I wanted to go for a walk, but Thomasin had other ideas. She loves cuddles in the computer chair, and I sit with her as long as I can, but it's often a very painful position. Tonight I had to get up first, and she's sulking about it.
Today has been an exhausting day, physically and mentally. Mentally, going into work for the last time before treatment was a lot. Everyone has a different way to process bad news from an acquaintance or coworker. And I've been unable to control the pain at all the last couple of days, I have some ideas why (because nothing materially changed with my condition the last few days, so it's got to be behavioural in part) and I have an appointment with my nurse practitioner next Tuesday, so we'll get this solved.
Anyways, ice cream always helps. My favourite place is soon to be closed for the winter, so I simply must take advantage before then. Thomasin has become aggressively cuddly, she really enjoys when I spend lots of time at home, so at least someone is going to benefit from my situation ❤️
Some bonus Thomasin
The disability paperwork is submitted. I'm officially off until the end of treatment. Whenever that is. Normally it feels great to leave work for almost any reason, I've finally found one where that isn't true. The first is a service entrance, the second is the maintenance office (but people were around so the mask is ready to go back on)
Early morning, with Felexine. I haven't really slept well at all, the pain has been too intense. I don't think anything has changed with disease progression since last week, I think it has to be behavioural. I'm pretty constipated from the T3s, and that is at least part of it. I need to call my nurse practitioner about work paperwork regardless, so I'll ask then.
I'm going into work this morning to hand in my short term disability paperwork. And to tell the final people who don't know what's going on, and telling them I'll be away for at least six months. I was dreading this all last week, but after Friday it doesn't seem nearly as bad. The benefit of perspective, I guess. Everyone's going to be supportive, but it's still going to be an exhausting morning.
Maurice and I, exhausted at the end of the day. Turns out the 5km and the agonizing pain of the drive home (just 20 minutes, but a 20 minutes that stretched forever) was overdoing it. I've barely been out of bed since, except to be bad at labour solidarity and buy some pizza.
The fatigue has crept up on me so carefully and quietly that I only noticed after it became completely overwhelming.
I still experience happiness and joy, and am still driven by hope, and these things aren't failing. But I'm just so tired now.
Thank you, everyone, for your kindness and your words and your attention. It's so much easier to stay hopeful when I feel noticed, seen, wanted. You're all amazing ❤️
Afternoon. I over did it on the walk. I nearly pulled over several times during the drive home because sitting is one of the worst positions to be on, but walking is fine, and helps a lot in the short term. I want to be able to drive myself to most of my appointments, but if it keeps up like this, I'm not going to be able to. Long term I have significantly more existential fears, but short term it's all about losing normal, and I'm terrified of losing the normal of mobility in my life. I have enough friends and family to get me through this if I do, but it would be devistating for my mental health.
Tiny Marsh. The marsh isn't small, Tiny is just the name of thr township. I over did it with a 5ish km walk this morning. There were many swans, some ducks, but no geese. The marsh is similar to the wetlands I grew up with, with similar shore species and lots of cattails, but the lack of rock and jackpine makes it special and unique to me. Even if it's absolutely typical of every wetland in the area. Plus there's always so many cool dogs (no photos, I keep to myself as best I can)
Morning. I'm a side sleeper, and I haven't been able to side sleep for months and months because of the cancer pain. Even now I'm still not good enough at sleeping propped up that I can reliably get a good night's sleep. Last night I did not sleep well, which is fine, I'll just need a nap later.
Nessie and her soft soft corderoy belly is mg favourite Squish. I set them up on the other side of the bed, but she's always within reach if I need a quick squish. I should have gotten something like this years ago, it's so pleasant and comforting. Don't be too adult or manly or whatever for something to squeeze.
I reflected on this on September 9, 2023
If the chemo is going to take my hair, I'm going to have fun with it first
James Petrosky: *it isn't a forgone conclusion that I'll lose my hair, and I'm pretty excited about this whole thing
Night at the Balm Beach breakwater. I'm not good at low light photography, but I still like how these came out. It's Labour Day weekend, which is the end of the tourist season here. I'm normally pretty happy about that, I like how quiet it gets and I like the storms that roll in off Lake Huron in the fall. Today, looking at the Balm Beach Smokehouse made me cry a bit. Major markers of time feel a lot more final, more perminant. It was too much, I had to head home.
James Petrosky: This is what I was looking at at the end, when the weight of it all was becoming too much. It's so kitschy and silly but I love it so much. I'd have gotten a beer if my body could handle it, they have my favourite beer in the world on tap, but instead that's just another marker that things have changed in ways I don't want.
Morning, last night I dyed my hair, but since we finished so late I hadn't seen it in daylight. I really like it in daylight. Most of the photos taken at the breakwater in Balm Beach, I spend a lot of time down there, it's a short walk, it's very pretty, and one of my favourite places in the area. It was overcast so the light was soft and perfect.
This was written on September 4th, 2022
Dying hair, and some late night dyed hair photos. I really wanted it to look like the bright blue of the first few photos, but the green is great and we have plans to go again soon ❤️ Love my light skulls though, a project I actually finished.
This was written on September 4th, 2022
Bleaching/bleached hair. There are a lot because it was so weird to see myself this way, and I knew it wasn't lasting very long.
This was written on September 4th, 2022
Before bleaching
This was written on September 4th, 2022
Morning. I've always toyed with the idea of dying my hair, but I had figured the point in my life where it made sense had passed. I work in a fairly conservative workplace and it made more sense to let this particular thing go. But with the threat of losing my hair looming? Heck no we're doing this shit.
This was written on September 4th, 2022
Bed time, making the best of it. I really like narwhals a lot. They're just so silly looking, and Nabila the pastel tie dye narhwal is great ❤️
This was written on September 4th, 2022
A month less a day earlier, I learned I had cancer. In two weeks from today, I start chemotherapy. I don't want to rank my bad days, but these two are easily the worst of them. Its only through the power of amazing sushi (and my wonderful partner) that I look so calm here, because there do not exist words for how I felt.
Out goes the 1 Squishmellow per procedure plan, might as well just pile them on (Maggie the manta ray, Nabila the narhwal, Maurice the moose).
I never made it to work that day. So I never got to tell the people I wanted to in person. I'm sorry for that, but I can still barely function when writing this on the 4th.
James: I have to tie my hair back to wear my N95 masks, I don't love how it looks but fashion must be sacraficed for health
I reflected on this on September 1, 2023 This was written on September 4th, 2022
After my shift. I rarely take photos of myself at work. I like my uniform, it's extremely practical. These are some of the only photos that exist of me in it. I had promised myself that I'd take Friday off if it didn't go great, and I guess I was doing the "hope for the best plan for the worst" thing.
This was written on September 4th, 2022
Hours before what I didn't yet realize is my last shift for months. I felt good about it. Tomorrow, I'd get all the information from the oncologist and fill in everyone at work I cared about enough to want to tell. I was right about the shift, it was a great one to go out on, I was wrong about Friday.
Insurance forms are wild. "List the symptoms of your illness that prevent you from working. List which job tasks you can still preform" weren't you listening when I wrote one of the worst four word phrases possible in the English language? And you want to know if I'll still be able to bend conduit while hooked up to an IV.
Fuck these ghouls.
James Petrosky: Those words are "Cancer that has spread", although that phrasing only makes sense on a form. The real life equivalent is "you have cancer, and it has already spread" and I don't wish that statement on anyone, whoever wrote this form should really consider that someone who's going to fill it out did and not be the worst cog in the machine about it.