When I booked the trip for my mother I arranged her departure time to coincide with Byron’s flight to Cyprus so he could escort her to the airport. They left this morning, and when I called to check on their progress Byron reported that he put them on the wrong train.

Lucky I left enough time in the schedule for these adventures.

The visit was lots of fun, though she arrived with a virus and spent most of her holiday sleeping. We all caught variations of the bug but managed to persevere and show Grandma a bit of England.

We walked around many of the colleges, attended Evensong, went punting, walked to Grantchester for tea at The Orchard, and visited the Fitzwilliam.

Just as we all felt well again it was time for half-term holiday for the children and we set off on a series of trips to London. We went to the Tower of London, and the British Museum, and the youngest and oldest to the Chitty Chitty Bang Bang musical (managing to snag the last two tickets for all of half-term).

We wandered through the Food Halls at Harrods, bought Lego at Hamleys, walked down the  Portobello Road and found a little shop called where the children ordered kitty and hedgehog hats. The nice woman at the counter said that her mother is going on the British Antarctic Survey trip in a few weeks; we meet an extraordinary number of people connected with that organization.

While we were away in Ely visiting the Cathedral the wind came in off the Fens and blew my boat off her mooring. Luckily another boater caught the line and tied her down, and later had her boyfriend find me via the internet to explain what happened. We met near the boat later and had a lovely time talking to both of them.

Now it’s time to work again. I need to get my stuff organized for the book tour, set up places to stay, figure out how to acquire the champagne for the party, and do sundry promotional work.

Not to mention the fact that I have exactly five days to finish writing the next book – and it is still missing three chapters.

Since my mother was here to hang out with the children (and they often have more fun without me to censor their activities) I went to Zurich for the weekend to hang out with Byron.

He was there on one of his work junkets. His normal schedule during these trips (and at home) involves writing papers all day, taking a dinner break, going back to work until four in the morning, crashing, then going back to work at seven.

I do not understand the concept of leisure travel, though I do make a diligent effort to engage in the designated activities. I wandered around the city, found the Lindenhof, had hot chocolate at an enchanted cafe, visited the church where Felix and Regula are buried, stared at the statue of Charlemagne.

I picked up some enlightening facts about the Zwingli aspect of the Reformation, and the fact that Swiss catholicism is a splinter that does not recognize the doctrine of infallibility. I was sickened by some incredibly sinister facts about the Swiss eugenics program. I remembered too late that one of the contributors to the new anthology lives in Zurich, and wished I had arranged to meet her.

But inevitably I spent most of my time in medical museums, doing research, taking notes.

My favorite part of the whole trip was the public transportation: the funicular system is gorgeous, the trams are punctual and pleasant, and the ferry around the lake reminded me of home.

Eight years ago I was languishing in the hospital bed that had been my home for over a month. I had argued successfully against a planned surgery, but this meant that we were all waiting for the crisis. That morning it finally happened; the baby flipped and I started to bleed. I asked to wait, asked for tests, and a quick evaluation showed that my infant was in fact not ready to be taken. But the risk was too severe, and I was too ill, and the baby was drowning in the blood.

They cut me fast, without surgical dressings to capture the blood, without appropriate anesthesia, slicing upward toward my belly button to save him.

It took an entire year for him to catch up and become the strapping fellow that he should have been at birth. It took another four years for the exquisite sensitivity of his premature arrival to fade.

Now he is eight. He stands as tall as my shoulder. He speaks in full vivid paragraphs. He rides his bicycle, reads books, creates fabulous structures with Lego, spends hours each day drawing in his journals. He is one of the most eccentric and interesting people I have had the privilege to know.

We celebrated the day with sushi for lunch and salmon for dinner. He opened a vast array of presents from family members far away and the visiting grandmother.

I gave him a proper bowler hat because he is obsessed with P. G. Wodehouse. He ran off to his closet to find a suit to wear. We all sat at the table laughing and eating chocolate cake and ice cream.

My mother arrived today. After a brief greeting at Heathrow she squinted at my face and asked about the scar. I told her the story as we rode the tube to Kings Cross and she blinked and said that it is better than losing half your nose to cancer. 

