Sunday, 24 July 2011

Winding down and mixed emotions

On Thursday 21 July I spent what will my last day in the office for some time, managing to nudge various matters forward for my colleagues to take further in the coming few months and noting how the consciousness of limited time can give added impetus and energy to a task. It was a rich, full day and ended quite late as there was a meeting of the church governing council that I needed to attend.

Giant talking flowers stalk the streets of the City as I make my way to the Tube.
Perhaps that meeting just went on too long...

I left wondering how the next weeks and months are going to be and when it is that I will notice the first glimmerings of energy for work. I am in this odd place where I feel and look healthy, but am about to be made significantly unwell for a concentrated period of time. I have spent my life avoiding white-knuckle rides but here I am, waiting my turn on one of the weirder ones. A day at a time, I keep telling myself.

Friday 22nd saw me engaged on some more tasks, this time from the comfort of my armchair, the laptop warming my legs. I finished a translation of a Latin memorial inscription and did some research on the 17th-century individuals named in it, as well attending for the last time in a while to a new photocopier leasing contract (grrrrr), an insurance claim and some outstanding points on a lighting installation. I delivered my last timesheet and that was it, for the time being.

Today, Saturday 23rd, we have been at the small annual reunion of a group of my wife’s schoolfriends. We take it in turns to host this and today were in North London, the journey taking us along the Westway, the Euston Road and through Islington. The smooth white and green form of the hospital was a significant landmark on the outward and return journeys and I craned my neck to look up at the floor where I will be confined in just a short time. We had a wonderful lunch of various barbecued meats and cooling salads, as well as a tart of peach and redcurrant resting on a cool layer of crème patissière that our hostess had made. Somehow the French name conveys more of the smoothness of this creamy, vanilla-laden ambrosia than does the English title “confectioners’ custard”, which smacks of taxonomy rather than taste. What is it about the French?

I mused again on this question this evening, as I watched the Radio France Philharmonic Orchestra give a thrilling, colourful and organic performance of Stravinsky’s Rite of Spring, televised from the Proms. Calling the orchestra by its French name, l'Orchestre Philharmonique de Radio France, and the work by its original title, le Sacre de Printemps, further underlines the allure of that great country. All the players looked très chic and the Korean conductor, Myung-whun Chung, was spellbinding, taking the players from a haunting whisper to raucous, pounding energy with a steady control.

These are good things that have happened in the world today.

Sad indeed though has been the wicked and calculating destruction of young life in Norway by a man who lays claim, we are told, to Christian beliefs. Jesus said “By their fruit you will recognise them. Do people pick grapes from thornbushes, or figs from thistles?” Labels can be such rubbish, can’t they, especially when they are stuck on the wrong item?

Amy Winehouse, too. May she rest in peace.

Wednesday, 20 July 2011

The Countdown Begins

It is now, more than ever, clear to me that cell harvest is the fun part of this transplant business. That was taking helpful stuff out of my body.

The next stage will involve mass invasion of my system by four different chemo agents, all of them sounding perfectly horrible and the final one being described to me as "particularly hard-hitting". Their point of entry will be a line fed up my arm and into a vein in my upper chest, known as a "PICC line".

The drugs will be administered over six days and on the seventh day the previously harvested stem cells will be sent down the same line to begin the process of rescuing me from the ravages that will have been set in action by the chemo. While this is going on the NHS will be putting me and my wife up in a hotel only a short distance from the hospital. The reason for this is not, as one newspaper has recently alleged, in order that public money may be wasted on needless luxury. It will in fact be cheaper than providing a hospital bed and have the added benefit of enabling me to feel like a normal member of society for just a while longer. This stage is termed "ambulatory care".

Around day seven, although timing is unpredictable in these things, I will not be feeling like ambulating very far at all. The chemo will have laid waste to my bone marrow, stripping out uncountable multitudes of cells, both good and bad. The crucial consequence is that, quite apart from the immediate side effects of the drugs themselves-hair loss, nausea, fatigue and so on-my immune system will be pretty useless and I will be neutropenic, vulnerable, not only to infections from outside and therefore needing to be isolated, but also, and more disturbingly, from bugs that inhabit my frame all the time but which are kept at bay by the immune system. My defences will be down and the little so-and-sos will take advantage, helped by the fact that the drugs will have damaged a lot of the physical barriers within the body that normally prevent the travel of infectious agents to places where they do mischief. The last drug, melphalan, damages the lining of the digestive tract from top to bottom (yes, "bottom" as in rear end) causing mouth soreness and ulcers as well as diarrhoea.

Flash had never before encountered anything with the power of the evil Melphalan

At a suitable point around the end of the first week, therefore, I will abandon the comforts of four-star accommodation and take up temporary residence in the hospital. Typically the hospital stay is two weeks or slightly more and the first seven days are the worst, as the stem cells will need some time to begin restoring normal blood production, including those components of the blood that deal with infection. I have no idea what this period will be like but it will not be nice and infections are guaranteed, so microbiologists will be on hand to perform tests to identify possible infectious agents and head them off at the pass with a battery of tailored antibiotic regimes. I will not feel like doing very much at all and blogging is likely to fall by the wayside.

