I see you running room to room, blood pressure machine on wheels in tow, thermometer tucked in your pocket. You ask the standard questions as you scribble down vital signs on sticky yellow paper. My eyes search for yours, wondering if you see me. Your boss comes in with their white coat and stands so far away, am I contagious? Can you catch what gave me cancer twice? I wonder if I smell or seem to be a bad person, that you choose to stand away from me and refer to my diagnosis, as me.
You keep going as the white coat speaks while leaning into the wall with arms crossed and an occasional nod and the worst, the white coat keeps looking at their watch more than my eyes, or flat out says “I don’t have time for you”, as if to say I had a choice in getting cancer and the results of what the surgeries did to what was a healthy body. To say I am the most complicated patient you have, yet not be interested in understanding the diagnosis you say you have never heard of, post mastectomy pain syndrome, post mastectomy syndrome with rare complications or the other 20 different words the medical profession uses to describe women like me.
The silent victims of breast cancer, the ones they don’t talk about in their pink celebrations, the ones who don’t get to walk away, ever.
I can assure you we are not “emotional” we cope with more pain than you have ever felt. We have skills to deal with pain, you don’t care to know and dismiss our questions, our pain, our fear, the damage to our bodies is heartbreaking. When you say, you’re running late and have a student to worry about more than me, for the brief few moments I can have your ear. It feels like a number getting your order at the deli counter and then dismissed with a yell for the next number, not a person, just a number. When you don’t want to understand or even hear about the rare disorder the other white coats say I have, how are you treating all of me without all the knowledge? How do you know what will or will not make things worse if you care not to understand what those same specialists you like, say I have? Those same doctors you say have skills greater than your own; how can you speak for me and advocate for me with these specialists if you choose to ignore a large factor of my body and the PMPS I live with. The diagnosis called “rare” that I am stuck with and it doesn’t come with the knowledge an MD has. It only comes with the knowledge that there is no cure. What is diagnosed effects the body but you only care about one part of my whole body, dismissing the rest with a statement that my pain or tears need a therapist, a dismissal as if to say you’re too much trouble to be bothered with. So, mixed up with all the “I don’t know” statements from you along with I don’t want to know, by refusing to even hear what it is they say I have, that you in the white coat say, you never heard of. Yet you state a specialist in Boston or one in Georgia are the only two that can maybe do something. That this invading beast of endometriosis may be attached to intestines or other organs making surgery difficult and possibly life changing in a bad way. All of which makes the PMPS pain far worse.
How horrible it is to feel your provider isn’t interested and there might be two doctors in the whole of the nation that could maybe do something. How disappointing and defeating it is to hear such words. When the tears fall, a normal reaction, meeting that with see a therapist instead of understanding says, crying is wrong. That sadness in what you are facing is wrong. That distress from having even more injections, painful injections, as your only course of treatment for what they say has no cure, again. How many times can one be told they have incurable disorders or diseases? For me, to many times. No cure for endometriosis, no cure for adenomiosis, no cure for post mastectomy pain syndrome with complications effecting almost all major organs. No cures just treatments for symptoms, yet don’t cry as that is not allowed.
I call bullshit, crying is normal and shouldn’t be silenced. A person can feel and react normally to saddening situations. It doesn’t make one weak of mind to simply allow the sheading of tears, the release of pain and heartbreak to know everything seems to come with, no cure. I feel rushed to get out of your office away from your accusing eyes of aggravation for taking too much time out of your day, for adding to your already behind schedule you very frustrated told me. I did not ask for this, and I wish you understood that more. I wish you knew how stinging your words are as they come from you in a matter of fact way and end with, crying is wrong. Are doctors taught to feel or is all their empathy removed in med school? How frustrated or how would they react if they had to spend their life in my shoes. A place I wouldn’t put my worst enemy.
Do you not remember it is all connected? Do you forget why you went into practicing medicine or where you never taught how to be kind in a hectic world? No matter the reason, I am left feeling more alone by that aspect of my medical team than I do any other time in life. Your refusal to hear me to truly listen and not treat me as an “emotional woman” leaves me, the patient, at a loss and silence where I had a question but realized it was pointless to ask, you didn’t want to take time to answer, it was too stressful for you.
One tries to place the cuff on my left arm and I must recoil and stop them. Indignant in your eyes you go to the right arm and start over. Do you know how much fear we are giving with the title lymphedema, another incurable? The worries of infections, and more, did you know I could burn that arm and not feel it at all, that I use a mirror to see the back of it in routine checks I am told to do, forever.
Did you know there was a day that I did not have this? A day when they wouldn’t have noticed me at all. A day when my presence was unusually or on the clock with you, not on the table in front of you, paper gown and paper “blanket” covering my disfigured body from clear view.