This is a good point; I would not enjoy a nose amputation.

If you ever wondered exactly where I get my skewed sensibilities, now you know. She is such a tonic. The whole world makes sense when she is around to sort the important from the nonsensical.

Tomorrow I get the stitches out, which means that the wound is healed well enough to venture forth without bandages. The trouble is, I don’t want to look at it. When I glance in the mirror I see not only my adult self but also the little kid with bleeding sores; the twelve year old with a lacerated neck; the seventeen year old with a smashed face.

When I look in the mirror I would like to put my fist through the image reflected back at me. But that is a childish impulse and not worth dwelling on. Instead I will revert to practical matters, like finishing the next book before I go on tour in a few weeks.

I am not yet willing to reveal the title but the cover (courtesy of Gabriel) is simply beautiful.

There are still two missing chapters and one long section needs to be spliced and moved around a bit. This is the hard part of the work – the details, the adjustments, the tedious editing tasks that can lead to doubt and despair if one is not careful to block out such thoughts.

I keep ranting that I either must go work on the book now or that I never want to work on the book again and my family members just nod with glazed expressions.

I’m sure they wish that I could go out and rubberneck with my pals. But I haven’t lived here long enough to find those people. My only local writer friend is away on a book tour right now and thus unavailable to trade tormented tales.

I really do look like I was on the losing end of a knife fight.

Luckily I have friends who point out that it makes me appear that much tougher (as though I needed to).

It is hard to smile because the stitches follow my laugh line but I am endlessly thankful to have Byron, AEM, and Gabriel around to find the humor in what is fundamentally a grim situation.

I generally make a fierce effort to pretend that I am well. But right now half of my face is swollen and a preliminary check of the wound indicates that the scar is much larger than anticipated. The vestigial reaction to trauma is impossible to control; my whole body started to shake when I took off the dressing to investigate. I am not at all pleased to be flung backwards to the visceral experience of mutilation.

I went out to buy vitamins and homeopathic remedies and turned my thoughts resolutely away from the scar. This is what I will do instead: work.

The final proof of the Mamaphonic manuscript showed up last night and I will do the last proofread today.

A few weeks ago I turned in the first half of the next book and the publisher was happy with the structure I used to pull the stories together. There was talk about a book tour in the spring. Now I need to sit down and finish the second half.

Surgery is helpful insofar as I have brief access to memories otherwise not available; Byron laughed and said that I should finish quickly because this investigative journalism approach is no fun at all.

I sat in the churchyard of Little St. Marys on a golden day, staring at the profusion of wildflowers and bracken, the assorted jumble of gravestones moved to make a path. If I could have had a wish I would have wished myself well. But there is nothing so frivolous available and when the clock chimed two I had to walk back toward the city to catch a bus.

The driver argued with me, said that I should move back and catch a shorter route. But I wanted to be on the winding lost bus to nowhere. I was in no particular hurry and sat looking at the city through the window.

Waiting in the reception area at the hospital I could hear a small child screaming. The other patients sat dully around me, reading or talking to companions. The baby wailed — not in fear, oh no, much worse — the cry of someone who knows exactly what is happening and rages against the reality.

Hours passed and I sat, trying to read a book, listening to the baby howling, remembering my own lost childhood conducted in hospitals. Finally I was called back, the junior doctor stumbling over my silly name. She explained the procedure once again and asked if I had any questions before signing the consent form. What could I ask? It would surely be a metaphysical plea rather than a practical query. I shrugged.

I folded my glasses and set them on a chair next to my coat and book, hopped up on the operating table and settled under the blazing lights. I closed my eyes. Surgical drapes were placed across my body and clipped around my head.

The doctor swabbed the left side of my face with a cold solution that rolled down into my hair. She took a pen and drew a line across the critical area. She called out to check that the correct scalpels and sundry surgical tools were all at the ready. The doctor said the injection would be the worst part as she thrust the needle in. The nurse reached for my hand, offered me comfort, but I waved her off and mouthed that I was okay. I am okay. I am always okay.