By the second week in hospital I should start to feel better, assuming I am not one of the unfortunate five percent who have to go into intensive care (septicaemia being the likely cause). Once my immune system has recovered sufficiently I will be discharged home, to be monitored in frequent outpatient appointments. I will not be back at work until after Christmas at the earliest.

Yesterday my wife and I were given the date when all this is due to start: 10 August. I finish work this week and we then have a holiday. In six weeks or so, if I come through as well as I am told I have a reasonable chance of doing, given my present good health, the worst should be behind me. My head is bowed and I just want to get on with it.

Sunday, 17 July 2011


The new mattress was truly wonderful, you will be delighted to know, but sleep played hard to get. Wednesday 13 July 2011 was to be an important day and my mind was in no hurry to shut down. So, that thing happened when you lie awake for what seems like an age and eventually sleep turns up, but too late, so that when the time comes for you to get up—which in this particular day had to be early—you are not as wide awake as you would ideally like to be. Sigh…

My wife and I were due at UCLH by 8.30am, which meant leaving the house by 7.30. We didn’t quite manage it and so were punished by having to take a later, faster train than we would have liked and having to stand all the way to Waterloo. Give me a slow train and a seat any day, but we couldn’t keep the good people at the hospital waiting. We emerged from Warren Street Station into the bustle of Tottenham Court Road and there was just enough time in the distance between the station and our final destination to send a text about—you guessed it—photocopier leasing contracts. Once the message had zoomed off to its remote satellite destination (that is how these things work, isn’t it?) I switched the phone to “airplane mode”: for the rest of the day it was going to be an iPod.

There is something about the first floor of The Rosenheim Building of UCLH that should be bottled and fed into the water supply of, not just all National Health Service premises, but the mains of the country itself. The manner of all the people working there that I have met is of quiet efficiency, reassurance, focus, professionalism, warmth, humour and other good stuff. If they ask you how you are, it is not because they want to soften you up to sell you something—when I have finished putting the boot into photocopier leasing contracts, I will get to work on telemarketing techniques, which are surely the invention of Lucifer himself. I digress…

The first floor is divided into different areas for different procedures and on this day were headed for Apheresis (the Ancient Greek word for “removal”, hence “harvest”). In this section there are four beds and, by the side of each, an apheresis machine. The section is managed by two nurses at any one time and the pair who would be looking after me introduced themselves with broad smiles. Here’s the machine I would be on, named after Ginger Spice (there’s also one called Kylie; Ant and Dec also get a mention).

Geri Halliwell as you have never seen her before.
She is rumoured to be not entirely thrilled with her latest makeover.

A number of things had to be done before the procedure could start: my blood had to be tested and, if my counts were satisfactory, the machine had to be set up; my blood pressure, pulse, blood oxygen level and temperature (“vital signs”) had to be measured, as did my weight and height; a needle had to be inserted into my left (non-dominant) arm and a narrower, plastic cannula into my right. Once tubes were attached to the needle and cannula I would be confined to the bed for approximately five hours. Fortunately the bed was extremely comfortable and had the added benefit of being fully adjustable. I would be able to move my arms, but movement of the left arm was discouraged as bending it would risk injury, such was the rigidity and width of the needle.

My blood counts came back normal, with haemoglobin slightly raised from the previous day, and so we had the green light. Tubes were rigged up; drip bags were attached to the rail above the machine; settings were keyed in. I got out my phone, headphones and Kindle. My wife settled herself in a chair by the bed, grappling with sudoku.

The centrifuge at the heart of the apheresis machine,  ready to be fitted with the circular tube visible on the left.
 The blood filling the tube is separated into its constituent layers of plasma, white cells and red cells. The stem cells are a relatively tiny part of the white-cell layer.

A poor photo of the bags suspended above the machine.
Left to right: anticoagulant, saline, waste bag, stem cell bag. Obscured by the control panel and the nurse's hand is a bag in which additional plasma can be collected, if required (it wasn't).

The needle went into my left arm under local anaesthetic: a stout item designed to carry a generous quantity of blood to the machine. The cannula was put, rather painfully—don’t like cannulas, for the most part—into my other arm ready to be the point at which blood, having circulated through the machine, would be returned to my system. Now for a “comfort break” and a last chance to stretch my legs before the day’s proceedings began in earnest.

Once I was back in the bed, it was time to connect the various tubes to the plastic whatsits (technical term) attached to the needles and set the machine going about its laborious task of separating out at least two million stem cells per kilogram of my body weight from my circulating blood. Here the team hit snag one of the day: when the tubes were connected to my left arm, the strong pulse of blood into one of them indicated that the needle had gone into an artery rather than a vein, an undesirable state of affairs. Time to regroup, meaning that the needle would have to be withdrawn, the bleeding staunched with a tourniquet, and another location found. I was told that it was unusual to encounter an artery so close to the surface.

