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Dave N. wrote: Wed Jun 15, 2022 9:58 am

seby wrote: Wed Jun 15, 2022 9:07 am I hurt my back because I slept the wrong way. This is what being middles aged means - "I slept the wrong way and now I am injured". FFS

It’s also a tallguy thing, too. We don’t always fare well in the one-size-fits-all world.

TylerDeadPine wrote: Fri Jun 17, 2022 11:12 am

seby wrote: Wed Jun 15, 2022 5:49 pm

TylerDeadPine wrote: Wed Jun 15, 2022 10:32 am

This is exactly what led to me dismissing my spouse' cancer symptoms. Fatigue? Random Pains? That's life in the slow lane baby. Get in, we're going sleeping.

Hello from bed. But seriously - how are they doing? How are you??

Hail bed. Hey thanks for asking - Chris is responding well to the chemo, the tumor disappeared so fast they actually felt it 'move' in their chest. Crazy and gross. But the daunting runway of 4 more months of chemo is heavy - The downsides right now, is they had a pretty hefty reaction to the vincristine and has neuropathy in hands and now feet. Really depressing because we thought there would be much guitar and synth playing in hospital - chris finds it hard to even text. The neuropathy also extends to the GI tract so it's been a super painful and sleepless week, but the GI doc said he can hear movement and he's sure it'll resolve. I guess there's not as many nerves in your bowels so they come back quickly - hands and feet are 6-12 months or never.

I don't exactly know how I'm doing. Chris says I'm doing amazing, but I know it's mostly all insect brain stuff - emotionally I'm a wreck, and I can tell that just from the amount I'm posting, and the therapeutic work I'm doing with the ladies at the donut shop. Our friends are really amazing and I'm struggling to work in how to use their help (managing that can sometimes be harder than just doing a thing) and not overburden myself, or be un-grateful.

Chris' bandmate is getting married today, and their white blood cell counts are up so I'm going to see if the nurses will let me sneak us out for an hour to check in on the periphery. I don't think anyone will mind a bald escaped hospital covict from crashing the taco truck and not staying for dancing

seby wrote: Mon Jun 20, 2022 8:18 am

TylerDeadPine wrote: Fri Jun 17, 2022 11:12 am

seby wrote: Wed Jun 15, 2022 5:49 pm

Hello from bed. But seriously - how are they doing? How are you??

Hail bed. Hey thanks for asking - Chris is responding well to the chemo, the tumor disappeared so fast they actually felt it 'move' in their chest. Crazy and gross. But the daunting runway of 4 more months of chemo is heavy - The downsides right now, is they had a pretty hefty reaction to the vincristine and has neuropathy in hands and now feet. Really depressing because we thought there would be much guitar and synth playing in hospital - chris finds it hard to even text. The neuropathy also extends to the GI tract so it's been a super painful and sleepless week, but the GI doc said he can hear movement and he's sure it'll resolve. I guess there's not as many nerves in your bowels so they come back quickly - hands and feet are 6-12 months or never.

I don't exactly know how I'm doing. Chris says I'm doing amazing, but I know it's mostly all insect brain stuff - emotionally I'm a wreck, and I can tell that just from the amount I'm posting, and the therapeutic work I'm doing with the ladies at the donut shop. Our friends are really amazing and I'm struggling to work in how to use their help (managing that can sometimes be harder than just doing a thing) and not overburden myself, or be un-grateful.

Chris' bandmate is getting married today, and their white blood cell counts are up so I'm going to see if the nurses will let me sneak us out for an hour to check in on the periphery. I don't think anyone will mind a bald escaped hospital covict from crashing the taco truck and not staying for dancing

My god. This is all such a big deal. The biggest deal. It is so horrifically unfair and I think that you are doing a pretty fantastic job in the middle of it all if I may say so. The neuropathy is one of those things that no one speaks about but we should. There is a reason we use terms like “survivor”. I am super super glad that the chemo is nailing the tumour! This is fantastic.

Did Chris make it to the wedding?! I really do hope so.

