I was admitted to Auckland Hospital for brain surgery on Sunday 16th January 2005.
My feelings about going to hospital for brain surgery were generally positive. In Japan, back in 2004, inconclusive investigations into my problem had ground on for months. By contrast, here in New Zealand, things were moving very fast, to the point where I felt as if I was on a magic carpet, and I wanted the momentum to continue.
And here a question arises: given that my health collapsed so soon after my arrival in New Zealand, how was it that I had kept on keeping on for so many months in Japan?
"We've been talking about that," said my father. "Behind your back, of course, and we figured out that while you were in Japan you were running on sheer willpower. And then when you got here the stress just switched off and so you collapsed."
That sounded very reasonable, a kind of upscale version of the "I'm going on holiday so now I've got time to have the flu" syndrome.
Shortly after 1 p.m. on January 16th 2005, a Sunday, I was admitted to Auckland Hospital. My father drove me to the hospital. My wife, who was due to fly back to Japan on the following day, came along for the trip. My father accompanied us inside so I did not have to find my own way. That was just as well as, initially, I was completely bewildered by the layout of the hospital complex, and remained so for some time.
A degree of mental incapacity may have contributed to this confusion but it must be said that Auckland Hospital, although it is for the most part very new and very shiny, is not exactly a model of lucid design. In fact, it is the most confusing campus I have ever set foot on in my life, and my seven years spent teaching in Japan had seen me visit any number of factories, office complexes, research centers and the like.
On arriving at the hospital my father, my wife and I went to a reception desk where the staff paged my brother-in-law, Alan, who was at work in the hospital as duty manager, the duty manager being the person who sorts out any immediate problems that crop up out of the blue (and a big hospital can generate quite a few of them, anything from an unexpected staff shortage to a failure of part of the hospital's sewage system). A job that would drive me crazy: I like a predicted and convenient environment.
It was very nice to be met by someone on arrival at the hospital. Throughout the experience of grappling with a big medical problem I was continuously supported by my family. What would have happened if things had turned really bad while I was in Japan doesn't, as my father said, "bear thinking about".
Alan escorted me to my room which, to my surprise, was very big, complete with an ensuite shower and toilet. My own room. My private room. I was very pleased. I had expected to be in a ward with other people, and, although I have quite a bit of experience when it comes to sharing sleeping accommodation with other people (in army barracks, for example, or in the dormitories of ramshackle little hotels in Nepal's Everest area) I really do like my privacy.
"Did you arrange this?" I asked Alan.
"It was arranged," he said, cheerfully.
And apologized for not having been able to arrange for a room on the other side of the hospital, which had views across the city to the harbor and the sea. My room had views of a very large lightwell, a roofed atrium which descended to a concrete courtyard.
I didn't bring much with me to hospital but one thing I did bring was a photograph. It was a present my wife had given me: a photo of me, her and our baby dining at my sister's place, wine on the table, everyone very happy. In the photo, baby Cornucopia is waving a spoon and is looking very stalwart and confident. I put the photo on my bedside locker.
I've never had one of those "my family" photos on display before, but it humanizes the room. It was nice to have the photo in my room at a challenging time.
My wife actually stayed with me until 2 p.m., at which point she departed with my father. As indicated above, she was scheduled to fly back to Japan with our baby the very next day; she was heading back to Japan to take on the challenge of getting daycare starting in April 2005.
Although my own situation, my medical situation, was challenging I felt very confident. The sheer speed at which treatment was being delivered had helped boost my confidence. Additionally, my spirits had been raised by the results of using the dexamethasone which the oncology team had prescribed for me. The dexamethasone had reversed the symptoms of paralysis so I could once again walk okay. The speed with which the symptoms had been reversed had impressed me and had given me confidence that these guys knew what they were doing.
In my diary I wrote "I am confident that I will survive the operation, that the cancer will be driven into remission and that I will return to Japan to pick up the threads of my life."
I liked the fact that the room was private because that meant that, in between interruptions, I was free to think and to write.
In my innocence, I thought the private room was some kind of privilege, but later, by listening to what was said by the people around me, I learnt that I was being segregated from other patients as a quarantine measure.
"You've been in hospital in Japan, haven't you?" said one nurse.
I don't know if someone at Auckland Hospital thought that I had been admitted to a Japanese hospital, but I had certainly wandered around one. And, in a Japanese hospital, had met doctors, nurses and patients, had been slid into a CAT scan machine and so forth.
Apparently the fear was that while in Japan I might have been contaminated by an unkillable superbug, methicillin-resistant staphylococcus aureus.
The reason why superbugs develop in Japan is that Japanese doctors catastrophically overprescribe high-powered antibiotics. The driver for this behavior is that a Japanese doctor gets paid money for each occasion on which a drug is prescribed. Prescribe ten drugs and you get ten payments.
