effects.

A stronger pain killer might help, but history tells me I'd be too stoned to drive all the time, and I'm already feeling pretty trapped at home.

James Petrosky: I had a few more days worth of pride posts planned, but I don't have the energy anymore. I hope everyone has a good time, and that bigots get some sense knocked into them by a giant magic goose, but that's all for me.

Northeast Cancer Centre

When I moved a month ago, I left my old health region. This means finding a new primary care physician, palliative care physician and oncologist. I'm still working on a GP and waiting on a referral for a local palliative care doctor, but today I met my new oncologist.

In the past month, my symptoms have gotten noticibly worse. The pain in my kidney is more severe, and more common, and the other one has joined in, too. Plus, lots of random pelvic pains. Codine is controlling it well, but this is the first time since diagnosis I've needed regular pain control.

We'll be restarting chemo as soon as we can because of this. There are tests and paperwork to get out of the way first, but my doctor would like to have it going in the next couple weeks. Between the first and second rounds of chemotherapy, I had six months (most of which were spent recovering from surgery), this time I'll have around two. I'm doing well, given the situation, and am in good spirits, but the disease is progressing, it cannot be stopped, and the outcome has never been in question.

And as a way to show how completely this experience has changed me, I confidently, and completely without anxiety, asked how much time I have left. And the answer didn't phase me. Human beings can adjust to, and become skilled at, anything.

A year.

Which is an upgrade over what I thought this morning.

From the comments

James Petrosky:I share a lot, but also don't talk about a bunch of things. January and February were very hard for me, having a birthday that was poorly marked (chemo's fault, it was celebrated eventually) when you know, with low but significant, certainty that it will be your last is one of the most difficult things I've ever had to do. I'm not excited about doing it again.

No, you (everyone) couldn't have done anything to help, or I'd have asked. I almost never talk about it, but the cancer centre does have some mental health support. I've made extensive use so far.

The weird way pain manifests

I think, through culture and experience, we all understand that cancer brings a lot of pain. Friends, they don't lie, but I've never seen anyone talk about how weird that pain can be.

This message brought to you by my body interpreting skin stretching, of the regular sort that might happen if you were laying on your side, as somewhere between discomfort and pain.

From the comments

JamesP: In some people and cases, constipation can register as back or hip pain. For me, it's every time I need to use the washroom.

JamesP And, just for fun, I get random stabbing pains throughout my pelvic region. I suspect this is an impacted nerve. It can happen any time, but generally comes in clusters and usually with other sources of pain

Christine Otterman: I guess it's got to be an all around unnatural experience. It would be hard to not be suspicious of what it is and what it means. It's probably difficult to articulate, therefore no one talks about it!

Janet Dorion That sucks. I can't imagine. You are so strong!

James Petrosky It's a bad situation, but I'm usually feeling okay much of thday, although the evening is devoted to pain management so that I can enjoy the next day as much as possible.

Brennan Moline: Susan Sontag, in writing about her own cancer, once discussed how pain tests the limits of human language. That it becomes incredibly isolating because it's impossible to truly explain to someone else.

ADHD, Again

Anyone else find that opening and closing curtains is one of the most surprisingly mentally taxing things you do daily?

This post brought to you by ADHD

From the comments

James Petrosky: I have no choice here, my apartment faces the enterence and I have no desire to flash all the retired people, but at my last place I think I touched them once every few months, more to track the sun than anything else.

Boil water over!

After eight days the tap water is officially safe again!

From the comments

James Petrosky: Which is great for us, but a week is not a long term advisory, and at least 28 First Nations communities are still under long term (over one year) advisories. A week sucked, a month is unimaginable to me, and I have no words for what a long term advisory would be like.

Boil Water day five

We're on day five of a boil water order and it's rough on regular people, but between my kidney and the cancer I need to drink so much more, and the whole process is exhausting.

From the comments

James Petrosky: 5 days is a lot, but it's also fucking nothing. Neskantaga First Nation has been doing it for 29 years pretty much only because we suck and are racist.

Partial Bowel Obstruction, Redux (Forshaodowing)

Was up half the night trying to decide if I should visit the hospital because of a new, exciting and particularly spicy pain. Thankfully I don't remember much, but I fell asleep eventually and woke up with regular levels of pain.

From the comments

James Petrosky: It didn't feel anything like another obstruction. That was distinct. I think it sometimes just really sucks to be conscious for no good reason.

James Petrosky:I have chores and hotels to book and I just can't get enough give a fuck going to do any of it. If I don't soon I'm going to ruin my whole trip and I just can't care.

A day off with Thomasin

We've given up on unpacking for today, and are going to take tomorrow off to lay around and do nothing. We've earned it.

From the comments

Brennan Moline: How is Thomasin adjusting? She looks comfortable

James Petrosky: Brennan Moline she was overwhelmed the first day of packing, and at the hotel during travel, but has been excitedly exploring and plotting escape into the hallway for days now. She's probably doing better than I am James PetroskyIt helps that the bed and bedding are the same, and she still has her cat tree. The constants are safety when overwhelmed

Unpacking

It's hard to unpack when whenever you sit down, anywhere, a cat is almost immediately on your lap.

From the comments

James Petrosky: It happened again

Sadie

Did a lot of work today, and am very happy with progress, but the best part of the day was the 15 seconds I got to pet a golden retriever

From the comments

James Petrosky: His (her?) name is Sadie and I've been trying to pet them for years, but they've always preferred to play with the poodles, and honestly I can't blame them

Lying in bed

It's hard when you're condition makes you need to lie down so much that lying down itself is uncomfortable

From the comments

James Petrosky: Starting with chemo, I've spent 12 days mostly in bed (including one night in a gurney that was really bad). But I just don't have energy

Moving Day! Part 3

Moved into my new apartment! Lots of unpacking done! It's a very nice place, except there are no overhead lights and my phone charge socket is switched.

Moving Day! Part 2

I'm at a hotel in Sudbury, my destination for the day. A few things:

• Thomasin is enjoying exploring the hotel room, I also let her out on the car while I was taking bathroom breaks and she loved exploring there, too. She's only left my apartment once since I adopted her, so today is a very big day

• There is a pagent going on in the hotel for adult women. I didn't know those were a thing. It's pretty cool. I chatted with someone I assumed was a judge but who was actually a really enthusiastic participant

• A lot of the tv stations I can receive are American. I will never, ever get used to drug ads. But they're a price I'll pay for The Fifth Element, which is easily the best thing I've ever seen in a hotel

From the comments

Kate Lux: Yeah, there are "Mrs ___" pageants (25-40, I think) and I think ones for seniors too.

James Petrosky: Kate Lux the world can be a strange and beautiful place. It does explain the women my age in prom dresses I saw when I arrived, though. James Petrosky: Even in a strange place like Sudbury, you don't have weddings on a Thursday. Which was the only reason I could think of

Moving Day! Part 1

We're on the move!

From the comments

James Petrosky: *Thomasin is in a carrier when we're actually on the move

**Stefanie Culp: What a solid navigator!

Sarah Marie Yurkiw: I hope it all goes very well.

Tu Biederman: Thomasin is SO CUTE I want to cry

Beverley Singer: She looks like she’s enjoying the ride.

James Petrosky: Beverley Singer she's traveling much better than I expected

Brennan Moline: So much trust in you ❤️

Ryan McGill: This is a GORGEOUS picture.