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."

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 :-/

New studies, encouragement and mouthwash misery

On Monday 11 October 2010 some more of the books I had ordered from Amazon arrived. A little while back, before my diagnosis, I had made a resolution (ha!) not to purchase any more books before I had finished the numerous ones already in the house either half-read or (to my shame) largely unopened. While not averse to the odd bit of comfort eating, a more persistent vice with me is comfort book-acquisition. One of the reasons I doubt e-books will ever completely take over from the printed variety is the fact that the smell of a bookshop is as potently aromatic as roasting coffee or unburnt tobacco. All of these aromas envelop our eager brains in cosiness and I dare you to resist their allure. I nevertheless made a further vow not to buy any more books after this latest order was fulfilled (with the exception, of course, of those needed for participation in the—mercifully informal—book club of which we have been members for many years).

Later in the day I received an email from a kind and thoughtful person who had attended the percussion workshop I referred to in an earlier entry. In it was this little fable:

A daughter is telling her mother how everything is going wrong: she's failing algebra, her
boyfriend broke up with her and her best friend is moving away.

Meanwhile, her mother is baking a cake and asks her if she would like a snack, and
the daughter says, "Absolutely Mum, I love your food.”

Here, have some cooking oil," her Mother offers. "Yuck" says the daughter.

“How about a couple of raw eggs?" “Uuurgh, Mum!”

"Would you like some flour then? Or maybe baking soda?" “Mum, those are
all yucky!"

The mother replies: "Yes, all those things seem bad all by themselves but when they
are put together in the right way, they make a wonderfully delicious cake!”

God works the same way. Many times we wonder why He would let us go through such bad
and difficult times. But God knows that when He puts these things all in His order, they always
work for good! We just have to trust Him and, eventually, they will all make something
wonderful!

Christmas cake, fresh from the oven.
Oh my!

 I learned of another nice thing today and a welcome resource in the form of an occasional blog by Dr Chris Dowrick, well becoming : “a blog about being well, becoming well, staying well - and flourishing. Written by a professor and family doctor living in Liverpool, UK”. I particularly like Dr Dowrick’s thoughts on the banyan tree (entry for 20 February 2011).

It was a beautiful autumn day, if a trifle chilly and blowy, and my wife and I enjoyed a walk in the afternoon. Supper was delicious and wholesome: trout with herbs (including fennel, so perfect with fish), accompanied by couscous and roasted vegetables. It tasted so wonderful that, even though subtle in flavour, it overcame the bluntness inflicted on my tastebuds by the blitzkrieg combination of chemotherapy and mouthwash.

The effects of these two could not however be kept at bay for long, as I realised when I woke from a good sleep on Tuesday 12 October to the now familiar bitterness at the back of my throat, the concomitant of the cardboard taste that had settled on my meals. I cursed the drugs and mouthwash even as they battled within me for my ultimate good.

Harpies, winged spirits sent by Zeus (the Saddam Hussein of Mount Olympus) to torment King Phineas of Thrace for using his prophetic gift to reveal the secrets of the gods.
Zeus blinded the unfortunate king and placed a banquet in front of him at regular intervals, which the Harpies proceeded to snatch away or befoul,  rendering it either unreachable or inedible.

I felt a bit shaky, which I attributed particularly to vincristine, a chemotherapy drug that I have since discovered the Americans now rather frown on because of its tendency to cause damage to the nerves. In spite of this and of the gustatory issues already mentioned, I enjoyed my usual fibre-rich breakfast. I also managed 20 press ups: somewhat below my personal best of 30, but an Olympic performance when compared to what was to succeed it over the subsequent weeks and months of treatment.

I was considerably buoyed up later in the day by a visit from my good friend P, with whom I always enjoy wide-ranging conversations, typically touching on music, film, philosophy, spirituality, the London Underground, food and many more. He had recently developed an enthusiasm for white and green teas—not least as a result of an increased number of business trips to the Far East in recent months—and he brought a green variety for me to try. Even before I tasted the healing brew I was entranced by the sight of the dried leaves uncurling in the boiled water and sinking to the bottom of the mug, where they swayed gently like the fronds of an undersea plantation. The taste was subtle but very refreshing and I welcomed the antioxidants into my needy frame.