One of the things that happened in hospital, not on the Sunday but early on Monday morning, was that a nurse showed up with some cotton swabs, which I recall as being like balls of cotton wool on the end of little sticks. Her task was to swab my nose and crotch. This procedure was "a protocol" explained simply as being because "you've come from Japan".
I later found out (not from that nurse, but from someone else) that these swabs were to test for MRSA. As nobody from the hospital lab ever got back to me, I assume the swabs tested negative.
I generally close the door if I'm in a room but one nurse asked if I could leave the door open. I didn't ask why, but maybe it was so she didn't have to touch it so often.
Before I found out that I'd been quarantined as a potential MRSA risk, I noticed that nurses were putting on latex gloves to perform routine tasks in my room, such as raising the bed. These were not sterile surgical gloves but simply latex gloves which could be slipped on to keep the hands clean while performing tasks which did not require sterile technique, such as turning on a light switch. This use of protective gloves did strike me as odd, but it didn't make me try to puzzle out the reason why they were doing it. I just accepted it as routine hospital practice, which in fact it wasn't. I was the quarantined man but, at first, I was oblivious to the fact, despite the various clues.
My Sunday was quite a busy day, with a number of people dropping by to give me briefings. Additionally, a nurse came round a couple of times to take some basic measurements, including my blood pressure and my oxygen saturation, which turned out to be 99.9 percent.
I'd never before seen a gadget for measuring oxygen saturation. This thing was like a big blunt-billed clothes peg (or, in American English, a "clothespin") with a wire running out of the back. A nurse clipped this gadget onto a finger and the blood's oxygen saturation came up on a screen. This procedure was totally painless. How it worked I have no idea as nothing pierced the skin.
I had imagined that the role of patient would involve me lying passively in bed for hours on end. During chemotherapy, that was pretty much how it was, but that first Sunday was more intellectually demanding.
Everyone who visited was friendly. On being admitted to the neurology department, my first impression was that Auckland Hospital was a very friendly place, and that impression endured right throughout my treatment. In particular, in the hematology department, where I finally ended up having my chemotherapy, people generally did a good job of being friendly even at four o'clock in the morning.
I had been under the impression that on the Monday morning I would go straight from the neurosurgical ward to the operating theater, but it turned out that first I would be going downstairs for another MRI, this one to gather data for a "stealth biopsy" to probe the lymphoma growth, which apparently was a thing about the size of a kidney bean located in the front right part of my brain.
Up until then, I had imagined that my disease was a disease of the fluids, since I knew that lymphoma means a cancer of the lymph, and since I had seen lymph defined as "a clear fluid". I had not known that lymphoma results in the formation of tumors, but it seemed that there was in fact a tumor in my brain, and the tumor was what was going to be biopsied.
A guy who identified himself as a houseman (a doctor pretty low in the hospital hierarchy) came round and did some basic neurological tests. It was the houseman, I think, who explained to me that my operation might end up getting rescheduled. If someone got smashed up in a car accident, for example, and suddenly needed urgent brain surgery, then I might have to wait another day. I had no problem with that possibility, but apparently, when this kind of thing happens, as it inevitably must from time to time, some people get very upset.
I asked the houseman what time dinner was. After 5 p.m., apparently.
"So do I have to go and hunt up dinner?" I asked.
This question seemed very reasonable to me, but the houseman was both surprised and amused by it.
"No," he said. "This is a hospital. We bring things to you."
The idea of lying back in bed and having people bring things to me seemed pretty lazy, but I figured I would be able to make the necessary mental adjustments. And, yes, in the course of my various admissions to hospital, lying back in bed and letting other people bring things to me was something that I got pretty good at.
The houseman talked to me about the operation. The operation involved a small risk of death and a more significant risk of a stroke.
"Because it's brain surgery. That's the nature of what we do."
The risk of a stroke was five percent, a figure which sobered me considerably. With a five percent risk, we're no longer talking about something comfortably improbable, like the risk of being struck by lightening while enjoying the view from the hospital window (white paint on concrete) or the risk of being devoured by a hammerhead shark while taking a shower. Five percent is getting serious.
In addition to the slight but real risk of death and the five percent risk of having a stroke, there was an additional risk, which was stated to be one percent. This was the risk that the pathologists would be unable to analyze the sample which the biopsy produced. If that happened, then I would have to come back to hospital and go through the entire brain operation one more time.
Of all the risks, it was the one percent risk that I ended up thinking about repeatedly. Once was okay but I certainly didn't want to have to go through this again!
A member of the surgical team, a guy called Patrick Swasey, came along and asked me "how this lymphoma theory" had evolved.
That was a rather startling question. Theory? What theory? We weren't in the realms of theory, were we? We were in the realms of fact.
Up until that moment, I had been under the impression that the doctors were one hundred percent sure that what I had was lymphoma. But apparently things were not so simple. Anyway, I gave a compressed version of the evolution of the "theory".