So, more anaesthetic and another needle, again painless, but we soon hit snag two: the amount of blood that had leaked into my arm and the body’s defensive reactions to such an assault (unintentional, Your Honour) had caused the tissues of my inner elbow to swell, meaning that the vein into which the new needle was introduced was constricted and would not yield blood. I had fun squeezing and releasing a little pad jokily shaped like a red blood cell in order to try and induce the vein to produce the goods, but the vessel, like the previous night’s sleep, proved stubborn. We had now therefore reached Plan C: the needle would be removed from my left arm and a flexible cannula inserted into a vein along my forearm. This was possible because my veins are as yet in good nick and would give an adequate flow to the machine, even through a cannula. I would be free to bend my arm, so there would be at least some reward for all this vascular toing and froing.

The cannula went in without any fuss—either on its or my part—and, once the tubes were connected to it, we were ready to start circulating my blood through the machine. This did not feel as weird, either in concept or in execution, as I had envisaged. It was quite relaxing to watch the steady pulse at the interface of the three tubes coming from my left arm as the scarlet from my vein mingled with clear anticoagulant before making its way around the back of the bed to the machine gently whirring and clunking to my right.

My wife's Kindle, sadly another poor photo.
I did not feel like reading but did greatly enjoy looking at the screensaver, of a work by
the never-less-than-wonderful Hans Holbein The Younger.
Anyone out there know who it is? Looks suspiciously like Thomas More...

I was drowsy for much of the first half of the procedure, catching up with some of the sleep that had been so elusive during the night. There were interruptions when one of the nurses would come and check on progress or see to it that blood was flowing evenly to the machine. I now learned that veins do not like being violated by sharp objects and that they can go into spasm, trying to eject the intruder; this in turn interferes with blood flow. In order to relax the wounded vein and make it more amenable, a pleasantly warm pad was placed in the crook of my elbow and, with a view to aiding the process, I was given another quirky soft anatomical shape to squeeze periodically, this time a touchingly small bone bearing the name and strapline of Anthony Nolan.

The little bone promoting Anthony Nolan,
the wonderful charity that links bone marrow donors with needy recipients internationally.
The strapline is BE A MATCH, SAVE A LIFE.

Anthony Nolan (1971–1979) with his remarkable mother Shirley (1942-2002).
Sadly he never got the transplant he needed to address his rare blood disorder, but his mother kept his name before us all and in 1974 founded the charity that bears his name (originally The Anthony Nolan Register).

My vein’s twitching, futile attempts to protect itself from assault were curiously poignant: how staunchly our systems fight to maintain the status quo of life. In this case however the immediate interests of one vessel had to be sacrificed for the good of the whole: quite political, really. The vein put up a fight and there were frequent bleeps from Ginger indicating to the nurses that there was an interruption of flow and calling them over to restore order—yikes, more political analogies! Problems persisted until they decided to check the line for clots. The tube carrying blood to the machine was disconnected and some of its crimson contents poured on to a thick gauze pad. There it was: in the middle of the spilled red stuff, the tiny dissident clump of cells, about a centimetre in diameter, that was standing in the way of the harvest— a small but effective protest, one might say. The line was duly reconnected and the Ship of State was back on course, if I may be allowed one final metaphor.

Events proceeded smoothly from then on while I listened on my iPod to an effective critique of some of the standard arguments about the existence of God, in this instance The Good God Hypothesis and The Evil God Hypothesis. Academic points sallied forth as the audience on the Oxford course tackled the lecturing philosopher with a variety of questions. He repulsed most of them without too much trouble, but one seemed to break through the lines: in essence the question was “instead of debating God and His existence in theory, why not seek to experience Him as revealed in the Scriptures?” While this question is fraught with all sorts of difficulties—philosophical, historical, cultural, to name but 5,000 (and counting)—it is nevertheless striking that spiritual experience is so readily discounted by many modern commentators. We properly esteem our senses and intellect, evolved over unimaginable lengths of time, as guides—albeit imperfect—to the realities of things, but banish our spiritual senses, belittling them as an irrelevant by-product of consciousness or a tiresomely obstructive survivor of outmoded ways of culture and thought, the junk DNA of the mind. The concept of redundant DNA is now itself open to question and I would suggest that we are not, and may never be, in a place where we can do without overtly spiritual frameworks. The human mind is capable of as many follies as it is glories, but I do warm to the idea that what we are witnessing is a struggle for dominance between the visionary, “Big Picture” aspects of the mind and the analytical, structuring tendencies.

Never mind all this stuff: what about food? About half way through the whole proceedings the lady appeared with the refreshment trolley, from which I requested a corned beef sandwich (plain but decent) and a banana. Late morning there had been shortbread biscuits and NHS tea (weak). My wife and I also shared a packet of Doritos. I could get used to this.

I had been warned when briefed on apharesis a couple of weeks before and again as the harvest started to watch out for the tingling feeling in my lips that would be the first warning that levels of calcium were getting significantly depleted. Lack of calcium in the blood was a side-effect of the anticoagulant that was being introduced into my blood to stop it clotting in the tubes or the machine and bringing the whole process, not to mention me, to a grinding halt. Symptoms of low calcium could appear at any stage in the harvest but on this occasion they showed up late on, being remedied by chewing a few fizzy tablets with an orangey taste that made the tingling abate in about 10 minutes and left me feeling rather bloated and flatulent: better, of course, than the muscle cramps or worse that could have followed otherwise.

