Saturday, 30 October 2010

Early morning milk and honey

In the early hours of Sunday, 19 September Morpheus (or perhaps some other member of his rather suspect family) dished up a most unpleasant nightmare.

In the dream someone very dear to me was staying at our house and was taken violently ill. I am not going to say who was; even such a fleeting vision distressed me that much, so great was the aura of fear and indignity that surrounded it.

To anguish was added inconvenience as I immediately woke up. It was 5am and I was feeling the all-too-familiar symptoms of acid indigestion: sharp pain and a burning sensation in the chest that periodically gives way to a dull ache. This has been a feature of my life on and off since my teens, bananas then being quite likely to trigger an episode. For some time before my WM diagnosis the frequency of attacks had subsided but I still have a supply of omeprazole—a proton pump inhibitor (“PPI”)—a pill not a machine—at hand to quell the production of stomach acid. Excess acid and reflux of it into the oesophagus are a risk of steroid medication and, as you know, I am currently on prednisolone and have been prescribed lansoprazole (another form of PPI) to address the problem. This last is the first pill I generally take on waking and so I did on this occasion.

I also had lower-back pain: quite a frequent visitor, that one. Hypnos having therefore definitely absented  himself for the time being, I decided to add self-medication to what had been prescribed and went downstairs to make some stomach-easing warm milk spiced with clove and cardamom and sweetened with honey. This concoction generally helps but its taste is also very pleasing. My hope was also that this ambrosial drink would entice Sleep back. Greek or Teutonic archetypes—I am not fussy, just so long as they turn up when wanted and make themselves scarce when not.

I hesitated to include the spices because I had just seen guidance from The Lymphoma Association indicating that peppercorns can be harmful to the interests of immuno-compromised individuals. It is true that spices can play host to pathogens, but I leaned in favour of admitting clove to my drink as I was mindful that it had a long therapeutic history, traditionally as an anaesthetic nostrum for the sore gums of infants, but with a more recently recognised role in the reduction of bodily cholesterol. Cardamom’s refreshing warmth makes it a favourite with me but the rest of the family do not share my enthusiasm. I sometimes however sneak it into my cooking by grinding it up, although nothing really beats the joy of biting down on a whole pod!

Here is the drink just after the honey was added.

Beware the lurking peppercorns...

I went back to bed—my stomach feeling more settled—and dozed pleasantly for a couple of hours or so.

Soon enough it was time to set off for church and to continue the dance begun the previous Thursday evening. The congregational worship was powerful and joyous and I was able to play with a forcefulness and assurance that belied the weakness my body felt.

The sermon was by a visiting speaker who has been involved extensively in developing the Alpha Course (an introduction to the basic elements of Christian faith). One of her key points was that challenges change us, while another was that Christians need to ask themselves how desperate—her very word—they were to seek Jesus: in other words to involve him in all areas of their lives, not just those they found convenient to expose to the searching divine light.

Then she dropped this bombshell, summarised as: “If you were given a terminal diagnosis now, what would you do differently? I suggest that you would live every day as if it were your last”.

I could have leapt straight to my feet and taken the platform to tell my recent story. Culturally, basic Englishness restrained me as did, more seriously, a strong intuition that this was not the time to bring my news to a wider audience.

Readers, my case is not as yet terminal, but I have a disease that is already nasty and fraught enough with possible complications to prove deadly if left untreated.  I will however now tell you what I would otherwise have said if I had been given the microphone: that what fell away from me more or less in the instant of receiving such news as we all fear was a lot of unwanted, time-wasting rubbish. The accompanying risk was, as I have previously recounted, to travel the whole range of abandonment and succumb to despair, losing sight of things of lasting value and importance: matters of heart, value and intellect. If however we can step back from that sheer drop into inconsolability, the hope is that we will be able to turn around and see just what a glorious green, flower-strewn, sunlit meadow we have been standing in all along. What is more, we are free to move at will in this landscape and linger before whatever sights attract us there, to feel the gentle breezes and catch the distant sounds they bring to our expectant ears.

I continue to experience this landscape each day, in spite of the temptations, mercifully few, to go back to the dark precipice: such come when there is bad news from the world at large or in moments of nausea, in bouts of vomiting, or even in the sheer tedium of continuing symptoms and of having to take so many drugs. I cannot ignore that I have cancer and that this has changed my life in ways that are not always welcome, but there is a nugget of gold hidden in the dungheap.

We dare to believe that God came down to the dungheap  at a moment in history and in the person of a man, so that we might be raised with him to eternal glory.
There will be jokes in this blog, but this is not one of them.
I was about to go through a darker few days, but for the rest of that Sunday I was blind to the implications of the excessive body heat, the extreme tiredness and the partial loss of appetite that gripped me on my return home from church. Tomorrow was another day…

Sunday, 24 October 2010

A day of men and money

I promised you breakfast: not just any old breakfast, lover though I am of croissants, jam and coffee in the right setting, that is to say, France. What was in prospect by the time we reached the end of the last entry was nothing less than “the full English”, that miraculous gathering together of tastes and textures, mainly intensely savoury but with moments of sweetness from tomato, baked beans and even mushrooms (mind you, one of my closest friends once felt sufficiently at liberty to say that my sense of taste was eccentric).

I am afraid your experience of breakfast on this occasion is going to have to be virtual, this being cyberspace, but it is a wonder of our biology that the memory of the breakfast I had on Saturday is causing me to salivate even now. It is a fair bet also that these sentences will have triggered some happy breakfast memory in you that produces the same effect on your physiology. Here is a consolatory picture.

Oh my my!