You are spot on about friends helping. People mean well, they really do! It is just that they honestly do not understand the cognitive load imposed by the question “How can I help?”. Sometimes it can be enough to break a person, like fuck me please do not give me another thing to think about. But they really do t realise this. In the vast majority of contexts it is a perfectly reasonable thing to ask. Your intuitive friends will just leap in and do shit without asking, taking on the burden of working out what that might be themselves.

Doughnuts are fantastic. Just don’t cut a piece out of one and leave the rest of it there or you will start a thing here on the forum : )

Thinking of you both

TylerDeadPine wrote: Mon Jun 20, 2022 2:52 pm

seby wrote: Mon Jun 20, 2022 8:18 am

TylerDeadPine wrote: Fri Jun 17, 2022 11:12 am

Hail bed. Hey thanks for asking - Chris is responding well to the chemo, the tumor disappeared so fast they actually felt it 'move' in their chest. Crazy and gross. But the daunting runway of 4 more months of chemo is heavy - The downsides right now, is they had a pretty hefty reaction to the vincristine and has neuropathy in hands and now feet. Really depressing because we thought there would be much guitar and synth playing in hospital - chris finds it hard to even text. The neuropathy also extends to the GI tract so it's been a super painful and sleepless week, but the GI doc said he can hear movement and he's sure it'll resolve. I guess there's not as many nerves in your bowels so they come back quickly - hands and feet are 6-12 months or never.

I don't exactly know how I'm doing. Chris says I'm doing amazing, but I know it's mostly all insect brain stuff - emotionally I'm a wreck, and I can tell that just from the amount I'm posting, and the therapeutic work I'm doing with the ladies at the donut shop. Our friends are really amazing and I'm struggling to work in how to use their help (managing that can sometimes be harder than just doing a thing) and not overburden myself, or be un-grateful.

Chris' bandmate is getting married today, and their white blood cell counts are up so I'm going to see if the nurses will let me sneak us out for an hour to check in on the periphery. I don't think anyone will mind a bald escaped hospital covict from crashing the taco truck and not staying for dancing

My god. This is all such a big deal. The biggest deal. It is so horrifically unfair and I think that you are doing a pretty fantastic job in the middle of it all if I may say so. The neuropathy is one of those things that no one speaks about but we should. There is a reason we use terms like “survivor”. I am super super glad that the chemo is nailing the tumour! This is fantastic.

Did Chris make it to the wedding?! I really do hope so.

You are spot on about friends helping. People mean well, they really do! It is just that they honestly do not understand the cognitive load imposed by the question “How can I help?”. Sometimes it can be enough to break a person, like fuck me please do not give me another thing to think about. But they really do t realise this. In the vast majority of contexts it is a perfectly reasonable thing to ask. Your intuitive friends will just leap in and do shit without asking, taking on the burden of working out what that might be themselves.

Doughnuts are fantastic. Just don’t cut a piece out of one and leave the rest of it there or you will start a thing here on the forum : )

Thinking of you both

You are a very observant/empathetic or wise person - that's exactly how the cognitive load feels, and how already 'survivorship' feels. I think doctors purposefully back-load the information and for the first couple of weeks obfuscate some of the most heavy side effects so you focus on committing to the treatment - because you should, but I could for sure see some people say 'screw it' and give up.

hahaha I am %100 against leaving a piece of doughnut. They are perfectly designed to be consumed as a serving.

We didn't make it to the wedding But our friend brought us around to facetime everyone

Thanks for caring, this is really nice of you!

rsmurphy wrote: Tue Jun 21, 2022 2:25 pm At the doc for mild arthritis (doesn't feel so mild) in my big toe. The other day I also noticed swelling in both ankles. Not sexy. A big shoe and compression socks are in my future, gentlemen. Line forms to the left. No cuts.

EDIT: dang, the inside of my dogs are all fucked-up. Severe arthritis in both feet AND bone spurs. Not how I envisioned my life up to this point. Cortisone for now, surgery down the road. Feeling better already.