The bag suspended nearest to my head was periodically receiving the crucial stem cells, mixed with a concentration of white cells and a small quantity of red cells that gave the otherwise clear liquid a pinkish tinge. It took somewhat less than the projected five hours to collect the volume of liquid in this bag that the nurses were after. It was then time for the machine to be stopped and the bag taken to the laboratory on another floor for testing to see whether enough stem cells had been collected in this one session or whether I would be back the following day for tea and biscuits. The bag had been carefully labelled earlier, my name and date of birth being verified with me by two nurses present at the same time, one of whom checked what the other entered into the label printer; before it was stuck to the bag, the finished label was shown to me. This was all very reassuring, not least since the man in the next bed had the same first name as me.

It took not very long at all for the happy news to come back that 2.3m cells per kilo of my weight had been collected and that my next encounter with NHS catering could be delayed until transplant time. Some people have a much more protracted harvest and sometimes an alarmingly expensive injection is needed to coax (bribe, more like) the stem cells to emerge from the bone marrow in sufficient numbers; complicating factors can be age (I am relatively young for this sneaky disease) and number and/or type of previous treatments. Although my left arm was steadily going interesting shades of purple, there was no doubt that I had, at least on this occasion, had an easy go of it. The harvested cells would be making their way under careful protocols to the frozen vaults of the hospital.

Before the cannulas were taken out and hairs wrenched from my arm by the removal of the sticky pads that held the aforesaid whatsits in place, there was need for another blood test. Two vials of blood were drawn off through the cannulas and my wife took them upstairs for testing. The result soon came back normal, the cannulas were finally removed and we were free to go.

We reached home in reasonable comfort, this time travelling out of the rush hour. In the evening my son and his wife came round for their first sight of their official wedding photographs, although “official” sounds excessively stiff for such a delightful collection of joyful images. This being the digital age, with initial production costs reduced to low levels previously unimaginable, photographers are freer to take risks with shots, leading to a riot of creativity in areas of their art that had previously been rather hidebound, not least wedding pictures. The classic skills of photography are no less required than they ever were, of course, but what fun can be had and no more messy chemicals (unless you really want to).

The day had gone as well as possible, there was the new mattress to look forward to and I was now tired enough for sleep to be assured. I can for a little while longer hold off on facing the details of the next, more unpleasant, stage of treatment. I am due to see the consultant this coming Tuesday and will let you know how that meeting goes.

My left arm, the morning after.
I hesitated to show you this, but this blog is about sharing the everyday experience of a disease and its treatment.
Knowledge is power and, if you like photos, you will maybe appreciate the strong diagonal.

Tuesday, 12 July 2011

How about...

I was going to tell you so much about today…

How it was a lovely mild day and I was able to go into work for the first time in over a week

How we kicked off a project to investigate under the floors at one of the churches I help administer

How we had a wonderful quiet Communion service at St Olave’s

How enthusiastic some Canadian visitors were about the wonders and the history of the building

About going through some photographs of the war-damaged church, showing the then Bishop of London preaching in ruins open to the sky

About my daughter passing her driving test and how thrilled I was

About the fact that photocopier leasing and servicing contracts are full of snares

About the kind people who have sent me messages of support and prayer

About going to University College Hospital (UCH) for a blood test

About how I should stop calling it University College Hospital (UCH) and instead call it University College London Hospital (UCLH)

About how one of my veins refused to yield blood for testing for the second time in just over a week and how I joked with the nurse that I would give it a severe talking to when I got home

About the fact that my blood counts are normal at the moment, although haemoglobin is a bit low following last week’s chemo, explaining why I am a bit out of puff

About the weird fact that part of me is looking forward to the drastic treatment ahead and about how that may not be so weird after all…

How much I enjoyed reading more of a book called Wired for God on my journeys to and from London

How much fun my wife and I had compiling a book of photos of our son’s wedding with the help of the wonderful photographer and Apple’s peerless iPhoto software and about the fact that I am not on a retainer from Apple but just love their stuff and how irritating that might be for those who do not share this enthusiasm but that I can’t really help it if they prefer Windows and how that is their loss and how much of a wind-up they might find this sentence to be…never mind, I’m just kidding (or am I?)

How our new mattress arrived today and how much I am looking forward to sleeping on it in a few minutes

About my wife’s lending me her Kindle tomorrow as I will be confined to a bed and connected to a machine named after one of The Spice Girls for four hours 

I was going to tell you all that, but tomorrow may be a bit tricky and I should get some sleep and the new mattress is just the business.

Monday, 11 July 2011

Aches, tabs and a jab

Deep pain in my lower back and a throbbing in the sternum as I prepared for bed last night induced me to surrender to the embrace of paracetamol. My head hit the pillow full of apprehension that I would not be able to get a decent night’s sleep, but mercifully my fears were not realised and in the morning I awoke reasonably refreshed.

