"Good communication is the bridge between confusion and clarity." Nat Turner
It's no secret that communication is the key to success in any relationship. This is true of lovers, parents and children, sisters and brothers, friends, co-workers, and acquaintances alike. It should and I would imagine in most cases also applies to our relationships with our doctors. Cancer has only been in our stratosphere for about four months, but you learn things so quickly when dealing with a disease like this. You trust people, their expertise, and the science and kind of just do what you are told. The reality of the situation is, that you are in a race to save your life, and you are scared. In the beginning, there are so many what ifs, too many tests, and a lot of not knowing what the hell is going on. You are hoping and trusting that your doctors and the team around them are making the best decisions on your behalf, and praying for the best outcome, sometimes forgetting to advocate for yourself along the way.
When Kim came to me last December and told me she had cancer my first thoughts after the initial shock wore off was "she's going to fight this!" She was already scheduled to meet with the breast surgeon, and it seemed as if everything began spiraling from there. Before we even knew it, we were sitting (me virtually) in front of several doctors, being told several things all at once. Out of the five doctors, I met with her in those leading weeks, only one ever even asked her how she was and how she wanted to handle this. It was as if everything had been decided for her, and it's such a whirlwind that you basically sit there and nod along in agreement. It was more than a month from her initial diagnosis to her full diagnosis and as her case got more and more complicated, her voice got quieter and quieter. I mean her mind must have been a clusterfuck of confusion, mine was and it wasn't even my diagnosis. We would try to write things down, ask all the questions, and remember all the things, but it gets to be very overwhelming. At this point, myself and several other folks had suggested and hoped she would get a second opinion, she didn't. I think she was so overloaded with information and just ready to get started getting better that the idea of having more tests, and more doctors involved just didn't sit right with her. She felt comfortable enough at that time in her team that when it was time to start chemotherapy, she did.
There was never ever an expectation that this fight was going to be easy. As a matter of fact there were numerous conversations around how hard it was actually going to be. We personally know women who have been or are going through some version of this hell, so we were in no way naive to how sick she could potentially get, how awful she may feel, and everything in between. What we didn't expect or even see coming was the lack of communication from her oncology team, once treatment got underway. If I had one word to explain the communication out of her current oncology office it would be "abysmal". So much so that if you or I found ourselves in this situation tomorrow, I would not recommend we use them for our care. I am not going to get into specifics, but I will say it has been more than frustrating dealing with anyone in that office, and not just recently. This has gone on since round one, week one. On many occasions, she has been left with too many questions, not enough answers, and A LOT of frustration and stress, unnecessarily, but I digress. At this point she is so close to finishing chemotherapy that it's more than apparent that she needs to keep her head down, finish up and move forward. Going forward for follow up purposes however, I believe she will be seeking a new team, as she should. In the end, you have to be comfortable with the team who is responsible for your care and a big part of that is being your own advocate! If you don't like the way you are being treated, or are uncomfortable in any way, there are alternatives, and you should seek them out.
At the end of the day, the current team has put her on the path to healing and we are very grateful and thankful for that, despite all of the setbacks. They are all very nice people, and not every encounter has been unpleasant. There has just been some big communication errors on their behalf throughout this whole process. We should all want good communication with our doctors, and caregivers, it's supposed to be a partnership to help you be the best version of you! As for Kim, she is going to be fine. She has 19 days till her final infusion. Next week, she has some surgeon appointments scheduled and will gain some clarity on how all that is going to go down. Once she wraps up chemotherapy, she will be quarter of the way through this process! I keep reminding her, the comeback is always stronger than the set back, and sometimes when things seem like they are falling apart, they are really falling into place. As I always say, this to shall pass!