Chapter 5 Katherine

Living together as an extended family—Mum, Duncan,Katherine, Milo, Ella, and me—would take some adjustingto. For the kids, it must have seemed like a hugeadventure. It was going to be an adventure for all of us, alargely positive one, we hoped. But Katherine’s illnesschanged all that. A few days before our first Christmas atthe zoo, my wife and I received just about the worst newspossible: her brain tumor was back.
In April 2004 we were married after nine years together.
By June she had been diagnosed with an aggressiveglioblastoma brain tumor, and given about a year to live.
The excellent French medical services extracted the tumorand she underwent eighteen months of chemotherapy andradiotherapy afterward. When her body could physicallytake no more, the treatment stopped and she wasmonitored every month with an MRI scan to see if the tumorhad returned.
Katherine celebrated the end of her treatment in herusual way, with a bout of intense hard work. Cleaning,sorting, gardening at a frenetic rate. I told her that thedoctors had advised rest, but she said she felt fine, andsometimes it’s better for people to feel good about whatthey are doing rather than lie low. One day I went to theshops for supplies, and when I returned, Milo was at thegate to meet me. “Mummy’s fallen over but she’s all rightnow,” he reported, obviously agitated but under control. Iasked Katherine about her fall. She was looking dazed butdenied it totally. Gradually we pieced together what hadhappened. While making some tea, she had suddenlyfallen to the floor and started shaking all over. Both childreneagerly performed vivid impersonations and pointed to theexact spot where it had happened. Ella had started cryingbecause she thought she had died, but Milo pointed outthat she couldn’t have died because her eyes were open.
“Then I tried to give her some bread to make her strong,” hesaid. We phoned the doctor and went for another scan,where it was confirmed that this was her first epilepticseizure, which is why she had no memory of it. Epilepsy isvery common in people who have had brain surgery, as thebrain is a closed system and doesn’t like being disturbed.
Her anti-epilepsy medication was increased and tinkeredwith over the following months, as the combinations ofdrugs caused some quite serious side effects, includingdebilitating depression.
Eventually it was all stabilized, and we learned to look outfor the symptoms, which could be brought on mainly bytiredness. I briefed the children on what to do if it happenedagain. The bread was a nice idea, but in fact you are notsupposed to go near someone’s mouth if they are having aseizure; with every neuron in the brain firing at once, theperson can inadvertently bite your finger off. We told thechildren not to touch her if it happened again; she wouldn’thurt herself because she was unlikely to flail around, andthe best thing to do was simply wait for it to finish. After herlong months of anti-cancer therapies, Katherine had toendure perhaps the most frustrating treatment of all for her:
taking it easy. She did this in her own way, by taking longafternoon naps and then working hard with a mattock in hervegetable garden as the day cooled. Gradually the napsgrew shorter and her muscle tone began to improve. Wedreaded the monthly scans, but with each clear result, ourconfidence grew. The epileptic episode was a warningshot, but it also gave us a less-scary interpretation of heroccasional symptoms of giddiness or tingling in her hand.
Throughout that summer of 2006, I was on the phonenegotiating to buy the zoo, and by October, that was finallyachieved and I had moved in with Duncan and Mum.
Katherine arrived about a month later, after tying up ouraffairs in France, and for me it felt like the last piece of thepuzzle was in place. With Katherine on board, we couldn’tfail. She never failed. She wouldn’t allow those around herto fail either. Watching the budget with a beady eye, shealso wouldn’t tolerate overspending.
Just before Christmas 2006, shortly after moving to thezoo, Katherine developed a tingling on her right-hand sidethat didn’t go away with the epilepsy medicine. I phoned theGP to request an MRI scan, and was amazed that one wasscheduled in three weeks’ time. In France a car wouldarrive to take you to the hospital the next day. I telephonedthe hospital to get it moved forward and found that thefaxed request from the GP had arrived on the desk of thewrong specialist, who was on holiday anyway. I called theGP again and explained to him what a glioblastoma was,what it could do, how quickly it grows, and gave him the faxnumber of the right specialist. And this time—good man—the doctor asked for an emergency scan and we went tothe hospital two days later. There was a week to wait for theresult, which we passed clinging to the hope of epilepsy, asthe tingling seemed to lessen the more Katherine rested.
But it wasn’t epilepsy. The MRI scan revealed arecurrence of the tumor. She quickly developed a speechdeficit, leaving her unable to get past certain words, makingher repeat the same word again and again, which wasextremely frustrating for her and quite frightening. She lostmovement of her right hand very quickly, and her right armsuddenly became an encumbrance. Around us, the zoowas lumbering on, and we were caught between twoworlds.
The speed of the symptoms was alarming, but they weremediated slightly by the steroids she was prescribed, atever increasing doses, which alleviate intracranial swelling.
I still felt optimistic because several new and less-invasivetreatments had been developed since she was firstdiagnosed, and if the first line of conventional treatmentfailed, I knew there was a range of well-advanced trials,which I had kept in contact with. Before she underwentanother craniotomy, I was keen to explore some of thesenewer, less-invasive methods.
The difficulty with treating problems inside the brain withdrugs is the blood brain barrier (BBB), part of the body’sown defenses. This is a physical membrane that restrictsblood access to the brain, protecting it from blood-borneinfections. Very few things can get past it, but a virus can,and a modified herpes virus was designed as long ago as1995 to cross the BBB and carry with it an agent thattargets cancer cells and kills them. The measles virus andscorpion venom have also been used in this way inexperimental trials in the lab, though not in human trials,when I had last contacted them. Probably most promising, itseemed to me, was a German system of delivering ironoxide particles directly to the tumor site by injection, thenagitating these particles with the MRI scanner, which is,after all, a giant magnet. This literally smashes up the tumorfrom the inside, which I liked the sound of. Best of all, it hadbeen used on fourteen human glioblastoma patients in theprevious year, all of whom were doing well. I got in touchwith the Germans to see if Katherine would be eligible fortheir next trial.
