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A month of radiotherapy.

Monday 6th August.   A blue sky, bright sunlight, temperatures in the high twenties. The heatwave continues and shorts worn with socks are now the fashion.

I make my way to the Radiography Planning Department at Manchester’s Christie Hospital. The purpose of my visit is for a unique plan of treatment to be prepared. I have a CT scan which gives my cancer specialist, Dr. James Wylie, information from which he can devise the course which will last for four weeks. A calculated amount of high energy x-ray beams will be directed at the prostate. This will cause damage to the cells of The Alien which, in turn, will stop them from dividing and growing. The hormone therapy which I have had during the preceding six months has possibly decreased the size of the prostate by as much as 20 per cent and made The Alien more susceptible to RT.

During the scan three tiny tattoo marks are made in specific areas on my hips and lower abdomen. This will enable the radiographers to set myself and the linac in exactly the same alignment for each of the 20 sessions. The scan also shows the precise location, size and shape of the prostate which ensures that the radiotherapy is targeted at The Alien and that the surrounding tissue – mainly the bladder and the colon – receive as little as possible.

 

The First Week of Treatment.

Monday 20th August.   It’s still very warm but I forgo the shorts. I present myself at The Christie Radiotherapy Department and am directed to Suite 3. There are 11 suites in total. I am welcomed by staff clad in maroon coloured scrubs and am comprehensively briefed on procedures and possible side-effects. I am trained, prepared for what will very quickly become a familiar routine.

I climb onto a table, there is a soft, yielding headrest and my knees are slightly elevated by a cushion. The tattoos are exposed and painstaking alignment commences. Small movements of myself, the table and the linac. Measurements are read and sharply defined green lines move over my lower abdomen. Millimetres are critical. The team become focused on the alignment. It has to be precise. They notify me that they are leaving  to go to their shielded control area. The team can observe and talk to me via CC TV.

Suddenly, silence, stillness. I concentrate on remaining perfectly motionless. I am not quite cognisant of what is to happen but the arms of the machine, a linear accelerator, which surround me begin to make  noises and begin a slow 360 degree sweep in one direction, pause, generate different noises, and then proceed in a slow 360 degree rotation in the opposite direction. The machine is quite vocal. It sings its song. Whilst I am zapped by high energy x-rays I lie and listen to the music of the machine. There is no sensation and I am somewhat disappointed that a Star Wars-like coloured beam does not emanate from one of the pieces of equipment circling me. I am informed that each machine costs in excess of £3,000,000. The greater part of the linac is installed in and beyond the wall of the room at the head-end of the table.

 

The Second Week.

I am now an old hand. Grizzled, experienced. The staff and I are on first name terms. I am informed that I have, for some unknown reason, become one of their “favourites”. What have I done to deserve that honour?  Can it be my happy socks?

And halfway through the week the anticipated side-effects begin. I have read about them, been informed of them by the radiographers  and now they are upon me. Urgency and frequency. I am given Tamsulosin by a doctor. It gives no apparent relief and my journey by metrolink tram to the hospital becomes increasingly fraught.

 

The Third Week.

The side effects become more acute and, by necessity, I am confined to quarters except for my daily commute to The Christie. I have now exchanged the mode of travel from the tram to a car. This journey typically takes 25 minutes. With some foresight and planning I can just tolerate this amount of time. My appointment times are helpfully changed so that I am able to travel when there is slightly less congestion on the roads. There is always traffic congestion in Manchester. It is the second most congested city in the UK after London.

I am now visiting the bathroom 10 – 15 times during the night. I am becoming incredibly fatigued. I no longer go to my music studio (The Struggle). The beam is affecting my bladder and colon.

So it’s time to turn up my resolve. I am determined to see this through. I am resolute. The equation consists of short term difficulties, inconveniences, disruption, against an extension of my life. It is a no brainer.

And several of the radiographers have gleaned during our conversations that I am a composer. A few have read my blog and show an interest in my music. Next week I will present them with some of my CDs as a grateful thank you. It will be different from the cakes, chocolates, wine and flowers that constitute the usual currency of patients’ gratitude. The staff, are beyond praise. They help to create and sustain the ethos which makes this hospital such a special place. They are all mostly young, some having just completed their three years of training. When they are asked what they do, I would like to imagine their response as being along the lines of “I save lives and give people hope”.

