Tuesday, 26 April 2011

Hard cheese and warring cats

Autumn is one of those times when it can be difficult to know how to dress appropriately for the weather. Add to this annual experience the novel one of chemo-induced baldness, and you will readily appreciate how, on Saturday 23 October 2010, I found myself putting on and taking off my new knitted beanies in order to regulate my temperature and general comfort, working our which one I preferred to wear around the house, which one inside, which one was better for sleeping in. It gave me a new appreciation of the role the head plays in personal heat management. No wonder we have hair up there.

Part of the Pheasantry Plantation in Bushy Park, with evidence of autumn.
The Czech for November is the beautiful, rather poetic, word listopad ("leaf-fall").

The prevailing outside temperatures were still fine for walking around in and so my wife, my daughter and I took a trip to nearby Bushy Park for a stroll in the Pheasantry Plantation, followed by carrot cake and coffee in the Welcome Centre where I had lunched with my sister-in-law nearly a month previously. On the walk we were impressed by the sight of a number of Beautyberry plants decked in their eponymous blue-purple fruits.

Beautyberry (Callicarpa).
Not native to these islands, but nevertheless doing well in this small corner of Greater London.
The berries are highly astringent, but can be made into jelly or wine.

Less pleasingly, I discovered that I could now only eat one of the hard cheeses I had bought the previous day (soft cheeses now being off-limits to immuno-suppressed me). The Ossau-Iraty (made from sheep milk in the Northern Basque Country of France) was safe, but not so the Comté (from the east of the greatest cheese nation in the world), as this was unpasteurised. Blast!

On Sunday 24 October I felt fine for a trip to church, but a bit of hoovering later in the day wore me out. I managed a bit of office work, compiling an email address list (yay!), and later relaxed by watching a new television dramatisation of The First Men in the Moon by H.G. Wells.

From the 1964 film version of The First Men in the Moon.Professor Cavor (right) was played by the prolific comic character actor, Lionel Jeffries (1926-2010), seen here doing battle with an insect-like Selenite, about which I had a number of dreams after seeing this film at the age of nine.

A friend of mine, whose father was Polish, told me on this day of his efforts to look after the fabric of his family’s mausoleum in Poland, which was at risk from damp. I decided some time ago that I do not want to be buried, preferring to retain the greater choice of final resting place possible for those who are cremated. Still not sure where I want my ashes scattered though: it is a strange sort of decision altogether.

Given that I felt so tired, sleep that night was peaceful and long and I woke on Monday 25 October quite refreshed.

I managed some more work and some personal admin, followed by the modest exercise of a walk to our local Waitrose to stock up on chocolate in the form of the good-quality stuff recommended for cancer patients (it’s the anti-oxidants, you know).

The day’s main entertainment consisted of watching the uneasy relations between our cat—the rather neurotic Smudge—and the interloper, Frida, who is rather smarter than Smudge and steals her food, given half the chance.

Frida, the little sneak, stalks Smudge.

The view over my laptop on this nice sunny day.

Monday, 18 April 2011

Sickness, madness, a close shave and other delights

I knew something was wrong when I went to bed late on Friday 15 October 2010, so was not surprised when I woke in the small hours of the 16th with the horribly growing realisation that I was not going to be able to hold down my supper. Bother, bother, bother… Two trips to the loo later I was lying on the sofa under a blanket feeling sorry for myself and with a niggling anxiety that this was going to be the pattern of my weeks on chemo. As it happens, I think I had either eaten too much the previous evening or else some element of the meal had not agreed with me. My experience of chemo over the ensuing weeks in fact turned out to be that the first few days after treatment would have nausea as a feature, but that this would be well moderated by anti-emetic drugs and that there would be no more vomiting (phew).

Although I was able to enjoy a breakfast of porridge a few hours later and finish some office work, I felt wary and delicate through the rest of that Saturday and resolved to eat more sensibly—not that I had gone wild, you understand.

On Sunday 17 October another porridge breakfast was followed by a quiet morning, as I felt tired. For lunch we went to my brother’s house a few miles down the road, where my sister-in-law had made a delicious dish of pork in vanilla. My appetite was in overdrive and I had seconds, rejoicing that the flavours cut through the taste-blunting effects of chemo and the bitterness of prescribed mouthwash.