Our first encounter with the neurosurgeon in Devon hadnot been promising, however. Obviously anxious, we’dbeen led through the neuro department to a small room tomeet the man who would be overseeing Katherine’streatment. He looked reassuringly geeky, but thenneurosurgeons usually do. He explained that the scan hadrevealed a recurrence of “abnormalities,” and scrolled usthrough a 3-D computer graphic of Katherine’s brain, whichshowed six or seven small black specks across bothhemispheres, including inside the corpus collosum, whichis the bundle of nerves connecting the two halves of thebrain. Around each speck was a small white stain, like awater mark, which he explained was swelling, which wouldincrease the symptoms associated with each tumor site.
This was the bit he could alleviate with steroids, but thetumors were too widespread for an operation, certainly atthis stage.
I asked if he could send the scan to our doctor in Franceso that we could have her input? “No,” he said emphatically,without looking up. “That won’t be necessary.” Would heplease send it, as she has treated Katherine for two and ahalf years, and we would be very interested in what she hasto say? “No, this is your treatment center now.” Rarely haveI had such a strong urge to punch someone’s face in sosoon after meeting them. Moments before I had beenrespectfully listening to a skilled consultant give us hisconsidered opinion. Now I was fighting the urge to snap offhis pudgy fingers one by one before hospital security tookme away. However, I felt this would have been a bad startto what was likely to be an ongoing relationship. Thisstubborn, territorial conservatism in someone who heldKatherine’s life in his hands was worrying indeed.
Then I asked him about future possible options such asthe modified herpes virus, the measles virus, the scorpionvenom, and the German iron oxide treatment, all of whichhad shown promising early results, some in humanglioblastoma patients. He shut his eyes, shook his headand said he hadn’t heard of any of them, but that there arelots of unproven trials that seem promising but alwayscome to nothing. Then he looked at me and said, “I’m afraidthis is a very dispiriting tumor to treat.” Poor guy.
He prescribed a course of PCV chemotherapy, a threeprongedapproach that is effective in reducingglioblastomas in about 20 percent of cases. To aglioblastoma patient, these seem like good odds. Itelephoned our French neurologist and asked her to askher English counterpart for the scan results, which she did,and fortunately he supplied them to her, so I could crossreferencetreatment options with someone in whom I hadsome faith. She agreed with the initial treatment of PCV, soall we could do was wait until the NHS (National HealthService) was ready to start Katherine’s treatment, on 7January.
I only hoped they knew what they were doing, as thesetumors are graded by their growth rate, and a grade 4glioblastoma can double in size in a week. We had aquietly fraught festive season. It just seemed that no onewas moving at the same speed as the tumor.
JANUARYKatherine’s condition had worsened in the run-up to thechemo, so we were glad when it began. It involved a shortinfusion and some tablets to take for the next week. By thetime the chemo started, she was already debilitated. Herright arm was completely paralyzed, her hand bunching upwith the tension of the tendons, and her right leg wasbeginning to drag. But she could still walk by herself withthe aid of a crutch. With chemo there are usually a few daysbefore the effects kick in, but she was weak, and stillrecovering from the effects of her long-term treatment inFrance. So, for the next three weeks she spent a lot of timeasleep.
Meanwhile, I was still working at the zoo, in betweenpopping back to the house to check on Katherine. Texts onmy phone from that time reveal the usual concerns aboutwages, etc. But one piece of good news was that weinterviewed a great candidate for the position of curator ofanimals. Filling this position was one of the most importantconditions for getting our zoo license. We had to havesomeone who knew exactly what they were doing in allaspects of animal management—after all, we didn’t. AndSteve Pilcher came highly recommended from the muchrespected Newquay Zoo, Mike Thomas’s old stampingground, and before that he had worked with the orangutansat Jersey for several years. Orangs are among my favoriteanimals (though it might be a bit far-fetched to imaginethem here within the next ten years), and Jersey is one ofthe best zoos in the world. Steve’s interview went well. MikeThomas came up for the day—after all, we weren’t evenqualified to interview a curator, as we didn’t know what tolook for. Mike led the questioning, and Steve came up withall the right answers, until we got to the question of Spar,the elderly, arthritic tiger up in the top enclosure, andwhether he should be put to sleep. This is a contentiousquestion, which divides zoological thinking. I knew from thevet that although Spar was wobbly, he was almost certainlynot in pain. At nineteen, he was well past his natural lifespan in the wild, and his obvious frailty had occasionallyupset the visitors at the zoo for the last few years. But thevet had told me he had been in Spar’s corner for manyyears, and there was no reason why he shouldn’t carry onuntil there was a real medical reason to intervene. Mikehappened to disagree, and phrased the question in a waythat made it obvious what he thought. Mike may seemavuncular, but he is also formidable, particularly to ayounger candidate being interviewed for a senior positionlike this. The easy thing to do would have been to agreewith him, but Steve didn’t. “Well, he’s not in the wild. He’s ina zoo,” said Steve. “No matter what he looks like, if he’s notin pain, I don’t see why he shouldn’t live out his life until thevet says otherwise.” Mike didn’t like this answer, but I did.
Apart from anything else, it showed a steeliness that hewould need if he took the job.
Steve was married to Anna, another experienced zooprofessional, who was currently lecturing at a universitymaster’s course on veterinary science in zoos. When hercontract ended in a couple of months, she would make anexcellent addition to the team. Both of them were seriouslyenthused by the potential of the site and brimming withideas, backed up with the expertise to bring it forward.
Suddenly it looked like we had an excellent uppermanagementduo, ready to take on the enormouschallenges that lay ahead.
But in between us offering Steve the job and his arriving,Katherine’s condition worsened considerably. When hearrived in mid-January, I had to tell him the news, and saidthat while I would liaise with him daily and give him fullsupport on any changes he felt were necessary, my realattention was elsewhere. The situation in the zoo reallyrequired everybody’s full attention, but with the arrival ofSteve, already braced to face a huge task, I had to unload alot of the responsibility onto him. Handing over to this poorguy, I could see him accepting the strain, but also that hewouldn’t buckle under it. I thought he could do it, and therewas plenty for him to do.