For a reason it now irritates me to have forgotten I wanted to show my friend there and then one of my most prized possessions, an ebony walking cane with a decorated silver handle that my paternal grandmother had bought in Iraq (or, as it was then, Mesopotamia) in the years after the First World War. Unfortunately it was buried so deep in a cupboard that it eluded me that day; of such minor frustrations does life so often consist.

My friend's legs.
Note mug of green tea on table.
A further oriental note is struck by the abandoning of shoes inside the front door of the house (not pictured).

Seeing how it goes...

At 4.30 am on Saturday 9 October 2010 I was awake, but feeling peaceful. I reminded myself that I was taking prednisolone, a powerful steroid, for the first few days of each chemo treatment cycle and that this would mean more early-morning wakefulness. My mood was subdued but not low or depressed.

Around 7am I took my various medications against side-effects: lansoprazole (a proton-pump inhibitor to manage production of stomach acid), ondansetron, metoclopramide, anti-fungal, laxative sachet. Prednisolone would follow with breakfast. Quite a cocktail, but once these were down the hatch, I could get on with the rest of the day, such as it was. It was clear that I was not going to be especially energetic on this particular Saturday.

The first of the books on World War II that I had ordered arrived safely, but I found myself modestly diverted by musing on the man who had given—or rather, not given—his name to the classification of my condition, Thomas Hodgkin, the eminent Victorian pathologist, social reformer and philanthropist. Waldenstrom’s macroglobulinaemia is a non-Hodgkin lymphoma, one of around 20 disorders that are so classified. For a while I entertained the possibility of writing a biography of the man until I found out that the job had already been done by others. So it was that I abandoned this route to fame and fortune and instead ordered their book from the trusty Amazon. Hodgkin, appropriately enough for a pathologist, himself succumbed to a micro-organism and died of dysentery in Palestine, where he was accompanying a friend and acting as his personal physician.

Thomas Hodgkin (1798-1866)
He published a paper called in 1832 "On Some Morbid Appearances of the Absorbent Glands and Spleen" that was based on observations of seven patients and led a subsequent researcher to give the name "Hodgkin's lymphoma" to disease that he identified in his own patients several decades later. The tissue samples from Hodgkin's patients were preserved at Guy's Hospital for over 100 years and modern re-examination of them revealed what we now know as Hodgkin's lymphoma in only three of them (the remaining four included cases of non-Hodgkin lymphoma, tuberculosis and syphilis).

Sad news came through today of another death in foreign parts, that of the Scottish relief worker, Linda Norgrove, who was killed during an attempt to free her from kidnappers in Afghanistan.

Linda Norgrove (1974-2010)
A foundation has been set up in her name and you can find out more about it at:
http://www.lindanorgrovefoundation.org/

Distance from home ended up being something of a theme for the day, as I received an email from a friend in Canada who is a vicar. Here’s a quote from it, in which he sets out some of his thoughts for the sermon he was going to preach the following day:

“…reflecting on what Jeremiah has to say about what to do in a time of exile - build houses, plant gardens, take wives for your sons, give your daughters in marriage etc.; in other words, settle in for the long-haul, and I see an incredible parallel with the words for the newly diagnosed that you quote in one of your blog entries.  If exile is about dis-placement or dis-location, about being somewhere we would rather not be, then I can see how your situation could be read as an a kind of exile....  not where you want to be.”

I found in this an assurance that resilience could be granted me in my recently changed situation, in which so many former preconceptions and assumptions had been overturned or at least rearranged. Interestingly my vicar friend knows a lot about changing location. He is British, but he and his family have found their home to be in Canada. Where and what indeed is “home”? How do we know when we are “at home”?

Sunday 10 October was to bring a mixture of pain, discomfort and relief, although it was the youthful revellers outside in the street that woke me up at 2.30 in the morning. Quite a common experience as our road, being a long cul-de-sac, offers a cut through to various destinations and is parallel to a major trunk route. Cars also frequently use the road to turn around in, sometimes noisily. Adding to the fun on numerous occasions throughout the year are rugby fans making their way to the south and west stands at Twickenham. Not bad for a leafy suburban street, he said without a trace of irony.

