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

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...

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