I have the relatively unusual distinction of having ten medical professionals involved in the care of my two primary cancers: metastatic melanoma and papillary thyroid cancer. Among this collection are Oncologists and Surgeons of various specialty, a Dermatologist, an Endocrinologist, a Gastroenterologist, and even a Naturopathic Doctor.
Add the complication of long-distance travel to see said professionals, and my calendar notebook is a kaleidoscope of sticky notes and forget-me-nots. Names, phone and fax numbers, dates, and directions to offices in the maze that is Sunnybrook Health Sciences Centre crowd my notes and cause me the odd moment of confusion.
There is one individual who tracks all of this even better than I do, and that is my Family Physician, a.k.a. Primary Care Provider, or the Saviour. She has known me for years, she has cared for my children at every bump and (bone) break, and she gives me straightforward advice about cancer. She is organized and has detailed notes about my health and history, and she magically delivers questions in a painless way, even when I am trying to dodge her about something.
She gets all the shit jobs really; she was the one who had to tell me - TWICE - that I have stage 3 cancer, she kicked my butt into gear when I was panicking about surgery, she closely monitors my thyroid hormone levels, AND she is in charge of my day to day complaints (of which there are many, if you can imagine!? - I should issue a formal apology to the other patients in her practice who have had to wait after one of my "quick" appointments).
She has spent countless extra hours researching treatment options for me, she translates medical speak into common language, and she asks the questions that need to be asked, of myself or of other doctors in my circle. She patiently explains my CT scan or bloodwork results, and she always offers to print them out for me. She goes above and beyond by expeditiously filling out employer and insurance forms, and she even communicates with me after hours if we have an urgent concern.
She also maintains an air of reality about my situation; for example, when I was first diagnosed I exclaimed that I wanted to have every cancer test known to mankind, and she gently explained to me all the tests I would not need as they are not related to my particular type of diagnosis. She also said some of the tests could wait as I would become simply "Doctored Out." And she was right. I have been pacing myself on the peripheral tests unrelated to melanoma, and I am definitely Doctored OUT. (I say that with all due respect of course)
I am fortunate to have the thorough General Practitioner that I do, as I am aware that it isn't like that for every patient. It could be considered that we have a shortage of GPs in Ontario Canada, so many patients do not have the luxury of a choice in family physician, let alone the quality of care they may (or may not) receive.
My advice to a patient in a dubious or uncomfortable relationship with their family doctor is to be prepared, stay strong, and ask LOTS of questions.
It can be intimidating to be in the clinical office, but being honest about your fear or anxiety will help build a straightforward rapport with your doctor.
- Make detailed notes of any questions you may have, and prioritize those questions just in case you aren't able to get them all answered if there is a rush.
- When calling to book your appointment, be polite but firm with the assistant answering the phone. They are trained to be gatekeepers, carefully guarding the precious resource that is their employer, but if you treat them with respect and explain that you may need extra time with your doctor in order to not go over the allotted time slot, they will usually soften.
- If they cut you off on the phone? Call back.
- If that still doesn't work? Lay the "Cancer Card" - softly ask them how they might wish to be treated had they been diagnosed with a life-threatening disease. They cannot withhold the care of your physician. Yes we have to be considerate of others' time and availability, but we also have to fight for ourselves. To me, self-advocacy is as important as waking up every morning, so every now and then I place a well-timed hissy fit.
- Arrive for your appointments slightly early, and be prepared in case you have to stay later if the appointment is delayed. Not always easy to coordinate rides and other appointments etc., but it is imperative to keep a cool tool at these times. What else is more important than your health care - Nothing!
- Ask for a second opinion on the big stuff - or on any stuff. You're not going to hurt anyone's feelings, you are simply looking after your own best interest. All's fair in Canadian health care.
- Be organized, keep notes, have a friend or family member with you at appointments whenever possible.
- Follow your Dr.'s instructions, unless your gut tells you otherwise - and if it does tell you otherwise, ask more questions. Let your doctor know that you don't feel good. They are humans after all... just like us.
The Family Physician is an integral part of the cancer care journey, or any extended health care situation. They coordinate, monitor, translate, advocate, and guide our best interests. Whether or not we want to be in the situation we are in, we are best to make friends with our primary caregiver, as they are there for the long haul.
Hard to see in this very well-put graphic, but that blue horizontal arrow at the bottom? That is the Family Physician, in the cancer journey. All the way through it.
(click for larger image, it will take you to the website of the Ottawa Hospital, with an excellent article all about navigating the cancer journey)
These points are just some suggestions based on my own experience with cancer care and the medical system, in Ontario, Canada. Some or all of them may or may not be helpful if you are a patient of another affliction(s) and/or you live in another part of the country or world. I wish you the best in whatever medical journey you may be on.
And for the record, I am not a medical professional... I'm just doing time in the system.
And to the lovely Dr. E MD, this post is dedicated to you. Thank you for all of the crazy and wonderful things you do for my family and me. You serve as an example of what I wish every cancer patient could have in their family doctor, their family member. xoxo