Year: 2012

The experience of cancer, much like the experience of being a mother, involves large swaths of caretaking. Rendered, not received.

From the nurses holding my shoulder to the taxi driver who picks me up outside the clinic, the friend or family member who changes the dressing on the wounds, the person behind the counter as I buy a cup of coffee: whatever happens, whatever they say, it is my job to either conceal the truth or make them feel better about what they are looking at.

I’m not going to qualify this – it is neither defensible nor desirable, and I find the whole thing tedious. But it is demonstrably true that life is easier when I obfuscate and redirect. Other people are too sensitive, or confused, or ill-mannered, to deal with honest answers to the question “How are you today?”

I’m not allowed to say “Fine, if you like having your flesh scourged off by laser death rays.”

It just isn’t done.

Perhaps if my cancer were a recently acquired novelty I would feel differently; there is no way to test the hypothesis. But I’ve been doing this for twenty-nine years, during which I’ve been granted no slack or convalescence. Biopsies are routine, bad news is expected, and if I want to have any kind of life at all I just have to keep moving.

My cancer doesn’t scare me, and it shouldn’t scare you, but that does not mean that either of us have access to a shared vocabulary. You’ll just have to take my word for it – there is no easy or elegant way to discuss these matters, and when you can’t talk about something so central to your experience of everyday life, it distorts all social encounters.

When I left the clinic on the first day of photodynamic therapy I was under the impression that the procedure had been trivial, insignificant. Walking through Marylebone and chatting about lunch I couldn’t quite believe, and then did not want to acknowledge, my body reacting. But within about twenty minutes it was inescapable – because the treatment worked. My nerves, muscles, and blood knew something bad had happened even if my brain resisted. My body was not happy as it proceeded to demolish both the cancer cells and my equanimity.

I still would not have characterised the sensation as pain. Oh no; it felt like my skin was trying to crawl off my body.

Later at home I was sitting on the couch having a reasonable conversation with Byron when the true reaction set in – what is it in biological terms, a massive drop of adrenaline? I just sort of drifted sideways on the couch with my eyes closed, still listening but not especially competent.

My son wandered through the room and objected, because I am not allowed to nap. The children say that unscheduled rest makes me cranky. He said “Wake up, baby ninja mama!”

He was right (and very amusing). It might not be fair that I am expected to appear strong, fine, and capable all the time, even immediately after creepy experimental cancer therapy. But that is irrelevant. I am in fact scrappy, tenacious, a fighter. I don’t like sympathy or drippy emotions. If I require assistance I would prefer it delivered with scathing humour, thank you very much.

There is no practical alternative.

“On a scale of one to ten, ten being the worst pain you’ve ever experienced. . . .”

I let the doctor finish, then said “My pain threshold is calibrated on a different scale. This won’t hurt.”

He signalled to the nurses behind me, and they all put on safety goggles. He said “We have transplant patients who say this is the worst pain of their lives. They’re tough nuts, but they feel it.”

I shrugged, and strapped on my own pair of safety goggles. “Uh huh.”

The procedure started – an unseen machine behind me delivering a targeted blast to the cancerous lesions blooming across my back.

The nurses and doctor murmured amongst themselves about clinic schedules and supplies while I sat, calm and remote and cross-legged, contemplating the nature of pain.

Not because the mysterious treatment hurt: as predicted, I could not feel anything at all.

The nurse in charge of my left shoulder said “You are so flexible, so calm – do you meditate? Do yoga?”

“No,” I said. “I do skin cancer.”

I was three years old when the treatments started, and I’ve lost count of how many cancerous lesions have been removed. Or rather, I stopped counting after cancer biopsy number three hundred, because I was bored. It is possible (if not desirable) to get used to anything, and I am accustomed to having my flesh gouged off.

It is all routine: the speculative gaze of the doctors, the mournful conversations with nurses. The smell of antiseptic, the texture of the gowns, the crackle of white paper on the examination table – all familiar and expected.

This particular appointment was an innovation because it was the first time I’ve been offered photodynamic therapy, and the first time I have ever consented to experimental treatment.

Throughout the procedure I just sat there, fingers pressed lightly together, observing the sensations. The nurses asked “Does it hurt?”

I said “I wouldn’t characterise this as pain.”

This was the truth, though midway through the session my body had noticed the shock and my brain was shuddering with atavistic fear. The urge toward fight or flight is so difficult to resist, because it is primitive, essential, instinctual. I just kept breathing as the muscles in my neck seized with panic, and sweat broke out on my palms.

But it didn’t hurt, it couldn’t hurt, what could ever hurt me?

The doctor laughed and said “You are the toughest patient we’ve ever seen.”

Give me a ribbon, a medal, a commemorative statuette: my performance of stoic endurance is impeccable. Nobody in my immediate vicinity will see anything except acerbic cheer. Nobody will see me cry – I won’t cry until several weeks later, when I’m alone, and it won’t be because of the pain.

I will cry, eventually, because I don’t want to be sick. I’ve had my share, I don’t want any more. I hate the rituals, the attention, the dependency, the loss of both flesh and time. Pain is immaterial, ephemeral, but this is real: I can’t wear my regular clothes, for weeks on end. I can’t wash my hair. I am not allowed to walk in the sun.

Worst of all, I need to ask someone to help change the dressings on the wounds. This might sound minor, but to me it is enormous, unacceptable, shaming. But again, I don’t talk about it. I don’t acknowledge weakness. I just say thank you and keep breathing.

One week later I went back for my second session of PDT, and the doctor continued his commentary on my putative toughness. But this time, he alternated tough with tolerant – as though the words had the same meaning.

I sat cross-legged in the hospital gown on the crackling paper of the examination table and considered the point. There isn’t much that bothers me, but I would have described myself as oblivious. Though perhaps he is right – maybe my imperious disregard of obstacles and objections is connected to the experience of growing up with cancer. I don’t know, and honestly, I don’t care.

Toward the end the doctor asked in some amazement “Do you ever complain about anything?”

I said “No.”