Friday, 30 September 2011

Building Up and Being Stalled


In an effort not to vegetate, as well as walking into town for some shopping and book browsing (dangerous occupation), I held the plank position beloved of PIlates practitioners for one minute, performed ten press-ups and managed ten squats. I have not felt all that comfortable today though, as I have a stitch-like pain on my right side. Perhaps it comes from lounging around too much.

I was alarmed to find in Waterstone’s that the historical period that most interests me as a fictional background is already well mined by a number of authors, although, on reflection, I realised that my likely central character is very different from the heroes created by the competition. No shortage of authors to compare, which is no doubt a healthy state of affairs…ultimately.

I still do not have the MAC code that will enable me to change my ISP. I rang my present providers last night and the toads of course kept me holding for the best part of half and hour, all the time bludgeoning my increasingly cynical brain with possibly the dullest piano riff ever devised, not improved, needless to say, by constant repetition. The operative I eventually spoke to said that his company would only undertake to provide a MAC code within the five days required by the regulator, Ofcom. He stood by this even when I pointed out that my original request had met with an assurance that the code would be forthcoming in a day; he thus effectively accused a colleague of ignorance or, worse, incompetence. I could have made the observation that regulations are the refuge of scoundrels, but the move will happen when it happens and this is one battle not worth investing with too much energy.

We are assembling items to take to our daughter at university tomorrow. She has not been at all well this week, the poor love. My own introduction to university life seems to have been a lot easier in retrospect. In our social group house price stories have been replaced by accounts of how our various offspring are faring in their first extended time away from the parental nest.

Meanwhile, in France, it looks as if my brother may have found the right person to help us stop starlings falling into the stove. Will keep you posted…

A toad
(Fr. crapaud)

Thursday, 29 September 2011

Al Fresco


Warm and bright again today, so I was able to enjoy lunch in the garden with my friend, R. Freshly baked bread and assorted savoury treats fuelled our lively conversation. I enjoy sunshine most from a vantage point in the shade, which is just as well given that chemo renders one more vulnerable than normal to the harmful effects of the sun’s rays. At this time of year very little direct sunshine hits our garden as the house gets in the way, and so we were soared the necessity of moving furniture around. All too easy really…

When R and I get together, conversation invariably turns to books and the writing of them, not least because R is a published author. As well as discussing his ongoing and future projects (my lips are sealed) we also had some time to discuss my idea for a novel, in fact, novels. If I make self-affirming statements such as this often enough, I may just about come to believe that I have something to offer the reading public. In the course of this single conversation my plans advanced considerably and the identity and interests of my proposed central character are now much clearer.

We also talked about Robert Harris, whom R went to hear speaking about his new novel a few days ago. The book is called The Fear Index, a thriller that could not be more contemporary in that it concerns hedge funds and the bleeding edge of computer-automated market trading. My pious words yesterday about having conquered my book addiction are now so much froth and bubble, because in a matter of seconds I have just downloaded Mr Harris’s latest work to my Kindle, further proof that these sober little devices are like crack cocaine to those with a reading habit. Looks a great read, though (guilty shudder).

Talk of this book led us on to the amorality of modern trading and our enslavement to the market. Confession time: I am predominantly a right-brained person. Whatever the neurological theory, that is a term we can readily understand. Big picture creative thinking comes more easily to me than detailed analysis or strict logic. I am therefore biased when I say that we are in peril if we think of our minds as computers and of ourselves as cogs in a machine, particularly an economic mechanism. The pursuit of money for its own sake is trampling our humanity. Economists should be our servants not our masters. Should we study science and technology or the humanities? Both. I am compelled to go further and say that, without a spiritual sense, which is fundamentally an awareness of the collective, however much individual religions dress it up, we will destroy ourselves even as we acquire all the shiny new toys the world can offer. The reason I am a Christian is that the Gospel addresses fundamentally the problem of our self-centredness and pride. The battle goes on through life, sure enough, and many mistakes (and worse) are made, but the path of peace is marked out. The Bible says “the love of money is the root of all evil”. How can these words possibly be regarded as irrelevant? Their author may not have known what to make of a computer screen, let alone the intricacies of the modern market, but he understood the human heart. We have learned so much in the intervening two millennia, but how far have we really travelled?

Wednesday, 28 September 2011

That ain't working!


As part of my efforts to develop my writing I am working my way through a book by Louise Doughty called A Novel In A Year, based on a column she write a few years ago in The Daily Telegraph. The main part of the book consists of weekly exercises. I am now on Week 2, where the requirement is to immerse oneself in contemporary fiction. Tough job, although my energy is such that I am probably only going to complete one book. Fortunately it is a great read: Lustrum by Robert Harris, a political thriller set in Ancient Rome, with Cicero as the central character. Harris is one of the most economical writers I have ever come across, his writing skills having been honed originally in journalism, where wasted words mean lost readers—as a rule, that is; who does not remember with affection the labyrinthine sentences of the late Bernard Levin?

I have a stack of other novels to dive into, the fruit of my chronic book addiction. I have vowed not to buy any more books until I have finished the ones I have got and I now have a few months ahead of me in which to catch up with my reading. Trouble at the moment is that I keep falling asleep.

I force myself out of the door each day for an errand or two or just for a stroll. By lunchtime today the sun was shining out of a clear blue sky, which was a welcome incentive to leave the house, even if my ultimate destination was the local barn of a Tesco. That giant company has pulled off quite a trick in having a slogan with the word “little” in it. I took them at their word and bought only two items, resisting the urge to add dark chocolate to my shopping basket.

Meanwhile back in Techieville, I await the MAC code from my existing internet provider that will enable me to migrate to a new service. I hope I do not have to make another stroppy phone call tomorrow.

Marcus Tullius Cicero (106-43 BC).
Statesman, orator, philosopher, lawyer, prolific letter writer.
His writings are the gold standard of Latin prose.

