fuck cancer

Fuck em up O!

I'm glad to see you again.

Thanks everyone.

I just want to say that if you ever want to commiserate or have questions about chemo and radiation, obv our cancers and bodies are different, but I'm happy to talk about those things with you in any way I can. My webmail works

TTITT that's much appreciated and I might be in touch in a few weeks when things start moving again.

I'm still reeling from my diagnosis and absorbing too much info with a brain that isn't coping well with too much info.

I've also just stopped taking dexamethazone so I'm expecting my energy and my mood to take a hit in the coming days.

Good luck, man!

all the best, omino

and also one day I will learn how to spell your name correctly

All the best with your recovery and treatment, onimo

good luck, onimo.

love to you & your family onimo <3

Best wishes, onimo - good to hear an update from you. Hope you have a relaxing Christmas; sending much love & strength for what comes after.

I'm ever here, onimo.

Sending my best to you and your family.

All the best, Onimo

I've been noting some of my weird symptoms and side effects since I got sick. I can't sleep so I thought I'd share...

I'm still not sure from all of this which is caused by the cancer, the surgery, the resultant paste swelling/damage to my brain, seizures, or various medications for all of the above. I also don't know what's permanent and what might get better or worse with time.

- writing: I keep picking the wrong words/letters. It's taken ages to type this lot up and I've no confidence in it. Sometimes I stare at my screen for minutes at a time convinced some letters are missing. I can never find the 'R'. I *think* it's getting slightly better with time.

- reading: I can't concentrate on long form text. I feel like I'll never read another book. That breaks my heart. I also have a weird vision issue where my brain doesn't want to read the right-hand side of pages and I have to force my eyes to track across the page. If I'm tired or stressed I just don't bother trying. I am expecting to have this diagnosed as a permanent visual impairment.

- seizures plus visual impairment means I've had to give up driving, probably permanently. This adds to the huge burden my wife is already carrying. Not being able to drive makes me feel older and sicker than the massive scar on my head.

- seizures - these are hard to describe. It's not like debilitating fits, more like lots of short, strange, overwhelming feelings that my brain is working really hard on something that I am only vaguely conscious of. Sometimes I get visual flash things at the same time so I've taken to calling it The Sparkles.

- jaggy left foot - like wearing a sock full of hot pins.

- insomnia

- bumping into walls/misjudging where things are

- broken internal clock. I used to be able to guess the time to within minutes, now I'm hours out

- Not My Foot! This is an odd one... sometimes I'll be showering or sitting on the loo and I'll decide my left leg is not really a part of me but just a big lump of flesh and bone. This feeling passes in minutes but if you'd amputated the leg at the time I wouldn't complain.

- when I wake up in the night I feel as if I'm wearing glasses

- sometimes the world on my right keeps moving when I stop. It's a bit like drunken teenage spins

Also I'm not exactly depressed but everything is mostly bad and it's beginning to take its toll.

onimo I’m sorry to hear all your struggles if it’s any consolation your post is free of aphasias

the brain is a very plastic thing, I hope some of your faculties improve as your noodle rewires itself.

Thanks silby

I was misdiagnosed with transient aphasia from seizures before they found the tumour. My symptoms then were scary but didn't have the big C attached.

oh, onimo. <3

and yes you still write well

Hey onimo, that sounds like a lot to deal with. From my understanding there is a lot of weird shit to be expected while the brain recovers from surgery, even small changes in the shape of the tissue, how fluid circulates, etc., alter the fine details of activity. Disowning a body part is a well described thing which happens to a lot of people - of course that doesn't make it feel less weird. Same for it being an effort to attend to part of the visual world, I could almost guess which parts of the brain got disturbed from your description.
If you're able to tolerate an audiobook, Villanur Ramachandran and Sandra Blakeslee wrote a good one about how our sense of ourselves as physical beings ties in to brain functions, it might be enlightening or reassuring. Audiobooks have it and they claim you can listen for free during a 30 day trial:
https://www.audiobooks.com/audiobook/phantoms-in-the-brain-probing-the-mysteries-of-the-human-mind/242959

Thanks, I've been toying with taking up audiobooks for a few weeks so I might look at a trial. I was thinking about the Oliver Sacks book "The Man Who Mistook His Wife for a Hat" the other day while contemplating my unnecessary leg.

FWIW onimo, based on your posts tonight, i would be extremely hard pressed to guess you were having any cognitive difficulties at all!

xp the Ramachandran/Blakeslee has a similar pitch to Hat (although less humanist it must be said), but deals with pertinent stuff like body image, phantom limbs, etc., throughout.