On the same day that Katherine started herchemotherapy, an article appeared in the medical journalCancer Cell, which was not on my usual reading list.
Duncan had heard about it through a review in ScientificAmerican, which a friend had shown to him, and had beenapparently mildly surprised when Duncan grabbed thebrand-new magazine and insisted on taking it away withhim. He showed it to me and explained it as I read.
Dichloroacetate (DCA) had been used to treat children witha metabolic disorder for thirty years, with few side effects.
What a team in Canada had just discovered, however, wasthat it would also dissolve glioblastoma cells on contact inthe lab. Intrigued, they had infected some rats with thesetumors, then given them open access to DCA, dissolved intheir drinking water. Because DCA, being a very simplemolecule, can cross the blood brain barrier, it finds cancercells, enters them, and destroys them by reawakening themitochondria. I’ve always liked mitochondria. They are thepower plant of the cell, providing the energy, but they arenot strictly human. They are descended from bacteria andhave their own DNA, which is why high-altitude training killsoff populations of them and produces new ones that canmetabolize oxygen more efficiently when sprinting at sealevel. What I didn’t know was that mitochondria are alsoresponsible for cell apoptosis, that is, the suicide of the cell,should it become infected. Naturally, as the cancer takesover the cell, one of the first things it does is to switch offthe mitochondria. But DCA switches it back on. Theexperimental group of rats in the lab all had massivelyreduced tumors, and the control group, without the DCA,had great big fat life-threatening ones. So it can cross theBBB, has been tested on humans for thirty years, and it killsglioblastomas.
However, there were no human trials for glioblastomaspecifically. It had only just been published, and at the time Iwas inundated by suggestions for cures from all quarters.
My brother Vincent liked the scorpion-venom research,Katherine’s parents advocated eating apricot kernels, andmy personal preference was for the German method, whichKatherine’s sister Alice had uncovered and researched. Ifconventional treatment failed, one of the conditions ofgetting onto this trial was that the patient was notundergoing any other treatment at the time. Katherine’sscan was already on its way to Germany, and I didn’t wantto do anything to jeopardize her eligibility. “If it was me, I’dbe drinking gallons of DCA,” said Duncan. But I held off forthe time being.
Katherine came out of the chemo slowly, and we had towait a week or so before she could be assessed for thenext round. When she came back around, she came backworse. It had weakened her, as it does, but considerably. Ionly hoped it was having a similar effect on the tumor, butthere was no guarantee of that. Her walking was worse,and she had to be supported on her left side, the goodside, and the right leg wheeled into position for each stepwith a hip-to-hip roll of her whole body sideways. Once theright foot was in position, the knee seldom buckled if wekept the angle right. In time this awkwardly encumberedgate became more complicated, when the right footrefused to come up, and had to be flicked by the heel withmy own right foot. This meant standing on one leg at acrucial part of the step with Katherine balanced on her ownweakening left leg, so we decided it was more practical toget hold of a wheelchair, particularly for outings, which wewanted to continue while ever it was possible.
Unfortunately, none of the different branches of the NHSwith which we were by now in contact could provide awheelchair. The application process was too long, and thekind we wanted, with the big rear wheels, was forbidden fortriplegics, in case her bad hand slipped down and gotcaught in the wheel. But these were by far the most stablechairs, able to navigate the steeper unfinished paths of thepark far better than the small-wheeled variety, whichKatherine’s brothers eventually managed to hire from theRed Cross. This did make things much easier, however,and I took her out into the park as often as I could, for freshair and to remind her of the wonders that surrounded us.
She had never seen the tigers up close, so one day Itook her behind the tiger house, where the three handrearedtigers, Vlad, Blotch, and Stripe, would come right upto the fence and do their obviously friendly “chuffing” noises,wanting to be stroked. I’d asked Katherine if she’d wantedto do this, and because it’s very much an “off show” areawith poor wheelchair access, she’d waved her hand andshrugged, indicating indifference. But it is a profoundlypowerful experience to be so near these huge, hugepredators, and then to see them behaving just like great bighouse cats, wanting human contact. Katherine was notimmune to this experience, and was visibly filled withwonder at the spectacle, which was lovely to be able toshare with her.
Mum and Duncan provided enormous support for usduring this time, looking after the children, helpingKatherine where they could, and it would have beenimpossible without them. But as the person closest to her inher daily life, a position I now know to be formally calledcaretaker, I learned in more detail some of those littlerituals she used to carry out with such graceful efficiencyherself. Like the folding of clothes. I was dimly aware of itgoing on during our years together before, watching fromthe bed and wondering how it could possibly take someoneso long to prepare for going to sleep (twenty-two minutes,over the years I’d noticed, was her average from enteringthe room to entering the bed). Now I understood theprocess from an insider’s perspective. If you have niceclothes and you care what you look like, the key, it seems,is to treat them carefully and put them away after usingthem, rather than just leave them on the floor (my clothesare generally sloughed straight onto the floor and steppedout of, ready, often, to be reused the next day).
Though it was an outward and shocking sign of herincreasing disability, with potentially sinister implications,caring for Katherine became in some ways the best part ofthe day. It gave us a chance to be together in a way that wecouldn’t manage while she had been the human dynamo inthe office and the home, spinning more plates than I evenknew existed. Those intimate hours in the daytime and atnight as I helped her to the toilet, washed, fed, and dressedher were spent in laughter, and became a welcome breakfrom my more public duties as a new zoo director.
As Katherine became more disabled, I spent more of mytime with her. Initially I could get her up, washed, dressed,and breakfasted by about ten o’clock, and then leave hersitting or reclining somewhere with a stack of readingmatter and remote controls. But this felt like abandonment,because for someone as naturally busy and as engagedwith the outside world as she had been, this enforcedleisure was a torture. I popped back as frequently as Icould, inevitably delayed by myriad queries and problemsthat beset any novice proprietor of a run-down zoo. Wewere told that if, somehow, the tumors were successfullyremoved this time, her movement and speech might return,but again they might not.