I could run fast and push a heavy code cart that always seem to have the smallest wheels with a heavy weight as they are life saving devices on small shopping cart wheels. They squeal down the hall with staff in tow; ready to see the body of a person and a diagnosis, not the one who wears “fuck this” socks to their treatments. A way for me to have a distraction. To have a moment with a smile from you, I hope for, but defeated I leave knowing I’m just a paycheck, a number, a diagnosis, it’s not the same. You question support systems while taking away one, you. Fear of trying to even ask questions and not being allowed to ask questions when you only see me occasionally maybe a few times a year.
How lucky I am to know my primary care provider does care and is studying this disorder to better help treat it, knowing that he is willing to go the extra mile to help increase quality of life is priceless in the face of a white coat more concerned with time, than care.
Some tell us we should be “use to it” it shouldn’t be “hard” stop “whining” you get this all the time. “Oh, you’re a pro at this. How sick I feel and the sinking feeling of defeat felt when “this” seems like it is forever. There is no end date on this course of treatment. No day to look forward to and say it is, over. Till science catches up with us, we the 160+ women await a bright young mind that finds what we seek, that finds, the cure.
They rub the sponges across my abdomen to prevent infection, cleaning off the area.
We make small talk as I try not to shake from fear knowing what is coming. For you it is routine, as are the questions about medications, allergies, or falls. Falls imagine in your forties having that question asked at every visit. Your aged beyond your years and have the questions and tools associated with your own grandparent. Broken not sick or diseased, but broken beyond repair.
Today you ask your standard questions and I wonder if you know how hard it is. Month after month climbing up on that stretcher answering the questions and laying back knowing needles are coming. No, it does not get easier to have so many needles stuck into you. My last count about nine or ten all at the same appointment. Do you know it felt like hours to me? Meer moments in your day as just another chart comes through. Tears rolling down my face are not fear but pain.
A spot is found and injections start, the pain sears down my leg and I jump screaming out uncontrolled while you say, “don’t move”. Do you know that whatever that injection was created a pain so bad I lost control? I did not “move” by choice. The fear of moving and causing injury so bad, the fear is yet another lonely stay at hotel hospital.
Oh, how much it sucks to be seen and known right away. To be that “frequent flyer” that “train wreck” patient who for some is an “oh no not her” and for others a “oh no poor things, I am so sorry for her”. Pity or cruel gazes it all feels that same, horrible.
Horrible embarrassment and wishing I did not know so much. Wishing I didn’t know what terms would be used for me, now a number in the office room 2, in the emergency department 27, or inpatient 4056. The staff rushes along and askes, “did you get vitals on 4056?” or “Can you go help 27 to the bathroom”. The body is just a body it is an assignment with duties to be done.
Some smile and try hard to be helpful and it is heartwarming and tearful all at the same time. It is the knowing of me. It is what doesn’t have to be asked or said because it is that well known. It is heartbreaking and embarrassing. It makes my heart hurt, my head spin, and my brain SCREAM, PLEASE WAKE UP! LET THIS NIGHTMARE END. How much is too much for any one person to carry on their back? Like atlas carried the world in story you don’t know I carry my own with me too. Heavy on my back with solace only found among 160 women from around the world. Women who found each other and said, me too.
These women know the knowing glances, the sadness behind the eyes of family. The pains of “friends” who fall away, who cannot deal with NO CURE YET. Times, we chat would they come back if we were cured? Could we handle them coming back, knowing they left at the worst of times, the darkest of days when death was something we felt breathing on the back of our necks and feeling a beat away from the angel of death. The forever night and the unknown, the memory for some and others quickly forgotten as new bodies fill the numbered rooms.
Know that your kind eyes can help, a word or two that seem personalized and not memorized can make all the difference. To truly listen to the words coming from my heart in pain and mind in fear. Looking for reassurance not rolling eyes at the “stupid” question. The simple gesture of holding a hand can stop that horrible heartbeat in my throat. Your hand on my head, stroking my hair as I writhe in pain begging to be unconscious to stop feeling what I feel. How do I tell you I am suffocating despite your machines? How can I say the pain is worse than giving birth and comes with sharp stabs of a knife through my heart into my back, arching my back contorted from pain and spasm? What are you thinking? Do you see the exorcist in me, I do? I see the vomit I swallow as it comes up, the burning pain as if I was pulled from the sun after sleeping in its’ light all day. My shirt feels like needles touching me. A rolling feeling as if the room is spinning for a moment, medication given. They leave and you hope, it fails and you cry knowing you must be given more. Knowing your stomach feels awful and your body in so much pain you say again, please please just knock me out. Anything is better than this.
**”The Patient” is a short story of a collection of reported real life events from Breast Cancer Survivors with PMPS (Post-Mastectomy Pain Syndrome) and I. I am “one of them”; it is hoped you will gain insight into a large populous suffering in silence all around the globe and yes, across the United States of America. The silence must be broken and the medical community needs to hear our cries for real studies, advances in treatment, and protocols to prevent more patients. Patients who suffer alone, confused and in pain, silently pushed the back file of the cabinet marked, incurable.