I could hear the flesh being cut away, could smell the instruments cauterizing my flesh. The people in the operating suite gossiped about work and the weather; the sunshine had given way to a torrential rain storm. Occasionally someone informed me of their progress.

I started to wonder if the procedure was strictly necessary, wished fiercely that I had stayed on at Little St. Marys instead of catching the bus. The muscles of my back and neck seized and I realized that my jaw was so tense I might crack a tooth. I consciously moved to stop the process of panic, started to relax all the muscles and bones ready to jump off the table, and the doctor paused to ask if I was okay. Yes. Yes, I am okay.

Memories surged through my mind. The smell of the gloves, the tingle of the anesthesia, the blinding light. The pressure against my face as a doctor pressed in, digging away to remove yet another tumor. I slipped into a familiar meditative calm, perfectly relaxed, breathing lightly, as the doctor pressed against my face, smashing the nose slightly to the right as she sliced away at my skin.

I have been diagnosed. I have been treated. I have had over three hundred cancerous lesions removed from the exterior of my body, not to mention the diseased interior. But I still do not believe that this can be true; it is so improbable, so inconvenient, so odd.

Wouldn’t it be better to be whole, to be well?

The doctor started to sew me back together, threads trailing across my face. She tugged to make a knot and my cheek and upper lip lifted away from my skull with the force. I held my head still, observing the movement, feeling the twitch.

Finally it was done and I could sit up. The doctors skittered off to attend other patients and the kind nurse told me that I would need the stitches removed in five days. She suggested that I take a pain medication I have never heard of, recounted the essential rules about treating wounds. I was dizzy from shock and the pressure on my face but I nodded, tried to look intelligent. I refused the drugs, thanked her, and wandered out of the room.

The clinic was already closed so I could not schedule my follow-up appointments. I walked down the erratically constructed hallways to the toilet and looked in the mirror. A massive bandage conceals what will be my newest scar. I’ve not been bandaged so extensively in over twenty years, and realized with a jolt that they had not asked me about any allergies. Because, you see, I am allergic to surgical dressings.

I pulled on my cap and walked out to the bus stop with my head down. I remembered with a sense of wonder exactly why my hair is so long; I grew it out to cover the scar after my eyelid was slashed open in 1988.

I looked down at my clothes and shoes, all chosen for similar pragmatic reasons. To cover scars. To relieve pressure on wounds. To cosset broken bones. To prevent the sun from shining on my skin. Always, always in service to the disease.

Other memories drifted through my mind. Whenever possible I forget, but the fresh cut reminded me of an adolescence constrained by surgical procedures. I was not allowed to bathe after surgeries and my mother washed my hair in the sink for years, carefully folding towels across my neck to protect the incisions.

The sun came out again as I stood at the bus stop with my bandaged face turned away from fellow passengers. In my adult life in the states I would never have considered using public transportation after surgery, but now I have no car.

The night before I had reasoned that I rode the school bus throughout the most intense parts of the disease years, but standing at the bus stop I realized this was a fiction. I stopped riding the school bus in the eighth grade when the other kids started throwing rocks at me after school, and once attempted to set my hair on fire on the long ride home. Not that there was much for kindling; that was the year half of my hair fell out.

On the bus I wanted to hunch over and let my hair swing across my face like a curtain but sat straight up. There is no point in acting like a victim.

When I was young and frail I had to learn to stand up and keep moving; it was a survival strategy. I wasn’t strong enough to fight but I learned how to create an illusion of lethal intent. Because people do stare, and they do comment, and some people exploit weakness when they see it.

I have cancer. This is my permanent state. I do not choose to meet the gaze of the people who stare and I do not accept that anyone has the right to look at me. But I will in fact go wherever I like.

In her wisdom my mother always insisted that I live as normally as possible, that I move right back to regular activities as soon as I was strong enough to go. This was the best thing she ever taught me, and I thank her for giving me the strength and knowledge to walk out of surgery and go to the grocery store to purchase ingredients for dinner.

To walk through my newly adopted city and look at the church spires, the college buildings, the brick walls, the sunshine on one side and dark storm clouds on the other.