In the meantime I began learning about the fastidious artof eyebrow plucking. If you need a magnifying glass todetect a bristle of an eyebrow, I suggested, then youprobably don’t need to pluck it. Someone across the room,or even a couple of feet away, won’t be able to see it. Butthis cut no ice with Katherine. After careful positioning ofmirrors, tweezer, and optical equipment enabling thedetection of actual bristles, came the technique. This is nosnatch and grab, but a much more deliberate and torturousmethod. Grip the offending millimeter of hair firmly with thetweezers, and slowly ease it out in what for most men wouldbe an eye-watering agony. But female grooming breedsstoics, and never a flicker crossed even the good half ofKatherine’s face as I reluctantly conducted this torture.
Suitably groomed and plucked (Katherine, that is, notme), we arrived at the hospital for our next appointment—and had the most chilling conversation of my life. Ourappointment with the oncologist to discuss Katherine’sprogress, and therefore prognosis, had a surrealbreeziness to it, as the life of this most beautiful person wasdiscussed and seemingly dismissed in a shitty little backroom painted NHS blue, next to the toilets in the oncologywaiting area. The big, doe-eyed oncologist began bydiscussing plans for the next round of PCV, but I wasconcerned that it had taken such a lot out of Katherine thatwe needed to be sure it was working before we continued,otherwise she would suffer needlessly, but also becauseshe would be semi-comatose and unable to reportsymptoms at a very critical time, when we might need toswitch treatments. It was a good thing I asked. “Well,actually, I have to say I don’t think it is working,” she said. “Itreduces tumors in about twenty percent of cases, butnormally by now we’d expect to see some slightimprovement. And as you can see”—gesturing to Katherine—“things have got worse.” Katherine sat in her Red Crosswheelchair, smiling her half smile, taking it in or not,shrugging a bit, unable to communicate the million thingsshe must have been feeling inside. Then the oncologistturned to her. “You don’t really want to be feeling poorly fora couple more weeks do you?”
Katherine, defunctionalized, unable to speak, probablyunable to grasp the sheer enormity of what had justhappened, smiled and blinked, and shrugged. It took me awhile to grasp it too. I looked around the room. The medicalstudent had clearly been briefed that this would be a deathconversation. She couldn’t do eye contact. The wide-eyedmale nurse from Macmillan Cancer Support said nothing,but provided a foil for the knowing asides from theoncologist. I asked the oncologist if she’d read the DCAarticle I had forwarded. She rolled her eyes with a “silly me”
smile, and said, “Oh, I haven’t had time.” Cancer Cell, Isuggested, was a fairly serious journal that, one would havethought, would appeal to oncologists. “Mmm. It’s amitochondrial cell-apoptosis route,” she said aside to theMacmillan nurse, who now seemed to be present more assecurity than for any benefit to Katherine. They laughedbriefly. How silly of us to hold out any hope for that.
So what’s the plan? I asked. Another shrug, another fartoo-lightweight smile. There wasn’t one. What about X, Y,and Z, and some other drug combinations suggested bythe Americans? No, not available. I was rocked, andwanted to cry, but I wanted to stay strong for Katherine.
Besides, at the back of my mind I still held out hope for theGerman iron-oxide treatment, or Duncan’s DCA, which Igenuinely believed could be fruitful, and once it wasdemonstrated to be working, the medics would back us up.
But when the vast, imperfect but reassuring teat of NHSsupport is withdrawn, that is a cold feeling indeed.
It took a few days to adjust to the idea that we’d been cutloose from real treatment, and meanwhile the busyagencies of cancer care made it seem like things werehappening. There were appointments with the districtnurse, the Marie Curie people, the Macmillan team, theoccupational therapist, and some people called the reablementteam. After a bit, it occurred to me that a lot ofpeople were arriving, sympathizing, and asking questions,but nothing was actually happening. Still no one could getus a wheelchair, for instance, because the NHS red tapestrangled all efforts. No one could help me with liftingKatherine, as lifting is now against NHS regulations, butthey all approved of my technique. One department gave usa load of blue nylon things that were apparently for hoickingKatherine around, but all of them seemed massivelyintrusive medicalizations of what can be a simple, friendlyprocess. Someone else was looking seriously into the ideaof fitting a stair lift. But I wasn’t holding my breath.
Most of the physical disabilities, even if they becamepermanent, were things that I thought she could probablylearn to live with. But I couldn’t bear her looking confused.
Offering, poker-faced, her leg to be put into a sleeve or abra strap, reaching for a bar of soap instead of atoothbrush to brush her teeth, being surprised that the lightis controlled by the light switch. But her humor was stillthere. Her laughter was readily available, which told me shewas still in there. And her cool reproach if I wasn’t doingsomething properly. Just one eyebrow raised (she couldonly raise one, but that made it more effective) told me Iwas still being critically assessed.
FEBRUARYKatherine had become confused by the concept of spittinginto a glass during the process of brushing her teeth in thebedroom. If you offered the glass to rinse and spit, shedrank, then looked confused as to what to do with it once itwas in her mouth. She often tried to quickly start brushingwith a mouth full of water, which inevitably ended in a mess.
But she more readily followed the concept of rinsing andspitting in the bathroom as it is a more familiar environmentfor teeth brushing, though the bath-room was logisticallydifficult to get to, and very cold. Yet despite this she wasinstantly amused if you pointed this out by mimicking herfull-mouthed, wide-eyed perplexity. Her language seemedto improve at bedtime, briefly, when she could still bebrilliantly dry and scathing. Having propped her up in bedwith several pillows, which she indicated were workingperfectly, I overeagerly searched the house for yet another.
Propping it behind her, I asked if that was any better.
“Marginally worse,” she said, perfectly, after a day of beingunable to discriminate between producing a yes or a no.