The breakfast I ate on this particular day was similar, although the eggs were scrambled, there was no black pudding and there was fried bread instead of potato—you see, even something as Dionsysiac as the full English can have its geeky side. I was in the company of three other men (at the house of one of them) for what has become an occasional meeting of friends to support one another and pray for each other’s concerns.

There is a lot of misunderstanding of how men generally communicate with, and relate to, one another, although it is generally accepted that men will converse about things—both material (“stuff”, artefacts and the like) and immaterial (for example, ideas, politics, organisational dynamics)— whereas women’s conversations are about feelings and relationships. There are always exceptions but this is broadly true, explaining why men’s telephone calls are more often than not about the exchange of specific information and are in consequence relatively brief. Oh go on, shoot me down in flames as an unreconstructed dinosaur, as the world of work and business tends to blur the distinctions between typical male and female discourse (just watch The Apprentice, now in our screens in real time, although not as yet in this blog time). What I am getting at is that the degree of emotional satisfaction that men get from talking to each other about stuff is pretty comprehensively underestimated, if not—more sinister this, or am I just being paranoid?—actively down-valued. Men attach a lot of feeling and meaning to stuff that they are interested in.

So, we talked about money, politics and our working lives as we enjoyed our juicily wonderful, though not over-indulgent (trust me), breakfast. Yes, then we moved on to more personal stuff, which, as you will understand, must remain with the four walls within which it was uttered. So, chaps can do emotions…

In case all these carnivorous images and references are getting the vegetarians among you down, let me show you the gleaming, life-enriching produce brought home from her allotment by our host’s wife.

Lovely fruit and veg with the tools of the trade.
Five-a-Day and then some!

A fair part of the day that followed was spent wrestling with financial things, which always take me an age, as with any field in which one is not blessed with confidence. I had managed to overdraw my main account by a three-figure sum, which, happily, I had elsewhere but for a while I thought things were more grave than that.

A quiet, cosy evening followed during which my wife and I reflected on the days of diagnosis and initial shocks. We realised with gratitude that we were both less on edge about the future. As my wife said, “we couldn't have lived that intensely all the time". In the minor and quotidian is often a merciful rhythm of release.

There is one breakfast that can sometimes trump the English, namely the American. Please indulge me in one more calorie-burdened image; events are about to take a more serious turn and we need some comfort food.

Does this not make you go weak at the knees?
Forget your arteries for a moment and revel...

Thursday, 21 October 2010

I blame the meds

You have to wonder about the workings of the human mind and subconscious…

I had been having some very strange dreams in the days (or rather, nights) we are now recalling and the small hours of Friday 17 September 2010 produced a typically florid example: my forehead started bleeding spontaneously and profusely (in my dreaming state) and I reared up (in my actual physical state) feeling choked and gasping for breath. Not very nice at all, but mercifully brief. On other nights, I have had fantastic visions of colourful quirky fairgrounds, with exotic people turning into abstract shapes or animals. At one point, the folds of the pillow under which my arm was resting turned into the pointed feet of a huge spider pressing down into my passive hand.

Bigger and more spikily fantastic than this, I am afraid!

These scenes present themselves—paradoxically with some conscious effort on my part at shaping them, such is the way with half-waking dreams—as I am trying to fall asleep. As a result I wake up abruptly, then doze again until another dream episode unfolds languorously, then turns nasty, so that I wake again. There are typically four or so such sequences until the tardy Hypnos deigns to turn up and release me into full unconsciousness.

The watches of the night are when the weird stuff happens to a lot of people and restless insomnia can seem the cruellest of punishments. I will talk more in due course about other sleepless moments and how I deal with them, but things generally look much better as the rising sun begins to assert itself (Homer referred to “rosy-fingered dawn) and by full light at least some sort of calm has more often than not returned to the battered mind.

I have to recall that, not only is my blood chemistry deranged by shortages of this and excesses of that, but also that I am taking onboard a heady mix of exotic substances, now entirely free to me as a cancer patient of the NHS. Perhaps the most likely culprit is the steroid prednisolone, the one that might have made me get up and do worthy energetic domestic tasks at unlikely hours but has so far spared me such slave-driving.

A wonderful and quite long walk was the perfect medicine to drive away these visions and ground my experience on terra firma, whose sights, sounds, smells and textures are no less fascinating and indeed far more beautiful than any drug- or pathology-induced fantasy. At a reasonable pace we (I am with my son and his girlfriend) take in an art exhibition at Orleans House Gallery and cover most of the riverside distance between Twickenham and Richmond. So now you know what area I live in, but you had possibly guessed that already (the black walnut was a bit of a clue).

Orleans House Gallery
The Octagon is all that remains of a once substantial riverside house.

Tomorrow we will have a full English breakfast: another blow struck for sanity!

Monday, 18 October 2010

Dancing before the Lord

I am not generally what you might call “a joiner” but on Thursday 16 September 2010 I made an exception.

I have referred earlier to the The International Waldenström’s Macroglobulinemia Foundation (IWMF), the Florida-based organisation that supports WM patients with a variety of resources (such as an online discussion board and numerous printed materials) and funds research. As my wife and I stood by the cereal bowl on Friday 10 September, affirming that we were in this struggle together in the midst of the pain of recent diagnosis and the uncertainty of ultimate prognosis, I found in myself a rare resolve.

Waldenström’s You-Know-What is sometimes referred to as an “orphan condition”: a Billy No-Mates of the medical world, too rare to attract serious research funding. There are currently about 1,500 new cases diagnosed in the USA every year, giving a total of cases in that country at any one time of around 10,000. To put that into perspective, the US population at the time of writing is 310,510,047 and counting (see US Bureau of the Census). There are 65 registered with the UK arm of the IWMF, and guess who is the 65th? Yes, in short, readers, I decided as I assembled my new drugs for the first dose, to join up; to salute the flag and to recognise that I was part of a select—but even from what little I had so far seen—clearly an energetic little band. This condition needs all the friends it can get and I felt it as a duty to pay my dues and sign on the dotted line, or rather to type details into an online box and give the credit card a modest outing while going about it.

