gwyn | I WANT SOMETHING'S FLESH!!

Soft foods suck. I never want to eat yogurt or anything like it again. I want potato chips and Cheez-Its and a big steak.

Ranting brought to you by the fact that I have dysphagia and can barely swallow stuff, including meds. I do not like it. Weirdly, my skin is barely red and I don't think I have much of the fatigue everyone said I'd get, but instead I have the sore throat and trouble swallowing big time, plus I'm having some kind of terrible new pain in my upper back that I don't know what it is or how to get rid of it, nothing's working.

Though last Friday literally all I could think of was Richard E. Grant as Withnail from Withnail & I, bellowing my subject line after they've been starving for a while: "I want something's flesh!" It was going through my head so much that I stopped and got a rotisserie chicken on the way home and while it was hard to figure out how to swallow without too much pain and it took me over an hour to eat what would normally take ten minutes, it was the best goddamn chicken I've ever had.

BUT! My last day of radiation is Wednesday, and they seem to be sticking to the plan of 20 instead of more. At least, no one has said I'm coming in for more. So hopefully, fingers crossed, the throat troubles will cease and this will get better and I won't be one of the people who gets permanent damage.

So the past few weeks have been both busy and not, in a weird sort of way.

* Got an immersion blender, and

killabeez gave me a great idea for a non-fruit or veg idea for a smoothie, which is perfect because the acids in fruits were really hurting my throat and I despise any vegetable based drinks. I'm enjoying it and want to try making some other things I can whizz up with the stick blender.

* Got a mattress topper that's very thick (too thick maybe, because in winter my flannel sheets will not fit over it) for my creaky marrow-poisoned bones and it felt nice except that this pain in my shoulders started. I experimented to see if it was the topper somehow, but it doesn't seem related.

* Met with a doctor who specializes in cancer rehabilitative medicine and she wants to hold off on the physical therapy till after radiation is over, but she also talked about increasing my gabapentin dosage and using it during the day so she put me on a titration schedule and I'm keeping a log for her. She was super nice and really wanted to get me to a place where I'm not in pain--she said no one should have to live in 8-9 on the pain scale if there's some way to help it. I don't know that it is, but I have noticed my neck is a little better and I don't know if that's radiation or meds or what, but I'm glad at least one small part is better.

* Had a first appointment with a therapist over zoom. He seems nice and apparently he specializes in chronic illness and a few other things like ADHD and such, so we'll see how that goes. I didn't get too weepy except when I talked about sis_r; I can't seem to talk about her lately without crying intensely. I know part of it is that this time of year is always bad for me, because it's when she died and we were getting rid of her house and trying to rehome her cats. I still don't know what therapy might do, but he said if it is even just paying someone to vent to them, there's nothing wrong with that, especially when you have an incurable illness.

* Saw in the notes of my meeting with the rehabilitation doctor that I am "delightful" which made me laugh a lot. I keep getting described in the summaries as asking exceptionally acute questions and being very aware and intelligent and insightful and stuff, so it's very funny to me because in my whole life, I don't know that anyone has ever thought I was delightful.

* Got to work on a cool project with a really neat person that's for something really different from the kind of work I usually get. I don't know, it felt restorative. It was nice to feel like I was helping someone.

* Most of all, I have had the chance to use the ride money so many of you kindly donated, and it's been such a lifesaver. I wanted to drive myself as much as possible, and save some of the money for later when I'm doing infusions and physically taxing treatments, but there have been a lot of days where I just wasn't feeling very good and didn't trust myself to make that very hairy drive. THANK YOU ALL again so much.

I'm looking forward to hearing what they say about the radiation and whether they felt like it was successful. The bummer is that my doctor day this week is Thursday so I won't get to see Dr. Mehta, the radiation oncologist, and I really do want to see what he would say. He fistpumped when I told him I was able to turn my neck to the right when I was driving and not have sharp pain, and I think he'd be pleased to know that if it wasn't for this weird shoulder thing, I've been feeling pretty decent.

Then I guess I'll be starting infusions of the terrifying bone drug to build back some of the lost bone in my C6. Some of the potential side effects are alarmingly frightening, so I don't know how I feel about this part.

At some point here too, I want to get back to fannish stuff. I've been couch potatoing so much that I'm watching a fair bit of TV. Well, a LOT of TV. I should talk about it.

Flat | Top-Level Comments Only

From:

musesfool

<333

So good to hear from you.

dine

I'm glad to hear an update, and that you're managing - I know there's so much that isn't grand, but I'm hopeful it'll continue to improve, and your throat will allow you to eat something's flesh soonest. I'm thinking of you, and and sending all sorts of wishes that your pains will be reduced

minim_calibre

You are absolutely delightful!

ratcreature

It's good to hear from you. I hope that the pain truly improves soon, rather than get shuffled around. And that all the treatments work as intended with no disturbing side effects.

kore

Aww, we all think you're delightful! And hurrah for you sounding SO MUCH better.

princessofgeeks

Thank you so much for the update.

marthawells

Glad to hear this update!

mecurtin

save some of the money for later when I'm doing infusions and physically taxing treatments
NOPE nope nope. Use it *whenever* it will help, if/when you run out we'll do another whip around. Do not be hard on yourself! We think you're delightful, and we have your back! except for the parts medical personnel are taking care of. I'm really glad to hear how well they're treating you.

devilc

Considering many of the patients they see, having somebody of your exceptional intelligence, insight, and wit must be quite refreshing and delightful.

Is there a link for the ride fund so we can top it up?

maygraderhema

Well, I think you are delightful, so yay for astute doctors!

I'm really sorry you are still having to deal with so much pain. Hopefully they'll find something that will ease that for you. I'm also glad it seems like they are paying attention to your concerns. And while I know you still have a long row to hoe, you do seem (as much as you can via text) less fraught. I agree with your therapist - sometimes you just need someone to yell at who isn't going to take it personally and can just listen.

{{Gwyn}} and good thoughts and prayers for continued improvement and little things that bring you joy.