 

The Fourth Week.

I am finding that the weekends of rest are necessary. I am informed that the tissue surrounding the prostate, which is suffering collateral damage from the radiation, can recover to some degree. Again I turn up the resolve button. I am reduced to a state of almost total exhaustion,  this post has taken several days for me to write. Interesting prose and wit elude me.

As ever the days slip by. Time is slowed. It is moving slower than the rate of tectonic drift. There has been no respite from the side effects of urgency and frequency. Doctors inform me that this is not uncommon and that the condition will typically continue for six to eight weeks after completion of the course.

The final date of treatment at last becomes the present. It is Friday 14th September. My course of treatment commenced in hot Summer weather, today it is distinctly Autumnal although the leaves have not yet begun to fall. Two radiographers, Thomas and Aneeka, guide and instruct a student who has difficulty in manoeuvering my body into the correct alignment. She will learn. There is an air of celebration. We joke (“Here I lie prostate before you”). The machine commences its circumnavigations and sings its song. We hug and say our goodbyes and I bid my farewell of these special people.

Previously, when the bell has been rung, I, together with all the others in the vicinity have applauded. That signifies many things including feelings of empathy and brotherhood (sisterhood?) And now it’s my turn. I have been waiting a long time for this. I grasp the plaited rope and ring the bell the required three times fortissimo. I leave the hospital with layers of complex emotions.

 

The bell.

It is often an emotional moment when patients who have completed their course of chemo or radiotherapy get to ring the bell. And there is a fascinating, rather magnificent history attached to this celebration.

Emma Payton was eight years old when she was diagnosed with a rare form of soft tissue sarcoma on her face. After some treatment at The Christie it was decided that she would benefit from Proton Beam Therapy. At that time The Christie did not have this technology so Emma went to a hospital in Oklahoma, USA. There, on the final day of her treatment, she rang the bell. It was an already established tradition. Her family were so inspired by the moment that they have since donated almost 200 bells to hospitals across the UK.

As you can see from the photograph, the bell is a rather hansom specimen, highly polished. It has a nice length of plaited rope attached to the clapper. The verse on the wall behind the bell reads:

Ring this bell
three times well
its toll to clearly say
my treatment’s done
this course is run
and I am on my way.

Emma Payton/Maria Watt

When the bell is rung everyone in the vicinity, staff and patients, stop what they are doing and applaud loudly and enthusiastically and with recognition.

This year The Christie Proton Centre opens for business. Emma and her family have reserved the special one hundredth gold bell for the proton beam therapy department.

 

Moving on, looking forward.

I am informed that the side effects of the RT will take 6 – 8 weeks to resolve. During this period I will adopt a period of iron discipline. I will consider eating lettuce, having an alcohol free day and inducing sleep by listening to minimalist music. I have acquired a pedometer app on my phone. I will acquaint myself with this toy, mindful of the fact that my walks around the ‘hood will, by necessity, have to remain within a short distance of the bathroom and I will watch programmes on the TV which show people running very quickly. Exercise by proxy.

30 months of HT (Prostap) lie ahead. I will seek to find ways of mitigating the prominent side effects of this which are, for me, fatigue, breathlessness and frequent hot sweats. As soon as it is possible I will resume the commute to the Struggle and summon the required level of cognitive energy that I need to compose. My music is perhaps the principal victim of this rather unfortunate period in my life.

I am all too aware, despite the last line of the verse attached to Emma’s bell, that my journey, as Florence refers to it, is far from over. Dr. Wylie informs me that my type of cancer is slow to react to the treatments and that it will be six months before he will be able to assess the damage sustained to The Alien which is persistent and intelligent. It is able to adapt and react to HT. It is a wily beast. (Sorry Doc, I couldn’t resist).

The engagement between The Alien and medical science is far from the end. It is neither won nor lost. Perhaps it is simplistic to think in terms of winning and losing. Perhaps it is best that I don’t think in these terms at all and just get on with my life, my music.


The review in question being from John France of MusicWeb International.

Mr. France begins his review of Entangled States by admitting that he “is baffled as how to approach this double-CD”. In this state of bafflement he continues.