Loss of weight accompanied by blurred vision in the right eye, raising the suspicion of lymphoma. The eye problem becomes bilateral. The eye problem is treated with steroids, diminishes and then returns in full force, as tends to be the case when lymphoma is the culprit. Then, partial paralysis of the left side sets in. GP's neuro check. Neurologist's check. An analysis of an MRI says "lymphoma" and the analysis of cells extracted from the spine by lumbar puncture seems to confirm that diagnosis.
At some point I asked one of my medical visitors what else this problem could possibly be if it wasn't lymphoma. In response, I was told that there was a "long list" of candidate culprits.
Having said that, the medical visitor hesitated, as if wondering whether to plunge in and explain the whole list, but I indicated that I was happy to live without an explanation of the list. I'd spent a lot of time on the Internet looking at various long lists without getting much wiser, and I'd come to the conclusion that there are times when it's smart to limit your appetite for data.
For the operation on Monday there would be two anesthetists. One of them, a woman by the name of Janice Wright, dropped by and, amongst other things, had a look at my teeth. I mentioned that I had a temporary filling in my lower jaw, on the left, at the back. She said that would be no problem. She talked to me about the operation. I had a question.
"Will I be catheterized tomorrow?"
"Yes. It's standard procedure."
The catheter would not be put in while I was conscious. It would be put in after I went under the anesthetic, and I would wake up with the catheter in.
I did not like that idea at all.
During the years in which I had been an army medic, on occasion I had been in hospitals as an observer. I had seen urinary catheters being inserted and, for some reason, they really made my flesh crawl. Still, I did not protest. I didn't see that I had any option. I was doomed to be catheterized.
During the operation I would be given intravenous morphine while under a general anesthetic. Pain relief after the operation would be (if memory serves) Panadeine (a mixture of paracetamol and codeine phosphate). If I asked for extra pain relief then I would be given morphine.
Had I ever had a general anesthetic before? No. Monday's general anesthetic was going to be my first. I was told that people's reactions to general anesthetics vary, and that I might quite possibly be confused and disoriented when I came round after the operation.
Eventually, late on Sunday afternoon, my first hospital meal turned up, and my judgment on the meal was favorable. It was a plate with two puddles of color on it, one brown and one green. The brown was something made with meat. The green was asparagus. The quantity was sufficient, and it was reasonably well cooked. That was my last meal before the operation.
On that Sunday in the neurology ward, between interruptions, I spent a certain amount of time writing in my diary, as the following entry shows. The background to this entry is that one thing I'd recently learnt is that lymphoma of the brain can cause a certain rigidity in thought patterns. This is logical enough -- brain cancer can mess up the brain -- but subjectively I always felt normal. Jack the Ripper and Frankenstein probably felt normal, too.
As the diary entry indicates, one of the things I'd begun to think about was the future: going back to Japan. Between interruptions, there was time to think. And, given that I had decided I was not going to die, the future was a natural thing to think about.
* * *
2005 January 16 Sunday.
Looking recently at my schedule diary for 2004, I was amazed at the demented ever-busy lifestyle it showed.
For me, 2004 was the most stressful year of my life, the year in which I had to be teacher, writer, webmaster, husband, father and breadwinner, the year in which I could not, must not fail. The year in which I had to be invincible, all-mastering, immortal.
In the last desperate months of that year I thought to myself, "Wow, I'm really mastering the art of organization!"
But, in retrospect, the "push it to the red line and then a little further" organization of my days was, really, a kind of insanity. I don't know if this insanity has a formal name, so let's call it "lymphoma rigidity".
Somewhere along the line I stopped listening to music. I don't know if this is a symptom of a problem but I suspect that starting to listen to music again might be a symptom of a cure. So, when I finally get back to Japan, one of the first things I aim to do is to dig out one or two of my favorite CDs, sit down with a cup of tea, and listen to some music.
Yes, do that first.
Today's big conceptual discovery about my disease is the notion of this roughly kidney-bean sized lode of something existing in my brain. I'd conceptualized the lymphoma as a disease of the lymph fluid, without, so to speak, a home base.
Well. Said goodbye to my wife at about 2 p.m. today, and now she'll be at home with my parents in Devonport, and tomorrow she'll be getting on an early flight to Japan with our daughter, who will ride in a bassinet, a sturdy metal and canvas structure strapped to one of the airplane's bulkheads.
Flying out, there was a nice German couple sitting beside us, with a German baby in their bassinet. And then there was us. With our baby.
And one of these babies went to sleep precisely on schedule and slept for exactly the right amount of time, then woke refreshed and ready for another productive day of learning and socializing.