I would argue, as others have already done in the course of justifying research into the very specific and circumscribed effects of brain injuries, that by concentrating on a limited area of research one could throw much greater light on the whole picture. Examination, say, of a sudden craving to consume coal after a bang on the head (sorry, this is not an actual example) may illuminate a by-way among the neurones that leads to a broader avenue. In such a context, the whole notion of an “orphan condition” is questionable.

Oliver Twist, perhaps the most famous orphan in English literature.
As pictured by the incomparable Ronald Searle.

Joining up felt good. When I have the energy I will campaign more. In the meantime, as I hope is clear, this blog is itself an instrument of war.

On this day I also decided to revisit that ultimate chattering device, Twitter. I signed up for this about a year ago, mainly to see how it worked but swiftly came to the conclusion that it was not my thing and did not use it, although I kept my account open. Back I went then amid the Stephen Frys, the Jim Carreys and the hordes of John and Jane Does who tweet incessantly. I signed up to “follow” a particular hero of mine, Kevin Spacey, and immediately received a tweet from him announcing that he would shortly (the date has now passed in real and blog time) be taking part in a fund raiser for Leukaemia and Lymphoma Research. What was then rather fun was to reply to this (in my guise as @drumtwit) with a tweet announcing this blog, meaning that all who follow Kevin would receive notice on their own account pages of the efforts of, ahem, yrs truly. Effortless and strangely liberating, as only cyberspace can be.

In the evening was worship band practice for the following Sunday and I decided to go, not only because I am one of those who occupy the percussion “chair” but also as an experiment to see how drumming would affect (or be affected by) my illness. So, the flesh might be somewhat weaker, but the spirit was willing. My current weapon of choice in the struggle for light is a box that you sit on, called a cajon (Spanish for, er, “box”): here a picture of this wonderful instrument.

The Cajon
I think it's love...

Behind the upper part of the light brown playing surface is an array of twisted wires (“snares”) that amplify and dry the sound to a pronounced “crack” while the bass tones in the middle of the head are warm and simply gorgeous. The instrument is adaptable to many styles of music, but on these occasions I play it rather like the snare and bass drum of the conventional Western drum kit, though not as loud! To assist the sound balance with the rest of the band, a microphone is clamped inside the hole visible in the dark side surface and angled inside the body of the drum towards the playing surface so that the tones are amplified by the church sound system.

Enough of this geekiness; what did we do on this particular evening in the otherwise empty church? We practised, yes, but we also had a strong sense of being in the divine presence. Energy beyond my normal current range was given me to play with a focus and power that I do not always feel. When one particular song ended, we remained still, caught in the holy fragrance of the moment. An experience, in truth, mediated by endorphins and the other delightful chemicals of our makeup, but need we really stop there and deny that what we felt was also of the spirit, filled with meaning and a sense of a great love bathing us?

This is—more than ever now—why I drum: as an act of worship and a dance before the Lord.

King David dancing.
Icon by Lasha Kintsurashvili of Tbilisi, Georgia in the Prophet David Church, Tbilisi.

"David, wearing a linen ephod, danced before the LORD with all his might, while he and the entire house of Israel brought up the ark of the LORD with shouts and the sound of trumpets."
2 Samuel 6, 14-15

"...the fact remains that we are invited to forget ourselves on purpose, cast our awful solemnity to the winds and join in the general dance."
Thomas Merton, New Seeds of Contemplation (last sentence)

Welcome distractions and some musings on time and memory

Hello again. In narrative terms we have now reached Wednesday 15 September but I am writing this some time later. There has been a gap of nearly five days since the last posting, because (in actual life, as distinct from “blog life”) I have not been feeling too great. 

Before I drive you too far into the realm of Hypnos, or maybe as far as the domain of Morpheus, with such circular nerdiness, I had better hastily explain where we are going with this. In short, I have lately been pondering some aspects of time and memory and the relationships between what we refer to as “real time” and what we could call “creative time” or, to be more specific, “blog time”.

Give or take the reservations of cosmic physicists, our basic perception is of time trundling along at a pretty consistent rate, although we can generally look back over any day and say whether it has gone fast or slow, or maybe different portions of it at different rates. There are also gaps in real time that are not evident or mirrored in writing—unless of course you happened to have noticed that there was a gap of about 12 hours between the writing of this sentence and the previous one (I kid you not). The day on which I write this has in fact turned out to be an extremely good one, but it will be some time before I get to writing about it. Infuriating, isn’t it?

Yet we sense a unity across all these gaps and breaks and the interruptions and discontinuities that arise from our contrasting activities and interests in any given day. The uniting threads are our memory and consciousness and with those our sense of personal identity. The matter of personal identity was, by the way, regarded by my university philosophy tutor as a not especially interesting subject of philosophical enquiry. Not sure if he has changed his mind on that one, but you can find out by reading his highly regarded book Think. Here is a picture of him.

Simon Blackburn
Professor of Philosophy at The University of  Cambridge, previously Fellow of Pembroke College Oxford
A very fine and generous tutor indeed

Alongside the issue of time, I have also been thinking about the nature of energy and creativity and the whole process of trying to capture experience in writing. A friend some weeks ago (on a date yet to be blogged about) lent me a wonderful little book, If You Want to Write by Barbara Ueland, in which the late author offers powerful encouragement to everyone to write without fear about what is in their hearts and minds, William Blake being for her a particularly powerful example of this principle. There is more nuance to this, as you can imagine, as she makes clear in setting out how she activates her mind for the process of writing: almost by doing nothing and letting things present themselves to the conscious mind, her favourite means to stir up this process being a long meditative daily walk.

