There are very few places in the known universe where a woman with two black eyes and a sliced up forehead can go without risking comment, stares, revulsion.
This weekend, I found one of those places.
I’m in Cardiff with my kid for the official Doctor Who Convention, which has been a fantastic adventure nearly beyond belief.
Every single one of my childhood dreams will be fulfilled. Systematically.
This morning that included transport to the film set, where I nearly melted with joy as I wandered around the Tardis:
Today the bandages came off for the first time.
I stared at myself in the mirror for awhile, then turned to Byron. I said “Normal people would be really upset right now, wouldn’t they?”
He looked, and sighed, and said “Yes.”
Lucky I’m not vain, or normal.
The surgeon was impeccably conservative, taking only the tissue that needed to be removed, and verifying each layer with diagnostic tests. The reconstruction was performed by a world class plastic surgeon, and he feels he achieved an “excellent result.”
Would you like to know what that looks like?
It looks like my face has been slashed open. Think duelling wounds, or fending off a knife attack.
I honestly don’t know or care what other people think of my appearance. I don’t care if you notice the scar, or what you think.
The only opinion that counts is my own, and this scar is disturbing because I can see it. Looking at it reminds me of things I prefer not to think about. This is simple, unavoidable, and awful.
Because, like I told the nurse in the recovery room, you can’t argue with cancer.
I was officially diagnosed with two different kinds of cancer in 1983. Since then, I’ve never gone more than three years without a biopsy, and subsequently, there is no nervous anticipation attached to the results.
The lab examines the tissue and confirms what we already know, repeat, ad infinitum.
Because of my history, the doctors take off a margin of flesh around all the suspected tumours. My ‘biopsies’ always, without exception, remove the entire cancerous lesion. Everything even vaguely suspicious comes off. This means I have some unnecessary scars, but never need follow-up surgery.
This is so normal to me I don’t even allocate time for the news. Today was no exception – I made plans to spend the day doing fun stuff with my daughter, with a brief stop to have the stitches taken out of my face.
It was quite surprising then to have the doctor usher me into an office, where he sat on the other side of a huge desk reading the histology report. The lab had found cancer, yes, but not the usual and expected variety. The doctor used some words I did not expect and do not like: malignant, rare, aggressive. He said this is a one in a million sort of tumour. He said “don’t worry.”
Then he said I would need “proper surgery” – immediately, not in the standard British 3-4 month wait list schedule. Within about three minutes the surgical suite was booked for next Wednesday, along with a plastic surgeon to put my face back together.
I walked out of the office into a bright, sunny, cursed day. My daughter was expecting lunch and we started to ramble through Marylebone. I explained, briefly, what the doctor said. I told her not to worry. I told myself not to worry.
I’m baffled, incredulous, and raging. But I’m not worried.
Observation: wandering around with a bandaged face is akin to having a superhero skill. I’m invisible! People look at me, and their eyes slide away. . .
Except, of course, the people who stare, point, and whisper.
I thought I was used to this sort of thing but I forgot, or refused to believe, what it always feels like. My default setting is to ignore whatever I cannot change and this would fall under that heading, but honestly, the whole thing is tedious.
I’ve been thinking I should write CANCER across the bandages. Just to, you know, clarify.
When the skin cancer specialist heard that the genetic test was negative, he laughed and said “The plot thickens!”
Then he examined my face, and ordered more biopsies.
One of the more alarming aspects of my skin cancer is the fact that the tumours are unusual. No general practitioner I’ve ever met could accurately diagnose a lesion, and very few dermatologists have been willing to treat me.
Looking at my own face, I couldn’t see what the doctor wanted to remove.
I could only see the scars.
But that is irrelevant, and the appointment was arranged.
What does a biopsy feel like? Nothing at all.
This is the routine: I lay flat on my back, head held still, eyes closed against the light. I listen to the sound of my flesh being gouged away and stitched back together.
Next, the doctor says some stuff I instantly forget. Then the nurses try to talk to me, offer tissue, a mirror, kindness.
But I always just want to escape, and inevitably have my feet on the floor before they’ve finished affixing bandages.
That is how it always works, and precisely what happened today.
The difference is: I walked outside, accepted a ride in my very own amazing car, stared out the window at a city I love. I went for a walk in my favourite neighbourhood, ate some good food, had some excellent coffee. I walked out of the clinic into the life I chose, the life I made.
For the rest of the day I avoided mirrors, joked with my family, ignored the bandages on my face.
Until the end of the evening, when it was necessary to change the dressings, and I saw the raw red jagged stitches crumpling my cheek.
Then I cried, but not because of the pain. Not because of the new scar, or any of the hundreds of scars marring my body. Not because I’m worried about the results; I already know what the lab will say. I have cancer.
Instead I cried for the little girl who never knew a single moment free of pain and uncertainty.
I cried for the little girl who never, ever cried – because she was so busy imagining a new life far away.
Today was the big day, the culmination of years of dithering and debate. I woke up early, grabbed a cup of coffee, muttered the standard protests, and proceeded to a prestigious and historic hospital widely perceived to be one of the best in the world.
The doctor performed a perfunctory examination, looking at my palms and knuckles, measuring my head, scribbling notes on paper. Then she folded her hands together, looked mournful, and intoned the results of a DNA test performed to confirm the genetic disorder I was diagnosed with in 1983:
I stared at the doctor. She stared at me. There was a long pause, then she said “This is quite a mystery.”
I raised my eyebrows, thinking, no fucking kidding mate.
The doctors in Cambridge were so exquisitely sure the result would be positive they refused to run the test. The doctors in London only agreed because I hassled them and because testing for symptoms routinely and in perpetuity seems a little, well, wasteful. Not to mention the fact that the tests themselves are harmful to healthy people.
“Of course,” the doctor continued, “you are still diagnosed. . . symptomatically.”
Yeah, well, whatever. This is, at best, sleight of hand. If DNA sequencing cannot confirm I have the mutation known to be the cause of the disorder, we actually know less now than we did last week.
Why? Because I only meet two criteria of the autosomal dominant genetic disorder they tested for. Critically, the diagnosis stamped in my chart does not explain a myriad of other symptoms. It might be the cause of my skin cancer, but it is not the cause of my primary cancer.
From the perspective of specialists in various fields, it is categorically impossible to have the specific type of cancer I was diagnosed with at age twelve, unless it can be attributed to radiation exposure – and that is something my childhood doctors insist did not happen. The only other viable explanation is a different autosomal dominant genetic disorder. And hey presto! I have three of the criteria for that one!
But if I’m diagnosed with a single autosomal dominant genetic disorder, the experts say I cannot have two, because it is “statistically improbable.”
And now the genetic tests say I do not have the genetic disorder I remain diagnosed with.
What are the odds of that?
One possible answer to the conundrum is that I have “something else that nobody has a name for yet.” That at least is more rational than “we don’t want to think about it.”
I am so tired of this I am barely able to sit through the appointments, but I go back, year after dreadful year.
Why? Because until we find a definitive narrative, I will be forever cursed not just with ambiguity but also with extensive, invasive, exploratory tests. Just in case.
The logical and appropriate choice would be for the doctors to order a test for the only other known disorder that can cause the primary cancer.
Like the kids say, DUH.
The doctors have steadfastly refused to run the second test because, you know, because. They have a hunch? Inkling, suspicion, belief?
I stared at the doctor. She stared at me.
She turned around and ordered the new test.