But the other baby (I'm not saying which one) kept sleeping for short intervals then popping up from the bassinet in a state of demented excitement, looking around as if to say, "Oh, gee, oh, wow, isn't it wonderful! The whole world is vibrating!" And then, toward the end of the flight, that baby, having worked itself up into a state of complete exhaustion, collapsed into screaming hysteria.
Fun and games on aeroplanes!
* * *
Late in the evening of January 16th, the Sunday on which I was admitted, the night nurse came round and told me I was done for the day. Nobody would be disturbing me until morning. I told her that, actually, a doctor would be dropping by to put some dots on my head. This was what I had been told (by someone), but the night nurse seemed to think that I was in error. She departed, leaving me alone with my delusions.
Midnight came and a new day started, Monday January 17th, 2005. I planned to get to sleep, but was waiting until the dots had been done. Finally, twenty minutes after midnight, a doctor by the name of Sheik came into my room. I had been right and the nurse had been wrong.
I learnt two things while I was in hospital. One is that the staff member you happen to be dealing with doesn't necessarily know what the plan is, regardless of whether that person is a nurse or a doctor. The other thing is that the plan has a tendency to change.
I was fascinated by Sheik, who was very dark and obviously Not From Here. Where was he from? Not Africa. Bangladesh? My guess was that he was from somewhere on the Indian subcontinent. It was conceivably possible that he was from Bangladesh but I never found out because I never asked. I wanted to ask but I was too inhibited.
In retrospect, I can see that, initially, I was a little inhibited in asking not just personal questions but also questions about plans, procedures and gadgets. One thing that changed during the course of my various hospital admissions that I became increasingly ready to ask questions, any kind of questions, the reason for this being that the response to the questions that I did ask was consistently positive.
In that encounter shortly after midnight, Sheik shaved away little patches of my hair and stuck a bunch of dots on my scalp in preparation for the next day's MRI. Each of the dots had a little circular slug of something solid at the center of a small dome of some kind of flexible material.
As midnight had been and gone, and the day of the operation had started, I was not supposed to eat anything or drink anything. In fact, I think I had been fasting ever since finishing dinner. Sheik having departed, I found myself unable to get to sleep, and started thinking about the hours ahead, which promised to be fairly busy.
I wrote in my diary:-
"The night nurse plans to wake me at 0600, my sister plans to visit at 0700, the ward round is at 0730, and at this stage I go to the MRI at 0830 or thereabouts and into theater at perhaps 1130, so I'm going to be one tired boy by this evening."
Still unable to sleep, I began to construct an elaborate step-by-step fantasy of my return to Japan. At that time, this fantasy was very important to me, and I played and replayed it in my mind. It was my connection to a future which I was hoping for but was not promised. A key point about this fantasy was that it was an imagined journey into a world from which stressors had been eliminated. Other human beings are, inevitably, a source of stress, and there were none in my fantasy, which is featured below.
* * *
2005 January 17 Monday.
I have been fantasizing about (well, more exactly, planning) my return to Japan. Get a flight that arrives at Narita early, about 0630. Immigration, customs, bus to Yokohama then a train home. At Hamayama Station, our home station, buy bread, buy sashimi, buy a papaya. Wander home.
Pick up the mail, go inside, set three cups of rice to soak. Go upstairs, find some CDs, come downstairs, make a cup of tea, put on the music.
Sit back and listen to the music.
Cook the rice, have sashimi with rice and sake, then take a long hot bath. A bath or a shower. Then go down to the supermarket and buy the makings of dinner. I will cook fish. And two boxed lunches for the next day, pork and sausages.
This is my dream.
Rule: I will not touch the computer the first day.
* * *
At the time, I thought this was a very relaxed fantasy, a mental exercise in total looseness, rigid and overplanned. The instruction to myself to "come downstairs, make a cup of tea" looks casual but was part of a very serious and inflexible wargame.
I had figured that if I made a cup of tea before going upstairs, then one of two things would happen. Either I would leave the cup of tea downstairs while I went up to my personal room to hunt for CDs. And then the tea would get cold. Alternatively, I would take the cup of tea upstairs with me, meaning I would possibly spill it, and the last thing I wanted to do was to begin with a domestic catastrophe.
(I was having this fantasy at a time when I'd recently smashed a number of things in my parents' house by dropping them, my brain-damaged control center having lost confident control over my fingers.)
The reason for planning to cook three cups of rice was that I would not be able to eat more than a cup of cooked rice at one sitting and the other two cups would do for dinner. (Our high-tech rice cooker can keep rice warm for hours, or even days, though it does tend to get just a little bit dry if left in the cooker for a couple of days.)
The prohibition on touching the computer was because I could all too easily imagine myself getting immersed in a world of computer problems right from the start and working myself into a state of ragged exhaustion, downloading e-mail, updating virus definitions, uploading stuff to my web site and so forth.
My fantasy was a journey into a world of total familiarity, totally free from stress. A world in which, conspicuously, those stressors known as human beings were missing.