Breast Cancer: The Weight of Waiting
By Catherine Maina
My birthday is flamboyantly controversial. My parents are sure they brought me into the world on the 7th of June thirty years ago but the government of Kenya decided that I was born six days earlier, on June the 1st, and my official documents say so. That is why my fellow nurses at the Royal Infirmary of Edinburgh threw a surprise birthday party for me on the 1st. Just after the breast cancer diagnosis. But they do not know about the diagnosis. They need to wait.
It is 11h03 British Summertime (13h03 EAT). I am not thinking how wonderful it is that I was born. I am worried that I might die. I am in the waiting bay at the Edinburgh Breast Unit of the Western General Hospital. Last week I was told I had breast cancer, but nobody could confirm the stage and grade yet. I was asked to wait for the results of the fine needle aspiration (FNA) biopsy.
An FNA happens when doctors want to get slivers of tissue from an organ or a mass to find out what type of cells the organ has. Or, simply put, to study that organ in finer detail. When I came here last week, they sedated my left breast then asked me to wait as the anaesthetic knocked my boob out. Then the specialized therapist took out bits and pieces of the swelling inside my breast. A clinical support worker applied pressure on my breast to stop the bleeding. Then I was told to wait.
I seem to be doing a lot of that lately, waiting. I am waiting in this bay for my 11h15 appointment with Mr J., my breast cancer surgeon. I arrived fifteen minutes ago. I forgot my appointment card at home. The medical receptionists do not seem to mind. This is a cancer unit. There are more worrying things than forgotten appointment cards.
There are a few of us here. I can count ten women and two men. Both men brought their spouses. One is in a purple and white checked shirt, and he seems uninterested in his wife’s conversation. The checked shirt has caught my attention. It is a pattern favoured by men from central Kenya. All he needs is the signature baseball cap that Kikuyu men wear and he could be a Kamau or Njoroge. He is playing some game on his iPad as he nods absent-mindedly to whatever his wife is saying.
Most of us are on our gadgets. There is an unspoken sense of apprehension. We choose to speak to our phones and not each other. We want to cling to a sense of normalcy. For the current generation, normal comes in a small box with a keypad, a camera and attention deficit. We have no idea how to speak to real human beings.
People keep streaming in, more women than men. Breast cancer is more common in women than in men. I see it here. More women come in. The seats are now all occupied, and I give mine up for an elderly woman who has just come in, huffing and puffing on her walking frame. Dear God, I think to myself, just how common is breast cancer here in Edinburgh?
There are women from all walks of life here. I see a Chinese woman, or Korean, I can never tell the difference. Another is Filipino; I know because she has just answered her phone in Tagalog, the national language of the Philippines. Several of the women are Caucasian. I am the only black girl in the waiting area.
Where are the black people in this waiting bay? Did they come in yesterday? Perhaps they will come tomorrow? Why am I the only African in this waiting area? Probably Mr J. will tell me that he has made a very big mistake and that there is no cancer in my left breast. It could be that I should not be here. In fact, since I began this cancer journey not once have I met an African.
A bespectacled doctor has called in a Mrs Frame. Mrs. Frame is the woman I gave my seat to. She is using a tripod frame to walk. I see a pun here and I think it is funny. But this is a cancer department. We don’t laugh here. But I feel a smile take form on my lips. Thankfully, the face mask I am wearing hides my amusement.
There is a six-foot-tall woman near the exit of the waiting bay. The waiting bay has an entry and an exit. We come in through the entry where the medical receptionist is perched on her chair like a patient mother hen and we leave the bay through the exit when we are called in to see the doctor.
There is a water dispenser near the exit. The tall woman looks young. Thirty-something young-ish. Her presence gives me hope. That I am not the only young woman here. She moves restlessly on her lanky, sun-kissed legs. She is wearing a pair of booty shorts because the summer sun is here with us. She keeps tossing her mass of bronze of hair as she scrolls through her phone like someone looking for social media notifications.
