Monday, 21 March 2011

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

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).

Friday, 11 March 2011

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:

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.