My oncologist’s secretary just called me to tell me that the Montreal study is closed.
I’m flabbergasted and enraged. Enragergasted. Flabberaged.
First of all, it took them a week to find that out?? When did this trial close? Please don’t tell me it closed within the last few weeks. Please don’t tell me that someone with medical experience could have tracked it down in time and started the application process for me in the past few weeks while I was flailing around desperately trying to navigate clinical trial research on my own.
On the phone with my oncologist’s secretary I skipped over all that and jumped right to the point: “What do we do now?” My question was answered not with a list of options or an outline of an action plan, but with another question. The ball was thrown right back at me: “Have you tried looking at any trials in the States?”
Yes of course we have, and what’s more, they already know this because I provided them with a document outlining the shortlisted clinical trials that we found. I can accept that they are so overrun that they don’t know my case by heart. What scares me is that they haven’t even checked my file before calling me.
Calmly, I answered the question. I didn’t cry or shout the entire time I was having this ridiculous, unbelievable, horrific conversation. I only lost control once, when I raised my voice a little, asking that my doctor and her secretary treat my situation with the urgency it requires. “It’s my life we’re talking about here. Please, I just need you and Dr. XX to take it a little more seriously, to work a little harder for me.”
She said “We’re trying. We’re very busy…”
I almost laughed. Really. It would be funny if it weren’t so scary. Because you can tell me that you are very busy if your job is, let’s say, filing lawsuits, or repairing bicycles. You can get backlogged or let things pile up without too much risk to human life. But telling me that you’re too busy to help me survive is not acceptable. Not in the breast clinic of one of the biggest cancer centres in the world.
It makes no sense. It is a nightmare. It’s a horrible joke. It’s my life.
So I asked for three things:
1) Research whether there are ANY open TDM1 trials in Canada for which I might be eligible.
2) If there are none, look at our shortlist of clinical trials at U.S. sites and tell us which one to pursue, since we are not equipped to make an informed decision on our own.
3) Tell me if Health Canada’s Special Access Program would apply in this case — in other words, can I get TDM1 on compassionate grounds?
I should have asked for one more thing:
4) Stop the ride, I want to get off.