That such a process is typical of the creative enterprise was borne out by a conversation with another friend a couple of days ago—in real time, that is, therefore simply ages away in blog time at current rates of production. She had only the day before heard Brian Keenan speaking about how he wrote his book An Evil Cradling. HIs mind apparently blank and numb some time after his release from hostage captivity in Lebanon, he simply started to write whatever came to mind on various sheet of paper that he spread around the space he had available. In time he began to see connections between the content of different sheets and so a structure emerged and with it a greater fluency to his writing, leading in the end to a finished work that is regarded as a classic.

So, writing emerges not always instantly from the raw data of the day-to-day. The moments of daily experience are like seeds that present themselves to consciousness and then fall into the rich mulch of the unconscious, where with patient nurturing, or maybe just leaving alone, they can be coaxed back into the light of day and shared with others.

This is all rather a long way round of saying that by 15 September I was feeling more “normal” in my thinking, more at peace, more grounded: able to reflect in a more sustained way and not so overwhelmed by raw emotion. I took this picture of some more consoling domestic angles, this time in our kitchen.

What IS it about straight lines and their pleasant meetings?

I have said very little so far about my work as a church administrator, which I have continued to carry out, with some gaps and limitations, while I have been conserving my energy and defending my limited immune system by being based at home since diagnosis. One matter I have had to deal with throughout this time has been the effort of one of the two churches I work for to recover the painted memorial bust of an early seventeenth-century physician of some distinction, lost to the church nearly seventy years ago in the fog and confusion of the London Blitz. An interesting task, as you can imagine, and continuing. So I am not just a cancer patient, but have a parallel life, indeed parallel lives. Indeed we are all like this, but it is not always easy to stop and reflect on it.

So, a time of grounding and reflection. Tomorrow (blog time) we will go dancing…

Tuesday, 12 October 2010

A discovery and sleep returns

On Tuesday 14 September 2010 I made a discovery about our famous Frenchman, first pictured in this blog entry and subsequently here.

Here he is again:

M Georges Pompidou (1911-1974) RIP
Still managing to make smoking cool. Was it a Gauloise, a Gitane or quelquechose d'autre?

Georges Pompidou, long-time Prime Minister of France under de Gaulle and his successor as President, is probably the most famous person to have suffered from Waldenström Macroglobulinaemia. His illness was mysterious at the time and the subject of much speculation. As you can see from his second appearance in this blog), where he is in the company of the infamous Jiang Qing (Madame Mao) and the much more highly regarded and benign Zhou Enlai (Chou En-lai), he became rather bloated. It is recorded that he took to wearing his hat low over his face to hide his appearance from view and became bad-tempered with his staff. There was a political crisis in France as a result of puzzling non-appearances by him on the public stage, the people needing a visible leader.

No doubt the poor man felt absolute rubbish, having apparently ploughed more energy into his work than the maintenance of what health he might otherwise have hoped for; and I do not know what sort of treatments would have been available in his day. It looks from the bloating clearly to be seen in our second photo as if he was on heavy and sustained doses of steroid (as am I, although the dose will be tailing off over the next week or so to avoid just such side-effects). For those of you interested in the man, you can read a whole book about his  political life gratis here on the fabulous internerd.

In the modern way, after his death he sort of metamorphosed into this:

The Pompidou Centre in Paris
Look, pipes on the outside and everything, maybe to convey away all the cigarette smoke?
Perhaps the first building that alerted the world at large to the work of Richard Rogers
(now Baron Rogers of Riverside, born 1933).

In the evening we received a visit from M, the husband of A, who left the beautiful little floral display pictured in yesterday’s entry. M was, like his wife, full of the wisdom borne of experience, in his case from the perspective of the anguished partner looking on, at risk of being left behind emotionally and physically. My wife and I were so grateful for his time, so freely given, and his insights. He and I a little while later talked on our own and prayed together for one another and he continued with grace and care to offer some very useful pointers to coping in the days ahead. This was a beneficial time, giving a welcome chance for some grounded thinking.

So eventually to bed, this time to sleep rather better than hitherto since the time of diagnosis. My mind—even at the best of times, which these are not quite—tends to race before sleep descends, probably not helped by my tendency to read or watch BBC iPlayer later than is entirely good for a person (Merlin–don’t laugh; actually rather good—and Spooks being currrent favourites). Doctors and other caring professionals rightly care about the length and quality of sleep, knowing its restorative power. Ungrateful, naughty me, I am often reluctant to welcome the unconsciousness of sleep, just in case the day has that bit more to offer in the way of piquing my interests. This is a mistake really, as in sleep, under the right conditions, the system can devote its energies to self-maintenance.

Mind you, I have a bit of an excuse at the moment since my system is full of strange and sometimes combating chemical agents: chemo to kill my cells and steroid to do some of the same, but also acting as a stimulant. It’s a strange time to be in this body and have this mind.

Enough. I will leave you with a picture of Morpheus, the Greek god of dreams, sibling, according to the ancient poet Hesiod, of Hypnos (Sleep) and Thanatos (Death). Interesting what these relationships tell us about the psychology of the ancients and ourselves—are we so very different?

Morpheus, Phantasos  and Iris.
Phantasos was the nephew of Hypnos and was left in charge when Morpheus came to earth to bring dreams; he appears in dreams as inanimate objects.
Iris is a messenger of the gods, so this little lot are all what we might now call "in communications".

The painting is by Pierre-Narcisse, baron Guérin (1774-1833) and the work is typical, it is said, of the rather pompous style popular in the French First Empire. Now who's getting pompous?