Later in the day we all went to an art and craft exhibition at the local arts centre, housed in an enormous church that was designed rather grandiosely for its suburban setting in the style of a French Gothic chapel. This building had lain empty, partly finished and vulnerable to the elements for several decades before being reborn as a spectacular setting for exhibitions of the visual arts. Here I met a most interesting man, who, in addition to selling his artwork, also had on sale a book recording his struggles with leukaemia and his take on life generally.  We fell into animated conversation about dealing with blood cancer and I came away with a copy of the book, which I read eagerly over the next few days. I was nervous about going out in crowds because of the risk of infection, but this warm and engaging man assured me that the high-roofed church would be a safe space.

The rather wonderful Philip Ledbury.
You can find out more about him at http://www.philipledburyartist.co.uk/

What is going on? In the early hours of Monday 18 October I was awake but also not awake and feeling a crushing weight on my upper body as I lay on my side. I tried to call for help but all that came out was a feeble whimper. I could not move and was terrified, even though the voice of reason somewhere in a safe corner of my mind told me that this was a dream state. Mercifully the nightmare passed. I fell into a calm and normal sleep and awoke peacefully as if nothing unusual had happened in the darkness before dawn.

The Nightmare, by John Henry Fuseli (1741-1825)
A graphic representation of the classic feeling of extreme pressure on the upper body experienced in what the French call un cauchemar.
As the Gallic wikipedia has it (rather a longer article than in the English version):
"La définition et les caractéristiques communes du cauchemar, en fonction des sources et des époques est celle d'une oppression sur la poitrine ou l'estomac, pendant le sommeil, et parfois, par extension, un rêve pénible ou effrayant."

A different sort of madness was delivered to my door later that day, as the friend who had just given me the Penguin Cafe Orchestra CD had also sent me DVDs of the first three series of the highly-regarded American television drama Mad Men, about which I had both read rave reviews and heard wild praises. Now it was mine to watch at leisure: a wonderful gift indeed it proved to be over the following weeks.

A small selection of the cast of the peerless Mad Men, a comprehensive evocation of the of Madison Avenue's golden era. This extraordinary work of art makes the Sixties—when I was a child—seem longer ago than World War II, such is the completeness of its evocation of the period, including what we now call sexism and smoking at work. Worth watching for the fashions alone, but there is so very much more besides.

There was a South American feel to Tuesday 19 October, as this was when we harvested the chillis I had been growing carefully for a few months. The seeds had been a gift from my mother-in-law and I regarded the fact that they had germinated at all under my care as a significant achievement. While I love many plants, know one or two things about others and can mow the lawn and root out weeds and ivy from where they are not wanted, the rearing of plants to flowering and fruitfulness has tended not to be my métier. It was therefore a happy moment when the time came to pluck these beauties from not one, but two, whole healthy plants.

Part of the chilli harvest.
These fiendish little blighters started off dark purple and they are some of the hottest of their kin I have ever tasted.

The fieriness continued as I listened to La Pasion Según San Marcos by Osvaldo Golijov, an Argentinian composer of Eastern European background. The CD had been lent to me by my friend G from his extensive collection of classical music (although the piece stretches the definition of “classical”somewhat). The work is an extraordinary amalgam of Afro-Cuban and Brazilian musical styles and vernacular Spanish translations of the most ancient of the four Gospels. Exhilarating percussion blended with Christian devotion in a wonderfully heady mix. Recommended. You can order your copy here.

Percussionists rehearsing on Cuban batá drums for a performance of  La Pasion Según San Marcos in 2005.
These double-heade drums derive from Nigerian forms and are very difficult to play authentically. Although now used in secular settings, the instruments are key to the rituals of the syncretistic cult of Santería, not known for its kindness to chickens.

In the afternoon I had an appointment with my haematologist, Dr M. The blood test (how little I knew of needles only a few weeks ago!) showed that my neutrophils—the infection-blasting shock troops of my circulatory system—were severely depleted, as was to be expected at this stage in a chemo cycle. They were 0.33, if you are interested; below 1 and one is in the undesirable state known as neutropenia. Accordingly I was given a course of antibiotics to take prophylactically for a week. More medication: such fun.