It got to the stage where, because I spent so much timewith her, and already knew her so well, I had to be called inas translator for many simple interactions with other people.
The trick was not to suggest too many things for her tochoose from, and to realize that when she said yes, it couldeasily mean no, and vice versa. Once any word or gesturewas out, it tended to be repeated. Watching someone newto Katherine’s situation try to understand brought home howfar she’d slipped. Usually I had to step in, but once or twice Ileft her at the mercy of a well-meaning friend or relativewhile I snatched a few minutes catching up with things I hadto do. Like when Katherine’s lovely sister Alice was tryingso earnestly to understand what she was trying to say, andoffered a cornucopia of possibilities. Katherine appealedto me with her eyes across the room, and I knew exactlywhat she wanted. But for those five minutes, I simply smiledat her and shook my head, happily catching up on my email.
“You’re on your own.”
Before she almost completely lost her speech, Katherinewas sitting at the table with all the family struggling to saysomething to my Mum. “Can I . . . can I . . . can I . . .” Havethe salt? The butter? The vegetables? people helpfullysuggested. A rare look of frustration passed across herface before she finally got it out. “Can I pass you something,Amelia?” With her one good hand, and seven tumor sitesmultiplying exponentially in her brain, she was still moreattentive to others than anyone else at the table.
15 FEBRUARY: A GREAT ESCAPEDuring this period, in the middle of February, I was still ableto leave Katherine in the house for an hour or two at a time,propped up in front of the fire with some magazines,snacks, and the TV remote (which she never seemed toresort to, though I would have done). I didn’t like to leave herfor long, but I had to attend an urgent design meeting with alocal firm to discuss whether they were able to carry onKatherine’s design work, which she had so far,unfortunately, only sketchily outlined. Then the meeting wasinterrupted when I heard the news that a wolf had escaped(don’t you just hate it when that happens?).
At first, I tried to carry on as if nothing had happened—Ihad enormous faith that the keepers and curator couldhandle the situation. Unfortunately, the wolf got past them,across the perimeter fence, and into the outside world. Thatwas when the fun really started. Suddenly, instead of takingthe odd call on the internal radio to keep in touch with thesituation, I was stepping out of the meeting to do a quickinterview on Radio Devon, and then Radio Five Live. Thedesigners were very understanding and saw the funny side,but unfortunately, none of the journalists I was talking to did.
Obviously it was a serious situation, and members of thepublic were also keen to point out on air that seeing a largeblack timber wolf running down their street was notconducive to a relaxing afternoon. Trying to explain tohostile journalists (don’t you just hate hostile journalists?)that Parker, the number-two male wolf, was not a danger toanyone unless he was cornered, didn’t seem to work. Thetruth remained that a Class I dangerous animal in our carewas now running free in public, and that’s not how thingsare supposed to be.
Phrases I used in radio interviews like “He’s just aharmless scavenger,” and “He’s basically a big girl’sblouse” have been quoted back at me derisively by friendswho heard my torment. Other zoo professionals phoned tosympathize, saying that escapes were relatively commonbut for God’s sake not to quote them on that. The meetingfinally disintegrated as I liaised with armed police now twomiles away, with Parker in sight, wanting to know exactlyhow dangerous this big girl’s blouse actually was.
Then we got lucky. Instead of heading into woods, oracross people’s gardens, the black wolf turned left into achina clay quarry, which was a couple of square miles ofcontainable basin, and most important, completely whiteterrain. Also in the WBB China Clay Works quarry wereseveral redoubtable quarrymen equipped with localknowledge, four Land Rovers, and their own radiocommunications. As they liaised with our keepers on quadbikes (all-terrain vehicles) and the police, the tide turnedtoward the forces of containment. But Parker, not quitefinished, ran the highly equipped humans ragged for anhour or so before finally succumbing to a keeper’s dart. Iwaved to the parting designers over the heads of the mudspatteredkeepers and police, and settled in for an eveningof battle stories.
It sounded exciting, and part of me wished I’d been there.
As it happened, a friend and former colleague of Duncan’swas visiting at the time, and was a perfect person to join inthe chase. Kevin Walsh is a rangy six-foot-four Cockneywho worked for several years with Duncan as a privateinvestigator. The nature of their work meant that they had tobe adaptable, unflappable, and used to pursuits. Duncanand Kevin sped off down the road after Parker, in radio andphone contact with the police and keepers. “We just wentstraight into ‘mode.’” Kevin laughed, clearly having enjoyedhis day, and playing no small part in the recapture. Atseveral stages, despite the manpower on the ground, onlyone person had “eyes on” Parker and was able to relay thisvital information to the rest of the team. Kevin, Duncan,John, and a policeman had all held the line vitally in thisway, in what sounded like a very near miss. If Parker hadgot onto the moors, or into built-up backyards, he wouldprobably still be out there. “At one stage we wereseparated,” Duncan recounted. “But I next saw Kevin ridingshotgun—and carrying a shotgun—in the back of a pickuptruck, in the thick of it.” The vet who had been scrambled toprovide the anaesthetic for the dart gun, apparently, was afairly slight woman, who also had to carry a shotgun in casethings didn’t go as planned. With her other paraphernalia,this was proving an encumbrance, and she handed it to thecapable-looking Kevin. “That shotgun was my golden passto the center of events,” said Kevin. “Everywhere the vetwent I had to go, in police cars, Land Rovers and pickups.”
In the end Rob’s sharpshooting with the dart gun meant thatthe shotgun was never used. Another close shave for us.
And another satisfied visitor to the park.
It was deeply serious. It was absurd. It was not the firsttime the wolf had taken a shot at freedom. Parker hadescaped once before, before our time, and had beencollared, quite literally, outside the local pub. He seemed tohave gone in search of Rob, who “scruffed” him andbundled him into the back of a van.
When I started down this road of running a zoo it was thepsychological welfare of the animals that interested memost. The physical containment aspect, I assumed, was agiven. Now I see that the two things are often closelyrelated. Unhappy animals can take desperate measures,making them unpredictable. Parker, as number two, wasstressed by the decline in Zak, the elderly alpha male, fromwhom he would soon have to wrest control of the pack.