Anyway, it's all very French and sensuous, indeed sensual. The light is wonderful, n'est-ce pas?

Sunday, 10 October 2010

The fruits of experience

Felt good on Monday 13 September. The weather was still pleasant and a friend (“A”) was coming round for morning coffee.

A is herself a cancer survivor, who wrote wise and wonderful emails to her supporting friends as she was undergoing treatment a few years ago. In many ways she is an inspiration for the writing of this blog. Among many other activities, she now involves herself in a patient/hospital liaison committee at our local hospital.

She has also told me that there is a day centre at our local hospital, which offers various resources and facilities to cancer patients, including free sessions of various complementary therapies and counselling. I have yet to investigate, being  still unsure (even as I write this some weeks later) what level of such support I would find helpful; I am also still adjusting to the reality of my disease and the notion that I am a “cancer patient”. These thoughts and ponderings go on as the round of appointments and the sheer chemical assault of the various treatments progress and bring their own secondary, maybe even tertiary, issues.

A offered the benefits of her experience and her grounded cheerfulness was a great source of strength. She also brought a little bunch of flowers from her garden. Here is a picture of them.

Flowers brought by our friend.
They stayed bright for quite a few days.

The outdoors has been so inviting as autumn approaches this year, not least on this particular day, and so I asked my son (“G”) to accompany me on a walk down to the river and through an adjoining park. G is a good walking companion, among many other qualities, and it was wonderful to stroll at a purposeful but undemanding pace among the mature trees and river views virtually on our lucky doorstep.

One particularly mature tree was on our route. Here it is.

Black walnut tree
It may be nearly 300 years old
(but English Heritage has removed the plaque about its history)

I muse on the life of this tree, wondering what a tree gets out of life, if that is not an absurd question (pace Prince Charles). Our animal life is so brief, compared to what some trees are capable of, but we range far and wide in thought, action and imagination. The trees in their turn give life, shade and many different objects to us: from the shelter of our homes to tools, implements and ornaments. No wonder they are regarded as sacred, or at the very least with awe. Here is my son looking at the tree.

My son's legs
His great aunt, on first holding him as a baby, pronounced that he had "lovely limbs".
I have never seen any need to disagree with this assessment.

Continuing on our walk we loop back to the river, where on the towpath (not that much towing goes on these days) there are a number of wooden benches with memorial inscriptions. This one particularly struck us, not only because it had been further ornamented with flowers in memory of the person commemorated, but also because of the truth and beauty of the thought conveyed in the skilfully carved inscription.

Heido Whillock RIP
All you need IS love; life begins and ends there.

The very sage psychiatrist who first diagnosed depression in me in 1987 said that the essence of that condition (of which there are many facets and nuances) was an inability to love. Dislocation from the ability to make and receive loving contact is the very essence of the depressed state and therein lies its torture and torment: seeing life happen for others “over there” as if through a separating glass screen; seeing but not feeling and sensing the hell of that disjunction.

I jibbed initially at his assessment, although it was lent a considerable weight by his patent authority and experience, as well as by the bonuses of his Central European accent and Einstein hair. Over time and two subsequent episodes needing medication (the drugs getting better each time), I grew into the knowledge that what that wise, kind man had said at our first meeting was true. I am reminded of the inner dialogues I have conducted on the question over the intervening years until now, my present crisis. I am able to be thankful that not only am I no longer depressed in that original sense, but that I am connected by a mighty love, not only to my very dear family and friends (more and more of whom were showering me with messages of kindness and support almost by the hour) but to the very Heart of Life that beats at the centre of all things.

As I contemplated the bench, it was as if it became a sacred spot. I was glad that the late Heido Whillock loved others and was himself loved and that I could say that of myself too.

Reflecting further now, I wonder if we are so very different from trees: acquiring resilience from the storms of life, bending and shaping ourselves in answer to the winds that blow, the rain that drenches and the light that falls. Maybe the battles for health fought in the past have shaped me for the present struggle and like a tree I can stand, if not for quite as long, at least for my allotted season.

Thursday, 7 October 2010

Here I stand

My first venture to a church service following my diagnosis was on Sunday 12 September.

This proved to be quite tricky: exposure to a larger group of people, some of whom know me very well; the urge to share personal news with people who needed to know; the danger on the other hand of spreading myself too thin.

Sat next to me was a dear friend who lost his own wife to a blood disease bravely borne in the power of faith and with great openness. I had had the great honour of playing drums at her funeral in 2005. To have him by my side gave me heart and courage for the sense of vulnerability that I had on this particular day.

It was the hymns and songs that presented the greatest challenge. So many of the words, I quickly realised, were proclamations that our lives are shot through with value and meaning in the context of eternity and in the power of Christ’s death and resurrection. The challenge to me very directly was whether I actually held to this or not. Did I really believe in these moments, more than ever conscious of the insecurities of mortal existence, that death would not be the end? I struggled to affirm what I have believed for many years since childhood and through many different circumstances, some very unhappy indeed, though none quite such as I now faced.

We sang “in Christ Alone”, a fine modern hymn of which I am particularly fond, written to a brave rolling Celtic rhythm and melody:

“No guilt in life, no fear in death
This is the power of Christ in me
From a life’s first cry to final breath
Jesus commands my destiny

No power of hell, no scheme of man
Could ever pluck me from His hand
‘til He returns or calls me home
Here in the power of Christ I stand”

My whole life in His hands? Yes, I could sing it, just as we had at my father’s funeral, also to a drum accompaniment, also in 2005—what a year that was! Many, some of them of course the usual suspects, would regard all this as self-delusion, a denial of the obvious smack-in-the-face facts of our human existence. Would it not be braver to stand alongside Bertrand Russell, facing with a proper pride the ultimate impersonal emptiness of a godless universe? I come back to the observation that faith and the hunger for meaning is a natural element of our humanity, wired into our very fabric and makeup. So much of what we rail and kick against are the trappings of religious practice, sometimes gaudy, often tired and tawdry, rather than the gift of God himself and His love poured out for us in the identification of Christ with our frail humanity. It is this that enables us to transcend circumstance, to experience it as bathed in the light of eternal significance. So, my dear readers, I was able to stand in that moment, felt once more at peace and was grateful.

