My doctors, nurses and primary care doctor are wonderful.
But I realize that I am asking them to do something impossible, to help with the day to day challenges to my body that may not be a direct part of my bone marrow cancer, but are deeply interrelated with it, with each providing the context for the other.
For example, things that might be easy to get the right medical treatment for become more complex and perhaps more dangerous with my immune system compromised. Needing dental surgery becomes much urgent because lack of teeth makes it harder for me to eat enough in the face of nausea, and I had been already losing weight. And so on, and so on.
While PCPs are excellent short term caregivers, and while the oncology system hones in really well on the best treatment for my primary disease, its hard for them to most effectively help with these second order issues that none the less can have major impact on quality of life and length of life outcomes.
So, I wonder if we need a new kind of internist who focuses on, for example, the non-cancer issues of cancer patients, and the equivalent issues for other serious illnesses. These professionals (and they need not necessarily be MDs) would help those inpatient, and those getting regular outpatient care. I suspect that something like this is already being done for those getting bone marrow transplants, because the issues are already so much more obvious in that context.
In a way it is a bit like the relatively new role of hospitalist, who fills a previously unfilled slot.
Anyway, am I right about this need? Is this the right way to meet it? How might it be tested and implemented? How might patient councils explore this need?
Above all, is this what patients want?