Thursday, April 27, 2017

My mouth and the real world

So I've been told repeatedly by my oncologist that it would take six weeks for my mouth to recover completely. We're midway through week five. I've got insecurities galore. I still get what I am told is referred pain in my throat and ear, which was a symptom of the cancer, and sometimes I think: if the cancer is all gone - as my oncologist, who apparently has quite a bit of faith in his own judgment, says is likely the case - then why do I still have this symptom? (He explained that it's because all the nerves are connected, and end up going through the same bundle or channel or whatever, so that any damage to the nerve will show up in unexpected areas nearby. Maybe that is the case - my nerves in my tongue were certainly affected by the operation - but surely it also may be the case that I still have pain because I still have cancer! I mean, how would they really KNOW? ...all they've tested since December is chunks they've removed from me, I've had no MRIs, no CT scans, nothing to see if there are other lumps or lesions or things previously undetected; the only thing besides my negative December CT scan that I've got to go on is the eyeballs of my oncologist, who looked in my mouth and throat and said he didn't need to do anything more, because he could see the cancer plain as day - so why did he need a photo of it?). I've also got pain in my jaw, which I have never been able to explain to myself: did they have my mouth yanked way open for the operation, or is that referred pain too?

The real challenge is that I don't know how to think about any of this stuff. Even pain is complex, an unreliable index of what's happening, because I was kept on pain meds more or less from the first moment of the operation, having been giving fetanyl and morphine in hospital, and then being sent home with dilaudid (sorry, you dopefiends, it is all gone). Because of this constant, proactive, don't-let-pain-get-a-foothold approach to pain management - a fine idea, mind you, but it has its downside - I have no idea what my "baseline" for pain should be - what my level of pain is when NOT medicated. And now that I've been downgraded to Tylenol 3's, I don't know which of my worsening discomforts - in my throat, say, which started hurting more on Sunday, with worsening discomfort when I swallow - might be due to my not HAVING as much medication in my system. Maybe the pain I'm feeling is just because I have less powerful meds in me? Maybe it's referred pain, which tends to come and go - or maybe it's because there's STILL SOMETHING THERE. How am I supposed to be able to tell? Even at my calmest, it's all subject to interpretation and guesswork. All I know is - I don't feel so hot.

Better, but not great.

And then there's the BC medical system. While having a two tier system like the Liberals would love to introduce would no doubt be worse - the rich could get treated pronto and the poor would get even LONGER wait times - there are still huge waits built in. My oncologist told me that he'd see me again in July, and that I'd have an MRI done before then, in my throat, to confirm that I'm all clear; that seemed fine - but I figured the MRI would happen sooner, rather than later. Turns out - I found from calls to the hospital on Monday - that the MRI isn't scheduled for two months, at the end of June. What if - as I can easily believe - there has been something growing in my throat since last September, when I first got symptoms? (This all began, recall, as a lump in my lymph node, which I saw doctors about in October, though no cancer was diagnosed until early March, I think it was). What if the pain in the hinge of my jaw is because the cancer spread there from my adjacent tongue? Shouldn't I agitate to get to the MRI sooner, rather than later? But EVERYONE ELSE IN QUEUE BEFORE ME has medical issues too, which may be more SERIOUS than mine. Should I just wait patiently and stoically,, while cancer possibly spreads in my throat and jaw, for my turn, or be a squeaky wheel, and ask if my oncologist can move the appointment ahead? My throat pain was sufficient on Monday that I actually made calls about this, and booked time to see him tomorrow, but now I'm worried that I'm going to annoy him, and spread him thinner than he already is spread thin, over what might just be referred pain. I could be hogging the resources that people sicker than I could use. He has told me that all test results show I am cancer free (so far). Can I afford to trust the system? Should I just suck it up and be patient?

My father was very patient.