That there are “48 separate, short piano pieces: all untitled save for their roman numerals” (those are, by the way, titles) presents him with “difficulties”. More difficulties are to be found “in the 10 pages of densely, but not necessarily opaquely written text” which he says “calls for profound study, not a quick glance”. Well, Mr, France yes, it’s not exactly this week’s issue of The Beano.

Mr. France has looked up what he said in his revue of the Three Sonatas and has regurgitated ad verbatim some of what he wrote then. He is still vexed that “he cannot get a handle on the composer”. Does he really need my shoe size to be able to write a review of the music?

He states that he was not able “to give it all my full concentration”, that he tried to read the liner notes but was “stumped by the density of the text”. It is at this point that we must ask if Mr. France is best employed as a critic.

Finally after pecking and quibbling at what is not the music he does get around, albeit very briefly, to actually mentioning it. “And finally, most important of all, what does this music sound like? It could be described as Kaikhosru Sorabji” (again a reiteration of his former review) “having cocktails with Bill Evans, Count Basie, Claude Debussy and Igor Stravinsky” but then readily admits that this is a “sweeping stylistic simplification”. That is all that he has to say about the 48 pieces of music. That seems to be the summation of his insight. Is it sufficient for any potential listener to “get a handle” on my music?

Then a completely unexpected, dramatic, volte-face. “It is typically comprehensible to the listener and nearly always pleasing to the ear… This is an impressive and often quite beautiful production”.

So, in summary, he doesn’t like anything about the CD other than the music.

Here is a link to the complete review:
http://www.musicweb-international.com/classrev/2018/Jul/Craven_entangled_MSV28571.htm


Some four years ago I made a small pencil mark on a blank sheet of manuscript. The relocation of stuff in my head to stuff on paper had at last begun. This project had been swirling about in my thoughts for quite some time and now my ideas had clarified, become defined to the point at which I knew I could take on the challenge of what I considered to be quite a daunting undertaking.

That moment was the first step on a long creative process which has involved the combined skills of a small group of supremely talented people – Mary Dullea, Alex Van Ingen, Scott McLaughlin, Peter Vodden and Stephen Sutton. For regular habitues of this blog these are familiar figures and need no introduction. Without them my ideas, my music, would not go beyond the confines of my studio. I am deeply indebted to each of them.

Entangled States extends my Non-Prescriptive methodology. For further explanation I refer you to Scott McLaughlin’s well-researched and detailed sleeve notes. These can be downloaded. The structure of E.S. is comprised of 48 pieces of short duration. 24 are written in my low-order format and 12 in middle-order/high-order formats each of these having 2 realisations. This to demonstrate the raison d’etre of Non-Prescriptive compositional and performance techniques – namely that each piece can be played (realised) in an infinite number of ways.

Divine Art has described Entangled States as an “astonishing masterpiece of contemporary complexity”. I hope that this epithet does not deter people from listening. It might be that many people are not attracted to the idea of introducing further complexity into their already complex lives.

Entangled States seeks to push against certain established compositional boundaries. An increasing body of opinion reckons that I am “taking music in a different direction”. If this is the case I must hope that I can take my audience with me to wherever my journey leads.

Now that the CD has been released I must await the comments and evaluations of the reviewers. Perhaps it should not be so, but as a composer I exist embalmed in permanent layers of doubt and uncertainty and, from choice, work in a self-imposed near- vacuum. Their generous comment and approval lends me some degree of assurance, a motivation to continue, so necessary on the many days I hit the compositional buffers.

To conclude this post I include a very recent brief review from Naxos which is the largest independent label in the world and one of the biggest-selling classical labels. It is also one of the largest global distributors of independent classical record labels such as Divine Art.