It was difficult, as I rose from bed, to distinguish the usual sacro-iliac misery that I have in recent years addressed—with some success—by means of Pilates from something that might derive from the tiny G-CSF jabs I had administered over the last few days. However soon stabs of an unaccustomed discomfort that seemed to arise within my bones and throbbed with my heartbeat persuaded me that more paracetamol would be justified. Two more tabs down the hatch, then, followed by jab 7.

Pain subsides and then creeps back around lunchtime and it feels as if someone has rigged up a vice around my sternum. I manage before that to post a notice up on St Olave’s website and catch up with some work emails, as well as learn that Dr Peter Turner has made appearances this morning in The Daily Telegraph, The Daily Mail and—that acme of the zeitgeist—wikileaks. I have had relatively few opportunities in my life to be close to a media story and it is fascinating to see how the ripples of information spread. Major news vultures are still of course circling around the corpse of The News of the World and minds turning increasingly to the importance of media diversity to a healthy democracy. Politicians are proving horribly easy to satirise at the moment, but maybe a broader good will emerge from the fetid swamp of sleaze.

"A bright future awaits you in my media empire,  Ms Wade"

I have finally finished the printer contract comparison study thingy and sent it off to the decision makers. It is now after 9pm and the aches are not too bad at the moment, so holding off on more tabs until bedtime. Tomorrow brings the blood test that will decide whether I am ripe for harvest!

Road rage

Today (Sunday 10 July 2011) I had two novel experiences.

One was seeing a story I have been intimately involved with (for the last 15 months) written up in a national newspaper. You can read all about it here

St Olave Hart Street in 1942.
It was from these ruins that Peter Turner disappeared. We hope he will like what has been done with the place since.

The second, which for a while—sorry to report—threatened to eclipse the joy of the first, was being called a “retard” by a rather aggressive fellow motorist who felt severely inconvenienced by a driving manoeuvre I had made. So cross was he in fact that he added a familiar adjective to specify what sort of impaired person he perceived me to be. Playground stuff really, but the encounter left me not only shaking for quite a while but also lamenting the coarseness of his manner, his lack of respect for my relative age and the fact that his very nice car was considerably more refined than he was. Bullying helps a guy get on, but what sort of world does it create? Of course I thought of all sorts of smart ripostes after the event, but the pervading feeling was one of sadness, not only for him but also for my desire to get back at him, to deface his vehicle, to insult his nationality…anything that would restore to me a sense of dominance and strength. I had even wanted to taunt him with the fact of my cancer in the hope that this would make him feel suitably wormlike.

The incident occurred while I was parking near our church and it was a relief to be brought up short during the service that soon followed by the ancient words of The Lord’s Prayer: “Forgive us our sins as we forgive those who sin against us”. I knew I must forgive this man or the cycle of violence would never end; I knew I must repent of my desire for vengeance. That was a turning point and I could return to living in the moment, the only healthy place to be. It is true that the ashes have been smouldering all day, but they are not as warm as they were.

In the afternoon my wife and I went to buy the new mattress we have been promising ourselves for a while. The choice in the end boiled down to two and we opted for “memory foam” supported by 2000 springs that promised both subtlety of support and durability (this not being an everyday purchase). Delivery is on Tuesday: can’t wait.

Our son and daughter-in-law are now back from honeymoon and they called in this evening to pick up some things to take to their first home. My daughter is practising for her driving test and so drove all of us the few miles to the new place, a well-equipped and reasonably roomy bedsit in a pleasant and convenient location. It’s a really good start, I am happy to say.

This morning saw injection 6 and by the evening my lower back was starting to ache persistently. Could this be the stem cells massing in the marrow, ready for harvest? I was advised that this might happen as the jabs took effect and to look on the pain as “productive”. I’m trying, I’m trying!

Saturday, 9 July 2011

Tall storeys

Friday 8 July 2011 and it was time for injection 4. So far so good with the G-CSF jabs and here is a souvenir photo for you to cut out and keep.

Looks almost friendly, with its plunger in a calming shade of blue :-)

I felt very tired at the start of today, partly at least attributable to last Monday’s chemo, methinks, but also to a deflation of mood and energy as I further contemplate the nature of printer leasing contracts, on which I am still preparing a comparison study for my office.

"Just think, Dr Faustus, with our easy instalment plan and bulk toner supply options you can say goodbye forever to scratchy quills and inky-finger misery. Forever, forever—nyaah, ha ha haaa..."

I break off from this (having, I am glad to say, made some progress against the tide of demotivation) to make a chilli con carne for our informal book club in the evening. The steaming casserole is in due course positioned reasonably securely in the car and my wife and I begin the 12-mile drive into the City of London. Many are the red lights and traffic jams we encounter and it seems amazing that, at journey’s end near Tower Hill, the trip seems to have taken us no longer than it normally does. We enjoy the chill with our friends and eventually discuss the book we have all been reading, One Day by David Nicholls (now adapted into film). The book is amusing and ingeniously constructed, with sharp dialogue, and we give it a general thumbs-up. We also watch the movie trailer online and agree that many modern novels seem to be constructed as screenplays, although it may of course be that the medium of film simply influences the ways we tell each other stories at this stage in our, er, human story.