Anyhow, I'm back to music and film blogging, as you see. I'm gearing up to start (optimistically) looking for work. I'm actually feeling a bit better than I did yesterday, and yesterday I felt a bit better than I did on Monday. Maybe I should cancel tomorrow's appointment, and spare myself the wrath of a doctor who thinks I'm just being a hypersensitive wimp? (And, I mean, I wouldn't want him to think I was challenging his judgment of things; he's spent all of five minutes examining me, but maybe he's such a whiz that that's enough?),

Dunno. I feel okay - tongue's a bit sore, a bit of discomfort when I swallow, and my speech is still affected, but it's really not bad, especially considering I haven't had any pain meds today at all. And I'm not going to, for awhile yet: I'm going to pop an allergy med, because my eyes are getting itchy - but at least THAT symptom I know has everything to do with the cat.

That's where I am today, re: cancer. Now I'm going to go listen to a Richard Thompson record.


David M. said...

Life is a good activity and a bad waiting room. You can't help but think too much. Distractions are good. See the doctor, complain. You are a fortunate man, my friend.

Allan MacInnis said...

Yeah, a bad waiting room, well said.

My oncologist is an odd duck. The "business" partof my visit was straightforward - he stuck a camera on a tube up my nose into my throat, looked around, and reaffirmed that it looked healthy. Whether I have swollen lymph nodes or not, or tumours elsewhere in my neck, remains to be seen - his "rate my MD" page, amidst many glowing 5/5 ratings, includes a complaint from one guy who says he missed tumours in his neck - but it really didn't seem to concern him, so I shall go back to waiting patiently. I DID manage to give him a copy of Cronenberg's Rabid, which should resonate, since he's got degrees in reconstructive plastic surgery (he hasn't seen any Cronenberg but asked me about my claims to fame as a writer, so talking to Cronenberg seemed an easy one to come up with). But as soon as I said "reconstructive surgery," he eagerly leapt up with his phone to show me surgeries he'd done. "We removed a tumour from this man's jaw - here's the incision where we went in for the dissection, and this is what we cut out... this one is a plastic ear, we had to cut the patient's real ear off - here, see? And here he is with no ear... this is a larynx and esophagus I removed from someone..." The last one, he was holding up, dangling there red and tumourous, making me think of fishermen's photos (and making me wonder about the quality of life of someone with no larynx or esophagus). One pic had a guy who had part of his skull and left eye removed, shown before, during, and after, with a giant tumour on his face that really raised the question of how he'd gone so long without medical treatment; he looked like something out of a horror movie... along the way he skipped past some photos of (presumably) his kids playing with a Millenium Falcon model to get to more gore... I can see where his bedside manner is offputting to some. I honestly can't tell if his showing me these gross photos is just by way of making conversation, if he's got trauma from his job that he wants to communicate, if he's a sadist, or if he's showing off his trophies ("look what I cut out of THIS one!"). Or if it is some sort of strategy to thin out my visits to him - because I'm afraid he'll break out his phone. I wonder if he's got photos of my tongue in there.

Anyhow, I guess i gotta just suck it up, he doesn't think there's anything wrong with me, and my neck/ throat, while feeling weird, isn't THAT far off normal. MRI's in late June, meantime I guess I gotta find a job.

There are some great distractions around, thankfully. Three shows this weekend I want to see. Plus I'm listening to Robyn Hitchcock's Spooked, from 13 years ago, when I was completely ignoring him. It is FANTASTIC, really a great album by him. Also finally doing justice to Richard and Linda Thompson's Shoot Out the Lights, which seemed kinda meh when I last attempted it, but now seems just utterly great. Plus Erika and I watched The Dressmaker last night - which I didn't like very much, compared to, say, Jocelyn Moorehouse's earlier film Proof, which has always been a favourite (early Russell Crowe and Hugo Weaving film), but it's great to see Judy Davis getting a big juicy role in her early 60's. If there was ever an actress whose career shouldn't be diminished by aging it's her (or Helen Mirren, or Susan Sarandon, or Charlotte Rampling, or Jessica Lange, or...).

David M. said...

Good news. Also, Judy Davis, born in 1955.