Torturous as yesterday’s post was to write, I had to do it. Thanks to everyone who managed to pluck up the courage to reply to the unrepliable with comments and e-mails. Apologies to everyone who felt paralytic or overwhelmed (I think that’s all of us) but this was only ever going to be a very bumpy ride. Lifejacket is under the seat and there’s a barf bag in the seat pocket in front of you – let’s hope we don’t need them too often.
For the moment, the sun is actually beginning to emerge from behind the dark clouds for a change: we have found and are applying for a clinical trial at last! The study sounds promising — the most promising of all the experimental drug trials we were able to find — and there is a study site in Montreal, which isn’t totally ideal, but it could be worse, it could be much farther from home. It could be outside Canada. I’m not sure how swift the enrolment process will be or how we are going to handle the financials or logistics, but I’m already feeling so much better and more hopeful just knowing that there is a plan underway at last.
It’s amazing how much difference a little glimmer of sunlight can make. We are going to be doing something. And it might actually work!!
Unfortunately, getting to this point has been excruciating and, as anyone who read yesterday’s post can attest, the process has forced me to face the grimmest realities. Among them, and second in grimness only to confronting my own mortality, was the realization that our medical system completely fails in its support of patients with cancers that don’t respond to standard treatment.
The transition from a supportive, comprehensive cancer-care system to the bleak no-man’s-land of post-standard-treatment was so sudden and jarring that it took me a while to realize that I had in fact been left to my own defenses. Apparently the system just isn’t designed to take you any further than approved drugs and standard treatments, so if you have to go the non-standard route, you have to navigate it yourself.
Meaning it is up to the patient to research and choose her own clinical trial. The patient, who in the majority of cases does not have a medical degree. The patient, who is reeling from the news that there are no more treatments for her. The patient, who is probably grappling with gigantic questions like “Am I going to die?” The patient, who hopefully speaks English fluently, knows her own medical history intimately and is handy with the Internet.
Aside from the basic impracticalities of this situation, it has the psychological effect of leaving the patient out in the cold. It sends a message of hopelessness. It says: your cancer is so bad, we’ve given up.
I believe I wasn’t totally abandoned only because I and my family reached out repeatedly for help to my oncologist, the hospital social worker, my amazing family doctor, a clinical trials nurse, and many, many other people. I’m deeply grateful to all of them for their help, but I’m still stunned and alarmed at the totally unacceptable failure of a system I believed in and trusted with my life.
But enough about all that for now. Really, I can be all stunned and alarmed later. Right now I just want to enjoy the sunshine.