Updated: Feb 18, 2021
Self portrait, front view a couple days after initial diagnosis on December 29, 2020.
Language matters: Since my diagnosis I have become hyperaware of how much derogatory language we have around the rectum/anus in American culture; this may be true in other cultures - I will likely look into this as I am curious. But phrases like: You're an asshole, it's been a shitty week, I feel crappy, kiss my ass, brown noser, tight ass, and more are a daily occurrence. Example: I had a really bad experience with a surgeon recently and left his office and immediately called him an asshole in the parking lot. Then said, "wait, I don't want to call him an asshole because I love my asshole and I want to keep my asshole. Asshole is too good of a word for him. What should I call him?" None of these listed terms are endearing or have any positive connotation but they are regularly used and I am no longer able to ignore how this language denigrates a part of the body that is vitally important and valuable.
"Pull your pants down and bend over" or "Pull your pants down to your ankles or take them off, then get on the table". Two phrases I'm hearing nowadays in exam rooms. Has it occurred to anyone that rectal cancer is sensitive enough, scary enough, embarrassing enough without the added lack of thought or compassion around language used for exams? Both phrases are crude and denigrating, not unaligned with language used in bad sexual encounters or traumatic experiences. How about: lower your pants and lean over the table or remove your pants and find a comfortable lying position. These are minor changes to language but are an immense improvement from the patient perspective.
Isolation is a mainstay: Perhaps this is exacerbated by the pandemic, I cannot say for sure. But I have been left alone for hours in bare rooms, usually the size of a closet - waiting for tests or results without anyone checking on me, updating me, or just saying hello. Sometimes these rooms are loud with rattling anxiety inducing accompaniment that is unexplained. Other times, it is four blank walls and a sterile hum to contend with. Either way, you are completely alone. Pre-pandemic, I am not sure if this would be the case. Medical staff are either not trained to be aware of the effects of this isolation factor (pandemic or not) and how it plays out for cancer patients or just don't consider it as something necessary to contend with. Maybe it is so common place for them that they forget how the newly diagnosed are battling an emotional roller coaster called I KNOW NOTHING YET AND I DON'T WANT TO DIE. Sitting in isolation exacerbates this. We know there is nothing to read because of Rona and honestly, my stress level does not allow for the concentration reading requires anyway. But why is there no music? No funny videos to watch?
If you're wondering, I do bring things along to entertain myself. I love to draw and color. However, the facilities and testing situations often remove these personal belongings and technical devices that allow one to be connected to the outside world. For better patient care, these items need to be provided in the waiting spaces.
Dignity is not on the menu: This goes back to language again as the words we choose have a whole lot to do with dignity and respect for the body and each other. But even beyond this, of all the cancers to deal with, rectal cancer is by far the least elegant. The rectum and sphincter are not parts of the body that the average human talks about (unless using language mentioned above) or considers beyond daily toilet trips. But one becomes very fond of their sphincter and literally begins to have awe and respect for this body part, when told you might have to have it removed and replaced with a colostomy bag. Poked, prodded, and fashioned in medical gowns that are three sizes too big, then sat in a cubicle or corner till whenever they come back for you. Don't expect to ask questions or need assistance because there won't be anyone around. And typically there is fasting involved or other diuretics or both, so the body is empty of food, water and caffeine which makes this unsteady situation even more shaky.
Isolation, isolation: Did I already say this? Did I mention that the rooms are cold, like being in a refrigerator? Why are there no windows or pictures of beautiful plant and animal life? These images would certainly help with staying connected to the idea of life beyond the bomb shelter one feels like they have been placed in. The courage it takes to confront a cancer diagnosis, especially one that is high risk is unmatched by anything else I have experienced. You have no choice but to champion forward. To sit in the bare rooms and wait for those that have more power and control. But this valiant effort to confront the cancer with all the bravery one can muster, seems to be something done mostly in isolation as well. Very few people, medical or otherwise are able to hold space with cancer. To acknowledge the daunting thing that it is. I don't feel there is any requirement for friends to be able to do this; those that are able are not average folks. They are somehow made for this kind of work involving areas of trauma, grief, and compassion. They have had life experiences that support their ability to be present and hold the space. I do feel it should be a requirement and it is the responsibility of medical personnel to be capable of this and provide a higher level of care. Not every experience has been bad for me in these first 7 weeks but the majority have been negative. It shouldn't be this way.
I am thankful for the family, and handful of old and new friends that have been able to hold space with me and listen in these first weeks of a complicated diagnosis.
No smiles or celebrations: No news is good news is what seems to be the case thus far. Any test result that might yield positive talk is taken in stride or minimized. Do not expect medical professionals to be happy with you or feel anything but neutral. I don't think they do it purposefully but they see you as the diagnosis and until treatment is complete and the facts are all in, there will be no fanciful thinking. It seems that they are over-burdened with the responsibility of not allowing you any false hope. It's almost as if hope is the enemy because they don't want to be wrong or sued. However, they are consistently letting you down by not being more willing to connect human to human in the process of diagnosis and treatment. This is a shame in my opinion. I do not need to be protected from hope. I need to be cared for by a doctor that sees me as a whole person with a life worth living, and I prefer a doctor who can smile, laugh, and celebrate small victories.
I have gone to lots of extra appointments in search of the right doctors for me and I am making progress. I have two female doctors on my team now and this is something to celebrate!
Kill the shame: So why am I writing this? Am I writing it to complain and feel sorry for myself? No, though I think it is okay to feel sad and overwhelmed at times in a situation like cancer. I am writing this because I am embarking on a path of self preservation, healing, and patient advocacy. The changes that need to be made for better patient care are not radical; large benefits to patient experience could be had from minor changes in spaces and slight adjustments to interactions with medical professionals. As a patient, I plan to be vocal about my care: what I need, want, and deserve.
And as a person dealing with a cancer that is common but high risk, and that is becoming more common especially in younger persons, I am making the conscious choice to be open about my journey. My first instinct is to be ashamed but there is nothing to be ashamed of. I have cancer in my rectum, a part of my body that might be lowly regarded by many, considered gross consciously or unconsciously, but ultimately a body part that does amazing and important things for the body. I no longer want to think or speak negatively about this part of my body. I will not call cruel doctors assholes because they don't deserve this association. :)
Being open about this diagnosis is a way for me to kill the shame, honor my body - each and every part, and to perhaps help someone else who might be embarking on something extremely difficult.
Self portrait, back view a couple days after initial diagnosis on December 29, 2020. Very obvious negativity associated with the posterior view. Kill the shame!