I unlocked my bicycle and pedaled home to my boat.

Sarah-Jane has been wandering around Europe with Amanda (who performed at the Edinburgh Fringe Festival this year, wish I had known in time to go see her!) and she dropped in to see us. The visit was far too brief; we all love SJ. The children are hard to impress, but having a circus clown in the house is definitely a thrill.

We talked about the break-up of the band (very sad) and family secrets (very funny) and walked around town in the rain. We went to Kettle’s Yard and drifted down winding streets and along the Backs, meandering along looking at the city and its inhabitants.

At one point SJ turned to me and asked Are there any freaks here… at all?

I shrugged and replied Not that I’ve noticed. Or at least none with the customary cultural markers.

After she departed for Paris I went to another appointment, this one in the helpfully titled Lesion Clinic. It is now factually true that I have spent more time at Addenbrookes than I have visiting with friends.

The appointment was once again predictable, with the small and surprising twist that in the UK they call my disease after the doctor who published the first research paper on the subject. This is not accepted protocol stateside, because that doctor made a point of refusing the dubious honor.

The other and more interesting difference is that the British appear to be a modest people; my body was completely covered and the gowns and blankets were peeled back in sections as the exam progressed.

The doctor didn’t make a big fuss over the fact that my case presents a challenge. Unfortunately she was thorough enough that she actually found a suspicious lesion.

I sighed and nodded as the nurse filled out the paperwork to schedule my first British biopsy. Which will require stitches; this means that the tumor is much larger than anything I’ve had taken off in the last few years. Apparently there is a four month wait for this procedure, even (as in my case) it is certain that the lesion is cancerous.

But I am such a special and lucky creature I get to go back on Tuesday.

Evidently these procedures frighten the general population, because I was loaded up with instructions and tip sheets and it was suggested that I might need a companion with me during the operation. I just blinked and tucked the papers in my bag.

I used to have a dozen or more tumors removed in morning sessions and go back to school the same day. Losing one small piece of skin and taking myself home does not compare.

Though I will not enjoy riding the bus with a bandaged face.

Last weekend I realized it was time to fill up the boat since it is best to have a full tank of diesel before winter commences. The only trouble is that the nearest fueling depot is three or four hours away on the River Great Ouse.

This journey would consequently be a serious endeavor, involving opening two locks. Which I did not know how to do. So off to a bookstore, where I purchased guides that served mainly to frighten me, and then early Sunday loaded the boat with children and snacks and set off.

Civilization drops off at the edge of Cambridge. It takes just a few minutes to go from crowded busy streets to deep country, with only the occasional herd of cattle gazing at us as we passed. You can go miles on the river without seeing any people, or even glimpsing a modern road in the far distance.

We passed a few pubs and country houses and found ourselves at the Baits Bite Lock. I jumped off and held the rope while Byron checked that our key worked the box. It did, so the next question became, where were the bollards?

We tied the boat down and took our guidebook over to stand next to the (abandoned) keepers house and ponder the question. I was reading the chapter on how to operate locks when a man hailed us from the other side. He wondered if we had a key?

We replied that we had a key but that it was our first time trying to go through. The stranger quickly walked across the footbridge and came down, patted my arm, and then started to rapidly explain all that we needed to know about getting through a guillotine lock.

I scrambled on to the boat and pushed off, Byron drove us into the lock, and the nice man shut the gates behind us, then opened the next set. He and Byron stood above talking and laughing while the children and I stood in the boat watching nervously as the water level dropped, taking the boat down seven or eight feet. Byron jumped down and we motored away, waving and shouting our thanks.

The next lock was much the same, though we were in a queue and chatted with a new set of interesting strangers. Then we were off again in a vast flat wild landscape, with herons and all sorts of fabulous birds swooping and swimming around us. We waved at other boats when they passed, and eventually found a small private marina next to the Five Miles From Anywhere No Hurry pub (most famously the home of the Upware Republic) that the guide claimed would have diesel.