Stories and storeys, this day has them both. We drive home along the embankment of the Thames, noting that The (overweening) Shard, destined to be the tallest building in London (Europe) is already illuminated at night, even though it is not finished. Perhaps there is a health and safety reason, but it seems a huge expense of energy for an uncompleted building. The structure terrifies in the way it dominates its low-lying surroundings, being south of the river and at some distance from the other tall buildings of London, whether in the City, which lies on the north side of the water, or to the east at Canary Wharf. It will be the tallest building in the European Union, although only (pah!) ranking 45th in the world.

The Shard under construction, looming over London Bridge Station.
Its architect, Renzo Piano, assures us that, with its multi-reflecive glass surfaces it will present a constantly varying aspect to the London skyline.
Piano, with Richard Rogers, designed the Centre Pompidou in Paris, named after perhaps the most famous sufferer from Waldenstrom's macroglobulinaemia. Connections, connections.

Further red lights and road works impeded our steady progress home, but again the journey takes little longer than the usual hour.

Awoke today in good time for injection 5 (jabs are meant to be given at a similar time each day) and a bowl of All Bran, aware that I now feel back to normal, post-chemo: yesterday’s feeling of having been poisoned has evaporated. This relief will of course be swept away comprehensively by the high-dose treatment scheduled for next month, but is nevertheless an encouraging reminder that “this too shall pass”. This saying is attributed to Sufi sources and the fable of a king who asks wise men to create a ring that will make him happy when he is sad, and vice versa. After deliberation the sages hand him a simple ring with the phrase etched on it. Not bad, eh?

Leaving the loose ingredients of a loaf to take shape in the bread machine I strolled the short distance to a friend’s house for more in the way of breakfast. This was one of our occasional informal men’s gatherings to share matters of personal concern as well as food. Sometimes we have a “full English” breakfast, but today we went “continental”, tucking into croissants, fruit and coffee. After eating, the three of us—a small group today—moved out into the gentle sunshine of the well-kept garden to continue our conversation and pray for one another. In the course of the conversation, I learned that the father of one of my friends was a Spitfire pilot in World War II.

I returned home to the incomparable smell of fresh bread, an email exchange with a couple of old university friends about aspects of human consciousness (cool) and the following sight of our cat (unbearably cute, unless of course you hate cats), viz.

Awww, bless!

Friday, 8 July 2011

Hands across the water

This 7th of July has been a really good day, although I have to admit to having spent a lot of it feeling rather exhausted. The heavy-limbed weariness feels like the consequence of last Monday’s single dose of chemo, although it is often hard to know how much is attributable to that or other treatments or just to being a bit of a middle-aged blob. Since I am however currently fit and well, I am inclined to blame the chemo. The nausea has now all but gone.

The events at The News of the World have taken an interesting turn in that James Murdoch (Deputy Chief Operating Officer, News Corporation, and Chairman, News International) has announced that the paper will close after this Sunday’s edition, which will carry no commercial advertising. The last edition’s receipts will go to good causes. As damage limitation goes this is drastic stuff, but we have surely not heard the last of this affair.

Just after I wrote that last paragraph, my daughter arrived home from a post-exam trip to one of the Greek islands. Just a few hours ago she was texting me from 1400 (approx.) miles away to say she had just boarded the plane and here she is, tired and hoarse of voice (she is not a smoker, but the dreaded weed is still allowed in public places in Greece). I have been struck today by just how much we take for granted things that would have been beyond the imagination of our ancestors: the speed of travel and communication are just two examples.

In fact this has been a day of international communication. In a few weeks time, my wife, daughter and I are going to our little family bolt-hole in France (my last holiday before high-dose chemo) and there came through the door today a letter in French advising me that an inspection of the septic tank at our house is now necessary. The letter proposed an appointment on a day before our arrival and so I rang the relevant office to fix a meeting when we would be there. This being France, the letter quotes at least two statutes and is signed over an official seal by someone entitled Le Président (of the group of communes in which the house is situated). The purpose of these various laws is, as the letter elegantly states, “pour garantir la salubrité du territoire et la santé de tous”, which is a pretty high benchmark and a noble aim, to be sure. The woman on the other end of the phone knew instantly who it was ringing her, which was not a little impressive. I just hope the jolly tank is working properly when inspected.

Home from home.
Peace and birdsong.
I have also heard from kind people in the USA and UK steadily over the course of today, this time by email, as I posted to the talk lists for WM sufferers on both sides of “the Pond” that I was writing this blog about my current and forthcoming treatment. I have had a number of messages of support and encouragement in response, which I appreciate very much, and I hope that these new readers will find what I record here informative and in some way helpful.

On reflection I was a bit patronising about the limitations of our ancestors a minute ago. Here’s a picture of the boxed syringes of G-SCF awaiting use in my fridge; I have very little idea how this stuff manages to gee up my stem cells but am very grateful to have access to it.

Boxed syringes of G-CSF (in this case branded Neupogen) waiting silently next to the mozzarella and spinach.
Today was the third injection – five more to go before a blood test next Tuesday.

