Cancer Selfies

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.

Thomasin doesn't care for moving

I'm pretty excited about moving, but Thomasin? She doesn't like change. She had an anxious day today, and her week is only going to get worse. Her anxious behaviour is cuddling, so I do okay

Partial Bowel Obstruction Part 7: Discharged

I've been discharged, I'm home. We're pretty much where we were on Monday. I've got instructions on how to manage this new condition, but managing is all there is to do. There is no cure, no further treatment. This is just another part of my life now.

Partial Bowel Obstruction Part 6: Hydromorphone

Not sure if I'm more tired of the pain or being extremely high all the time.

From the comments

James Petrosky: Someone in the room has decided that we would all love to hear their country music. I made sure to pack multiple pairs of headphones so I wouldn't accidentally expose anyone to dinosaur podcasts. I'm extremely frustrated but unable to do anything about it

Partial Bowel Obstruction Part 5: Still in Georgian Bay General

Not sure if I'm more tired of the pain or being extremely high all the time.

From the comments

James Petrosky: Someone in the room has decided that we would all love to hear their country music. I made sure to pack multiple pairs of headphones so I wouldn't accidentally expose anyone to dinosaur podcasts. I'm extremely frustrated but unable to do anything about it

Partial Bowel Obstruction Part 4: Ice Cream

It's not all bad, my doctor's ordered full fluids lunch included a doctor's ordered vanilla ice cream

From the Comments

James Petrosky:And I got tea! Coffee this morning was pretty disappointing. I should have tea after meals more, I always really enjoy it in hospitals

James Petrosky: Ron Bedison I'll get into the habbit for a few weeks at a time, then go visit someone or something else to break the cycle, and forget I was doing it. Before this round of chemo, I was having tea and cookies most days in an attempt to eat 5 smaller meals. Chemo ruined that one.

Becca Simmons: My more rural family always drink coffee after a meal. Like, always. It's honestly really nice and idk why I don't do it except around them

James Petrosky: Becca Simmons my parents do the same, and the way they make coffee it would be so easy to make a cup of tea, too, but I never ask. It's a nice little ritual, especially if you pick your deserts to go well with coffee

Partial Bowel Obstruction Part 3: NG Tube

I'm not having the best day

From the comments

James Petrosky: I had the tube after surgery. The tube was my least favourite part of my time in hospital post surgery. I don't think I've ever agreed to something I wanted less than the tube this time

Mica Richard: At least you're a cute elephant? Seriously though feel better ❤️

Partial Bowel Obstruction Part 2

Last night, at around 9PM, I ate a slice of pizza. By the time I was done eating, I knew something was very wrong. My whole abdomen hurt with an intensity only beaten by my pre diagnosis cancer. I should have gone to the ER at this point, but went to sleep instead.

I woke up in still significant, but much reduced, pain and knew I had to go to the ER. I was reasonably sure that what was wrong with me was a bowel obstruction. Tumors along the intestine are a common cause, and unfortunately I have those.

It was a partial bowel obstruction. The doctor knew it as soon as he read my history. Unfortunately proving it with tests took the whole day.

I've been admitted, hopefully not for too long. Since my obstruction is partial, just letting my bowels do their thing, while controlling pain and keeping me hydrated, under observation, might work. I haven't been spoken with about other options yet.