Once awake I was also aware of stomach cramps, but they were not so bad that I could not drift back to sleep, or at least doze peacefully, until 5am. Then I really was awake, thanks again to the stimulant effects of prednisolone. I did some work and revelled a bit in the craziness of the timing.

The stomach cramps were worse this time though and had brought along a fellow traveller in the form of acid reflux. Work therefore took a back seat while I wallowed therapeutically in the music of Liszt on the radio (to be more precise, via internet radio on my phone, which is not really “radio” at all). The solo piano piece being played was Les Jeux d'Eaux à la Villa d'Este (The Fountains of the Villa d'Este), from the third volume of Liszt's Années de Pèlerinage, composed in September 1877. I give all this detail, by the way, in case you wanted to track the piece down and share in the joy!

Franz Liszt (1811-1886)
A musical star, whose flamboyant and demanding playing placed such strains on the pianos of his own day that  manufacturers were encouraged to make structural modifications to their instruments.

The waves of physical discomfort were somehow carried, transformed and finally diffused by the ebb and flow of the watery music. This was musical medicine, something which I have often pondered and sometimes bent people’s ears about, and I was reminded of the first and only book review I have ever written, of Music & Meaning – opening minds in the caring and healing professions, by Mary Butterton (detail again given for the purpose of sharing). The following is my summary of the central point of the book:

“… each individual’s experience of music reflects the patterns of holding, nurturing and attachment laid down in infancy and built on in later life. As a result, what the author refers to as “the vitality affects” of music – its shape, texture, speed, dynamics and so on – are sensed by the listener as corresponding to elements of his or her inner world, with the resulting feelings being “projected”, in the classic sense familiar to all devotees of psychoanalysis, on to the music …The author … goes on to propose that personal transformation can occur when the listener “owns” the feelings aroused by the music and the feelings can thus be brought into the open arena of therapy. When we listen to music actively, she argues, we are not merely accessing the world of non-verbal emotion, but are receiving insights into the pre-verbal world of our own infancy.”

The author’s case makes intuitive sense, although I am not sure it could ever be formally proved. How, for example, do we recognise or evaluate the pre-verbal world of our own infancy, of which we appear to have no conscious memory? Nevertheless it has certainly been noted by a number of observers that the movements of musical phrases reflect how our emotions feel to us, so that a drooping downward phrase feels sad, while an ascending phrase gives rise to feelings of uplift and is perceived as “happy”; these movements can in turn be mirrored in our facial expressions and body language. From these relatively simple observations can arise a number of therapeutic possibilities. The bean counters may sadly and consistently fail to resource arts therapies, not least music therapy, but fortunately many of us are able to self-medicate with music and are firmly hooked.

A quiet morning in bed followed and an American friend telephoned later in the day, telling with great relish of the variety of edible plants that he and his wife were able to grow in the soil of southern California.

Here ended the first weekend on serious chemo. I survived.

Keith Moon (1946-1978)
The original drummer of The Who, whose, er, flamboyant and demanding playing placed such strains on the drum kits of his own day that manufacturers were encouraged to make structural modifications to their instruments. Nothing adequate could however be done to strengthen the hotel toilets that Moon was accustomed to destroy with high explosives. I hope it is fair to say that his music mirrored his troubled internal world.

Grown-up medicine

How often do we get up from our beds thinking that we know what the day holds, especially when we have been given some advance clues, only to find that events unroll either beyond or below our expectations? When I woke on Friday 8 October 2010, my head was full of information about R-CHOP chemo, received a few days previously from my haematologist and augmented by subsequent reading online, but in reality I had no idea how the day would feel as I lived it out.

The recommendation is always that chemo patients be accompanied to their treatments by a supportive friend or family member and on this particular day my brother did the honours. The staff on the Haematology Day Unit wanted to see me at 10 in the morning, as the first treatment session generally takes longer than subsequent ones. Shortly after arriving at the Unit, I was introduced to my key worker, one of four nurses on the team, whose first job it would be to brief me on the drugs I was about to receive and the changes that would be necessary or advisable in my lifestyle over the coming weeks and months.

