Cancer 11

24 Sep 2024

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What happened there, I didn’t write for three months! Two words: “complications”, and “recovery”.

In a terrifying medical specialty like cancer treatment, one of the painful ironies is that patients spend a lot of time suffering from complications and side effects of the treatments, rather than the cancer. In my case and many others, the existence of the cancer isn’t even noticable without fancy diagnostic machines. The treatments on the other hand… those are very noticable!

A lot of this comes with the territory of major surgery and dangerous chemicals. My surgery included specific possible complications including, but not limited to: incontinence, sexual disfunction, urinary disfunction, and sepsis.

Fortunately, I avoided all the complications specific to my surgery.

What I did not avoid was a surprisingly common complication of spending some time in a hospital while taking broad spectrum antibiotics–I contracted the “superbug” clostridioides difficile, aka c.diff.

Let me tell you, finding you have a “superbug” is a real bummer, and c.diff lives up to its reputation. Like cancer, it is hard to kill, it does quite a bit of damage while it’s in you, and the things that kill it also do a lot of damage to your body.

Killing my c.diff required a couple of courses of specialized antibiotics (vancomycin), that in addition to killing the c.diff also killed all the other beneficial bacteria in my lower intestine.

So, two months after surgery, I was recovering from:

• having my lower intestine handled and sliced in a major surgery
• having that same intestine populated with c.diff and covered in c.diff toxins
• having the microbiotic population living in my intestine nuked with a modern antibiotic developed to kill resistant superbugs

Not surprisingly, having all those things at once makes for a much longer recovery, and a pretty up-and-down one. My slowly recovering microbiota is in constant flux, which results in some really surprising symptoms.

• highly variable stomach discomfort (ok)
• highly variable appetite (makes sense)
• random days of fatigue (really?)
• random days of anxiety (what?!?)

I had not really understood the implications of gut/brain connection, until this journey showed me just how tightly bound my mental state was to the current condition of my guts. The anxiety I have experienced as a result of my c.diff exposure has been worse, amazingly, than what I felt after my initial cancer diagnosis. One was in my head, but the other was in my gut.

I have also developed a much more acute sympathy for people suffering from long Covid and other chronic diseases. The actual symptoms are bad enough, but the psychological effect of the symptom variability is really hard to deal with. Bad days follow good days, with no warning. I have mostly stopped voicing any optimism about my condition, because who knows what tomorrow will bring.

When people ask me how I’m doing, I shrug.

One thing I have got going for me, that chronic disease sufferers do not, is a sense that I am in fact improving. I started journaling my symptoms early in the recovery process, and I can look back and see definitively that while things are unpredictable day to day, or even week to week, the long term trajectory is one of improvement.

Without that, I think I’d go loopy.

Anyways, I am now rougly three months out from my last course of antibiotics, and I expect it will be at least another three months before I’m firing on all cylinders again, thanks mostly to the surgical complication of acquiring c.diff. If I was just recovering from the surgery, I imagine I would be much closer to full recovery.