It's good to see you back here anyway, and yeah with no outward sign (other than, you know, your contribution on this thread) that anything's up.

Sorry to hear you are having a rough time Onimo. My partner has some similar symptoms you described above, caused by brain lesions/myelin damage from the MS and it sure can be rough at times. But like others have said your posting is always spot on. That old audiobookbay dot nl is my fave audiobook resource fwiw

this sounds like a hell of a lot onimo, i'm sorry and it sucks, and i sincerely hope 2021 is a year of recovery, tho it might take a stupid amount of time and emotional fuckery, you can beat this fucker

Wishing you strength and hoping as many of these end up resolving as possible. Also, I bet your writing is better than mine by a long shot.

Onimo, glad to see you here. I just want to chime in that you must be patient with yourself and your precious noggin, and that this patience is one of the great frustrations and gifts that being ill gave to me.

Just saw this thread. Had no idea, Onimo. Best wishes to you and lots of good vibes and prayers for you.

Cheers mate & everyone else for being so nice

Just remembered another weird symptom: bad lip syncing - sometimes people are speaking to me and there's an eye-brain delay which makes everyone look like they're in a badly dubbed film.

Those all sound frightening onimo, rooting for you to recover well

Best wishes in recovery, onimo.

Yes, agree with everything said, hopefully these are all temporary and you are back to normal in the very near future x

onimo, your equanimity in the face of all those symptoms is astounding. I will echo what others have said, that whatever struggles you had in typing out your posts, they are perfectly fluent and coherent. I hope you recover soon and completely!

re the lip sync thing, it’s something our brain has to work on all the time because the senses report info at slightly different times (e.g. vision is a bit late, and it varies between night and day) and it can slip out of sync a bit under normal conditions. So I’d just think of that as a sign your brain is under a heavy workload - which it sure is, given the amount of re-routing that recovery involves.

Onimo and I so struck by your insight into your symptoms and your knack for describing them! "Not My Leg" especially. There is a book in this should you ever want to revisit this experience, I would love to read it!

hey Onimo I’m just a random guy on the Internet but wanted to send you all good wishes for your recovery, and also say thanks for sharing your insights and experiences

a good friend of mine had a tumor removed not long after you did - he’s still a bit confused - reading your posts has really helped get a (broad) sense of the kind of things that might be going on for him

Hullo!

Most of my weird symptoms have gone or improved in the last couple of weeks so most must have been after effects of the surgery. My leg is my leg again!

I had a horrible panic a few days ago when I couldn't read for an hour or so and convinced myself it was permanent.

I started a 10 week drug trial on Friday and started 6 weeks of daily radiotherapy yesterday. I felt rotten yesterday (brutal tiredness and nausea) and I was struggling to face months of feeling that way but today is much better so it's a bit easier if I know it won't all be bad days.

Glad some of the troubling symptoms resolved and you are feeling more up for the fight. Wishing you the best.

That’s great to hear about the symptom resolution onimo, hoping the treatment goes well for you

When I had chemo/radiation as a kid, my favourite thing to eat was tapioca pudding. That or scratch-made custard will see you right, Onimo.

Good to hear good things from you onimo

When I had chemo/radiation as a kid, my favourite thing to eat was tapioca pudding. That or scratch-made custard will see you right, Onimo.

― scampopo (suzy), Tuesday, 12 January 2021 12:27 (twenty-eight minutes ago) bookmarkflaglink

I remember my mum giving me tapioca pudding when I had measles as it helped relieve mouth ulcers so that makes sense for radiation too.

I don’t remember mouth ulcers but I do remember not wanting to eat a lot of different foods because they made me nauseous. I couldn’t bear fat on meat, dark poultry meat, egg yolks, mayo, canned tuna, squash, yams, or Boston baked beans, plus I couldn’t have raw carrots (which I loved) because they gave me doubled-over stomach cramps. I still won’t eat squashes or canned oily fish apart from anchovies.

positive news! great to hear!

Great stuff Onimo!

Most of my weird symptoms have gone or improved in the last couple of weeks so most must have been after effects of the surgery. My leg is my leg again!

Hooray for correctly-owned legs! Thanks for keeping us posted onimo, glad you're recovering well.

welcome back!

Good news. :)

yay for disappearing symptoms

glad to hear it onimo!

Wonderful to hear!

Yep, keep us updated, onimo!