Ouch

So, my update is pretty much the same as last time — symptoms continuing to get worse, as expected.

This is a bit of a downer post, so sorry about that, y’all. But it’s real. The doctors regret putting me through this, but the only way to the other side is through. (The post does end with a positive note.)

If you’re up for continuing to read, here goes…

Food

As predicted, getting enough calories & protein into me is a challenge. They weigh me every Thursday, and I lost a few pounds this past week. I’d have been surprised if that wasn’t the case, to be honest, because it’s become quite painful to eat due to the mouth sores.

To have a meal, I generally first swish with a numbing solution, then eat quickly before the solution wears off. I have 3 different solutions: UlcerEase, Lidocane, or “magic mouthwash” (a Lido/antacid/diphen compound). The solution works a little, but not entirely, and it means I can’t taste the food. After the meal, my mouth often hurts a lot because the sores have been aggravated by eating. Oy, my poor mouth.

The doctors (and speech & swallowing therapists) encouraged me to keep eating as close to a regular diet as long as possible, so my chewing & swallowing muscles don’t atrophy, but they also know that as treatment progresses, that’s just not possible. Apparently, continuing to eat by mouth (though painful) leads to better outcomes than those who go on a feeding tube, because patients don’t need to re-learn how to eat and swallow. A feeding tube is an option if needed, and while I would rather not have one, I have heard from other patients that it can be such a relief to get one, if needed.

Thursday evening, I told C I might be at the point of needing to stop eating anything that requires chewing at all, even soft things. But also, liquids are quite painful based on where the sores are (we got silicone straws, hoping a straw might bypass the sore spots, but they didn’t work). Yogurt consistency seems most doable right now, so we’ll have to do some experimenting to thicken up the liquid recipes we have. That might be our next project.

Talking

Talking irritates my mouth sores. I’m somewhat hard to understand.

This is a bummer because it makes connecting with friends more challenging. But I’m trying to stay connected anyway!

Sometimes I forget that I’m hard to understand. Then I need to converse with someone random in public, someone who doesn’t expect a speech impediment, and I watch as they realize I’m different. Folks with hidden disabilities deal with this all the time, of course, but I’m experiencing it in new ways, with my speech as it is.

Pain

This is the first time I’ve taken a serious regimen of pain medicine for an extended period. So in that sense, I’m fortunate as a human being. It also means I’m navigating new decisions. It’s different trying to get through each day when severe pain is a factor.

I’m currently on Tylenol + Gabapentin. After a couple days on gaba, the Symptom Management doctor quickly doubled my dose of both gaba and Tylenol. I’m now trying out this new level. I also have a cannabis tincture (4:1 CBD:TCH) that I’ll experiment with more after I get a sense of how the gaba + Tylenol combo is working.

It’s new territory for me, navigating pain like this. Keeping the pain at bay isn’t just about my comfort, I think it could impact my nervous system for the long-term if it were overloaded with constant pain for several months. And in the short term, I need to be able to eat despite the mouth sores, to keep up my weight and nutrition.

I think of myself as someone who can usually tolerate pain, and in my regular life I lean towards treating the cause of pain, and tolerating symptoms. I also manage pain by counselling about it, using an approach I learned when I was active in a peer counselling community. (Prior to my surgery, I set up listening sessions with a circle of friends, and taught them some peer counselling principles so they could support me during my post-surgery healing period. They’ve continued to support me through this even longer radiation phase, and I’m incredibly grateful.)

But radiation on the oral cavity has taken pain to a new level. It doesn’t seem good for me to tough it out, for the reasons noted above, so I’m taking what feel like significant pain meds, and will consider something even stronger if needed — oxycodone, which I am very reluctant about. We’ll see.

It feels weird to know my body has pain — or would have pain without the meds — and I’m not feeling it. I’m still not entirely comfortable with that arrangement, but here we are. I have to be able to eat.

Radiation Clinic Staff are Amazing

Walking into the clinic, every day M-F, I’m greeted by very warm & friendly front staff, who always seem happy to see me. (During the radiation prep appointment, a photo was taken of me, which probably helps everyone be so welcoming. Great idea!)

But really, everyone in this clinic does an incredible job being friendly. I was standing in the hall at one point waiting for a nurse to get something and every single person who saw me smiled and asked if they could help. Their approach stands out. It’s really clear, as a patient, that they’re not just doing medical tasks, they’re tending to each patient as a whole person.

There’s a group of 4 staff who regularly work on my machine, and I see them each day. They always greet me with smiles and seem to know exactly what to say. I suspect (hope?) they do this for everyone, adjusting their approach based on what the person brings into the room. Whether I’m upbeat or feeling the pain, they’re still kind and warm.