Tuesday, 27 September 2011

Cut off


Is it just me, or does everyone hesitate for months, if not years, before changing broadband supplier? The fear of being disconnected from the cyber-world; the possibility of lost messages and, with them, opportunities (even if only for the sharing of a bad joke or two); the logistics of communicating a new email address to one’s myriad contacts. All of these are deterrent enough, but the clincher for me has always been the necessity of prising a MAC code from the reluctant grasp of one’s existing internet provider. Without this sequence of letters and numbers, a new provider will not have authority to set up their service for me.

As we live in a cut-throat capitalist trading environment—even if some of us are (heresy of heresies) wondering whether Marx might just have had a point, at least about the dehumanising effects of unfettered market economics—it was to be expected that my existing provider would not divulge my MAC code straight away, although I have a right at law to be supplied with the jolly thing within five days. The first person I spoke to, after having had my right ear and corresponding brain regions bathed in musical banality for several minutes, subjected me to a range of questions designed to draw me out on the reasons why I wanted to change provider. When I refused to discuss the matter but insisted on my legal right to be given the liberating code, the call was terminated. Pretty fishy, I think you will agree; very annoying certainly.

Mercifully it did not take too long to reach someone more amenable. Even though she managed to get as far as offering me a slightly better deal than my present one, nevertheless I managed to secure a promise that the MAC code would be with me shortly.

My wife and I saw someone else being cut off earlier in the day, when we walked by the river in the increasing warmth of the afternoon. As we witnessed around this time last year, the river can flood its embankment at Twickenham, even if the water does not reach the epic levels recorded in the early twentieth century.

The driver of this car rounded the flooded corner with a bit too much élan, stirring up a considerable wash that brought the waters nearly to my feet (the tide had until that point reached the ripples visible across the reflection of the church tower). He also succeeded in forcing dirty water into parts of his engine where it was not welcome. The engine objected and refused to restart.

Monday, 26 September 2011

Nuts!


A very idle day to be sure, although I took a walk to the supermarket with my wife that both stretched the legs and secured us a few essentials.

While in the shop I received a lengthy text from my brother in France reporting on his findings at the window store. There are numerous options, although the two at the pricier end are the most compelling. At the moment we have no idea what view the local authority (in this case the town hall or mairie of the commune in which our house is situated) takes of aesthetic considerations, but the building is 250 years old and so deserves some respect. Whatever we do will require a prior application to be submitted in triplicate, although the approval process seems quite speedy. A flurry of texts has followed as we try and clarify dimensions and colours.

From what my brother tells me, all is mists and mellow fruitfulness in Brittany, with warm temperatures and the trees hanging low with walnuts, hazelnuts and sweet chestnuts. He and my sister-in-law have also been gathering up pinecones, which not only decorate the hearth but also make fragrant firelighters. By the time they found the window showroom today it was the hallowed time of lunch and the place was inevitably closed for a couple of hours. There was nothing for it but to find a peaceful spot for a picnic. They ended up by a quiet estuary at the end of a winding road, their only companion being a Frenchman dozing in his car oblivious to the acorns and chestnuts pinging off the roof.

The incomparably cheeky Squirrel Nutkin, consistently my favourite amongst the Beatrix Potter characters.

Sunday, 25 September 2011

Markets and Malls


Yesterday we hurtled down to Portsmouth to see my mother, her first sight of me since my transplant. We discovered in the process that taking the new tunnel on the A3 makes for a quicker journey than our normal route down the M3 and then through Farnham to pick up the A3 further south, although the slower route is pretty much exactly 2 miles shorter and probably more economical.

Mum was on good form and very pleased to see me standing on my own two legs. We had a pleasant lunch in her bright house, which is in a small development in the old part of the city, among streets steeped in naval history. The small houses all look inwards upon a central garden, which is beautifully kept by one of the residents at shared expense, and the shrubs and small trees were all very colourful in the autumn sunshine that is bathing the country at the moment. My mother’s sister lives in the same development and she dropped by for a chat in the afternoon.

Unless I push myself, my default state at the moment is “the armchair doze”. In order to avoid this my wife and I walked to the nearby shopping mall known as Gunwharf Quays, which I have mentioned previously in this blog and which houses outlet stores for a number of major retailers, selling seconds and ends-of-lines. There are also numerous restaurants and refreshment stops. My wife had a voucher to use in Marks and Sparks and I was surprised to find that I had sufficient energy to help her find some items of the right size to try on. Then I flaked and went to sit on a bench outside while she battled her way through the fitting rooms.

While I was people-watching in the open air, I was struck by the difference between a modern mall—even a relatively small, low-rise one—and a street market, such as you typically find in France. People do not go to a mall with the expectation of meeting others casually; the set-up is just too large and anonymous, whereas in a market, the close proximity of the stalls, the immediacy of the interactions between customers and traders and the local focus all create more fertile ground for social interaction. It would be interesting to see whether other cultures experience their malls at all differently from the socially awkward English, but I would be prepared to bet that malls tend to generate a communal anonymity wherever they are found.

After a characteristically tummy-stretching tea back at Mum’s we gave her an early Christmas present of an album of photos of our son’s wedding back in June. It was good to be able to look back on that supremely happy day together before it was time to hit the road.

Once we got home I realised that I was completely wiped out physically. Acting with all the speed of a clockwork mannequin whose spring has wound down, I just managed to clean my teeth, take a couple of pills and collapse into bed. This post-chemo fatigue is a strange thing, curiously all-enveloping and impossible to resist once it gets to you. My wife was also tired, but she had of course spared me all the driving.

Awoke this morning feeling much refreshed and at a reasonably early hour. Have just had a very mellow cup of Australian-grown coffee that my mother presented us with yesterday and our son and daughter-in-law have just arrived for lunch. They are returning our little second car that they have had some use of while they have been settling into their first married home, so I will now have a little runabout to enable me to inflict my company on a wider geographical circle of friends and further my recovery.

