The first cut is the deepest

[CW: post contains discussion of medical conditions and surgical procedures; nothing too graphic but you know your squeam limits best!]

First the good news: I have a surgery date!

Now the not-so-great news: I’ve been waiting for this date with the scalpel since late 2019.

And the even worse news: if you’re not me, or the one other lucky woman who will be getting surgery on the same day, you’re gonna be waiting. For a very, very, very long time.

How’d we get here? Well, much has been written about how medical care systems* in Canada have tremendous potential … but could still use some work. Add in a global pandemic and some less than prudent policy choices that meant all non-emergency surgeries were put on ice (including my original April date, days after that announcement), and now you’re pretty much caught up.

Except for one thing.

We don’t know for sure that my surgery (hysterectomy) isn’t an emergency. It’s probably not cancer, but they only way to know for sure is to do a biopsy on the (multiple) (large) (more on that in a sec) tumors populating my uterus. And they way you do that is via surgery. Chicken, meet egg.

I’m genuinely not concerned about the potential for cancer. Odds are well in my favour. But there are many patients — many of my surgeon’s patients — who have not been so fortunate. Patients who are, in their words, “now facing decisions around palliative care,” in no small part because of delays in accessing surgical care.

[I’m using gender-neutral pronouns to refer to my surgeon, because they don’t need whatever grief might be caused by my sharing what they shared with me.]

So. There’s that one thing about how we don’t know for sure that it’s cancer, but there’s also the other thing, about how I’ve been waiting for more than a year and a half to get this taken care of. Two years, if you count back to the original situation (massive blood loss) that led to hemoglobin levels so low a walk-in clinic doc threatened to call me an ambulance if I didn’t promise to go to the ER within the hour. And a decade before that, back to when I was first trying to get pregnant with my son, and an OB offhandedly said, “hmm … couple of fibroids … no big deal, most women have them eventually.”

This was also the creep who told me I had a “beautiful cervix,” so, you know, grains of salt. But he wasn’t wrong about stats: three-quarters of women have them by the time they hit menopause. Many times, they’re undetectable. Other times, they cause some really brutal, unpleasant symptoms — not just massive bleeding, but also severe abdominal pain and constipation and/or incontinence (ooh, nice choice, universe).

In my case, it’s led to a belly that measures — according to my medical chart — as 20 weeks’ gestation. Translation: I look like I’m four or five months pregnant. The biggest fibroid now measures something like 8 cm x 10 cm x 20 cm, or about the size of a large butternut squash (my surgeon disagrees: “I’ve never seen a butternut that big; we’re talking small pumpkin, here.”)

After the first drug (Fibristal) didn’t work, I moved on to a second drug (Lupron) in an attempt to shrink the fibroids. It also didn’t work, but not for lack of trying. When I say this drug is “heavy duty,” I’m not kidding: it’s the same drug that’s used to treat prostate cancer and breast cancer, and to halt puberty for transgender kids. It’s stopped me from bleeding out every month, by kicking me into early, full-blown menopause. Which is exactly as much fun as it sounds.

I’ve been really fortunate, in that other than finding sleeping on my stomach a bit uncomfortable, there’s been no pain. When I said that to my surgeon, I was surprised by the response. Not because they agreed with me, but because they pushed back at the premise:

“I don’t want you to think this delay hasn’t come without any costs. There’s the cost to you and your insurance company. Those shots you get every three months to try to keep the fibroid from growing are about $1,500 each. That’s $6,000 a year. Plus the cost of the estrogen add-back to make sure we’re not compromising your bone density.

But it’s not even just about the money. It’s about what this does to your body and, frankly, it’s about what we tolerate doing to women. There is no universe in which we would make men wait this long.

Think about it. Could you imagine anyone ever saying to a man, ‘Okay, so you have this tumor in your abdomen. Maybe cancer; probably not. You’re going to have to wait a few years to find out for sure. In the meantime, to make sure you don’t need blood transfusions every month, we’re going to completely disrupt your natural hormonal production. In other words, we’re going to chemically castrate you. We’ll give you some other drugs so that hopefully the castration doesn’t completely suck. Oh, and you still have that tumor! Which we’ll get to … eventually.’

We would never say that to a man, but it’s the message women hear every day. Every day. And it’s not okay.”

Like I said, I was surprised to hear this. Surprised, but also kind of amazed, because it’s hard to out-feminist me, and this surgeon basically told me I needed to STFU with all my, “Oh, it doesn’t hurt, so that makes it okay,” nonsense. Like, DAMN. Well played, doctor.

It made me think about how lucky I am to have this physician on my side, and how difficult it must be to have so many patients needing surgery, and so few opportunities to help. The surgeon said that there are something like 2000 patients on the waiting list for gynecological surgery at their hospital alone. 2000. Not across all of Ottawa, or all of Eastern Ontario.

And sure, surgeries are starting to ramp up again, but — if I understood my doctor correctly — right now, gynecology is being given one surgical day per month. I asked how many surgeries can be performed in a day; they said two. Now you know why I said me and “one other lucky woman.”

I sure hope there are some missing pieces, here, or that I misapprehended some of what I was told. Maybe there are many other gynecological surgeons, and collectively, they have access to the OR on many other days, and ultimately, many other patient patients will get surgery soon.

I have to hope that, because if only two surgeries per month is what’s actually happening right now, it’s going to take 80+ years to get through the backlog we’ve already built up.

So that’s the good news, and the bad news, and the even worse news.

Progress for me, but at a cost. Pain for far too many, who continue to wait. And in the worst case, palliative care.

I don’t know how this gets fixed. I don’t know what needs to change when it comes to scheduling OR times, or diagnosing risks, or assessing potential outcomes.

I do know that it starts with giving a damn about women, and our bodies. It starts with taking us seriously. It starts with educating ourselves about how our bodies work, and learning how to advocate for ourselves when they don’t.

It starts with not expecting women to carry literal burdens we would never ask a man to bear.

The important thing … is that it starts.

---

* The two biggest myths about Canadian health care: 1) that it’s free (only true if you don’t pay your taxes); 2) that it’s universal (that suggests that all people have access to the care they need, when and where they need it, without incurring financial hardship … a standard we don’t really meet).

That’s not why I asterisked this, though. It’s also important to remember — for international readers — that there is no single, monolithic “Canadian” health care system. As the Lancet article linked above describes it, our system is ” less a true national system than a decentralized collection of provincial and territorial insurance plans covering a narrow basket of services, which are free at the point of care.”

If folks didn’t previously believe there was no “one size fits all” in Canadian healthcare, here’s hoping the pandemic set things straight.