Open Writing

The nurses seem very lax about administering drugs on the surgical ward. They don't appear to have the same careful handing-over procedures we've always seen in oncology. I tell them, when they're admitting James, that he's prone to constipation when given anaesthetics and/or painkillers so is usually given preventatives. The nurse writes this down in my presence and assures me she will have a prescription written up. A week later, it appears she's done nothing and James is in a very bad way. They are forced to give him much stronger laxatives, at this point, resulting in terrible stomach cramps and a desperate and difficult rush for the toilet.

Once the epidural is removed, the doctor instructs that James be given painkillers regularly and morphine for any breakthrough pain. But he only receives the ordinary painkillers when we remind the nurses. Slowly, James seems to improve each day over the week, until Tuesday when he dips again. Despite that, the doctor lets him go home on Wednesday because James is so desperate and I suggest he might recover better there.

Getting ready for bed James notices that his right testicle is swollen. He thinks it must be cancer again and decides not to tell us so we can have a worry free night. The next morning, I can't untangle my feelings about this. I'm anxious about what else he might keep from us, yet overwhelmed by his bravery and thoughtfulness, coping with such a fear alone.

I rush him back to hospital, where we see three different doctors at various stages in their training. James is all for them cutting him open again, to make sure, and the doctors all look disconcertedly uncertain of what to do. When I suggest using ultrasound (drawing on my own experience with the breast lump) the doctor replies in relief, 'Oh, that's a good idea.' They decide the inflammation is epididymitus (whatever that is), not cancer, and send us home again with some antibiotics.

On Friday, we're back at the hospital for the results of the pathology report following the lymph node surgery. We wait hours, with my heart pounding, mouth dry and hands wet, in the children's oncology outpatients unit. The sickly sour smell of disease, medicine and bodily fluids makes the air thick and difficult to breathe. There is no comfort in the pink plastic-coated furniture, toys, bright picture-covered walls or children with haunted parents.

The atmosphere in the consulting room is sombre. The doctor's folded arms, the set of his eyebrows and even the lighting seem determined to
eliminate any possible spark of false hope. We're told that there had been some cancer where the diseased lymph node had been situated but the whole of the area has been removed and the borders appear clear.

Miraculously, the rest of the lymph nodes appear to be clear, as well. We're told to return in three weeks (then monthly after that) for a chest x-ray and check-up. Seemingly, if the cancer is in his blood, it will turn up in his lungs next.

The doctor suggests that James and I go down to the labs and look at some of James' cancer cells under the microscope. What we see is bizarre; cells of wildly different, irregular shape and size with huge variations in the contents of the nuclei. They are constantly mutating, with a variety of chromosomes (up to 70). The doctors have never seen anything like it. This phenomenon probably explains why some of the cells were destroyed and some weren't and why it's been so hard to treat. It's not unusual for cancers in teenagers to break the rules.

Early on, we promised James we would take him, and some of his friends, on a special holiday anywhere he wanted to go, when he was well enough. This was by way of giving him a dream, something to look forward to and focus on. The consultant knows about this and suggests we consider going on the trip sooner rather than later, implying there might not be a later. But James is adamant that he is now clear of the cancer. He is determined that we will go on the holiday in the summer, when he and his friends have finished their big exams and high school.

It is frightening to ignore the advice of a doctor and believe instead in the opinion of a sixteen-year-old. But this is James' body and it's his call. He is my son and I must stand by him.

My mom knew me like that, too. When I was ten and uncharacteristically terrified of going back to school at the end of the summer, she patiently winkled the story out of me. Living near the primary school, we local children used to play there on the swings and other equipment. One day the school caretaker asked us if we wanted to come into the building to play hide-and-seek. We thought this was a great idea and felt wildly naughty being in the school when no-one else was there. We ran in the polished corridors and even peeked in the boys' toilets.

My heart pounded with uncertainty when this faded, heavy-set man suggested a good hiding place. I didn't know how to say no to adults, especially one who had been kind to my friends and me. When the fireproof door sealed us in the thumping boiler room, he tried to force himself on me. In a terrified frenzy, I managed to wriggle out of his sweaty grasp and escape. I felt so frightened and ashamed. I couldn't bring myself to tell anyone what had happened until my Mom reassured me. As far as I know, the man had disappeared so I didn't have to go through any police or court experiences.