I spoke to a number of people after the service, somewhat apologetic to have to detain them with my news. Our vicar and his wife, in post for just over a year, listened with care and attention, a truly pastoral concern. I knew I would have the support and prayers of the staff team and was very heartened by this, rejoicing to be part of this fellowship of care.

The weather was again kind and so we went for another stroll by the river, still tidal near us and this time rising above its banks. We watched its inexorable progress, striking up conversations with others who were intrigued by the behaviour of these suburban waters.

In real time, some weeks after these events, I am going to my bed to rest for tomorrow, which is to be a day of challenge. You will read about it here in due course…

Where I go on Sundays

Hope brings a suitcase

Saturday 11 September was destined to be a day of reflection and some resolution.

It began however rather less promisingly in the wakeful small hours with tearful calling on God to spare my life. It is far far better to give in to tears than to hold them back: calmer feelings can come sooner that way and I began to feel more peaceful after my surrender to the wave of emotion.

As dawn came and the easy rhythm of the daylight hours asserted itself, it appeared as if this episode of distress was part of a larger working through of the aggregate of emotions that had—or so it felt—simply landed on me in the preceding few days. After all, I had not engineered most of these recent events, but merely cooperated as facts were presented to me and procedures carried out upon my person: I had simply shown up when summoned, so that the overall tone of my life at this point seemed to be one of resigned passivity.

What better time, then, for my cowed psyche to reassert itself, move to centre stage and rebalance my thinking?

I found myself meditating on the time of death, not just mine but the inevitable, for the most part mercifully unpredictable, mortal endings of all of us. I was drawn to reconsider the picture I have used for my profile, which shows an “infinity pool”, this one being at a very swanky health club in Monte Carlo, where my drumming partner and I had gone in January 2003 to run a team-building exercise for a well-known security company. This had involved an energetic session the previous evening surrounded by Prince Rainier’s gleaming collection of classic cars, in the course of which, among many other choice moments, a former Commissioner of the Metropolitan Police proved himself no slouch on a West African djembe. The following day we were able to take a gentle wander through the mild warmth of the ridiculously opulent principality and this was how we came across the pool.

The pool on the edge of the world

The pool being on a level with the sea, it was hard to see where the fresh water ended and the salty Mediterranean began. I had a vision of us all walking through the pool to the sea, none of us knowing where the edge was between the two. We would each reach the infinite sea at a different point on the undulating edge of the temporal pool, but reach it we surely would. In a sense therefore, nothing about my life had essentially changed and I was not marked out and isolated from all my fellows. All that had happened was that I had been given the opportunity to think about my mortality in a new way, as if a marker had been set on a route mapped for me before the beginning of time. I therefore had a chance to live my life in a more focussed, determined, concentrated way. As I said to one friend, the colours of my life, even the mundane parts, had been turned up and I was living in Technicolor (probably old-hat technology in this digital age, but there it is). How could this not be a great gift and a blessing?

One of my heroes is my old Latin master—referred to in one obituary as “a schoolmaster of genius”—and he came to my mind around this point. He left us, his fortunate pupils, with many sayings on his retirement, including this one from the comic playwright Terence:
“Homo sum: humani nil a me alienum puto”
(“I am a member of the human race: I consider nothing human to be foreign to me”).

Here then was precious encouragement to think openly and without fear about anything under the sun that was part of the human experience, even the edgy scary stuff about the end of life, loss and departure and what those can mean.

Some resolution was granted me then and a gentle day ensued, which included a walk with my wife by the Thames, about 15 minutes from our house, in the lazy sunshine of the Indian summer.

A good day.

John Milton (1608-1674), another mighty poet

"The mind is its own place, and in itself
Can make a Heav'n of Hell, a Hell of Heav'n"
Paradise Lost, Book I, 254-255

I quote these words, put by the poet in the mouth of Satan, with some trepidation and out of context, but they do assert a universal truth about our psychology. We are given a chance to choose our attitudes.

Monday, 4 October 2010

Horrible thoughts and new breakfast options

After a disturbed night of some sleep, I awoke on Friday 10 September feeling quite optimistic.

The previous evening I had dipped a toe into the information pool available about my condition on the internet, in particular the IWMF website (which has since received a welcome makeover). I had emerged reasonably sanguine from the experience such that, lying in bed next morning talking to my wife (I will call her “C”) about whom we should tell “our news” personally, I offered the opinion that there would be no need to be too dramatic. Unknown to me, my dear wife had spent much of the previous evening doing her own researches, with a rather different outcome from mine.