Today my friend John Penny runs the Ipswich Half Marathon in aid of WM research. So many thanks are due to all those who have contributed most kindly and generously to his sponsorship, which has now (including Gift Aid) exceeded £1,500. What can I say?

Some cheery yellow flowers seen in my friends' kitchen a couple of days ago.
Should have "cloned out" the battery with some whizzy software, but it doesn't detract too much.



Friday, 23 September 2011

Mainly of Music and Laughter


In the late morning my daily constitutional took me to the house of my good friends, Dave and Tina. Twickenham is looking wonderfully golden in the September light as the colours of the leaves turn and I find myself hoping, as in previous years, that strong winds and rain will not crash the party and strip the trees prematurely. The bare branches of winter certainly have a stark charm when the air is crisp, but the diverse palette of autumn demands to be savoured as it develops over weeks.

It is interesting to note how different people bring out different facets of ourselves. Time spent in Dave and Tina’s company invariably draws The Joker and The Musician out of me, with minor turns by The Impressionist. Even when we talk of serious things (and we do), jokes or ribaldry are never far away. I originally went for coffee, but it turned into two leisurely coffees, followed by soup and salad.

I have played quite a bit of music with Dave over the years in church settings and he has had a long and busy career in many musical fields, both in live performance and in composing for TV and advertising (the old PC World jingle was one of his). In recent years he has been gigging on acoustic guitar, accompanying his daughter Jem, a very gifted singer/songwriter, and they are about to set off on a month’s tour of the German-speaking countries and Scandinavia supporting Bob Geldof. In November they go back for a month of club dates in Germany and Austria, this time playing longer sets on their own.

I am telling you all this because my blog is about daily life and a significant part of this particular day has been spent with friends of whom I am very fond, enjoying some laughter therapy. My other purpose is that you should hear of Jem Cooke, who has a talent and a passion for music that should be bottled and dispensed by the NHS in the interests of our collective mental health. At the moment our North European cousins are getting the message, but she will be back gigging in the UK in due course. In the meantime there is much to enjoy on her website. The X Factor can be diverting, for sure, but Jem is the real deal.

You may of course want to make music yourself. On this website you will find a neat little intuitive tool for having some fun. A good stress-buster, I have found, although my wife did not agree when I was trying it out yesterday while she was concentrating on some work.

The other bit of news is that I have started reading a book about novel writing. The first exercise is to complete the sentence: “The day after my eighth birthday, my father told me…”

Wish me luck.

Thursday, 22 September 2011

Welcome


This is an exciting day for those experiencing Waldenström’s macroglobulinaemia (“WM”) in the UK: the launch of a new website dedicated not only to their interests, but also to resourcing medical professionals in this quirky, rare disease. You can find the website here

What is more, the organisers have very kindly provided a link to this blog from the site, so it may be that some of you reading this are new here: if so, a very warm welcome to you.

I thought this might therefore be a suitable opportunity to say a bit about the blog, what it is and what it is not, and to give a brief synopsis of my journey with WM so far.

This was me on 7 September 2010…



This is me now…



Exaggerations and over-simplifications both, to be sure, but nevertheless close to the truth. Yes, as my doctor told me just over a year ago, I have cancer. She went on to say that there was treatment available and, with that, hope. Surely many of us create playlets in our minds, anticipating how we will react in certain situations and it is inevitable that “My Cancer Diagnosis” is going to be a particularly popular production. The reality for me however was that the diagnosis marked the beginning of a new chapter; it was not the closing sentence of the book of my life. It became apparent early on that there was a story unfolding and so this blog was born. In it I have sought to give essential medical detail, including details of treatments and procedures and occasional (gasp) pictures of body parts, my guiding principle being that knowledge is power. I have seen more needles, of varying sizes, in the last year than I ever thought possible and I don’t think you ever really get used to them, but the more we shine the light the less darkness there is.

It became quite apparent however that, although Dr W had just made a shock entrance and moved centre-stage in my life, he was not destined to stay there all the time and moreover that the cast of the production was large and growing. So the blog sought to recount other episodes besides the immediate effects of disease and the ins and outs of treatment in the hope that readers would gain an insight, as I was doing day by day, into how disease relates to life and vice versa. When the side effects of chemotherapy have been at their height, the danger has been that personality will be obliterated under a mass of uncomfortable, disconcerting symptoms. I have found though that there are elements of story to be teased even out of those times. You will read them here.

I am not however terribly good with numbers, so you will only find modest references to my blood counts and other statistics. Some people take great interest in these things and I salute them, but I tend to think in pictures.

So where am I now, literally and metaphorically? I am at home, in initial recovery from major chemotherapy at University College London Hospital (“UCLH”), with whom my local hospital, St Peter’s Chertsey, has shared care. I have undergone what is referred to as “autologous stem cell transplant” (“ASCT”): in essence, stem cells were abstracted from my blood in July and stored, I was blitzed with high-dose chemo in August and then my stem cells were fed back to me, so that my vacated bone marrow could be repopulated with squeaky clean new blood cells and I would grow an immune system again instead of being left without one (a bad thing). It is a form of treatment sometimes suitable for patients under 65 (you need to be reasonably hale and hearty to withstand the chemo). It was advisable in my case as my disease was pretty well advanced when I was diagnosed, this being a sneaky, slow-growing condition and it having developed in my bone marrow and lymph nodes over about five years. The goal of treatment is at least five years of remission without the need for further strong medications. In the meantime, new treatments are being developed and there is increasing national and international cooperation in combating the disease.

Recovery from this latest treatment is slow: at least three months before the slightest exertion will not leave me breathless. At the moment I am not taking any drugs other than an antiviral to keep shingles at bay, my immune system being somewhat vulnerable to opportunistic viruses at present, although present and correct in many other respects. In six months I will undergo my third bone marrow biopsy and CT scan to see how the latest chemo has actually affected the disease: booted it to the far corners of the known universe, we earnestly hope!