It is like we are all keeping her from more important things in her extremely busy life. She looks like she will make a run for it. I cannot blame her. I too would run. If I could run fast enough to escape a breast cancer diagnosis, I would. She is pacing. A sure sign of anxiety. I am tempted to either join her or stop her. I too would rather be anywhere else but here. I need to be with my dialysis patients. I want to continue being a nurse, not this patient waiting in this lounge.
Two clinical support workers enter the bay, sweeping it with their roving eyes as if looking for someone or something. Then they leave. I do not like this. I wish they would speak. Which reminds me of my own practice as a nurse. How often I go to the waiting lounge at the dialysis centre where I work, use my eyes to scan the area then leave quietly. I make a mental note to change that. I will be engaging the patients and the waiting relatives. I will even be telling them that I am just looking for someone, or something. The silent eye-scan is unsettling.
As if on a surgically precise cue, one of them pops back in and asks if the room is too hot. A middle-aged woman in an unremarkable pair of jeans says the room is hot. The clinical support worker promises to turn the thermostat a degree or two lower. I do not care about the temperature. I care that she has spoken to us. That we are not just waiting slots but real human beings with varying repertoires of cancerous anxieties.
For a moment I feel sleepy. I have been writing on my smartphone to keep myself occupied. I am exhausted. I have not slept well since they gave me the diagnosis a week ago. My nights have been screaming terror and yet, in the noise, God has been roaring. He gave me pen and paper. I have been using them to bleed out my fears. But now I need my bed. It is way past my appointment time, which is not surprising given how thorough these specialists are.
“Miss Meina,” a familiar voice pierces through the silence. I quickly put my phone in my purse and stand up. It is Mr. J, my breast surgeon. He cannot pronounce my surname properly, and he calls me “Meina” like many white people do. I do not mind. As long as they spell it correctly.
After profuse apologies for keeping me waiting, Mr J. starts breaking things down.
“We are lucky that the Stage is confirmed to be 1 and the tumour is in grade. . .” he starts. Nurse A, the breast cancer nurse assigned to me, joins us in the consulting room.
“We will need to run more tests to determine the best form of surgery to remove the tumour. Have you ever heard of gene mutation?”
Everyone has BReast Cancer (BRCA) genes. There are two types, BRCA 1 and BRCA2. These genes are protective in that they stop the cells of the breast from growing out of control. Sometimes we inherit faulty ones. Or something in our environment causes them to change and mutate. This places us at risk of developing breast cancer. Even then, only 5 per cent of all diagnosed breast cancer cases are due to a faulty gene.
“If we find faulty genes Catherine, we might have to start thinking about double mastectomy with breast reconstruction.” Mr J. says matter-of-factly. Sweet King David and the choir of heaven! Did he just say total removal of both breasts at thirty? What exactly are you telling me? What about the children I hope to bear someday? What about my dreams of motherhood? Could this disease have come at a worse time? An unwanted boob job? I am not ready for this conversation.
I stand up and head for the sink in the room. I am torn between vomiting and screaming. I settle for crying. The tears, hot, bitter, angry tears roll down my face. I don’t bother to wipe them away.
Mr J. rubs my back as Nurse A hands me tissues to blow my nose. More blood samples are taken for these complicated tests. I cry some more. Now I have to wait for the results of these tests. The waiting never ends. The fear of the unknown creeps up to me like a menacing nightclub bouncer.
My battle with breast cancer has taught me two things. How to be afraid and how to wait. I do not lock out my fears. I invite them in, make them a cuppa tea and then use my fork to poke them in the eyes. I no longer wait while doing nothing. Doing nothing is the chief ingredient in the meal of overthinking. I wait while writing and praying. I wait while reading and researching. I wait, ultimately, while clinging onto the hope that the God of the mountain is still God in the valley. Afraid and tired, I wait.