Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

The past few days haven’t been great health-wise. I’ve been feeling really flu-like and have been spending a lot of time on the couch. It seems like, each time following treatment for my neck cancer, my muscles get really weaker, the tremors get worse, I get random startling muscle/body jerks, my joints feel really achy, I can’t think, headaches get worse and more consistent, I’m usually nauseous, my skin gets more sensitive, I’m more dizzy, get long periods of relentless neck spasms, etc. I often forget what I’m saying a few words into a sentence, but now I stop talking after one word, often unable to remember what I’m going to say at all. The tremors at the point where typing is much more difficult, and I can’t seem to put my cat’s food into a bowl without twitching and spilling it. Now that I think of it, the tremors aren’t as bad right now–just worse than they normally are. I’m constantly finding myself blankly–seemingly without a thing on my mind–staring at the screen for a long time before writing anything. I guess this is something that happens normally, but I definitely don’t think it’s usually this bad.

I would love to say what caused this post treatment episode, though I don’t think I can pin it down. It did seem to begin a day after my partner stayed over for two days. During those two days, we stayed up until 4 or 5AM and went on several walks. The thing is… I don’t crash like this every time I walk and/or stay up late. It isn’t consistent, no matter how much I wish it was. The causes of these episodes are probably a complicated mix of things that will take lots of time and energy to figure out–if I do ever figure them out. At this rate, it doesn’t feel like I will. Of course, this could explain why my depression might be getting worse with the intensity of my treatments over time, though it also seems to correlate with my brain feeling blank and sluggish. Plus I spend a lot of time on the couch.

That reminds me… The recent episodes of “neck spasms” (or whatever you call involuntary muscle clenching) are a main reason I’ve been lying down so much. It gets to the point where my neck is clenched for so long that I have a very hard time holding it up. So I end up having to lie down, but doing so doesn’t seem to help with the pain too much. My neck is still tightening to some extent, leaving me feeling like I’m constantly holding my head up, even when something else is supposed to be holding it up. I’ve tried a soft neck collar in order to try sitting up for longer. Can’t say that was too helpful either. I might try to find one that provides more support for the back of my neck because it seems like that’s what my current neck collar was missing. It’s to the point where I’m considering trying my hard neck brace again, even though it might’ve triggered a bad vertigo episode.

Oh, and when I get the flu-like symptoms, my acne and other skin issues seem to get worse. Coincidence?

On the bright side, I was able to get in a decent amount of food (kind of) despite being nauseous most of the day. I still needed to take two Zofran to get to that point, though. But hey, I’m grateful that I have it! When I was sitting up, I spent time playing Rust (a multiplayer survival game) with my partner. He was even able to convince me to play with some “friends” (in quotations because I’m not sure what they think of me), even though I protested the idea quite a bit. It was a bit stressful because the OCD-like symptoms started acting up, and I felt overwhelmed about not being able to do things like I used to. I also felt regretful after every time I talked, though my mind has a habit of forgetting many of the things I’m regretful of, so I’m not too upset about it now. I honestly can’t remember what happened or what I’ve done for most of the day. Definitely better than being overwhelmed, though, so I’m at least a little grateful for that and still hopeful I can beat this cancer!