Here on my own again

[gwyn]

Friday marked my first full week of radiation treatment; I had a couple the week before, so now I'm up to seven and tomorrow will start the second full week. It was kind of funny--they said when they made the alien sex tech mask that it would be 5-10 days before they called to set up my first treatment, but they called me like two days after and so I was unprepared, since I'd thought I was getting a week reprieve at least. But after a little negotiating, they had me come in for two, and it was very interesting. It took me a while to adjust to getting the mask put on, but after a few appointments, it feels more natural and less panicky. Everyone is so incredibly nice and supportive there.

They said the fatigue will probably start happening after this week. But I'm mostly starting to think that I've been heckin' bamboozled by the doctors' assertions that I would have less pain; I have a new really bad pain in other parts of my neck and shoulders on top of the excruciating pain I already have and it's not going away. One day each week is "doctor day," when the radiation oncologist and nurse meet with me to talk about how I'm feeling, and I told them about it Wednesday and he really seemed to feel strongly it would be better by Friday. I was supposed to call them by afternoon if it didn't; however, I was waiting to see how I felt a few hours after my session and then fell asleep, so I missed the window and this weekend has just been really rough.

I don't even know if there are options between stuff that's stronger than Advil that actually works (a lot doesn't) and the really hardcore stuff that will knock me out. But hopefully at some point I can connect with the palliative care people. I did get a call from the social work person at the hospital, and it was okay but I don't know that it was super helpful for my situation, and the rehabilitative cancer medicine people called for an appointment so this week I can talk to someone about modified PT for my situation. I miss PT so much.

My physical therapist called me to check in and that call made me cry; she is just so astonished at what happened and very emotional about it. I guess everyone at the PT place asks about me all the time; no one has ever had a situation develop the way mine did. wickedwords recommended a place to see about finding a therapist and so I will be trying that out. I confess I don't really know what people are supposed to get out of therapy, but this was a super weepy week and I think I ought to try something. I never felt like my experiences with it before were terrifically useful, but radiation this week really made me realize that this is it, this is really happening, and oh boy, we're really in it now.

Before, it was a whirlwind of tests and visits and research; now it's actualfax dealing with the disease. Hopefully, something will change here soon and I can finally have something else to post about.

And thank you again to everyone who kicked in to the go fund me--I am still so blown away by your generosity and thoughtfulness. You guys are the best.

Comments

[devilc]

Sending you the good {{{vibes}}}

[mecurtin]

I'm glad the money helps, I just wish we could do *more*. Have someone there to hold your hand every time you go to another damn appointment, for instance.

[gwyn]

Honestly, you guys have been so amazing, and I can't even convey how much it all means to me.

[dine]

glad to hear that radiation hasn't been too bad (so far), and hoping it doesn't get too much worse as time goes on. sure sorry about the increased pain. sending you all the <3 and *hugs* possible, since I can't be there in person

[muccamukk]

*all the hugs* That sounds really rough. I hope you can get your pain levels sorted out really soon!

I found that coping strategies was a big one to come out of therapy, so I hope you're able to find someone you click with 💗💖💕

[gwyn]

Yeah, I have an appointment on Wednesday, so I might mention things like coping strategies to him and see what happens! Thank you!

[goss]

Sending love and good thoughts your way. *hugs*

[ratcreature]

I hope you manage to find more RL support to cope with this tough situation, whether via therapy or something else, and that the pain improves soon.

[gwyn]

Thank you--yeah, that's what's been on my mind, for sure. <3<3<3

[marthawells]

*hugs*

[kirbyfest]

Continuing to hold you in my thoughts.

(Autofill suggested "hold you in my arms." Settle down, autofill. Settle down.)

[gwyn]

Ha ha ha, that is great. Thanks for the laugh!

[mackiemesser]

At least your doctors seem to pay attention to what you're telling them, even if the situations is lousy. I really hope you get through this quickly and it isn't too stressful/traumatizing.

[harpers_child]

I hope you get some assistance with your pain soon.

re:therapy- when I was attending regularly it was mostly helpful to have an outside perspective to go "yeah, that situation genuinely sucked and your emotional response to it was 100 percent reasonable" and talk through things without having been involved with the situation.

[gwyn]

Oh thank you, that's good to know. I have an appointment on Wednesday, so I will see what happens with the vibe and stuff.

[renenet]

*gentle hugs*