“Eric Craven is like no other composer – both because for most of his life, he has been a recluse from the musical establishment while living out his role as family man and teacher, and also because his compositional technique is his alone. Aleatory in general principle but more complex, his works contain elements of both high-order and low-order ‘non-prescriptive’ writing – in other works varying degrees of flexibility allowed to the performer. Totally abstract in form and concept, though inspired by a principle (here, the particle entanglement in Quantum Mechanics), the pieces, especially ‘low-order’ where the score is more prescribed, can take on the appearance of other forms such as baroque fugue, romantic prelude or even soft jazz. Moreover the music is hardly ever ‘challenging’ for the listener, with quasi-tonal, melodic flow. In many ways Craven is laying down a new direction for piano composition. Mary Dullea in her third album of Craven’s music demonstrates her amazing pianistic prowess but also her perceptivity and understanding of the scores which she realises in full showing wonderful expertise in interpretation. Dullea, as both solo artist and member of the Fidelio Trio, is becoming one of the ‘must-hear’ pianists in the contemporary music world.”


At the conclusion of my last post I perhaps foolishly promised to present you with good news about my condition. Foolish in the sense that I have very little control over the alien mutating cells that are impervious to the body’s natural defenses and are intent upon invading and ultimately assassinating the host.

If the self can be defined as an amorphous combination of thoughts, aims, imaginings, ego, memories, intention, then we can claim to have some degree of autonomy, of self regulation, of self determination over these. But to the cellular self, the host, we cannot make any such claim. Our cellular structure, without our knowledge, awareness or consent can act against itself and, in a subversive, anarchic and often disastrous manner proceed to carry out what it is so well equipped to do.

Yet The Alien has chosen a poor time to attempt its nefarious activities. As a consequence of the progress of medical science, the ongoing research, trials and testing, the boundaries of what is possible in terms of improving and extending the quality of life, together with the successful treatments, are rapidly extending. I count myself quite fortunate to have acquired my type of cancer at such an opportunistic time. Really.

I have now been on Prostap slow release HT for two months. Last week saw the first meaningful results of this treatment. And, at this point, I am so pleased to be able to present to you the promised good news. My PSA level has plummeted from 14.9 to 1.3 and my T-level to 0.2. In just eight weeks. Some powerful cocktail this Prostap. Perhaps my foolishness may be interpreted as optimism, belief, hope. One must always have hope. I have always kept in mind “To live without hope is to cease to live”. I forget the source.

This means that The Alien is now starved of testosterone, off which it feeds, flourishes, survives. Its progress will now be slowed and hopefully, at the same time, the enlarged prostate will be reduced in size which, in turn, will enable the RT to be more effective.

It is a powerful brew this potion. There can be side effects, different for each patient. I am quite breathless on exertion. I am slowly, reluctantly, accepting and putting into practice the good advice given to me by Nurses Florence and Beth, namely to recognise my new limitations. So, I have slowed my speed of walking to a sometimes barely perceptible forward motion so I do not become breathless. Stairs and inclines present a challenge. Four weeks ago I was ascending the steps at a tram station. Slowly. I had to pause halfway up and practice my now familiar fish- out- of- water- gasping act. Two elderly ladies came past me trailing their shopping trolleys, engaged in conversation. I was buried in an avalanche of conflicting emotions, so much so that I was unable to select any particular one upon which to fulminate. Florence, Beth, new limitations. This, the reality.

Again, the good news is that slowly my breathlessness is becoming less breathless. On the level I can sweep past any 4 year old, easy prey. They can’t focus. Soon I will be challenging the infirm and ancient. Well, progress has to be measured somehow.

And I am perpetually exhausted. I get up in the morning and I am running on empty. It is often difficult to achieve anything that involves thinking, reasoning or movement. Falling asleep in a chair, on a tram is effortless. Morpheus always has his hand near to my shoulder. Perhaps this is a causal effect of running on nil testosterone. Testosterone is given to athletes to improve performance. Zero testosterone …..? My composing is suffering collateral damage, it is a major casualty. I find it almost impossible to maintain concentration, focus for any length of time before Morpheus intervenes.

But it is working. It is doing what it says on the label. I am so fortunate to be a successful recipient of modern medical science when so many people are not. There is a long challenging path ahead. 34 months of HT and in August a month of RT. I can do this. I have my own resolve and so many people batting for me. And, once again, I wish to thank all of you who are concerned about my health. Not only the people who know me, perhaps through my music, but those from distant countries who are following my progress, or to use Florence’s term “journey”. I hope this post is some small reward for your support.

