Maybe cancer crawl: 28 Sep 2024

Big news. I’m writing this from my dining room table at home. It’s nice. The only beeping I’ll hear today is from appliances if I use them, or perhaps a synthesizer if I get frisky (maybe in a few days). I am definitely exhausted from 5 days in hospital but I can just chill here and I have friends who have offered to help me in various ways.

There was not much new information yesterday. I spoke with my oncologist in Montreal, who has been great. As you might expect the Quebec and Mass General Brigham medical systems are not totally compatible (more on that below) so we can’t look at Monday’s CT scan side-by-side with the CT scan from August right before I left. The written reports look very similar but there is a discrepancy in language that could indicate something important, or it could indicate two sets of people looking at nearly identical images and using different words to say the same thing. #communicationstudies. New information will be coming though.

Monday morning I have a biopsy to remove some fluid from my lungs for diagnostic purposes. I am secretly-yet-not-secretly hoping that it might also feel good if they remove enough liquid/there is enough liquid to remove. I have no idea if I am phlegm producing machine or it’s all just in there.

Thursday I see a pulmonologist. Friday I see an osteopath who can also be my primary care doctor (apparently the only one in the area, very cool). The following Friday I should have an appointment with a world-famous oncologist with expertise in my kind of cancer. I totally trust my Montreal doctor, but I’m here and he’s not. And he is fine with coordinating care for my time here.

Some more scattered observations on for-profit healthcare vs Quebec system:

A)

Privacy and access to information. US systems now have this whole “patient portal” which is amazing. All of your test results and info from visits, etc., in one place and everything can be downloaded as a PDF. This is so convenient–I could email my home oncologist my CT scan report, and could also send him blood tests or anything else he wants. However, in a year or two I TOTALLY expect to get an email from a random law firm saying something like

“We are writing on behalf of Mass General Brigham. We are very sorry to inform you that there has been a data breach and all of you data have been stolen. He is a free 1-year subscription to some suboptimal credit reporting service to check your credit. Sorry for sharing all those questions about your sexual identity, religious beliefs, and ethnicity on the dark web. Please accept our sincere apologies. This was unavoidable.”

My evidence for this hypothesis: Eisai Care (I am not making that name up), the for-profit company that oversees the distribution of my cancer meds in Canada, sent me a letter more or less like that (minus some details) earlier this summer. I now have a free 1-year subscription to a credit-reporting agency, and info about my cancer diagnosis and treatment are floating around on the dark web.

Meanwhile, Jewish General in Montreal lets you walk into a room and request any kind of documentation you want–in person. If you want to do it remotely, you have to do it by old-fashioned postal mail, provide lots of documentation that it’s you, and be very specific in your request. Quebec privacy law (and practice) is fantastic this way. But obviously it would be nice to get an exception for treatment crises like this one. OTOH: I love that I can neither confirm nor deny to parents whether their kid is enrolled in my undergrad lecture course.

IMPORTANT EDIT: I was wrong about something important. I knew that unlike in the US, all Quebec doctors have access to all my information, whereas US doctors may work in different proprietary systems. But I thought I did not have access. My friend Francine corrected me: there is a patient portal in Quebec, it’s just not as fast as in the US. (Up to 30 days for reports to appear for patients.) Like in the US, you still can’t get the actual images so that’s still an issue for my case specifically. I CAN’T BELIEVE I DIDN’T KNOW I HAD A PATIENT PORTAL IN QUEBEC UNTIL NOW!

B)

Professional structures and power. The power structures are totally different here and in Quebec. Last night I got home from the hospital around 6:30pm. They sent my prescriptions to the Walgreens around the corner. There was an error. This makes sense because I was being followed by a lot of people at the hospital, and a resident who was not the primary person following me wrote up the order. I was supposed to get Albuterol, plus a cocktail including Albuterol that could be nebulized through a…nebulizer. The prescriptions that came through did not include an inhaler or a nebulizer, so I was being given medicines that I could not actually take. Also one of my meds was not covered by my health plan.

In Quebec, I don’t think doctors could simply prescribe medicines not covered by the health plan, but pharmacists would have the authority to give me a nebulizer even though it’s not prescribed. Here, it’s actually illegal for the pharmacist to do that (I think in general pharmacy may be a better job in Montreal than here, but IDK). However, the pharmacist got ahold of the prescribing doctor at 8:30pm on a Friday night and got the nebulizer prescription. I also got ahold of someone on the floor where I’d been admitted and they also paged a doctor. Neither of those things would be likely to have happened in Montreal. No inhaler for now but I should be ok. So in short, this kind of routine mistake can be fixed in both places but the process through which that might happen reveals a lot about power and resources.

C)

Labour and infrastructure: Of course the US hospital was more beautiful, though I also think my Sherpa’s advice to go to the suburbs made a difference here. I got admitted to the ER fast. I somehow got a private room, but most people don’t, whereas I was able to simply get a private room covered in Montreal when I was hospitalized in 2010. On my admitting floor, nurses appeared to have a caseload of about 4-5 patients per nurse, which I suspect is much lower than something like the Glen or the Jewish. Quality of care was great, but also similar. I’ve had exactly one bad nurse in my life (Nurse Mike, covered in Diminished Faculties) and all of the staff have been kind and careful here and at home. Food was ok, probably better than Montreal but one doesn’t get hospitalized for the cuisine. Vegan options limited but that’s expected. I did have a person on the food order line at Wellesley Newton get surprisingly cranky with me when I asked for a ripe banana with my meal. But the response to the request was so disproportionate it was easy for me to say “that’s obviously not about me.”

The banana I got for that meal was pretty green but it was good the next day.