Wednesday, 6 July 2011

Faustian pacts

Today the allegations about the antics of The News of the World have increased in number and severity and the net of scandal has widened to envelop The Metropolitan Police. It is difficult to remember a single story in recent years that has carried such a bad odour of corrupted or even absent morals.

The physical nausea has at least abated for me somewhat and as yet I am not conscious of any ill effects from my daily injections (although this was only Day 2 of same).

In consequence I was able to do some work today, comparing the pros and cons of various proposals for a printer/copier/scanner for the church office. I have decided to set out the comparison in a spreadsheet in the hope that this format can be clear and accurate as well as interesting. It remains to be seen whether this endeavour will meet with success, but what I have learned is that there are plenty of traps for the unwary in the commercial arrangements of some companies, however bright, shiny and enticing their websites may be.

Imagine a picture of Mephistopheles at this point.

Tuesday, 5 July 2011


Happy to report that I slept soundly, waking to a beautifully sunny morning, although rain is on the way this afternoon, they say…

I was conscious though of a sense of nausea that reminded me that I needed to take the anti-emetics given me by the hospital as well as drink some cool water. I had one pill of ondansetron left, a drug that I have taken previously to good effect. Its rather futuristic name has a strong aura of effectiveness.

 Capt. James T Kirk armed with an early version of the ondansetron.

I then swallowed a couple of pills of the second drug I have been given with which to battle the waves, called domperidone. I expect to continue this for another couple of days.

Dom Pérignon, not domperidone – too much of this will of course induce nausea.
Named after a French Benedictine monk of the 17th/18th centuries who introduced several improvements to the creation and storage of champagne, e.g. putting it in stronger bottles.
Those things done the next therapeutic task was to inject myself with G-CSF. The particular type I have been prescribed, Filgrastim, needs to be kept in the fridge, so the manufacturers recommend that you take it out of the cold and allow it to reach room temperature before injecting: it is less painful that way. The only complicating factor this morning was that the cat wanted to climb up on my chair just as I was about to do the deed, but in the end all went OK.

I have been reading up a bit on the causes and management of the nausea that is such a frequent companion of chemotherapy. One source, The Mayo Clinic in The States, mentions that the likelihood is higher in those under 50, from which I take some encouragement. There is also a significant psychological component, so that managing anxiety about feeling or being sick can be a powerful prophylactic. Previous experiences of feeling unwell can also heighten such anxiety to the point where history is more likely to, er, repeat itself.

I have also been nauseated in a different way by the current allegations that The News of the World engaged a private investigator after the disappearance of the unfortunate Milly Dowler in 2002. The story is that this individual hacked the murdered schoolgirl’s mobile phone and that journalists also deleted voicemail messages from her phone’s inbox, fuelling the sadly mistaken belief of her family and the police that she might be still alive some days after she went missing. The allegation is also made that this may have disrupted the urgent police investigation by destroying important evidence. If these allegations are well-founded, then we have to ask what certain people have in lieu of a normal conscience or moral compass. My mind has been filled for much of today with the thought that they should be sentenced to clean the pavements of our capital city with their tongues.

Back on the sauce

Written Monday 4 July 2011

Today my wife and I went to University College Hospital for the first stage of the treatment designed to mobilise my stem cells (aka haematopoietic cells or HPC) and coax, or maybe bully, them out out into my blood vessels for harvesting.

The journey also involved carrying my pee—diligently collected over the 24 hours beginning at 6.56am yesterday in the vessels provided by the hospital—on public transport in the rush hour. Surprisingly heavy, not that I’m boasting. The experience also prompted the not entirely pleasant thought that we have no idea what our fellow passengers are taking with them on the trips we share every day in such close proximity. I was quite glad when the moment came, soon after we arrived at Haematology Day Care, to hand over this particular cargo in its blandly grey carrier bag printed with those hallowed words—so beloved of anyone who has had to wear those horrible shapeless NHS gowns that open at the back—“hospital property”. By means unknown to me they would be analysing  my offering to assess the health of my kidneys. Quite enough on that subject for now, but I hope of course for a good report.

We were then shown by the young nurse who would be attending to me into the treatment room where outpatient chemotherapy is administered. The chair allocated was in a corner so I had a good view of the whole space. It was a bigger facility than at my local hospital and the chairs were a bit more spacious and squashily comfortable. I tried and failed to work out the significance of the various different coloured scrubs the staff were wearing: guess there will be plenty of time for that over the coming days and weeks.

I was to receive a single two-hour infusion (a noxious drip, not a herbal tea) of cyclophosphamide, an agent I have had before, it being the “C” in the R-CHOP chemo I received in the four months between October and February last. Not my favourite stuff and my son, the medical student, says he has heard it referred to as “Cillit Bang” (note for non-UK readers: CB is a well known all-purpose domestic cleaning product). The role of this stuff in HPC mobilisation is not, I have to say, entirely clear to me, even after a couple of careful explanations by the medical team, but from what I have been able to gather from online search, there is a much better chance of harvesting enough stems cells to store and subsequently pass back to me than if it were not used.