Most of these changes, as far as I could see, would arise from the fact that chemo is nasty poisonous stuff that kills more than just cancer cells and blitzes your immune system, most particularly about seven to ten days into each 21-day treatment cycle, at which point the neutrophils, foot soldiers of the battle against invaders, take major casualties. So it was that I learned with some sadness that I should avoid fruit that needed washing, because of the difficulty in getting it truly clean. It would be advisable to peel such items as apples and pears. No more grapes either (unless I went to the trouble of skinning them); strawberries and raspberries would also be particularly problematic with all those nooks and crannies where microbes could lurk. Seafood was a no-no, while soft or blue cheeses would most definitely be off the menu.

While I was undergoing treatment I should also avoid the attentions of dental hygienists, described by my key worker as “butchers", as their techniques could injure my gums and open the way to infection. I should from now on use a soft-bristled toothbrush, clean my teeth four times a day and use mouthwash (available on prescription) on each occasion. From now on I would be drinking filtered water and alcoholic hand gel would never be far away. As my mouth would be at risk of thrush infections, I would also need to take a daily anti-fungal capsule.

Water filter
After weeks of the stuff, I am not entirely convinced that these produce better tasting water:
to me it seems bitter and rather oily

The briefing would not have been complete without touching on hair loss, which would probably occur about three weeks into treatment. It was part of the nurse's protocol to ask whether I would be interested in a wig. My reaction to this offer surprised me with its vehemence and I admit that I said that I did not want a “dot-dot-dot wig". My response having been registered as a “strong no", the way was clear for treatment to begin and so we moved into the main room of the Unit, where I chose a chair and was surprised to find that, contrary to NHS norms, it was extremely comfortable and supportive.

For the second time in my life I had a cannula inserted in my arm and was attached to a drip. Simple saline solution was administered first to flush through the lines and the first injection I received through the tube was a strong dose of a drug called ondansetron, a state-of-the-art anti-emetic and thus a powerful remedy against nausea and vomiting. I was also given prednisolone tablets to take as part of the R-CHOP regime. Next came a small bag of vincristine, which came packaged within an outer yellow bag warning of the highly toxic nature of the drug: administered outside the vein this particular substance can be fatal and so I was advised to let the nurse know immediately if I felt any pain or discomfort at the injection site.

Seeing the anxious look on my face, the nurse delivered one of the best jokes I have ever heard: “Don't worry; I won't kill you. The paperwork's horrendous". I felt immediately better for the laughter that could not help but follow this invigoratingly honest statement.

Next came doxorubicin, administered from a large syringe into the cannula. This drug, which can have terrible effects upon the heart, is a pale pink colour and so resembles diluted Campari. Appropriately enough it is derived from microbes found in Italian soil in the 1950s. As well as being toxic, it has the added effect of turning one's pee pink for a while.

Last of all came two fat syringes of cyclophosphamide, which would be the main cause of my future hair loss. This was the only one of the cocktail of drugs that caused a nearly immediate side-effect, namely a feeling in the bridge of my nose as if I had inhaled pepper accompanied by lightheadedness. These feelings passed off after about ten minutes, which was a relief as, although mild, they were disconcerting.

After about half an hour I felt ready to be on my way, the whole experience having left me somewhat tired and queasy. I had to take with me a bulging plastic bag full of what were now, to me, freebies: mouthwash; prednisolone to be taken for a further four days; anti-fungal capsules; three days' worth of ondansetron to keep nausea and sickness at bay; another anti-emetic—metoclopramide—to be taken for the rest of the treatment cycle and with the added benefit of mitigating the gastric reflux that could arise from prednisolone; laxative sachets (orange flavour, what else?) to be mixed with water to counteract the constipation that would be a side-effect of the anti-emetics. To guide me through this pharmaceutical maze, my key worker very helpfully prepared a chart showing the various drugs, dosages and frequencies of administration.

As the evening progressed I was conscious of a growing but bearable feeling of nausea. Like any normal person, my deepest apprehension about chemo hovered around how ill it would make me feel and so I was quite glad when the time came for me to take another anti-emetic to keep sickness at bay.

