Today, I know I'm dying.

I have good days and bad days, but usually it's parts of days. I did get a shower taken, which requires a lot of prep and then changing of the trach's collar afterwards. This is a 2-person job. The whole thing wiped me out to the point where I could do nothing else. I've felt pain, then taken the meds and felt like my head was swollen and I couldn't keep my eyes open.

Palliative care my ass. I'm always in pain, meds or no meds. If I don't have a headache, my left elbow hurts. Or my G-tube stoma burns. Or I get that spike-in-the-ear sensation that means my meds have worn off. I have not had more than 20 good minutes all day. This isn't living, this is existing.

I'm trying to fight, but I'm overwhelmed. With my physical discomfort, with all the paperwork I have to do to keep insurance and social security. With the few things I hoped I'd be able to do before I'm out of time. With feeling helpless and feeble. With pain and discomfort. With cleaning the inner cannula and coughing up gunk.

Here's the process of going to bed. I do the usual, brush my teeth, wash my face. I've taken the meds, which are supposed to give me 4 hours of relief. I put on my jammies, and lie down on the wedge I have to sleep on now because I can't lay flat. My neck is so stiffened by the cancer I can barely more it enough to nod or shake. I take off my glasses and hearing aide, turn out the light, get myself tucked in and put on the carpal tunnel braces I've slept in for years. Slowly I relax. Then I start coughing. Doesn't matter if I've just cleaned the cannula, doesn't matter if I haven't coughed for hours. The change in position causes gravity to pull down mucus that wasn't in the way before. So I sit up, turn on the light, put on my glasses, take off the wrist braces, and go into the bathroom for another round of washing out the cannula and coughing. Sometimes I cough so hard I poop, so then I have to go to the toilet and clean that up. Maybe spend a half an hour doing all this. Back into bed repeating the process, and I try again. Takes maybe four tries before I finally can breathe easy and relax. By then it's midnight.

I sleep for 2 hours, then wake up either from pain or coughing. I go take pain meds, clean the cannula again, and get back into bed. This repeats again  3 or 4 times during the night. Sometimes I even get 3 hours at a time.

At the 8 a.m. wake-up, I have breakfast. I'm up for an hour maybe, and can't keep my eyes open, so i go back to bed. This is the time I often get 3 consecutive hours. But I don't feel rested. How could anyone after all that?

The doctors say I probably have months to live. When I feel good, I hope they're wrong. Today I honestly wonder if it'll really be that long.