what’s the hardest part of being a patient? is it the lack of control, the uncertainty, the unknown, the fear of death? could be. but i have a hunch it is something different.
a colleague of mine forwarded me an email, from her uncle, who is suffering from a rare form of skin cancer. he is managing his cancer with immunotherapy. she had reached out to him as a favor to me, in case he had any advice or recent research that might help me. at this point, i’ll take anything i can get. he told me about a promising new drug that is being trialled for melanoma, and he offered some advice on navigating this new life as a patient.
i’m not a patient in canada yet. i’ve returned to canada from thailand, I’ve been home for a few days, and i haven’t even seen a doctor yet. it is very possible after my appointment with the surgical oncologist on thursday that my surgery won’t be scheduled for weeks, or even months. this is a surgery that i could have had scheduled in thailand in 24 hours.
when diagnosed with cancer, most canadians would not have any choices. they would go to their doctor, enter our medical system, have their appointments when they were scheduled, wait for testing and follow up appointments and have all their care paid for with their tax payer dollars. i am proud to be from a country that has fair and equitable health care.
given my status as a canadian living abroad – i had a choice. thailand has private health care, and the insurance through my employer covers it. the hospitals are private, care is of high quality and it is lightning fast. however, their experience with melanoma was minimal — it is an extremely rare form of cancer in thailand (interestingly, thai people rarely expose their skin to the sun).
so, I had to choose between fast, immediate care in thailand (without specialized melanoma knowledge); or high quality, specialized care in canada (with wait times). having a sense of agency in the situation was incredibly confronting. what if i made the wrong choice? how would i know? fortunately, i had friends in the medical professional who were advising me – so i did not have to make the decision alone. i decided that I needed to be close to my family, and that i wanted the most specialized care available to me. according to the research, the longer wait times do not impact outcomes.
so here i am, in canada, and i’ve made my choice. i’m grateful to have an appointment and to be entering the system, but i’m terrified of all the waiting that i will have. i can picture the cancer multiplying, taking over my body. in a situation where all i want to do is something; sitting and waiting feels like doing nothing at all.
in that email forwarded to me by my colleague? the hardest part of being a patient, he said? it’s being patient.
*photo taken in el chalten, argentina, january 2018.