Rather than face his fear, he decided to try his luckelsewhere, and against the odds he pitched his bid whenthe electric fence was momentarily down.
The sleeping Parker was placed back in the wolf houseon a bed of straw with some hot-water bottles scavengedfrom our house (Mum, Katherine, and the children wouldhave to go without that night, because Parker’stemperature regulation system was compromised by theanaesthetic). I popped back into the house and tended toKatherine, who needed a bit of help, while the keepers gotcleaned up. Then I went back out into the driving rain toestablish with Rob exactly how Parker had got out. Therewere a few theories flying around, and by now, everyonewas absolutely drained—including me, from my difficult dayof unplanned hostile questioning by the national media. Thecalls were still coming in, our reputation had been seriouslydamaged, and I could feel that one more incident like thiswould finish us. It was vital that we establish exactly whathad happened and make absolutely sure it couldn’t happenagain, tonight or ever in the future. One possibility I had toeliminate was keeper error, which had been raised by anexternal professional who knew the design of the enclosure,and that the keepers were so used to working with thewolves, who scattered like, well, big girls’ blouses,whenever anyone went in with them. This could have led tocomplacency, and Parker could conceivably have gotbehind them and fled before they reacted. The wholeconcept of going in with the wolves was something thatneeded to be addressed before our inspection with aredesign of the enclosure, but for now, my general paranoiaat the end of another Code Red day led me to questionRob about this possibility. It was understandable, I said.
There would be no recriminations. We just needed to knowdefinitively. Understandably, he was not very pleased, butnor wasI. I desperately wanted to get back inside to Katherine,so I insisted that he show me some evidence there andthen that indicated that Parker had gone over the fencerather than through the gate.
In the woods behind the wolves, who were now howlingand yapping in agitation in their sealed-off section of theirenclosure—both of us drenched to the skin by the relentlessrain— we shone our flashlights around the perimeter fenceuntil we reached the section where the two halves of theenclosure are divided by a fence so that the wolves can beisolated from each other if necessary. Inexplicably, at thisback corner, rather than meeting the perimeter fence at aright angle, the line of the dividing fence veered offobliquely, creating a triangular nook and meeting the outerfence at a sharp angle of about thirty degrees. Thoughprotected by a couple of strands of “hot wire,” or electricfence, this narrow triangle could provide purchase for ananimal to climb, if the hot wire was down (there was nobackup in those days) and the wolf sufficiently desperate.
As it turned out, it was, and Parker was. “He’ll have knownstraightaway when the hot wire went down,” explained Rob,rainwater running down his face in the light of ourflashlights. Many of the animals on the park apparentlytested the fences vigilantly, not by receiving a shock, but bycoming extremely close and somehow detecting theelectrical field. This bothered me, as the old hot-wiresystem was one of the primary defenses against escapefor many of the more “dangerous” animals, including thewussy but controversy making wolves. Rob shone hisflashlight on the overhand at the top of the fence, and there,without a doubt, were some tufts of dark fur that shouldn’thave been there. It was from Parker’s chest. The powerwas back on, but if it failed again, we were in trouble. Therest of the pack were to be contained in the secure half ofthe enclosure until the rest of it could be made safe.
Relieved, I went back into the house to Katherine.
The council had ordered a cull of three of the wolves onthe basis that overcrowding was causing the unrest, butonce again I was reluctant to carry out this euthanasiawithout a lot of further research. The last cull several yearsbefore had apparently killed the wrong three wolves, allimportant in the hierarchy, resulting in the presentinstabilities in the pack. We employed freelance wolfwhisperer Sean Ellis, a controversial anti-establishmentfigure, to advise us. He apparently performed a little dancethat had all the wolves sitting at his feet, then recommendedthat we feed them a whole carcass instead of the joints ofcut meat, because in the wild the hierarchy is establishedby who eats what. The leaders establish themselves at thefeast, and then their urine smells different according to thebits they have eaten. Simple, and 100 percent effective.
The pack calmed down, and after the electric-fence expertRoger Best had finished with the enclosure, motive, means,and opportunity for escape were reduced to nil. Onceagain, the orthodoxy was proved wrong, and some animalswere saved.
I would have liked to have met Sean and seen hisassessment, but by then I was with Katherine more or lessfull time, often out in front of the house if the weather wasmild enough. Katherine would be wrapped up warmly, and Ispent this time on the phone about treatment options and,while waiting for calls, renovating an old tabletop I hadfound in a refuse container and married with some steeltable legs discovered in one of the barns on the park. Thetabletop was covered with many layers of paint, whichneeded stripping off, and the legs were rusty, but thesegentle DIY activities were normalizing for me and for her.
For the twelve years we had been together, I had spent aninordinate amount of time doing DIY. Partly because ofdoing up our flat and then the barns in France, partlybecause a significant portion of my income had come fromwriting about DIY as a columnist for the Guardian and othermagazines, but also because, to be honest, I am aninveterate putterer. We settled into an almost familiarrhythm.
Unfortunately, during this time, the phone calls were notgoing well. The scorpion-venom trials and the measles andherpes virus groups all rejected Katherine, sometimesbecause they were not ready, and sometimes because shehad too many different tumor sites—six or seven—andwhat they needed was one good primary tumor. Then,finally, a letter arrived from Germany to say the same thing.
Because of their intracranial injection technique, hermultiple sites meant that she was not a suitable candidate.
MARCHSuddenly the options were drastically reduced. It mighthave been possible to find another experimental procedurein another country, but Katherine was not very well at all now—probably well enough to travel, but the huge upheaval ofadapting to a new country, possibly a new language, at thisstage on the off chance that it might work was notappealing. Duncan’s DCA idea now seemed likeKatherine’s best bet, particularly when a good friend ofmine from college days, Jennifer, who trained as aresearch chemist, also got in touch and said she thought itwas a good idea. “The Internet is absolutely swamped bythis,” said Jen. “I’ve never seen anything like it. Theresearchers have closed down their site and aren’t takinge-mails, which is unheard of. Everybody wants DCA.” Thatdidn’t necessarily make it a good thing, but I was alreadyas convinced as I needed to be, and when Jen said shemight be able to get hold of some from her laboratorycontacts, I asked her to please try.
