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.