When you have metastatic disease, or any illness for that matter, often you learn the hard way to speak up for yourself. Confrontation is difficult for me and questioning medical professionals can feel very scary.
When I say you learn the hard way, what I mean is, you typically fall through the cracks a few times in our healthcare system before you learn that if you don’t speak up and/or ask questions, your care may be delayed, missed completely, forgotten, worsen, or mistreated…you get the idea.
Even when you have a world renown oncologist, exceptional nurses and medical staff, you may fear this more than cancer sometimes. There is a false sense of trust initially because of their knowledge and your lack there of.
I am naive sometimes and trust that everyone has my best interest in mind when I meet them. After all I have theirs. I know that I trust first and question second which is how I became so ill.
It took eleven months for doctors to find my cancer. I didn’t question their diagnosis, nor their confidence that I was fine and worrying too much. I didn’t question why I began to hurt more- assuming this doctor is smarter than I am. Today, I pay for the price for being afraid to speak up. My family pays the price for trusting first and questioning second. It is this silence and false sense of security that I want to help others with.
What brings me calm during this storm is knowing that while I may have not advocated enough for myself back then, I am now. I have a voice and I demand to be heard no matter the consequence.
I went to have a biopsy last week on my liver. I have had two others so I did not have as much fear this time. I knew the facility. This doctor had operated on me before.
As I laid in pre-op I went through the routine of donning the gown and hair cover, blood work, blah blah blah. It felt routine right up until the doctor asked me “Why are you even here? I do not see the lesion” he stated dragging the cold ultrasound across my abdomen. Her pushed harder and harder, ignoring my twitch of pain. In my head, I told myself this is necessary-he knows what he’s doing. I was silent. He tells the others in the room that he will need to put me inside the CT machine in order to do this biopsy. He sighs, they leave the room to talk. I am alone in the room on the operating table. “Put her to sleep” were the last words I heard.
I woke up in pain. I had not had any pain in the past with the same procedure, so I asked the nurse about it. She asked my pain level on a scale of 1-10. I told her 10! The nurses assured me it was normal. They said everyone has pain on their right side following a liver biopsy. It made sense, so why did I begin to cry. I could hear one nurse saying to the other, “she said her pain was at a 6 but now she is crying”. In my head, I screamed,
“I said 10”.
And, the pain was on my left side. Well, I could go on and on about my tears that were ignored, the fact they forgot to call my husband to pick me up after surgery or that I ended up in the ER that very same evening. But I will spare you.
But, NOT THEM!
The old Jennifer would have said nothing, endured and pushed through my fears and anxiety. The old Jennifer would have convinced myself that if I speak up, I risk poor treatment in the future should I end up with that doctor again. The old Jennifer would have said it is behind me now so what’s the point? The old Jennifer would have said at least you are still alive.
The point is, It was horrible healthcare I experienced and it hurt. It was unnecessarily scary and I was ignored. The next patient shouldn’t have to go through this.
I spoke up. I used my new voice. It is never easy, but I know I speak for many now. Do I blame doctors for misdiagnosing me for 11 months? I do not. Do I blame myself for not trusting my intuition back then and speaking up. I do not.
I am not angry, I am just a heck of a lot louder now.