Some days I am the Clint Eastwood of melanoma. A vigilante. A warrior in a class of my own. Fourteen years on, I've got it beat. Some days.
Other days … When a holiday is cut short because of a sudden lump in my neck. Sliding into that doughnut, for a PET scan, still, every year. Scrutinising the baby face of the radiographer for telltale signs of confusion, terror, pity. Biting back the barb when the well-meaning phlebotomist reassures me the pinprick in my arm will not hurt. For chrissakes. But most days I am just grateful. I am well beyond the survival statistics for a metastasised melanoma, I know this. I have been very lucky.
The mole was on the left side of my face. It was black, then translucent. It began to lose definition, then grew. It never bled, it never itched. When Nick Breach, of the Royal Marsden, took it out, it was a 3mm tumour. I had the most radical treatment – a total lymph node dissection. I could have come out looking like the elephant man. But Nick is a master. In a certain light you'd hardly notice. Surgeons always comment on what a great job he did. All the nodes were clear.
It came back five years later, December 2000, in a lymph node in the neck. After surgery, I knew the score. There is no treatment for advanced melanoma except what the medics call watch and wait. You wait in the hope the melanoma will, spontaneously, arrest itself.
I found John Kirkwood's high-dose interferon protocol for melanoma on the internet. The published results of his third trial showed some efficacy for people in my stage of the cancer. I know now he is one of the pre-eminent scientists in this field. Back then, to me, he was a chance. I rang him at the University of Pittsburgh and he answered his own phone. It was this that made me get on the plane.
It took a year out of my life as he told me it would. With no guarantees, it is by no means a cure. Its toxicity is renowned. Oncologist Martin Gore at the Royal Marsden told me the treatment would kill me quicker than the cancer. It was not obvious that a medic in the UK would administer it. Years later when I asked my consultant oncologist Peter Harper why he agreed he said I was so determined he didn't believe he had the right to refuse.
We all got through that year. Peter, the nurses, my family, me. Thirty-five-million units intravenously every day for a month – takes roughly five hours a day. Then for 11 months, every other day, 17m units of self-administered injections. Confined to bed. Hair loss, weight loss, the usual. Plus two weeks on suicide watch in a psychiatric ward after a drug-induced psychotic episode. Nine years on, I don't have to ask was it worth it. I am lucky. Some medics tell me I survived in spite of the interferon and not because of it. I will never know.
I know about melanoma. I've learned a lot. I know the catalyst for me was almost certainly sunbed use in my early 20s. (I joined a spa, where the sunbed was free. In the summer I'd go twice a month, for half an hour.) I know it is the fastest growing cancer worldwide. Fastest of all in young women aged 18-25. I know survival rates have improved not at all in nine years. I know too many people who have died because medics are not sufficiently vigilant about moles. I know when I see kids stretched out on a beach that my heart aches. I haven't learned how to stop that.
