Rats and mazes

It is no small feat learning to be a patient. Despite being a cancer patient seven years ago, there is much I don’t know about navigating the health-care system. And being a recurrent cancer patient is far different from being a first-time cancer patient. Finding the people to guide you through the process of diagnosis and treatment is like playing Blind Man’s Bluff. From the moment my oncologist called to move my follow-up ahead by two weeks, I was sent spinning and blind to find the people who will help make sense of everything happening.

When I was diagnosed in Montreal I was set up with a social worker in the oncology department, but not until after my surgery. That meant I was relatively alone for two months, with the exception of visits with specialists who (in my eyes) only made my wait time longer. Seven years later in Toronto, it is much the same. I was told I had a cancer recurrence (in a roundabout, not terribly explicit manner that never actually involved my oncologist saying “The cancer has returned”, which left me a bit confused) and then sent off to wait for further appointments and then further further appointments. And at no point has anyone suggested any intermediary care or support services.

This is not an attack on my hospital. PMH is best hospital in Canada for ovarian cancer. This speaks to a larger problem for oncology patients, one that exists in facilities across the country. We face long wait times, confusing information, and pervasive low-level dread that leaves us punchy, short-tempered, and irritable. On a good day. But it shouldn’t be like this. There are resources available. Most bigger hospitals have a psycho-oncology department where social workers will explain what is happening, set you up with a patient navigator, teach you about of support services, and refer you to a psychiatrist trained to work with stabby cancer patients. And yet no one has referred me to a hospital social worker. I know one is available to me, but I don’t even know how to find out who I should speak to, let alone who I should speak to. Fortunately, I know a social worker is available to me and I’ve been reading about patient navigators and I happen to know a nurse who lectures at U of T who has graciously contacted several colleagues to help me locate the resources I need. But not everyone can do this which means there are a lot of scared, angry, and depressed people who are feeling abandoned and neglected by their medical team.

I keep hearing from people, “You have to be your own advocate” and I agree with that sentiment. But it shouldn’t be so goddamned hard. Isn’t enough that I have to deal with the reality of the cancer without having to do all the work myself? How hard would it be for the oncology department to set up an intake appointment with a social worker for all newly diagnosed or recurrent patients? Informed patients are less frightened, better able to communicate with their oncologists, and probably a hell of a lot happier. It would serve everyone to streamline this system.

Cancer frustrates. It takes up time and energy I would rather spend drinking and dancing and gardening and writing articles about lipstick. On the plus side, yesterday I managed to drink, dance, garden, and wear lipstick, so it’s not all bad.

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About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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