Wednesday 20 October found me doing some more office work and using one of the chillis harvested the previous day to make a meal of spicy beans and rice, a staple of our family diet.

This was very much a family day, as my son and his girlfriend had just become engaged, much to our delight.

THE engagement ring.

There was a heartening message too from a friend in the States. Here it is:

“As the alarm broke through the silence of our bedroom this morning at the ungraceful hour of 4:45 my first waking thoughts were of this world. I pictured it suspended in space. I saw it at the right tilt, hanging in space, like an ornament. I know it rotates just at the right speed to keep it all working with the timing of the sun, and the tilt has to do with the seasons which have to do with so many things like food production on the planet, so we all have a bit of bread at our tables. All of these thoughts came tumbling in my mind as I opened my soul to converse with God this morning.
All in all…I just woke up amazed at the details of life we take for granted, every day God keeps running this show. God is in charge…he has never let go, never looked away from the beginning. How many details do we never even give a thought to, and yet God does. He has the bases covered, he is taking care of his own. It's his nature to never let go of us. It dispelled fear this morning, as I put the power and majesty of God into my thoughts and prayers. ‘Therefore I will not fear, though the earth should shake and the mountains tremble, God is our refuge and strength, a very present help in trouble.’
God is watching over you, he knows all that you are going through, you do not walk alone. He holds you in the palm of his hand.”


They told me it would happen about two or three weeks into treatment and so it was that on Thursday 21 October 2010 it was obvious that I was losing my hair, my reasonably hirsute bonce being now in the nature of an illusion that it would be difficult to sustain for very long. There were more hairs entangled in my morning hairbrush than I was used to seeing.

Friend G came bearing more loans of classical music CDs, this time a mixed bag of Bach and Beethoven. We went for lunch at the local cafe: in my case a chilli chicken wrap followed by the not overly healthy, but nevertheless comforting, combination of hot chocolate  and (moist, unctuous) lemon drizzle cake.

In the afternoon I went for a walk by the river with another supportive friend, himself a lymphoma patient. He has a different flavour of non-Hodgkin’s from mine and is doing very well. I was heartened not only by his robust good humour but also by the information that his aunt had had Waldenstrom’s and lived into her eighties.

By the evening, although hairs were not leaping from my head of their own accord, it was easy (and painless) to remove them in clumps. I had made a decision at the outset of treatment on how I would deal with this eventuality and I would attend to that the following day.

Insomnia struck again in the early hours of Friday 22 October and so I used the waking time to catch up with The Apprentice on BBC iPlayer. Can’t remember now what happened in that particular episode, but there would certainly have been some time spent in exposing the self-aggrandising pronouncements of the participants to the ridicule of the viewers.

The Camel Estuary in North Cornwall, where, since 1993 we have enjoyed many happy holidays in a house belonging to friends along the coast. One of these friends sent me this photograph on 22 October.

Once the shops opened it was time to carry out the decision that would shape my appearance in a fairly radical way, although, as my brother was constantly assuring me around this time, the action I was about to take would place me firmly in the mainstream of male fashion. I strolled into Twickenham, first of all in search of warm headgear, knitted beanies to be precise. The British Heart Foundation shop (Twickenham has many charity outlets) turned out to have the best offerings in that line and I bought a black and a grey one for £1.99 each.

The barber’s shop was on the route home and I found the Turkish proprietor reading a newspaper—to improve his English, he later told me—and looking up the word “viability” in a dictionary. “How apt”, I thought, as I was pretty much preoccupied these days with questions of my own viability or lack of same. The poor man berated himself for his self-perceived deficiencies in English, although he is a pretty competent speaker of our far-from-easy language. I tried to encourage him by saying that I was sure my efforts at his native tongue would be pretty hopeless, but I am not sure whether he found this helpful.

He was, rather to my surprise, somewhat phased by my request that he shave my head on the grounds that my hair was disappearing anyway for a spell as a result of medical treatment. I found it hard to believe that he had never before—and he no spring chicken—been asked to perform this service for a customer. It was all over very quickly as there was less finicking around with tonsorial details than with a routine haircut and I was soon on my way, holding my newly revealed head quite high, as it happens, and touching the top of my skull occasionally in amazement at how much warmth radiated from it.