What have been most helpful to me over the last year and a bit? Family and friends above all: existing bonds have been strengthened and developed and I have been on the receiving end of numerous messages and acts of love, kindness, encouragement and generosity. Faith, not religion: faith flew away for a bit, but came fluttering back. Music, music, music. My iPhone, purchased just in time. DVD box sets: Mad Men, The Sopranos, The West Wing… My doctors and support staff, without exception. The “WM Community” both online and in person: one of the upsides of having a rare disease is that those affected by it are strongly motivated to support one another and share knowledge and experience. Books. Writing this blog.

What have not been so helpful? Telephone sales calls. Political speeches. The preposterous plots of much British TV drama. Noise. Er, that’s it.

Wednesday, 21 September 2011

Miscellany


Last night we made our first call to our daughter over Skype: is it a bird, is it a telephone? Funny how Star-Trek-level technology has actually crept up on us. Although we used my laptop, we could have used my iPhone, which would thereby have turned into the sort of device that Capt. James T Kirk would recognise. Well, OK, we can’t do the beaming-up thing yet, but it is a start. In anticipation of what I suppose we can still reasonably term “a call” I had been reminiscing with a friend over email earlier in the day about the limited ways available for us to communicate with our folks when we were at university. In my case there was a grotty pay phone in a grotty corner of the grotty Junior Common Room, from which I used to make a weekly call to my parents, always preceded by a conversation with the operator to reverse the charges: well my orange needlecord loon pants only had small pockets, you see…

"But what I'd really like is an iPhone."

RAF greatcoat, popular with male university students in the mid-1970s, although I never owned one.
Girls were often to be seen wearing old fur coats, rather ungallantly called "dead bears" by me and my friends (the coats, that is, not the women).

Our dear daughter is settling in well, although work proper does not start until next week. She is sharing a house on campus with four boys, who, she assures us, are courteous and thoughtful. We will probably visit her soon, as she would like to have her bike available; by the time the car was loaded with all her things last Saturday, there was simply no room for the bike.

I have been pretty idle in terms of physical activity today, although I did manage six press-ups and persuade the bread machine to produce a loaf. I have had two visitors: my good friend P in the morning and my brother in the afternoon. P is a great enthusiast for film and received the happy news when he was with me that he had been accepted to do an MA in screenwriting. To assist me with my (blush) writing ambitions, he lent me two very useful books on the writing process: quite a rich seam of expertise to mine.

My brother and his wife set off for a short break in France tomorrow, so we discussed various practicalities relating to the house, including the continuing search for a builder to help us with the problem of young starlings falling down the chimney into the wood-burning stove. We do not want our visitors upset by having to deal with dead birds as soon as they arrive (after all, we don’t enjoy being confronted with feathered remains either).

My friend, John Penny, is in the final week before the Ipswich Half Marathon on 25 September in which he is raising funds for WM research in the UK. Amazingly the funds raised have today reached £1000 (plus Gift Aid) and both he and I are greatly encouraged. I think also that we have today identified a small research project that will be an ideal recipient of the funds and I will let you know when this is eventually confirmed. Many thanks indeed to all who have contributed so generously.



Tuesday, 20 September 2011

Osterley Addendum


In my last entry I ran out of energy before retailing another fact about Osterley House, which is that it passed to the Child family in satisfaction of a loan made to one Nicholas Barbon, who died there in about 1698. Barbon is a fascinating and colourful figure, not least because he was the son of “Praise-God” Barebone (or Barbon), a fiery preacher and leatherseller as well as a Parliamentarian, who saw fit to christen him Nicholas If-Jesus-Christ-Had-Not-Died-For-Thee-Thou-Hadst-Been-Damned, a particularly florid example of the sort of “hortatory name” devout Puritans were accustomed to inflict on their offspring.

Nicholas however reinvented himself pretty comprehensively in later life as a man of the world, qualifying first in medicine but swiftly turning to the glittery world of property speculation. He spotted the opportunities for constructing both buildings and fortunes that arrived with particular force after the Great Fire of London (in which his own father’s property was one of the most westerly to be destroyed). He built, often without due permission and frequently getting into legal disputes, mainly in the areas now known as The Strand, Fleet Street and Bloomsbury and was one of those who, in doing so, made a physical bridge between the centre of government in Westminster and the City, which was the heart of trade, banking and commerce. He was a pioneer of the businesses that grew up alongside property speculation, namely insurance and mortgage finance. He wrote treatises that are early examples of classic economic theory and it will not surprise you to know that he was an enthusiast for free trade.

While some of his buildings survive (the jerry-built ones having long ago disappeared) and he must receive much of the credit for the creation of the classic London terraces that give stretches of the West End the appearance that we now generally view with affection, there is a real whiff of brimstone about Nicholas Barbon. He “got things done” but in the process dishonoured numerous debts and defrauded his associates, using his position as an MP to avoid the legal consequences of his financial and other rogueries.

In his will he directed that his debts should not be paid. It sounds like the Child family had the last laugh there.

The earliest Barbon building still standing, Crane Court (off Fleet Street).
For the photo I am indebted to this blog, where you can read more about Nicholas Barbon.

Monday, 19 September 2011

Heritage Junkies


We have always promised ourselves that in our quieter years we would haunt National Trust tearooms. No doubt it was in that spirit that I suggested to my wife on the spur of the moment that we visit one of the ow NT properties closest to us. My wife is not terribly keen on the unreconstructed gloom and sparseness of the 17th-century Ham House and its formal gardens, so we opted for the gracious parkland of Osterley dating from about 100 years later.

Osterley House, as it survives, a redesign by Robert Adam (1728-1792), commissioned by the Child family.


As we had made a slow start, my wife having had a particularly tiring time getting our daughter settled into university yesterday, we arrived too late to go into the house itself. Happily we did manage a gentle walk among the mature trees in the grounds, making our way under the low-spreading branches of an oriental plane tree, planted in 1755 and still in exuberant leaf, to find ourselves in the walled Tudor garden, marvelling at the bright flowers and vegetables flourishing in these ancient surroundings: deep red beetroot, blue-green kale, fragrant rosemary, gleaming sunflowers…

A small example of the delights in the walled garden at Osterley.

