Your Care Team Starts with a Captain
THE PHYSICIAN TEAM
Over the six and a half cancer years, Steve had many physicians, radiologists, oncologists, surgeons, and each time he was in the hospital, it seemed like every specialist stopped in to see him. Of course for the final hospital stay, we were not disturbed, except for the DNR discussion.
In 2008 Steve was fortunate to meet a new doctor at University. This physician became team lead, and a great source of support over all the treatment years. During this time Steve had chemo, biologics, participated in clinical trials, and back to chemo again. Since he'd already had radiation prior to 2008, that was not explored until the very end, strictly for palliative, measures to relieve pain.
I'm sharing these details with you because I want to stress the importance of having a team. Your team. Think of this group: social workers, nurses, physicians, therapists all there to stop the cancer or other disease.
The dedication of these devoted and passionate people is amazing; make sure you are receiving high-quality care, both during and after treatment. During our journey we visited an oncology center, there was a large treatment room, it was not for us. You have options and deserve respect, and all the resources available. Sad to say, "cancer is a business ... and we are customers."
Recognize the difficulty physicians have in explaining end-of-life issues. You may need to start the conversation; it's important for your doctor to know you are open, and make sure the family is present for this discussion. Yes, you will want every available treatment, but these open discussions are so important. Finally, and perhaps most worrisome, a misunderstanding could represent an obstacle to optimal end-of-life planning and care. This article in the New England Journal of Medicine is helpful: Patient's Expectations About Chemotherapy.
We all want the best of care, for ourselves, our loved ones. Get involved in the care, make sure the necessary paperwork is on file, seek integrative therapies, counseling, and don't forget to voice your concerns: pain, nausea, energy. There are so many solutions available today, but if you don't ask, you may not receive. If you are the caretaker, do not be shy about adding your voice; over and over again if necessary. It needs to be said that each physician has any number of patients all in various stages of treatment. Your voice is but one of many, so make sure you are heard.