I had difficulty sleeping, not least because of the stimulating effects of prednisolone, and so I sought solace in music and in one of the recordings which my friend had kindly lent me a few days earlier: solo violin music by Bach coupled with some of his vocal motets. The rise and fall of the melodic lines were heart-rending and sublime and tears came. I gave thanks for the beauty of the music and the feeling of peace and rest that duly descended.

Johann Sebastian Bach (1685-1750)
Painted by Elias Gottlob Haussmann in 1746, the all-time mightiest man of Western music is shown holding a modest sample of his vast output.

A "forensic reconstruction" of the head of JS Bach by Caroline Wilkinson,
who worked from the Haussmann portrait and from a metal cast of the great man's skull.
What do you think? This seems a kind face...

Reflection, research and action

Although, as you will have seen from my account of what happened on 5 October, I made up my mind to proceed with a more robust regime of chemotherapy than I had started on, the deeper recesses of my mind still resonated with uncertainty. That is why I found myself awake at 5:30am on Wednesday 6 October, trawling the Internet for information on the possible risks of acute myeloid leukaemia associated with the treatment I was about to receive. Will I never learn? I am not scientifically trained and so, in trying to seek out such information, I was like a blindfolded man in a cave trying to catch tiny shrimp from a pool he had yet to find and using a net with a hole in it. After some time I found myself sufficiently reassured to be able to go back to sleep for a little while, but I would not presume to share what I discovered, as the purpose of this account is to describe a personal journey rather than to issue authoritative pronouncements on science that I am not qualified to make.

Once up and about I decided to gather some moral reinforcements and went to have a chat with my neighbour, who is a Macmillan nurse. As well as giving her the latest medical news, I asked her how to set about getting community-based support. Her advice was to go and see my GP. Amazingly, I was able to secure an appointment that very day with the doctor of my choice and this bolstered the sense of rightness I felt about this course of action (although this thinking is not grounded in logic, I readily concede).

To see this particular doctor is always a pleasure, as his manner is consistently calm even if he is discussing uncomfortable realities. Another bonus is that he has a fantastic collection of colourful turbans. The one he wore on this particular day must have been so dazzling that I have forgotten what precise hue it was. This was in fact the first opportunity I had had to see him since my diagnosis, many of my previous dealings with him having arisen from rather more trifling concerns than those now presenting themselves. He readily understood my need to access additional support in view of the fact that I was about to experience a more demanding chemo regime and he agreed to make the necessary referral to the local hospice where Macmillan services were based.

The trip to the surgery had the added benefit of giving me a walk there and back of around two miles and I was able to stride along at quite a brisk pace. Once home I gave my news to one of my closest friends over the telephone and to other friends by e-mail.

After all this energetic communicating, I felt buoyed up, but still quite emotionally vulnerable. I have often found cooking a very potent displacement activity and so I made a lamb mince curry for the family, later distracting myself still further by ordering from the trusty Amazon a total of four books: single-volume histories of the two world wars, together with “Tommy" by Richard Holmes, a much-respected account of life on the Western Front, and “Overlord" by Max Hastings, a study of the Normandy landings and their aftermath.

The final weapon in my armoury against the onslaught of gloomy thoughts and preoccupations was the return to the television that evening of that modern equivalent of the Victorian freak show known as “The Apprentice", starring the prickly teddy bear of business himself, ennobled since the last series and now therefore known as Lord Sugar. I duly armed myself with a collection of virtual rotten fruit to hurl at the participants as soon as they uttered their inflated pronouncements about their skills and achievements.

Lord Sugar of Nascent Beard (for it is he),
caught in the act of firing someone.

These various tactics to dispel brooding seemed to have worked because on Thursday 7 October I faced the day rather tired but in a calmer frame of mind. This state of equilibrium was however threatened by the cheeky black cat Frida, who, you will recall, belonged to a neighbour but who had shown increasing signs over recent weeks of wanting to adopt us. The crafty feline had identified the bag in which our own cat's food was stored and lacerated it in several places, eventually making a whole large enough to access what were its, no doubt to her, scrummy contents. Such behaviour was beginning to spark a change in our attitude to this otherwise likeable and beautiful creature, as she was showing every sign of being more intelligent than our own pet and therefore as constituting something of a threat to her. We were not yet so annoyed however as to give Frida her final marching orders.