Funnily enough, we did not feel like taking tea in the converted stables, but did pass some time perusing the basic history of the place. For most of their existence the house and park were owned by the Child family, of Child & Co., bankers. The bank is now part of RBS but still trades in its own right, holding some ancient accounts as well as presumably acting for what we now call “high net worth individuals” (i.e. Croesus and his pals). In the eighteenth century one Robert Child disinherited his daughter for running off with a particularly racy Earl of Westmorland and passed the estate to his granddaughter, who married the then Earl of Jersey, who in turn added the name “Child” to his own surname (a cunning plan). The property and banking interests then remained in the Jersey line until the 20th century, when social changes resulted in takeover of the bank by larger commercial interests and the passing of the property to the dear old NT, although it had to be managed initially by the then Ministry of Works (subsequently The Department of the Environment).

The formidable Thomas Gresham (1519-1579), who was the first to build a substantial house at Osterley. Brilliant with money, he acquired a substantial fortune both as a merchant and as financial agent for the Crown in the Low Countries. He sorted out Edward VI's debt problems as well. Looks bloody sharp, doesn't he?

In the meantime, our daughter seems to be enjoying her new surroundings. A Skype call will soon be in order.

Saturday, 17 September 2011

The Empty Nest


All through the morning they gathered in the hall: carrier bags, storage boxes, holdalls. The moment of my daughter’s departure for university could not be delayed for much longer. I would not be going on the trip, for two reasons, the first being my lack of energy and the second being that there would not be room for a third person in the car.

I did use my day’s allowance of strength to pack the car though, noting the number of small mementoes and creature comforts that my daughter was taking with her to make her room in the hall of residence more like home. A couple of friends of hers had already set off for their new place of study in the North, one having apparently forgotten her duvet, but my wife and daughter could be a bit more leisurely, Canterbury only being a couple of hours or so away.

After a quick lunch of baked beans, it was time for them to set off. A long hug in the hall, some tears and a brief word of blessing and my daughter was gone, a few scattered possessions in her room that had not made it into her luggage remaining as poignant reminders of her living presence.

I watched three consecutive episodes of The Sopranos to drown my feelings, but more tears came at the end of the second episode. We are hugely excited for our daughter of course as she enters this next stage of her education and I keep reminding myself that she is only a text or a Skype call away, but there is no escaping the fact that this is a moment—if not exactly a formal rite—of passage and that the balance of our family life is in the course of being rearranged.

Friday, 16 September 2011

Sleb Spotting


Today I had a chance for some bonding with my son, as his wife went shopping with my daughter for some last-minute uni essentials and we immersed ourselves three consecutive episodes of The Sopranos. I am on the second series, having been given all six by my generous brother, but It was my son’s first exposure to the topsy-turvy morality of this great work of American TV fiction. So visceral are the responses of many of the characters that they are like those of overgrown children and I constantly ask myself why the lives depicted make for such engrossing drama. They are not without honour and yet they extort and murder; they also enjoy some of the most appetising food you can ever hope to see depicted on screen and enjoy a conviviality that is enviable. The expression “loveable rogues” sort of covers it, but I am still trying to work out why one desires the best interests of these dangerous individuals.

Tony Soprano (as played by the wonderful James Gandolfini).
Once heard to say "Even a broken clock is right twice a day."

Before we settled down to watch the telly, we walked int Twickenham to fulfil the double purpose of giving me my daily exercise and a trip to the supermarket for some white bread flour and table salt. Crossing the road in the opposite direction to us near the shops I saw the craggy person of Leslie Grantham, the former (or is it forever?) “Dirty Den” from EastEnders.

When I worked in the West End ten or so year ago, I was celeb spotting the whole time. The proximity of the Broadcasting House helped, as there was a constant stream of actors, politicians, popstars and famous broadcasters in and out of the building. I used to see Morrissey in the Post Office and once nearly bumped into Eric Clapton as he left his dentist’s in Cavendish Square. I saw Bob Geldof taking his then diminutive and neatly uniformed daughters to school. Heck, a famous artist once held my gaze, perhaps sizing me up for addition to their oeuvre.

Now that I work in the City I quite often get opportunities to see famous people and over the years I have met a few, including a couple of royalty. On occasions I have spoken to celebrities without being introduced, sometimes on public transport, and only one—someone I particularly admire—has ignored me. Mind you, I was then in my gauche early twenties and had just careered out of a pub in Chancery Lane and narrowly avoided walking into him, my greeting being a slightly drunken “Oh, hello”. As a boy of seven I wrote a fan letter to the American astronaut John Glenn and was overjoyed eventually to receive a reply, signed personally although the text was no doubt standardised.

Celebrities we will always have with us and I believe it is entirely normal to take a measure of interest in those who have maintained a position in the public eye. Often this has been because of particular talent or hard work and such people naturally have an aura of attractiveness. We may not envy them their relative lack of privacy, but we would perhaps like some of their skill or charisma to rub off on us.

Watching an episode of The West Wing last night I reflected on what is the appeal of this uniquely engrossing series and came to the conclusion that, alongside the strong acting, sharp scripting and breathtaking editing, one thing it offers most strongly is the sense—even in the midst of incomprehension of many of the intricacies of American government—of being at the heart of something really important, at the centre of things. Maybe we imagine that celebrities are gifted with wisdom as well as talent and that they can illuminate at least some aspect of “the centre” for us. This could be the fundamental flaw of celebrity gazing.

Another personal sighting: the left leg and well shod foot of Peter Hain MP,
Shadow Secretary of State for Wales, seen on a train into Waterloo May 2011.
Call me shameless...