The comedian Harry Hill.
The current "corporate power-baldy" look involves sharply tailored suiting and aggressively white shirts with big collars. Not sure if Hill is taking the rise out of this style or not, but he could be...

Monday, 11 April 2011

The love of old friends

On Thursday 14 October 2010 and the following day I received much support and encouragement from old friends, not least from a group of five men I met originally … (think of a number) years ago at university.

One sent me a CD of the Penguin Cafe Orchestra, whose music I had been aware of dancing around but not to for many years.

Another, who has an extensive knowledge of light (no, I do not mean insubstantial) entertainment sent—and continues to send—links to youtube clips of classic British comedians. It is an education in craftsmanship: Tommy Cooper may have appeared chaotic and disorganised, but that was his act and the fruit of intense preparation. Change one letter of “act” and you have “art” and are borne towards the Latin maxim “ars celare artem”, which may be translated as “art consists in concealing the artifice behind it”. I have searched the supposedly wonderful www in vain for the correct attribution of this quote: I recall it as being from the Roman lyric poet Horace, but trawling around has left me unsure and not a little anxious as to the state of my memory. Onwards, regardless…

The Roman lyric poet Quintus Horatius Flaccus, aka Horace (65BC-8BC), as imaginatively rendered by the 19th-century German artist, Anton Alexander von Werner.
One thing that Horace 
did say was “carpe diem”, normally rendered in English as “seize the day”, although the root meaning of the Latin verb carpere is “pluck”, suggesting that the fleeting pleasures of life are to be regarded as ripe fruits. Leave them on the tree and they will rot: best to enjoy them now.

Yet another friend sent me a message designed (successfully) to inject some much-needed stiffness into my backbone. To quote from this would make me appear vain, so I will just say that he was very generous in his assessment of the more positive aspects of my character!

The fourth of this group has offered to lend his skills and experience in long-distance running towards fund-raising for my rare lymphoma, while the fifth came to visit me on this very 14 October (and is, at the time of writing, on his way to see me again).

Friend 5 arrived safely, showing all the cheerfulness appropriate in one who has recently retired from the hard work of school teaching, a career in which he had invested all the years since graduating in classics all those  … (think of a number) years ago. He brought with him a packed lunch, a wealth of news and conversation, a calming presence and the loan of two DVDs of a progressive rock band whose music he and I, alone among our friends, appreciated without collapsing into mocking laughter. The band in question is Gentle Giant, loved in their native England by (ahem) all too few, but rather more appreciated in Europe.

Gentle Giant, whose career lasted from 1970 to 1980.
Multi-instrumentalists all, whose music drew on a wide range of styles and influences, their later career floundered amid attempts to take their output in a more commercial direction.
You can find out more at http://www.blazemonger.com/GG/Gentle_Giant_Home_Page
My friend and I rounded off our time together with a stroll down to the nearby Thames and tea and cake in the excellent local bookshop that is not Waterstone’s.

Some of the Chilean miners whose ordeal underground finally ended on 14 October 2010 at 02.00 (UK time).
Their plight and extraordinary deliverance captured the imagination of many around the world and I hope they are doing OK now.
The picture also shows the President of Chile.

On Friday 15 October I became Medallion Man when I took delivery of a customised dog tag that would give brief details of my medical condition and treatment to suitable people should I ever collapse in the street. It was not that I considered this particularly likely, you understand, but I was apprehensive of falling into the hands of medical personnel whom I might not be capable of informing that the compound effect of disease and current chemotherapy was that my immune system could be severely compromised. I was carrying a warning card as well, but what if that had fallen out of my back pocket as I had collapsed in the street? So, belt and braces it was…

I listened to the CD of the Penguin Cafe Orchestra that had arrived the previous day and it was wonderful to concentrate on music that I had previously only experienced as background. The pieces had a minimalist style that filled me with a gentle energy, reminding me of an elegantly engineered clock mechanism. Although not overtly emotional in style, this was music with a beating heart and crafted with tenderness. It brought me tears of joy and gratitude for the love of friends and my ever-lurking fears were eased in an affirmation of the much that is good in life.

