I'm forty years old and my medical care is still coordinated under the auspices of a children's hospital.
Sitting in the corridor waiting for my appointment in the cancer genetics clinic I wondered if I could just bolt, though I limited my actions to a refrain of "I don't want to be here." Repeated every two minutes.
My charming companion replied "I know."
Now that white coats are out of fashion it is harder to spot the doctors - geneticists do not wear stethoscopes, and an alarming number of medical professionals are now my age or even younger. But I have had plenty of practice. When a harassed fellow hoisting a backpack dashed down the hall toward the consulting rooms I sighed. "Look. This will be a training session - I'll have an observer of indeterminate qualifications introduced only by first name listening to the whole fandango."
"How can you tell?"
"He looks like one of your interns, right? That is my burden in life. I am interesting to interns."
"Not the cancer?"
"No. My curse is that I am. . . special."
This is largely true, and the appointment underscored the fact. After introducing the intern the senior consultant measured my head, looked at my palms and the soles of my feet, and took a detailed medical history. As expected, she was nonplussed by the lack of data; if I were truly British my entire history and that of my family would already be logged in a central registry. But instead my x-rays and histology reports are scattered across the world, buried in archives, out of reach. Bits of my body are preserved and displayed in medical museums but the records are simply not available.
When we reached the maternal side of the family tree she flinched - they all flinch no matter how skilled - at the death rate.
The conversation ranged across the mayhem of my life, the complexity of the diagnosis, the fact that there may (or may not) be a second dominant genetic disorder. So hard to say; the experts are at odds, mainly because the statistics say it doesn't happen. To which I shrug and say: how likely is my life at all?
This particular debate is neither interesting nor useful. Leading clinicians in five major teaching hospitals have been unable to explain what they see to their own satisfaction, so why should I care? It makes no difference to me what the doctors call the disease. I just want to know what symptoms to watch for, so I can stay alive as long as possible.
Since I was in a cancer clinic the doctor was more interested than usual in details about where I was born and raised; cancer doctors never dismiss environmental factors. I waved my hand and replied in a desultory fashion: yes, my mother lived and worked next to a facility where nuclear warheads are assembled. I grew up between a submarine base and a naval shipyard, both of which handle nuclear vessels. I can recite the facts about the ships from Bikini Atoll, and the Hanford controlled emissions, but none of the known contamination incidents happened near me or in my childhood. That does leave a question mark about what we don't know, but out of sight is out of mind, right?
The official story is that I was not exposed to any radiation either in the womb or infancy, and if the Department of Defense knows differently they aren't saying. Though one might have suspicions, a hunch is not quantifiable.
Regardless, the appointment was intended to hammer out some details. Everyone agrees that I need a definitive diagnosis, and I have now faithfully submitted my skin and bones to hundreds upon hundreds of appointments with specialists. I've been examined and measured by premiere clinical researchers at some of the best hospitals in the world.
Largely to no avail - unless you think being categorised as a "first generation mutation" is helpful.
Here are the facts: I have a primary autosomal dominant genetic disorder diagnosed symptomatically by the presence of hundreds of cancerous lesions. I have a second, "unrelated" primary cancer diagnosis. Nobody can agree on when the cancer emerged, what caused it, how to treat it, or what the associated risks might be. Each new doctor is exquisitely confident, but the advice on offer is inconsistent at best. And, a crucial point: previous DNA tests could not confirm the diagnosis. Though that doesn't much matter, because the symptoms lead the definition.
My general reaction is to hum and ignore. What would you do?
Fundamentally it has never been in my best interest to care. I already see the best doctors at the best hospitals, and if they can't answer the questions, there is honestly no point thinking about it. Pushing through the clutter of dispute and analysis, this is a fact: we all die, slow or fast, and while I might do so in an intriguing fashion I do not especially want to be on display.
I'm a tidy person leading a disorderly life, on an essential level. I have cancer, present tense, now and forever with no hope of remission. That cancer is caused by a rare genetic disorder that we name although the tests do not confirm the naming. I had another kind of cancer that went marauding through my body for no known reason whatsoever, against all sense and wisdom, vanquished by dangerous medical interventions that might eventually cause yet another kind of cancer to kill me.
If I could get back the tumours and skin taken away over the years, I would put them on a funeral pyre with all of the records and watch them burn. I want to start over, new and clean, with my scars - but without the confusion and drama.
That isn't an option so I sit on plastic chairs, staring at colourful murals and listening to babies cry. I want to cry too, for myself, for those babies, for my own children and any children they might have, for all of us, everywhere, damaged by our environment, ripped apart and sewed back together in the name of science and progress.
But I don't cry. I just recite the facts and listen to another doctor expressing forceful and divergent opinions. I'm told, again, that the tests are expensive - as though that matters. I know just as well as the person on the other side of the desk that the samples will be used in research returning value far above the £1,200 cost of the procedure.
Then I sign a consent form releasing all of my rights to my own DNA, in exchange for yet another test that will offer no illumination or solace.