Thursday, 15 September 2011

It Doesn't Take Much


Just a few local errands these days and I am wasted for much of the rest of the day. Still, I got a fair amount done early on, first of all over the phone and then walking into Twickenham with my daughter. She goes off to university for the first time this Saturday and we needed to equip her bike with a good lock and a pump. The phone tasks were to renew some car insurance and arrange for the police to call tomorrow to security-mark all the family bikes. I am not sure how they go about this, but think it involves “magic paint” of some kind. I also had to pick up a prescription for anti-virals (which I need to take for three months).

Suitably exhausted, I took to the sofa, where I can recline in reasonable comfort, read or mess about on the computer and receive visitors. In the early afternoon a friend from church came by for the first proper chat we have managed in months. His life is going down an interesting path, as he recently took early retirement from successful legal practice to pursue work as a life coach. He is steadily establishing himself in his new field, with the benefit of some excellent training and talking about his work this afternoon enabled us to reflect on the pressures of modern life and the decisions that people find themselves making at various stages.

We also spoke about life in the slums of New Delhi, where our church has been sending a volunteer team every February for the last few years, working with a local organisation known as “Asha” (“Hope”). My friend went on this year’s trip and told me how surprised he had been to find the slum-dwellers full of excitement, activity and joy, rather than sunk in torpor and despair. We contrasted their strong community bonds with the ennui of our relatively atomised, individualistic, consumerist culture and wondered who in fact the real poor were. The danger and paradox is that, as people escape slum conditions (and some now achieve degrees), they will lose their spark of joy.

The key to retaining it must lie in core values and beliefs, just as it does for us. What are “the things that make for peace and build up our common life”, as the Communion service has it?

Wednesday, 14 September 2011

A Flooded Meerkat


Before I get into the main business of today’s entry I will tell you that I managed five press-ups yesterday and a briskish walk around the block in the warm autumn breeze today. As my brother gently reminded me yesterday, a month ago I was receiving potentially lethal doses of chemo and two weeks ago I was discharged from hospital. These are still early days.

Today I received a visit from a valued friend and among other things we brainstormed an interesting aspect of a novel he is writing. He also lent me a really tremendous vampire movie to watch, called Let Me In, which is based on a Swedish novel and is an American remake of a Swedish movie of the same. While the film’s horror was graphic enough, much of the story-telling was suggestive, based on out-of-focus images, distant camera-work and mass media of the early 1980s playing in the background. As well as being an interesting variation on well-worn vampire themes, the story was also a powerful allegory of the difficulties of adolescence. Catch it if you can, even though Mark Kermode didn’t like it, regarding it as a pointless remake. My friend in turn left weighed down with borrowed Tintin books, one of which, Tintin in Tibet, is one of my oldest possessions, dating back to the early 1960s.

Well, what of the main business? A bit of fun really, prompted by a text message from my friend before he came round, in which he said that he had been unable to find the word “gnosistic”, used in yesterday’s entry, in Chambers’ Dictionary. Therefore, as he put it, the word could not exist, adding “simples!”, the catchphrase used, with a Russian accent, by the supposedly loveable meerkats—or, rather, “meerkats”—featured in the long-running advertising campaign by the insurance comparison site comparethemarket.com. Animated “meerkats” are used to advertise the site, the premise being that they inhabit a land called Meerkovo, somewhere presumably once within the Evil Soviet Empire, where their formerly peaceful lives have been disrupted by numerous enquiries from people looking for cheap insurance and confusing the insurance site with their own web presence, maintained at comparethemeerkat.com (and further developed with games and animations at meerkovo.com). Thus are writ large two great English vices: anthropomorphism and over-reliance in the mass media on bad puns. The cuddly denizens of Meerkovo use the broken English of “simples” to point up how elementary is the difference between the two words “market” and “meerkat”, hoping thereby to educate the Great British Public into accurate surfing so that they can get back to peaceful life.

Having time on my hands and a web-enabled computer on my lap I wondered how meerkats had come to be in such a position in popular consciousness. The following seemed to be the significant steps along the way…

Meerkats (Afrikaans for "marsh cat") in their natural habitat, southern Africa (i.e. not within the former Evil Empire).
Related to the mongoose, they first came to popular notice in UK wildlife documentaries about thirty years ago and immediately appealed because of their habit of striking this alert pose in groups (they are sociable animals).
Hey, they are almost human!


Transitional phase, aka "the rot setting in".
Meerkats can use human technology!


As often Disney is implicated.
Timon the meerkat and his friend Pumbaa the warthog from The Lion King (1994).


All is now lost, broken English and all.
I wonder how real meerkats are faring…



I am not a Gnostic


Today a kind friend in the States emailed me an unusual document, a set of Christian liturgical texts dating from between 100 and 200 AD. Actually we would increasingly say “100 and 200 CE”, “CE” being an abbreviation going back several centuries and meaning either “Common Era” or “Christian Era” but now, as Wikipedia puts it “Since the later 20th century…popularised in academic and scientific publications, and more generally by publishers emphasising secularism or sensitivity to non-Christians”.

These psalm-like pieces (42 in number, although the second has never been found) were discovered by a scholar in an old manuscript he had lying around in the early 20th century and are known as “The Odes of Solomon”, although they have nothing to do with that ancient king. Some have seen in them traces of the several heresies, known collectively as Gnosticism, that were such a plague to Saint Paul in the early days of the Christian Church. In fact there is little trace of gnostic belief in the texts, which generally seem quite orthodox and in line with the teachings of St John set out in the New Testament. Why am I telling you this? Well, one comment I read suggested that the Odes are not gnostic but could be considered gnosistic, a word whose meaning I have tried in vain to find. The definition search however brought up a link to this blog, written by an Anglican priest who—as it happens—has just left the parish in which we live and who is a scholar of Syriac. I found the article featured very interesting in view of our frequent, post-9/11, perception of Islam as the religion of gun-toting fundamentalist fanatics. In short, I felt rebuked for those times when I have been blinkered in my perceptions.