I had lunch at our local cafe with a friend from church who was beginning to support me with visits, conversation and prayer, as well as loans of CDs from his ample collection of classical music. He cautioned me against throwing myself too readily into “the WM Cause", saying that this particular time was one of regrouping and concentrating on my own existing interests, rather than for being pressurised into others' agendas. I valued the kind intent behind this advice, believing in my quieter moments that there would be ample time to be more involved in raising awareness of this rare condition and thus in helping to generate more funds for research. I cannot however ignore the white flame burning deep inside me, believing firmly that I have a responsibility to play my part in the battle against my disease.

In the evening I prayed with my wife and son about the treatment that would begin the next day. The phrase from Scripture that came to mind were “underneath are the everlasting arms", words of assurance given to Moses as he faced various dangers.

Moses, as played by Charlton Heston.
A rather fuller beard than Lord Sugar's, but probably not his own.

Give it the CHOP

Tuesday 5 October 2010 was to be another milestone in my experience and understanding of this disease and its treatment, but in the small hours of the day, as I lay awake listening to iTunes U on my phone, I had no inkling of this. Instead I found myself pondering the distinction (and maybe at the same time the complementarity) between neural events and mental events and wondering whether we would ever fathom the mystery of consciousness, how it is that we experience and interpret being alive.

When however I arose from my bed at a normal time, such pretentiousness was driven from my mind (whatever we mean by such an entity) by the persistent feeling of dizziness hanging over from the previous day. Mind you, I was not so much in a whirl that I was unable to continue my rather disorganised attempts at maintaining physical fitness and so it was that I managed 20 press ups.

My brother arrived in due course to take me to my regular appointment with Dr M, the haematologist. While we waited for the usual blood samples to be taken and for me to be called in to see the doctor once these had been analysed, my brother and I chatted merrily, as we do, about our many matters of mutual interest. Not least among these is the state of the NHS, in which my brother worked for many years as a GP and which he now supports as an independent consultant.

In due course, the phlebotomists and pathologists having done their work on the samples, I was called in to the doctor's office and my brother came too. I had come prepared to ask about this mysterious substance, rituximab, but I found the doctor ready to head off my question at the pass. How could I forget she was the physician-in-charge? She told me that she had, given the rarity of my lymphoma, consulted a leading specialist in the condition, based at University College Hospital (UCH), one of the London teaching hospitals. The expert, who had also offered to see me in due course, had indeed recommended treatment with rituximab, but this needed to be combined with a chemotherapy regime known as CHOP, named, as such regimes are, by the initial letters of their constituent elements. The resulting concoction, to be delivered every 21 days (to allow for recovery of strength) was known as R-CHOP and offered a better remission than the relatively simple pill-based treatment I had so far been receiving.

So I was being offered the baby and the bathwater, but what was in the water? You can find a description of R-CHOP here, including a list of side effects. The most obvious ones that occurred to me at the time, and which Dr M confirmed, would be nausea and possible vomiting and hair loss, although I was assured that anti-emetic drugs were now very effective and would be included in my treatment. Going bald for a while was just something that I would have to accept, although I found myself getting quite emotional at the prospect of it, I think because it would mark me out to all the world (okay, that's an exaggeration) as a cancer patient.

The periwinkle, a pretty little flower that packs a punch.

Vincristine, a highly toxic substance and potentially lethal if administered outside a vein, derives from this plant and is one of the elements of CHOP (Vincristine was originally known as Oncovin, so that is where the "O" comes from: these chemo acronyms are sometimes a bit of a stretch—wait until I introduce you to BEAM!)

I would have to wait for the rituximab. There were two reasons for this: the first was therapeutic; the second was economic, in that The National Institute For Clinical Excellence (NICE) had not so far found it in its steely heart to admit this well-known and effective combination of human and mouse protein into its approved armoury of treatments for Waldenström's Macroglobulinaemia. The doctor would therefore have to apply for special funding, either from the local PCT (itself due for the chop under NHS restructuring plans) or from a special £50 million fund set up by the Government for cancer treatment in London. She was optimistic that funding would be forthcoming, but rituximab would not be added to my treatment regimen until the third or fourth round.