Lastly I cannot think of a pseudonym for my oncologist, Dr. James Wiley. Nurse Blond, The Cricketer, The Arbiter, Florence came so easily. But not so for Dr. Wiley. Any suggestions will be welcome via WordPress.


I am in a state of suspension, both physically and psychologically.
Two weeks ago the results of tests indicated that my testosterone level remains stubbornly high. This, given my cancer, is not good.For those of you who are not oncologists, a brief explanation.
Prostate cancer cells usually require testosterone to grow and flourish. Fortunately hormone therapy can stop the body from making testosterone. The effectiveness of the HT can be measured via the level of testosterone.So Dr. Wylie, he of The Christie,is concerned, has ordered more tests in three weeks. I am waiting, counting down the days, hoping for a better result.
At the moment, and it will be for only a short time,until my body learns to tolerate the HT, there are side effects.Before the course of HT commenced I was able to do 60-80 star jumps, press-ups, take stairs at a gallop and sprint along streets, after making sure I was not being observed,for the sheer delight of being able to do so. Things are now different.I am breathless on standing. I can walk, I can talk but not at the same time.I am slowly, reluctantly learning to acknowledge and accept my new physical limitations.
And I am tired, exhausted at breakfast time. I spend hours each day falling into a deep. dark, dreamless pit of unconsciousness. I am generating my own anesthetic.
I am desperately trying to maintain my composing. It’s what I do. It’s what I am but , at the moment, progress is minimal.I am finding it most difficult to maintain the necessary focus, intellectual activity for more than a very brief time.I have something to say and I cannot say it.
The next post will have good news. I promise.You deserve it after this protracted stream of miserable reports.


February 15th. Cirrus and contrails against a blue sky. A slight haze, a begrudging slightly higher temperature. Snowdrops, crocusses, the promise of daffodils. A day of composing lay invitingly ahead.I was about to leave to go to The Struggle when the telephone rang.The call was from my Medical Centre. I was to go immediately to the Urgent Care Unit at South Trafford Hospital. Immediately? Urgent Care?
Two days earlier I had had blood tests which, it appeared, had thrown up two items of concern.My kidney function needed to be re-assessed and, in addition, my PSA level had more than doubled in three months, from 7.1 to 14.9.I tried to contact Florence. She was unavailable. I did not believe that the spike in my PSA was linked to disease progression, not after all the recent tests, scans and biopsy, but I wanted to know what could be the cause of this sudden dramatic increase.The day had taken a most unwelcome turn.
I thought that I would be familiar with this hospital. Not anymore. Change had taken place.I was a stranger in need of direction and I was duly directed from the UCU to “bloods”.I am slowly becoming familiar with hospital code. Florence had phoned but I had missed her call.
The next day a GP from the Medical Centre phoned to inform me of the results of these latest tests.Grade 3 Chronic Kidney Disease was confirmed.
This weekend I am researching kidney disease with the assistance of Dr. Google.How it might develop, how it might affect me.I am not yet an expert, that might take a few weeks, but I am learning.My present understanding is that it is irreversible and usually progressive. I hope that further research may suggest that this is not always so.
Beware the Ides of February.


After reading my last post two women have responded by offering their spare bras. Thank you L, thank you S. My spirits are uplifted by this thoughtful gesture. My cup(s) are overfilled with your kindness. Your support(s)will be greatly appreciated. But please not lacy or floral, I still have a certain vestigial amount of pride.
On a lighter note. Yesterday I received the first of a three-year period of injections,Prostap SR DCS (11.25mgs)which acts to reduce the effects of testosterone and other androgens thus inhibiting the progression of the cancer. That’s what it says on the can, hope it works in practice.This, in addition to the albeit temporary 300mgs of cyprotene acetate which I take daily. Perhaps I might need those bras earlier than anticipated……
My sincere gratitude to all those who have said how much they are enjoying my recent posts (a bloke from Germany says “Hilarious”). I am resolved not to allow this blog, this record of my journey, (Florence’s term, remember?) to fall into some grim, miserable, cheerless, bleak cancerlogue.Do not misinterpret. Having cancer is not one of life’s delights but there is every day to be lived, an infinite number of things to be enjoyed and laughs to be laughed. Life is too incomprehensible,Delphic, to be taken seriously.