I then turned my mind to the hydra that is Gnosticism and did a bit more reading, trying to find out why the Church has taken such a hostile view of it over the centuries. I think the essence of difference lies in two main beliefs of Gnosticism: that salvation is a form of esoteric enlightenment attainable through a range of practices and that the physical world is the creation of a lesser deity and to be viewed with suspicion, if not with contempt. The first does not seem to me to fit with the Jesus I find in the New Testament, whose teaching was for all, the learned and the simple alike, and whose ministry was hostile to esoteric forms of spirituality reserved to a privileged few. The second is an example of dualism, which I believe to be alien to an integrated understanding of ourselves as psycho-physical beings and to be the fruit of the mind dissociating itself from the body.

Gnostics still exist, although they dropped off the map for a few centuries. I am not tempted to join them. A wise friend, concerned for my welfare, once cautioned me at a particularly unhappy time of my life against returning to Christian faith, saying that religion was “wrapping paper” imposed on reality; “nasty wrapping paper” to be specific. I respect this view more than I can easily express and still use the “wrapping paper test” when it seems that a concocted scheme might be obscuring reality. The notion of wrapping paper however presupposes a gift and I have to say that Christianity still appears to me to give the best chance to us of meeting the Giver. Religion is dead; faith is a different matter.

Monday, 12 September 2011

Why?


What is up with Nationwide Building Society? As mentioned in the last entry, I had to go into the local branch today to make a payment to my French bank account (a “SWIFT payment”), whereas I used to be able to do this online.

Today I filled out the details of the payment and the receiving bank, which are quite lengthy, on a form to print off from my own computer. I then took said form to the branch, where the cashier duplicated my work by filling out a fresh form for his supervisor to sign, while all the time a queue of dissatisfied fellow customers built up behind me as far as the entrance. Progress? I suggest not.

The round trip did at least give me some exercise, but left me exhausted for much of the rest of the day. I am sure I had more energy last week. Why?

Why too am I still itching all over? When is this blasted chemo going to worm its measly way out of my system? I know I should be grateful and in my more objective moments I am. I just wish treatment did not have to be so poisonous. One day it won’t be and that will be progress.

Thanks to all who have so far supported my friend John Penny in raising funds for WM research. There is £465 on the tab to date. www.justgiving.com/John-Penny

Sunday, 11 September 2011

Ten Years On


I was not going to mention Nine Eleven, the airwaves having been so full of comment, reminiscence, commemoration, images. I can see a place for commemoration: the act, its scale, the suffering, the aftermath all demand it of our human nature. What come as relatively new, of course, to the human condition are media overkill and the economic imperative of selling newspapers.

It was interesting listening to Tony Blair being grilled by John Humphrys for half an hour yesterday morning. Normally I find Humphrys an ordeal to listen to but, given an important subject, he often rises to the occasion. Our tangerine-hued former PM still asserts that Iraq was an appropriate target after the destruction of The Twin Towers. Having been persuaded by the WMD argument at the time, I initially supported the invasion of Iraq but it is far from clear now that Iraq was relevant to the conflict provoked by the events of 9/11. Afghanistan? More pertinent it still seems to me as a crucible of fundamentalist terrorism, in spite of the errors and omissions of our campaigns there and the attempts to build and support civil government. 

How wonderful it would be if guns were not used, as violence and trauma feeds violence and further trauma. I have to admit however that I believe we are in a war. This was my gut reaction on learning of the Twin Towers ten years ago: that the flying of hijacked planes into key targets was a declaration of war. A new form of hostilities certainly, but war nonetheless. To call such acts of terrorism criminal both trivialises them and imposes on us means of dealing with them and protecting ourselves that are insufficient to the task, whatever the failings of military approaches on their own. Criminality is indeed involved, but surely we are entitled to call the actions of our own 7/7 bombers treasonable also?

I have spent much of today resting, either in bed or on the sofa. I have just had no get-up-and-go, although I have managed to feed the right mix of ingredients into the breadmaker to produce a loaf and to install anti-virus software on our daughter’s new computer. Every day brings some modest achievement. Tomorrow I will have to drag myself to the building society to send some dough (the financial kind) to France, since Nationwide no longer seems to allow one to deal with such direct payments online.

A friend sent me a kind email today and attached a couple of photos from his recent family holiday on the island of Iona. Here’s one.

Iona Abbey.
Tony Blair's predecessor as Leader of the Labour Party, is buried on Iona, which he loved. His epitaph is a  quotation from Alexander Pope: "An honest man's the noblest work of God".
How different history might have been if his heart had not given out. Would we have invaded Iraq?



Saturday, 10 September 2011

Fringe Benefits


I suppose that one benefit of having to make two trips to the computer repairers today is that I am getting a reasonable quantity of exercise for the present stage of my recovery.

My computer is now back on my lap and order is restored.

Less successful was my attempt to reach a builder in Brittany that we have used before. It seems that the good man has moved house, as the message on the answerphone was not in his name at all. We may have to try and find someone else to fix a trying problem at our house. At least I now have a bit of extra time in which to perfect the following in French: “I need work on my chimney to prevent starlings getting trapped in the wood-burning stove”. I kid you not: when we took the house out of mothballs at the start of this summer, there were nine stiff avian corpses awaiting removal. Not a nice way to go.

Thursday, 8 September 2011

Bad Apple

As regular readers here will know, I am a fan of things Apple. I remain so, but like many loves, this one is under severe trial just at the moment.

I thought everything was fine with my laptop after I collected it from repair yesterday, but today it has thrown several wobblies and I am currently resisting the urge to throw it on the floor and stamp on it. At this point we start applying the pathetic fallacy and attributing blame to an inanimate machine. The thing about computers is that they promise gold and often deliver mud, a bit like people, so perhaps we are not altogether wide of the mark in attributing some, at least rudimentary, personality to them.