In due course a cannula was inserted for the drip, pretty painlessly by the standard of these things—the words the kind nurses always use are, invariably, “sharp scratch now”. The first task after a short dose of saline was to provide, via the drip, anti-emetic medication against the nausea and its evil twin, vomiting, that would otherwise invariably follow chemo. Next down the line was Mesna, designed to protect my bladder against the irritation that would otherwise be caused to its lining by the waste products of the relatively high dose of cyclophosphamide that was on its way. “Mesna”: sounds a bit like a Middle Eastern sacred site. How do they dream up these names?

Now for (today’s) moment of truth: the Cillit Bang. As is required protocol before the administration of any chemo, the nurse enlisted the help of another to cross check the inscrutable contents of the large bag that was about to be attached to the drip. I was also asked to confirm my name and date of birth against those recorded on the bag. The bag was duly hung on the drip stand, the nurse, by pressing buttons on the battery-powered “brain” attached to the stand, set up the rate of the drip and that, essentially, was it for now. In due course, she checked my blood pressure, temperature, pulse and blood oxygen level but my wife and I were largely left to our own devices to read, reflect and observe over the next two hours or so.

The word “devices” is used advisedly, as my wife is enjoying the Kindle I gave her for her birthday a few weeks ago and I have my iPhone loaded with listening material. While I was aware of the creeping sinusy sensation in the bridge of my nose and forehead that is the trade mark of the drug, it did not prevent my enjoyment of a recorded series of seminars given by two philosophers from Oxford University in response to The God Delusion by Richard Dawkins. I had started listening to this while hospitalised last September, but it had been elbowed out of my attention for a while by the likes of The Sopranos, Mad Men, The Killing and Spiral (the last two being police dramas recently televised by Auntie Beeb, one Danish one French, both superior to much of what is offered in our native tongue, whether British or American). For some reason the measured responses to Dawkins—one sympathetic, the other respectful but at variance with The Great Atheist—were the perfect entertainment for these moments. Not escapism, I venture to plead, as I was completely aware of my surroundings; it felt more like an assertion of mental independence against the constant pressure to think of my disease and its immediate and longer-term ramifications.

I am not going to break the confidentiality of my fellow patients, of whom there were quite a number on this busy Monday, but will just note that a well-run care unit such as the one—thank you, thank you, thank you—I was fortunate enough to be treated in today is a powerful place to observe human interaction and interdependence. There was a diversity of ages, backgrounds, confidence, temperament and need among the patients; the staff are in turn very mixed in race, age and expertise (although it was notable that many of the staff were in their twenties). It was very apparent that a number of patients had had a more bruising encounter with The Big C than has (so far) been my experience and their fortitude was a powerful encouragement to press ahead with my care plan over the next weeks and months. The staff went about their work with quiet efficiency and great personal warmth. I wished I could have used my camera to capture, say, the intent angle, of a nurse’s head and neck as she bent to inspect a patient’s arm or came down to eye level with someone who was having a particularly rough time with side effects.

Don't go it alone – we need each other!

It was all over soon enough and I was unhooked and given some anti-emetic pills to help me through the next couple of days when nausea is at its height. I also took some more Mesna in tablet form and was given another dose to have at home at 5.30pm (the timing of this drug is precise). In the goody bag was also a number of pre-filled syringes to give myself a daily injection of G-CSF between now and the time of cell harvest next week. This stuff, you will remember, stimulates the production of stem cells in such numbers that the little fellows just can’t wait to escape the confines of the bone marrow and swim in the flowing channels of the blood. Unfortunately, as they mass in the marrow there is the likelihood that they will cause pain in my bones as well as lead to swelling of the spleen and I have been particularly warned to watch out for pain on my left side. I will keep you posted. My next scheduled visit to Day Care is for a blood test on Tuesday 12 July.

I had been given an NHS sandwich and cup of tea (not great; they did the trick though) but my wife was famished and so we took a detour via Sainsbury’s in Tottenham Court Road to buy a rather more appetising sandwich for her, together with some crisps for me (yes, I did share) and some fruit juice. We sat in the shade in Euston Square and relaxed a bit before taking the trains home.

Euston Square today.
Your blogger's feet and goody bag are visible as is a Big Issue seller by the lamppost right of centre.

My sister-in-law called by on her way home from work, having only yesterday got back from a trip to her parents in Australia. She told us about a fascinating guided train journey she had taken with her folks and one of her sisters on NW Queensland and extolled the virtues of Melbourne, nearer to her native South Australia, where her son is currently working in medical research. Sitting in the warm early evening sunshine was a good way to unwind. We also spoke of our son’s wedding, that took place on Friday 24 June. Here is a picture of the happy couple.

A symbolic representation, you understand.
They are standing on one of the number of to-do lists that appeared in our house as the great day drew near.

Sunday, 3 July 2011

Bottling it

Although today I failed, for the second Sunday running, to be either named or quoted in a national newspaper, I did get to begin the 24-hour collection of my pee in a container provided by a London teaching hospital.

On this same day, the new Men’s Singles Champion at Wimbledon was seen to nibble a small amount of the grass of Centre Court after his resounding victory.

The things we humans do…