If you don’t read all the way through the end of what’s written below please take one thing from this… THIS IS YOUR LIFE! THIS IS YOUR BODY! YOU HAVE RIGHTS! One of those rights (especially with doctors and medicine) is to ASK QUESTIONS, EDUCATE YOURSELF, GET OTHER OPINIONS, and BE COMFORTABLE with whoever is providing your treatment!!
I’ve been holding this post for the longest time because I’ve wanted to gather as many details as possible and really “finish” it but at this point it’s still not complete and won’t be due to medical decisions being made, we will be moving forward without it being complete by MY CHOICE. Two weeks after brain surgery I was looking for pathologists and oncologists due to the initial results from surgery. My case required additional post surgical treatment to best cure my tumor. I did get my doctors recommendation of process and place to go because there is an order to these things, so we began.
Just as a disclaimer: 5 years ago when I first got diagnosed with a brain tumor I went to 5 opinions for surgeons before not even having surgery until this year with the 1st surgeon I saw back then. The whole time I continued to see my doctors, ASK QUESTIONS, they were informative and more than willing to answer them. You’d be amazed at how many new questions you can come up with over time. I fully intended to do the same this time…I understand the urgency and importance of post surgical treatment BUT I refuse to take the first treatment plan thrown my way or prescription a doctor gives me without completely understanding why or what other options I have or who else is out there.
Unfortunately the most frustrating part of this has been the wait between the different steps (in the correct order), finding the correct type of specialists, getting appointments, having to revisit doctors for results, and then getting answers; all the while receiving calls from the first doctors trying to reschedule for treatment, does no one understand ‘I’ll call you when and IF I’m ready?!’.
What the follow up treatment in my case requires is (1) Radiation and (2) Chemotherapy, preferably with a set of doctors that work together which is not a requirement but just for my peace of mind and less need to play messenger between two offices.
For me this process started by my first consultation appointment on June 18th 2014, I attended that visit with the 3 pathology reports and all hospital records I had from my discharge. After 2 more very lengthy repetitions of the pathology reports at different locations, 3 visits with Radiation doctors at different locations (over 4 appointments), 2 visits with Chemotherapy Oncologists at different locations (over 3 appointments), 1 attempted Chemotherapy Oncologist visit which I was unable to get an appointment for we get to today. While attempting to get at least the 3 sets (Radiation/Chemo) doctors recommendations and that just didn’t happen I’m officially ending this searching process on August 28th 2014 since I found the best match for me. I found those doctors that answered all my questions, provided all the information I needed (and more), made me feel comfortable, are willing to work with my current medical team, situation and made me feel like I am in control of my own treatment.
It’s scary that there are these big institutions standing behind their names, history and reputation where people blindly depend on to make the right choice for them. Then there are the complete opposite, small, cutting edge, feel like home doctors doing the same thing. At the end of the day it’s a gamble really isn’t it? One of my doctors told me ‘It’s MY decision to make, not anyone else’s’ my response was very clear to him that I am NOT at all qualified to make any of these decisions, I didn’t go to school for years, I don’t know these terms or medications. But he was right… I know ME.
During this 3 month process of the unknown, fear, research, questions, appointments, answers and frustration I can’t help but think about those out there that can’t/don’t/won’t, those that can’t take the time to go see multiple doctors (face it — NOT EASY) , don’t have the time this all took to research/put together, won’t know what questions to ask each doctor, don’t have someone there to help them do so, won’t do so for any reason or are just not able to do so for themselves.
It makes me more grateful that I have had the ability and support to do all of the above. It makes me even more sad that I know most don’t have the ability, desire, understanding, support or awareness to do all of the above. And everyday I can’t help but think there has to be someway to make this happen. If you know anyone that has a medical condition or something going on in their life encourage them to do something about it, but remind them that it’s THEIR decision… ASK QUESTIONS, EDUCATE THEMSELVES, GET OTHER OPINIONS, and BE COMFORTABLE with whoever is providing their treatment and if they can’t, we’ll find them someone who can help.
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