Meanwhile, I contacted as many doctors as I could to tryto get a private prescription for what was, after all, a cheap,widely available medicine that had been in use for the lastthirty years. The problem was, it hadn’t been used for thiscondition before, and so it was unlicensed. This meant thata doctor who prescribed it was technically takingKatherine’s life—and their career, should anything gowrong—in their hands. And they would be personally liable,should I decide to sue them if things went wrong. I knowquite a few doctors from my medical journalism days, and Icontacted them all, and my GP. All, understandably,declined regretfully, and I understood that it was a verydifficult demand to make on someone, and I think theyunderstood how desperate I must have been to ask. Theone person I didn’t understand was the local oncologist incharge of Katherine’s treatment. Her ideas, which wereofficially palliative anyway (that is, designed to alleviatesuffering or symptoms without eliminating the cause), hadnot worked. She had not even tried to eliminate the cause,and here was the possibility of a noninvasive treatment,successful in the lab, known to have negligible side effects,which was actually sitting in the pharmacy in the buildingwhere she worked. As with all the other doctors Iapproached, I sent her the relevant pages of the AmericanEnvironmental Protection Agency toxicology report,published in August 2003 to assess the use of DCA overthe last thirty years. This clearly concludes that the sideeffects, even in long-term use over five years, wereminimal: traces of peripheral nerve damage and minortoxic effects on the liver. If Katherine lived long enough toexperience these symptoms, we would be delighted.
Besides, she already had a lot more than peripheral nervedamage; she was paralyzed down one side and losingcontrol of her other side day by day. As next of kin I couldsign any disclaimers necessary. It had to be worth a try.
“No,” she said. And I still can’t understand why.
Duncan also knew a few doctors, and one in particularwho might be prepared to step outside his comfort blanket.
I thought he was too far removed from Katherine to go sofar out on a limb for her, but I was wrong. A surgeon, helooked Duncan up and down, took his word, risked hiscareer, and signed a private prescription. He wanted toliaise closely on dosage, which we worked out as best wecould together from the existing literature, and he gave us amonth’s supply. Or rather, he prescribed it. Actually gettinghold of an unlicensed drug that is at the center of aninternational controversy, even with a private prescription,is not easy. It took a further week of overcoming quitesubstantial bureaucratic and logistical obstacles, butunleashing Duncan onto a project is like unleashing theTerminator. Though his mission was benign, he’d be backwhen it was achieved. It was reassuring to know that hewas out there, relentlessly tracking down this drug, whichseemed like our absolute last chance to save Katherine.
Even if it only slowed down her decline, the medics mighttake more of an interest and make it easier to get hold of,or, ideally, take over the treatment.
Finally, on my birthday (which we’d all forgotten aboutuntil I started opening cards in the evening), Duncan sat in aroom in a London hospital with a still-suspicious head ofpharmacy examining the paperwork in front of him. The twokey elements were the prescription itself and hisconversations with the doctor who had written it, and thediagnosis of palliative treatment only for Katherine. Thepharmacist left the room and came back with a carrier bagfull of bottles of DCA, but resumed probing Duncan aboutthis unusual procedure. “As soon as I saw the bag,” saysDuncan, “I knew I was leaving the building with it, even if Ihad to take it off him and climb out of the window with it.”
Fortunately, this drastic action was not necessary, asDuncan answered the pharmacist’s questions to hissatisfaction and he peacefully handed over the DCA.
Duncan leaped on a train down to Plymouth, handed overthe bag, and we gave Katherine her first dose. It was,without a shadow of doubt, the best birthday present I haveever had. It gave us hope.
I drew up a chart so that I could monitor her progress,and added four doses of DCA to the ten or so differentpills, such as steroids and anti-epilepsy drugs, she was stilltaking every day. The key with DCA is to soak the systemin it, so that there are no peaks and troughs inconcentrations; so, doses were administered every sixhours around the clock. Her sleep was already disrupted,and it was easy to administer by mouth in the form of analmost tasteless liquid. If it worked, it was the least invasiveof any of her treatments, and I scanned the notes I madeevery day looking for signs of improvement, or patterns ofdecline.
Despite everything, the time spent so closely withKatherine was enormously rewarding. We had our secrets.
She was largely constipated by the steroids, which meantlong and often fruitless sessions on the toilet, culminating ina successful launch about every four days. These heavingtribulations, punctuated by infrequent but periodic sweetsuccess, were special times. We smiled and laughed atthese bodily anomalies, with their involuntary contortionsand novel procedures—such as the poo stick. By the timethe poo actually exited “the building,” it was so dense andturgid that it wouldn’t flush. Previously, this had been anachievement only I had managed a few times in our twelveyears together. Now, Katherine was dropping whoppas thatcould survive several flushes absolutely unmoved. So wehad the poo stick, specially sourced and cut to shape forbreaking up poo into flushable sections. We giggledconspiratorially through these sorts of things as we stashedthe poo stick (thoroughly cleaned, obviously) for future usewhere no one would find it, or if they did, would neversuspect what it was for.
The children also took an active interest in toilet matters,perhaps because this was an area they had learned aboutrelatively recently themselves. The best piece of equipmentto come from the NHS was a mobile commode, agleaming, new (small wheeled) chair with a detachableseat, very useful in the nighttime but also at other timeswhen conventional lavatorial facilities were just too faraway. Several times on excursions with Katherine thechildren had witnessed us being caught short. Generally, Iwould go to the nearest shop and insist, with varyingdegrees of forcefulness, on using the staff toilets. Theyalways agreed in the end, and we never had an accident.
But the children both said about the commode that, “NowMummy can be wheeled along and wee at the same time.”
