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Archive for September, 2018

Medical Science vs The Alien


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.

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