When however the good doctor produced the yellow consent form for me to sign, she placed a white sticker on it on which was set out a list of side effects, the last one of which alarmed me even more than the others: “increased risk of leukaemia". Suffice it to say that I did not feel inclined to sign the form there and then. Dr M explained that the risk was of acute myeloid leukaemia and was in the region of 5%; also, my existing disease would be a complicating factor in any treatment of AML. She emphasised that the treatment regime recommended was most powerful and effective but conceded that the leukaemia possibility was “the sting in the tail".

I needed time to reflect and was, more than ever, grateful for the presence in the room of my medically qualified brother. It was agreed that he and I would go away and reflect, have some lunch and then go back to see the doctor in the afternoon.

As on the day of my diagnosis, my immediate need was to get out in the fresh air and be under the naked light of heaven. So it was that I made my way outside the hospital entrance to the spot where I had felt the clasp of despair after hearing for the first time that I had an incurable cancer. My emotions on this later occasion where a muted version of that panic but threatened to drag me down once more into a bleak darkness. It was at this point that I felt the benefit of my previous experience and knew that I had acquired some resilience over the few brief weeks since my diagnosis.

I first telephoned my wife, who was quite clear on two things: first, that the treatment recommended was a good idea and second, that she would support me through the rigours of the regime. I next rang Father Milligan, the vicar for whom I work, to inform him that I could be about to embark on a course of treatment that would keep me away from the office for some months. This was bad news for him, but he was gracious and compassionate, as always.

Over the course of a simple lunch from the hospital café, my brother watched supportively as I talked myself into accepting the recommendation of, now, two specialists. There was just one question that I needed to put to Dr M before my mind could be finally made up. Back in her consulting room after a little while I asked her whether the risk of leukaemia also attached to my current treatment. When she confirmed that it did, I signed the consent for R-CHOP.

Treatment would begin the following Friday, 8 October but first she needed to record my weight and height as the doses of poison would be tailored to these. She also took me to meet the nurse in charge of the Haematology Day Unit next door. I was struck immediately by the positive atmosphere among the various patients distributed around the two circles of comfy chairs, each one attached to a drip, some receiving transfusions of blood, others doses of clear liquid, yet others resting after treatment. I was to become very familiar with this room—its comforts and trials—over the course of the next four months, but for now I returned home in something of a daze.

As it happens, the delay between blog time and real time has caused the writing of this entry to coincide with my first appointment with Dr M following my final dose of rituximab on 11 February. I am therefore going to fast forward to today and tell you that indications are that treatment has been successful: my haemoglobin now stands at 12.1 (grams per decilitre), whereas at diagnosis last September it was 9.8, so I am markedly less anaemic, with the prospect of further improvement as the depressive effects of chemo on normal cells ebb away. The production of ImG paraprotein (that was silting up my blood vessels) has also markedly declined. More unpleasantly, I will be having a further bone marrow biopsy (BMB) on 28 February to see how much the population of rogue B-lymphocytes that were infesting the hollows in my bones has declined. There will be another CT scan a couple of days after that to assess the reduction in swelling of my lymphatic tissues, notably the spleen.

Dr M wants to see me again towards the end of March. At the beginning of March I will be going, armed with BMB and CT results, to see the expert at UCH, who has something dramatic planned for me later in the year. This will in fact be my second visit to UCH, but the account of my first visit as well as of the highways and byways of R-CHOP and other adventures between October last and today will follow in the normal sequence of blog time.

I am hoping that I will be able to bring the timing of blog and actual events closer together over the course of the next few weeks, but the return to normality and the steady return to my day job may just get in the way a bit. We shall see, but thanks for being with me on the journey thus far.

A scene from Aesop's fable of The Mouse and The Lion, another instance of how a small entity comes to the aid of a larger one. You can find the story here

Rituximab is an assemblage of human and mouse protein that targets a particular marker on WM lymphoma cells and wipes them out. Respect the mighty mouse, then.