My cheerfulness proved too much for her to bear and these were the blackened bitter grains of the harvest she now offered me with a small voice and tears: “it’s not good: five to seven years…”

Shit, now I was scared, God... The ground once again shifted beneath me as I faced the darkest fear that had assailed me—us both—when I had first come home with the news: that my time on this earth would indeed be short and that I would be taken from my home and my family before I had seen my children grown up and established; that my wife and I would not grow old together, exploring National Trust tearooms, sharing gentle walks and cycle rides alongside French canals…

Truly horrified, I just managed to step back from the brink of these grim thoughts, remembering that statistics require interpretation. The blighted harvest was based on old data and older patients, this wretched disease typically being diagnosed around age 63 or so. I was sure I had read that there were sufferers still alive after 20 or more years. Surely I stood a chance of being among their number. The thought of this chance was enough to restore essential hope in that moment of crisis and remains with me still. Without such hope I will surely die inwardly, no matter what happens to the shell of my body. I cling to the wisdom of those who have lived with this thing longer than I when they say:
“Relax and settle in for the long journey of discovery and reflection. Resolve to take action and get involved and become an active participant in your own health care. In the process of becoming a cancer patient, and with all the pain this brings to patients and their loved ones, many patients find new clarity and purpose in life.  Many are led to make life choices to enhance their time with loved ones and engage in the use of ‘filters’ to clear out their lives and make decisions about what they now want to do with the time ahead. Many patients find this to be a unique growth experience.”

Mercifully, having named the fear, we were able to embrace a common hope as we stood side-by-side a short while later by the breakfast bar surveying my collection of pills. C, a special needs teacher, offered to draw up a table to help me keep tabs on the tabs, as she does for some of her pupils. In the end, this did not prove necessary, but I took heart from the confirmation that we were in this together. In due course the pills were consumed, the chemo having to be kept in the fridge, like some organic thing. There were many pills and much water needed to down them all, leaving me somewhat bloated but otherwise in good order. This was the first meal of many such and so far we were doing all right.

I made a call later in the day to my mother, it being (of all days, oh heavens!) the anniversary of her wedding to my father in 1949. Dad died in 2005 and my brother and I had sent Mum flowers. She was thrilled with these but I had to waste no time in telling her what had been happening, now that diagnosis and treatment were mapped out. Mum is in many ways a formidably strong woman of 85, but her pain on hearing what I had to say was palpable. She was dignified and understanding in the midst of her distress, listening to my account and gently raising practical questions about the future of my work and finances, all the time conscious that I might not have much energy for too many enquiries. Our conversation closed with her praying for me, one of the simplest and most profoundly wise prayers I have heard from anyone. She affirmed that I was not alone in the illness and commended the whole family to God. It was enough and my spirits were lifted.

I also called an old friend (“J”), who is a lay member of a Franciscan order and a writer who for many years worked as a counsellor in a GP surgery in South London. She is the perfect listener and also close to God. As she too prayed, she saw and described to me the sun making the shape of a cross on her floor in Worcester as it shone through the window. She sensed too as she prayed that the illness would have a significant impact on the work that I did over the rest of my life. This observation was unbidden by me, but made perfect sense. Humbled by the support I was already beginning to sense from J and other friends and family, I spent the rest of the day in relative peace.
Serving suggestion.
Chemo tablets are the little brown items in the dark bowl.
Get well cards begin to gather in the background.

Sunday, 3 October 2010

Dr W prescribes

All written out for me...

It is a very different clinic reception that my wife, son and I enter on the morning of Thursday, 9 September.

The doctors are working to a full diary and it would have been standing room only had not an older couple shifted seats so that we could all sit together. Like me, many are accompanied by family members and I only see one person obviously on his own, a neatly dressed middle-aged man contentedly reading and looking extremely well. I play “spot the patient” and conclude that a tightly held appointment card is the clue.

All ages are represented in this small community of the haemotologically challenged, although there is a preponderance of the middle-aged upwards. Dr M is in plain sight, emerging from her room to speak to the two receptionists, to call patients or occasionally to leave the clinic suite altogether. She wears a heavy expression although her manner is as calm as I had experienced it a couple of days before. She is rounded in the shoulder as if burdened with the necessity of having to give too much bad news to too many people.

Two side rooms are also in action, one for the administration of anti-coagulant injections and one for the drawing of blood from each patient, including, in due course, me. Another two samples are duly and efficiently taken and soon on their way for assessment of my cell counts and other purposes more esoterically biochemical.

As we wait for the call from the doctor herself, my son and I share a game of Trivial Pursuit on my phone. You are right if you think that I am to a degree obsessed with this device, but in short it has proved a lifeline and entertained me through more than one long night watch over the last few weeks, as you will hear more of in due time.

Gallows humour comes from a weak looking man being wheeled through from his appointment with the doctor, on his way back, I would guess, to a ward. Clad in the weary serenity of the truly sick he tells an old lady, there with her husband, “I’ve been bad, see, and that’s why they’ve kept me in longer. That’s what happens, if you don’t behave…” 

Dr M now calls me in and, after brief introductions to my family, we all sit down to receive confirmation that, following the bone marrow biopsy that has left me with a bruised pelvis, the diagnosis is indeed Waldenström macroglobulinaemia (or—to raid the hard-pressed alphabet still further—lymphoplasmacytic lymphoma). So, the club of which I knew nothing a couple of days ago has embraced me as its newest, dazed, member. Treatment, which is briefly summarised, will begin immediately and consist of the following tablets:
  • Chlorambucil (aka Leukeran): this is the chemo, a cytotoxic (“cell-killing”) drug derived from research into the action of mustard gas after the First World War. I will take this for two weeks and then stop for two weeks, continuing this pattern for about six months. Not a particularly targeted treatment, to be sure, but a poisoned scythe to chop down the profusion of abnormal paraproteins as they emerge into my circulation. I am told I will keep my hair.
  • Prednisolone (UK English name): a powerful steroid to suppress abnormal behaviour of the bone marrow, anther line of attack against the rogue cell factories that have been toiling away deep inside me for the last five years or so. This may prove such a tonic, apparently, that I may find myself getting up at 5 in the morning to do the ironing. As it generates dependency, this drug will be withdrawn slowly as the first month proceeds. It may have the added benefit of clearing my boring old psoriasis, although there is the risk that this will”rebound” with the cessation of the drug.
  • Lansoprazole: a proton pump inhibitor to control excess acid in the stomach that arises as a side effect of prednisolone.
  • Metoclopramide : An anti-emetic to counteract nausea arising from the chemo.
  • Allopurinol: a bit of a horse pill this one (300mg taken with plenty of water) to mop up uric acid released on the destruction of abnormal cells. Without this, I could develop gout caused by the deposit of uric acid crystals in my joints (ouch!)