The rot started with downloading a new version of iTunes, which then consistently crashed on launch. I was going down the road anyway to pick up my daughter's bike from servicing and the fitting of new mudguards and so the laptop came on the journey as the computer repairers are just a stone's throw (or the irate hurling of a laptop) away from the bike shop. The repairers suggested a fresh install of iTunes. Once home I tried this and all was well until I plugged in my phone to sync its data. iTunes now will not load at all and has since been followed by my email programme and two other applications, one of which stores a copy of this blog.

Feels like the whole thing is folding on me again and so we will be back to the geeks tomorrow. Until then, the machine is on the naughty step.

Shame they can't fix my rash as well, which has not yet completely gone and which itches like mad on occasions, particularly when I am stressed, like, er, now...

Wednesday, 7 September 2011

First Anniversary


Today marks one year from my initial diagnosis with Waldenström’s macroglobulinaemia, a name that took me a week to learn without my tongue dropping off. It is interesting to look back over the modest passage of time and realise just how much I have been through since the initial shock and disbelief that I had a form of cancer, albeit a relatively manageable one. It would have been doubly, triply unbearable had I been able to see all at once what the disease would lead me to experience over this time, underlining the importance of the wise injunction to live each day at a time: “give us this day our daily bread” as the Lord’s Prayer has it.

Our daily bread (yum!)
The Greek of the Sermon on the Mount is subtle: "epiousios", normally translated "daily", more accurately means "sufficient for the coming day", suggesting that God gives us each day what He knows we will need for that day.


I was up reasonably early ready to welcome Father Milligan, the vicar and old friend with whom I work, who was going to make a pastoral (and friendly) visit. It was so good to see him and we shared coffee and news of recent weeks with each other, including talk of what was being found under the floor of one of our churches. Watch this space…

It was then time to do some food shopping with my daughter, deliver her bike for servicing and collect my computer from repair. The cost of repair was less than originally estimated and I have been reunited with my faithful laptop. After reflecting that we would like to buy up the whole of Waitrose and its foody delights, we contented ourselves with a fairly modest selection from its shelves and made our way slowly home, my pace more closely matched to my daughter’s these days, not racing ahead as I normally do.

In the afternoon my brother came over and we spent quite a bit of time planning the installation of a window to let more light into the main room of our little house in Brittany. All in all my most active day yet. Will I pay for it tomorrow?

Our little haven...


...but the ground floor could use more light.

Tuesday, 6 September 2011

First follow-up

Time for my first return to the mothership following discharge last Wednesday. We decided to drive, my wife taking the wheel, as my energy is not yet up to coping with public transport.

It was very blustery around the Euston Road when I got out of the car and my beloved baseball cap flew off my head at one point. At the moment I do not have enough hair on my head to provide the right amount of friction necessary to keep a hat in place. The wind did its best to blow me off course, but I battled through until I reached the Rosenheim Building, where my first task was to deliver some biscuits to the staff in Ambi Care, who had looked after me so well during chemo and after it until I was admitted to the ward for my neutropenic phase. It was strange seeing people go through what I did just a few weeks ago. Although I do not feel entirely well yet, I am glad that treatment is over and that my path is now heading up into the light.

My wife soon enough appeared, having found somewhere to park the car outside the Congestion Charge boundaries and after a little while the consultant called us in. She told me I was looking well, which is a very reassuring thing to hear from a specialist! We reviewed my time in hospital and how I was feeling now, which is in essence normal for this quite early stage in my recovery. Follow-ups will continue on a monthly basis, except if there are complications and after six months a bone marrow biopsy (whoopee!) and a CT scan will be carried out to see if my disease really has been knocked for six. I fully expect that it will have been, but there is no way around the need for proper investigations.

I will ring the hospital tomorrow for my latest blood counts as there was not enough time for today's sample to be analysed.

There had been torrential rain during the afternoon and this caused flooding on the Westway and really terrible traffic jams over much of our route. Along the way a white Lamborghini cut in front of us; its registration was HRO 1N and we could not help wondering whether this was a clue to the occupation of its owner.

We arrived home from Central London in the length of time it normally takes us to reach Birmingham and we were almost beyond food when we got back to Twickenham. My sense of taste is still quite disrupted, with only some of the flavours in any given food item making their way to consciousness, but I wolfed my supper down nonetheless.

I was going to wrap up this blog quite soon, it being a year since my diagnosis. After talking to the specialist today however I am minded to carry on for the next few months so that there is a record of my recovery as well as of my treatment. I continue to hope that this will be helpful and informative. Also, I get my laptop back from repair tomorrow, so you may find more pictures appearing in due course.

One final thing before I sign off today: a wonderful and kind friend called John Penny has taken it upon himself to run the Ipswich half-marathon for the benefit of research into Waldenstrom's. The race is on 25 September and you can find John's justgiving page at justgiving.com/John-Penny

This is a rare disease and therefore attracts relatively little in the way of research funds. It is at the same time related to some other conditions such as chronic lymphocytic leukaemia and multiple myeloma, so that research could throw light on these and other diseases. It is often by concentrating on small areas that a bigger picture can be more effectively formed, as has been shown in stroke research. Whatever support you can give John in his mighty enterprise will be greatly appreciated.


Monday, 5 September 2011

Another lazy day

Energy still not up to much, so I finished watching "The Pacific", including the special features, among which were snapshots of the lives of the principal figures in the historical drama. The whole thing is in fact more documentary than drama and the sequences of military action are among the most harrowing you can expect to see, the conditions in the Pacific theatre being particularly grim: constant rain, impenetrable jungle, mud and an enemy in the Japanese that just did not give up, surrender being a matter of dishonour.

The producers did a good job of showing how the Japanese fought, without demonising them. The real enemy in the drama seems to be war itself: brutalising and dehumanising while at the same time being a seeming constant of the human condition, a curse of our nature.

As I get older I lean more towards pacifism, at least as an aspiration, and seek to learn more about what builds peace between individuals and nations.

Tomorrow I go back to UCLH for the first of my regular post- discharge follow-up appointments. Will let you know I get on.