But alas, there was neither an attendant on duty nor any diesel pump to be seen, and the local residents regarded us with suspicion. In the process of turning the boat round we seemed to pick up a snaggle of weeds. Byron did the short term fix of putting the boat in forward and reverse rapidly, but from that point our progress was much more slow. The wind also picked up at that point, making it impossible to know if we had mechanical troubles.

Onward, and wondering if we would make it to the next possible source of fuel before closing (because everything closes early on Sunday) we were dazzled by a brilliantly sunny afternoon. The children settled in the cabin and I wandered around doing necessary tasks. Byron was stuck with the job of steering because at six foot six he is simply too tall to hang out inside the boat.

Eventually we drew up next to the Fish and Duck at Popes Corner. This pub has been serving river trade for nearly eight hundred years, standing sentinel at the junction of three rivers. We had just moored when we turned around and noticed with great surprise the people who sold us the boat.

The coincidence that they would drive out to an isolated riverside pub and arrive precisely at the same time we moored was felicitous if not a true miracle. We talked for a bit and after everyone enjoyed refreshments they kindly agreed to teach us how to pull the boat around for fuel. It was quite a tricky maneuver, and it is highly unlikely that we could have done it without assistance.

By the time we finished filling the tank it was nearly four in the afternoon. The entire day had been consumed by our quest for fuel, and we realized that it would be impossible to make it back to Cambridge before dark. We decided it would make more sense to continue on to Ely.

It was a short journey to this Fens city, once an island but now part of the undulating farmland. We moored near the train station and walked to the nearest pub, which offered tasty treats for the whole family and tables above the water. We were mystified by the seemingly derelict ducks that ambled about under the tables and along next to the boats.

After the food we walked up through the park to the Cathedral and the children gasped at the sunset turning the sky pink behind the enormity of the building.

My throat hurts. I am not happy about it.

When I was twelve years old a surgeon sliced open my throat, pinned extraneous things to one side, and then gouged out as much of the cancer as possible without nicking other organs. That day, the massive tumor was deemed not just malignant but also terminal… so it was more important to be vigilant than careful.

As a result, my recurrent and superior laryngeal nerves are permanently damaged. This is why I sound like a demented child and have no projection. This is why I lose my voice during book tours, or whenever I catch a cold. Or at least someone told me that once. I tend to think that it is some kind of dreadful curse.

Byron helpfully suggested that I might have caught the hospital superbug during my recent appointment. I have in the past caught various strains of strep, staph, and a vicious case of hepatitis whilst in hospital.

But since I didn’t touch anything and watched carefully to make sure the doctor put on new gloves before digging around in my mouth, it seems unlikely that I have anything worse than a common cold.

My Seattle doctors were worried that I might not be able to get good medical attention in a nationalized health system.

I knew better, because I know exactly how extraordinary my body is. The GP nominally in charge of me did not even want to hear the details; he just put his head down and started scribbling referrals to send me off to specialists.

Today was my first appointment and it went exactly as I predicted. I was x-rayed and then had a long conversation with a physician who kept shaking his head at each major diagnosis. He wanted a comprehensive history but I shrugged.

I’m not even really sure how many surgeries I’ve had. I can only offer the bare outline of what has happened, and rarely care to bother with even that much information.

This particular appointment was in the oral surgery clinic and it is always interesting to see inside my damaged mouth. The tumors are easy enough to diagnose when they appear in the mandible, and I knew from a casual glance that the x-ray was clean. The physical exam was brief.

I can’t open my mouth wide enough to eat an apple but the degree of mobility I have is considered Excellent! Very good! by surgeons who know that it could be much worse. Several invasive surgeries inside the bone, a dislocation (or two) of the joint, and a fractured cheekbone should have left me in a sorry state.

But I’m okay. I just don’t eat apples.

Unfortunately going to the doctor leaves me in a black and seething mood. If the news is bad I feel nothing at all. But when the news is good I am calm and precise until I leave the clinic. Then I start to rage, silently, over the appalling injustice of living with this illness an entire lifetime.

But I’ll forget soon enough. I’ve never been healthy so there is nothing to feel nostalgic about.

I think that I’ll go work on my boat now.