In addition, I will take an antibiotic to deal with the chest infection that is still with me, although the cough has largely abated. She writes it all down for me and answers a few questions I have about diet and exercise (her basic advice being that no special measures are necessary, but that balanced diet and regular exercise are ‘good things’). An ominous note is then sounded: I can expect a crisis in about ten days’ time, when the combined effects of the medications and the disease itself will be to drive my immune system to its lowest point ever. If at that stage I develop a temperature in excess of 38º C, I am to present myself to A and E for a possible admission to hospital for intravenous antibiotic and monitoring.

That is pretty much that, and I am given an appointment for two weeks ahead, 23 September. It remains for me to pick up the boxes of pills from the hospital pharmacy. It ends up that these are delivered to me personally in the clinic reception by a softly spoken Scot, who introduces himself to me as the specialist oncology pharmacist, saying that I may be seeing quite a bit of him. As he is clearly a kind man, I am able to reply without any irony that I will look forward to this.

And so home for an afternoon of relative normality: the drug regime will begin with breakfast in the morning. We are joined in the afternoon by my son’s girlfriend and the subsequent trip to Waitrose to shop for a few items can be counted as therapy. In this supermarket of manageable size is a well-lit normality: fresh food smells, golden bread and ripe fruit helping to anchor me in the much needed everyday.

Sleep comes with difficulty, but I can see a path ahead and am at greater peace, at least until the morning of the next day…

Dr Waldenström, this time from 1963.
A kind looking man, do you not agree?

Saturday, 2 October 2010

The Chief Rabbi speaks and comforters call

On the morning of Wednesday 8 September and after a largely sleepless night I made my way downstairs to the kitchen, where I turned on the radio.

In mid-flight was an unusually impassioned Chief Rabbi, delivering his Thought for the Day. What had animated him was the pronouncement by Prof. Stephen Hawking in his latest book that "Spontaneous creation is the reason there is something rather than nothing, why the universe exists, why we exist ... It is not necessary to invoke God to light the blue touch paper and set the universe alight."

Well, the Professor had certainly lit the Rabbi’s fuse.  You can listen to the broadcast here – see what you think. Oh, Hawking and Dawkins, with their books to sell, think they are removing the scales of illusion from our eyes with something new. In my weakened and vulnerable state I was very grateful for the words of the Chief Rabbi as he once again asserted, against the background of millennia of tradition, that fact was the realm of science, while the territory of faith was meaning. Sorry, Richard and Stephen, but you would have had nothing to offer me yesterday as I grappled with my new diagnosis and teetered on the brink of meaninglessness. Without faith, hope and vision, life closes down. This is the reality of our makeup with which you consistently fail to grapple.

AC Grayling was duly wheeled on later, only too happy to agree with Hawking that religion had had its day, but asserting— himself a multiply published author—that there was still life in philosophy. Couldn’t agree more, AC old chap, but it was quite fun hearing you choke on a dose of your own medicine from one of the New Atheists (if that is what Hawking be).

This was going to be a day of consolidation and regrouping after the muck and bullets of the last 24 hours. My son was home, yet to start his third year at medical school and so I had the best of companions, a calm and increasingly learned presence. I managed to speak to my brother, himself a retired GP, who the previous day had returned from a trip to his son in Australia. He took the news very well and came over more or less immediately with a laptop full of diverting pictures from his travels. I felt more normal, though still very numb and with a pervasive sense of changed reality.

Father Milligan came over, travelling quite a distance to be by my side in my hour of need. After a lunch of baked beans (comfort food par excellence), we sat on the sofa and talked about the practicalities of work now that I was ill. Then, with a characteristic glint in his eye, he produced his chrism jar and said that he would pray for me and anoint me with oil. This was a precious moment and not for the first time was I grateful for what we so blandly call “organised religion”. As I had received strength from the boldness of the Chief Rabbi, so now I was conscious that the oil about to be smoothed on my forehead in the ancient sign of the cross was from the hands of a priest whose authority came from the laying on of hands in an unbroken line from the earliest days of the Christian Faith (notwithstanding a Reformation or two). It is easy to find fault with the many follies of religious practice, but the oldest and the noblest traditions, often the simplest, endure for our blessing and we can still be touched by them, as I was in this quiet time.

My beloved priest then went on his way, back to the increased workload imposed on him by my forced absence, whose burden he made light of with characteristic good humour.

In the afternoon I diverted myself with a bit of footling on facebook, a forum for which over the last few weeks I am aware of a growing respect. Suddenly, with a cheeky ‘pop’ there appeared a chat window. An American friend, happening to be online, had taken the opportunity to ask me a generic “how are you?” How could I possibly reply honestly in that moment without spreading myself thin? I merely gave a bland reply and said that I was just logging off, so postponing a detailed account for a later day. Working over the days through a list of friends whom we have wanted to tell the news personally I have been conscious that the story has acquired a patina of bearability, a loss of rawness with each retelling and an accommodation of the new reality into my everyday consciousness. Once the story has been told, it can be a relief to move on to other subjects. In that moment however and with this friend it was all too new to recount.

I was in a limbo awaiting final diagnosis. At some stage I lay in bed for quite a while and idly took this picture on my phone. The angles are strangely consoling.

Good morning