The Penguin Cafe Orchestra, founded by British guitarist, composer and arranger, Simon Jeffes, and active for 24 years  until Jeffes died in 1997.
This is the account Jeffes gave of how the idea for The PCO came to him:
"In 1972 I was in the south of France. I had eaten some bad fish and was in consequence rather ill. As I lay in bed I had a strange recurring vision, there, before me, was a concrete building like a hotel or council block. I could see into the rooms, each of which was continually scanned by an electronic eye. In the rooms were people, everyone of them preoccupied. In one room a person was looking into a mirror and in another a couple were making love but lovelessly, in a third a composer was listening to music through earphones. Around him there were banks of electronic equipment. But all was silence. Like everyone in his place he had been neutralised, made grey and anonymous. The scene was for me one of ordered desolation. It was as if I were looking into a place which had no heart. Next day when I felt better, I was on the beach sunbathing and suddenly a poem popped into my head. It started out 'I am the proprietor of the Penguin Cafe, I will tell you things at random' and it went on about how the quality of randomness, spontaneity, surprise, unexpectedness and irrationality in our lives is a very precious thing. And if you suppress that to have a nice orderly life, you kill off what's most important. Whereas in the Penguin Cafe your unconscious can just be. It's acceptable there, and that's how everybody is. There is an acceptance there that has to do with living the present with no fear in ourselves."

Sunday, 3 April 2011

Examination of the heart

On Wednesday 13 October 2010 I found the silver-headed ebony cane that had eluded me the previous day.

As it is not a working walking-stick, at least until I become seriously frail (joke), it had been hidden away for quite a while and its silver head was seriously tarnished. It was very satisfying—and quite a useful distraction from thinking about cancer all the time—to set about it with a cloth and metal polish and make it gleam once more. Here it is…

Silver-headed ebony cane acquired by my grandmother in Mesopotamia (now Iraq).
The handle sits perfectly under the hand.
It needs a metal ferrule on the end to make it pavement-proof.

Some of the delicate floral decoration of the handle.
The decoration feels indented. Does anyone out there know what technique would  have been used to create this?
Granny told me that the craftsman was called Zaroun,  the quality of whose work sadly declined under the influence of the alcohol with which he was plied by British officers (for shame!)

Lunch was at our local rugby-themed café with my brother and a friend to whom I had been keen to introduce him. When does fun end and networking begin, or indeed vice versa? My friend owns a market research business and at the time of this meeting was about to move from his previous company, of which he was one of the founders. I thought it might be interesting and possibly valuable to both of them if he and my brother could meet: possible work for them, more displacement activity for me.

More floral beauty, this time from the café.
Two miniature rugby players are just visible in the photo, standing guard in the window.

What was I seeking to displace, then? In fact, nothing too alarming on this occasion. I was due that afternoon to present myself for an echo cardiogram at the sister hospital of the one where I was being treated: so, no needles today! Detailed examination of the heart is required with the sort of chemotherapy I was receiving as a couple of the drugs involved, as macmillan.org.uk rather delicately puts it, can cause “changes in the way your heart works”. As with love, so with medical treatment, it would seem.

The journey to the hospital was not long or problematic but, once we had arrived, the powers that be succeeded in placing a number of obstacles in our way to finding where I was to have the examination. There were several notices proudly proclaiming adherence to contemporary standards of excellence in this and that—blah, blah—but some clearer and basic signage pointing one in the direction of where things actually were might not have gone amiss. We took a number of false turns, including one into a cul-de-sac where we startled a lurking member of staff. There was a sickly absence of natural light and a general feeling of make-do in the architecture, but mercifully the people called upon to work in this unpromising setting saved the day and made our visit there memorable for good reasons.

The procedure took longer than normal because the amiable and chatty cardiologist sensed that I was interested in knowing what the technology was telling her about my heart and made great efforts to explain what was on the screen. At various points the amplified sound of my heart filled the room with its rhythmic vigour. The welcome verdict was that my heart was in good condition, notwithstanding some evidence of inefficiency in one of the valves typical for someone of my age, and therefore that it should be able to withstand the combined onslaught of cyclophosphamide and doxorubicin. Bring it on (but only in regulated doses, please).

Typical echo cardiogram image.
You get to see your heart beating: quite thrilling, so long as it keeps it up...

Echo cardiogram being carried out. In order to see your own heart, you therefore have to twist around. This Scottish patient has been given a handle to grab; I wasn't. Pah! First, free prescriptions and now this further blatant discrimination against the English :-/