Katherine smiled, and I had to explain to them that it didn’tquite work like that.
With the DCA now our last hope, in which I still ferventlybelieved was a genuinely possible route out of thisnightmare, there was nothing to do but monitor herprogress through my handwritten chart. Some days herspeech seemed to improve. On 14 March, the entry reads,“Speech and movement slightly better.” On the 15th, at theGP’s, she eventually managed to say, “I understandeverything.” But the general trend was toward lessmovement, less language, and more sleep. Then herappetite rallied extraordinarily on the 27th. She consumedan entire meal of diced sushi, ate a whole basket ofraspberries followed by half a bar of chocolate, andwashed it down with a large glass of chilled white wine.
“Superb. Superb,” she said, giving enormous reason tohope for an improvement. But these were among her lastwords.
Toward the end of March, our good friends Phil andKaren came to visit, as they had been every few weeks,and we took Katherine out to the garden center in her RedCross wheelchair. We were looking at adjustable recliners,a comfortable way to spend the day when you are triplegic.
Katherine obviously liked the trip, looking at the scenery,and enjoying being out with us. When asked which reclinershe liked, she shrugged and smiled and flicked her hand upto indicate that she didn’t care. We settled on a silvery graymodel that had real wooden armrests, as beautiful anobject as possible within the confines of the genre andavailable market. When we got back to the house wemaneuvered her into it; she was wearing the lovely fake furcoat that Phil and Karen had brought her on a previous tripdown and that she had requested every day since.
Katherine looked surprised by the chair, but was obviouslydelighted, and rubbed the armrest enthusiastically up anddown, smiling to us to show her appreciation that we hadgot her the nicest chair we could. One week later, she diedin it.
Katherine’s breathing stopped at 3:30 AM on March 31,while I was a few feet away working on my computer. In thelast few days her swallowing had become more difficult. I’dbeen expecting her to live at least a week or so longer, asmy dad had lasted on liquids administered by means ofspongy lollipops dipped in water for about two weeks. Shenever got to the spongy-lollipop stage, and the packetremained unopened. But I wasn’t completely surprised. Indeath, once again, she was absolutely beautiful. Thepuffiness of her face, which had aged her so dramaticallybecause of the steroids, was gone, and the Katherine Iknew was back. Except that she was dead. I woke mysister Melissa, who was staying with us, and thenKatherine’s two brothers, Dominic and Guy, and we stayedup, not really knowing what to do, as the shock set in.
Throughout the DCA treatment I had genuinely clung tothe belief that it could reverse or at least arrest hersymptoms, if we got the dose right. And then the medicsmight take an interest and take over the management of thetreatment. Even if she was left utterly dependent, she wasstill Katherine, my friend, and able to communicate thisthrough the confusion. But soon after that last proper mealthree days before, she became unable to swallow, not evenenough to take her pills, or the little squirt of DCA into hermouth, and I knew that that was it. Suddenly without hope, Iwas stunned. Melissa advised me that the literaturerecommends telling children before a significant death, ifthere is an opportunity, so that they can prepare for it. Thisseemed to make sense, so I took them out onto the picnicarea of the park and sat down at a table to tell them thesaddest news I hope they will ever hear. Mummy, whomthey understood had been very poorly for a long time, wasgoing to die. As soon as she had grasped the enormity ofthe concept, Ella burst into tears and climbed across thetable to me. “I don’t want Mummy to be dead,” she said. ButMilo stayed where he was. I told him it was okay to cry, buthe just became very still as he took it into himself, and hesaid; “I don’t want to cry. I want to be strong for you, Daddy.”
Everybody has their own way, so he just watched Ella andme cry.
At the funeral in Jersey, where Katherine grew up, it wasodd being the focus of what seemed like such a communalloss. Everyone who knew Katherine quickly appreciatedwhat a special person she was, and felt the appallinginjustice of her, of all people, being taken away. Faces I’dknown to be always creased into smiles and laughter werenow all drawn and haggard, pained beyond endurance, withtears in every eye. The strain, the horror, the disbelief, thesheer agony no one had been expecting to face,confronting the inexplicable, unjustifiable, inexcusable lossof such a favorite person. She was the one person forwhom nobody present had ever had a bad word ornegative memory. The women looked at me with extremepained sympathy, but somehow the men moved me most:
big Neill, unable to speak, tears bursting from his eyes androlling down his bearlike face; Tim, his fraught face full offear and pain; Seamus, a school friend of Katherine’s andnow a local politician, so capable and composed in everyother situation, stretched beyond any careful planning orconsidered charm. And while she had been alive, Jim andMike, both big and strong, were so tender with her on theirvisits.
After the funeral, the full horror of the last three monthsbegan to sink in. With hindsight killing off hope, her declinelooked different. But even within a few days I was able toappreciate that although this was a tragedy for us, it wasnot such an unusual one. Many people endure far worse.
We were not in Darfur, or Srebrenica, or the Congo, wherepeople have recently been eaten by rebels in front of theirchildren. Katherine had had a good life in a wealthy country,and died peacefully and virtually painlessly in as measuredand gentle a way as possible. We are designed to acceptthis loss—particularly children, who have had to evolve ingroups where parental mortality was high. Daddy might notcome back from the hunt. Mummy might die in child-birth.
Different caretakers would take them in and they wouldeither adapt or reproduce less well. We are mostlydescended from those who adapted. This almost makesevolution sound like a religion, but I took comfort from thesearguments. And, even amongst the luckiest people in theworld today, we were exceptionally lucky. As well as beingin England, with healthcare, laws, and privilege, and beingsurrounded by loving friends and family, we had a zoo outthere. And one day soon, I’d get back to it.
In the meantime, I felt like I needed a mild sedative,preferably something organic, made from naturalingredients, like water, barley, hops, and perhaps about 5percent alcohol by volume. Luckily, just such a sedative iswidely available: Stella Artois. Just what the doctor didn’torder, but in the early days, it worked perfectly.