Archive for the ‘Uncategorized’ Category

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.

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The Ides of February.

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.

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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.

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A Way Forward

Monday 5th February. I make an appointment.
Tuesday 6th February. I attend the appointment.
Wednesday 7th February. Treatment commences.

The meeting with Mr.Ramani which precluded radical prostatectomy provoked much consideration about how to proceed.I decide that the six months it has taken to reach this point is unacceptable.It is time to take the initiative. I decide to go private and, as you can see from the above,the process is expedited. What might have taken weeks has taken just a few days.I feel that the time line is critical. I have a tumour that is GS8,somewhat aggressive. My one great advantage is that it is still contained within the boundaries of the prostate.That state must be maintained, if not it will spread to the pelvic lymph nodes, the seminal vesicles, perhaps even to the bones.My prognosis would become much more unfavourable.
I drive to The Christie through snow.It is bitingly cold.
The waiting room is modern, bright, fresh, There is no waiting, no queues.Free drinks, newspapers, foot massage, pedicures,fortune tellers….and I am seen punctually by Dr.James Wylie who is a consultant clinical oncologist specialising in hormone therapy and radiotherapy inter alia.
He knows all about me, is prepared. He knows the name of the doctor who treated me for malignant melanoma 25 years ago.
He outlines his treatment plan.It comprises of three years of Hormone Therapy(HT). After six months I will have a course of 20 sessions of Radiotherapy (RT).The initial six months of HT will 1)reduce the size of my enlarged prostate(I saw the image from the CT scan which showed it to be 2 to 3 times the size of a normal prostate. How on earth did I manage to cultivate that?) 2) shrink the size of the tumour 3)make the tumour more receptive for RT.
Dr. Wylie proved to be irresistibly positive and reassuring. He informed that this method of combining HT with RT would have a similar outcome,as much success as surgery but, importantly, without the risks.
Of course there will be side-effects. Nothing too long-term I hope. HT might see my feet disappearing from a plan view and I might have to decide which colour bra would suit best. RT might necessitate me wearing nappies for a short time. There are other possible consequences but I feel it is best not to go into too much detail here.But it is important for me to state that different people have different side effects. Many have minimal side effects. It’s dependent on many factors. But what a small price to pay for a fix.
The interview is filled with positivity and I leave The Christie feeling quite elated, optimistic, hugely fortunate, remembering others who are not.Today I return to the Christie Pharmacy to collect my meds. First tablets then injections.I find that Dr. Wylie has, with great consideration, returned me to the NHS system.
I am already modifying my diet. I am making the ultimate sacrifice for the cause. I am drinking green tea.
I contact Florence to update her. She is delighted with my news.

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Friday 2nd February. A cloudless vacant blue sky, a cold piercing northwesterly. I drive to Withington Hospital which proves to be a modern airy building, a primary care base. It is Lillipution compared to The Labyrinth. My letter of appointment gives directions which prove to be incorrect and yes, once again, I am having to ask the way.

I am here to meet with Mr. Vijay Ramani who is prominent in his field. He is a pioneer, an advocate for the advancement of robotic surgery at The Christie Hospital. He is a Lecturer of the European School of Urology. He has performed 800 – 900 robot-assisted laparoscopic prostatectomies.

There are many advantages of robotic-assisted surgery. These £2m machines have greater dexterity than the human hand, they have a high-quality 3D vision with 10X magnification affording a superior view of the operating field. The 5 or 6 incisions are only 1cm long which results in less chance of infection, quicker healing, less loss of blood and less scarring.

Significantly the survival rate of patients undergoing this state-of-the art procedure is greater than 70% even with patients presenting a GS of 8. There are, as with all operations, specific consequences but the combination of this man with his robot assistant presents an obvious pathway.

Mr. Ramani has a reassuring encouraging easy approach. He listens attentively as I explain the events that have led to this day. His secretary takes notes. He responds comprehensively to my numerous questions, asks for my jottings, pores over them intently, makes comments. But there is a problem. A huge significant problem. I have a pre-existing medical condition which causes Mr. Ramani great concern. Famial Hypercholesterolemia. My father and uncles all had vascular-related events. My father was subject to a DVT the day following a routine hernia operation. He never recovered. I, myself, have had TIA’s (small strokes) and have an accumulation of plaque in each carotid artery resulting in 50% occlusion.

This, says Mr. Ramani, defines me as a patient who would be at high risk both during and post-surgery. I could suffer thrombosis, stroke or possibly not survive. There is a probability that the quality of my life could be severely impaired. He seems not prepared to take this risk. It’s no good getting a fix if I am not able to benefit. Our conversation loses momentum and changes direction. I am to be referred to an oncologist who specialises in radiotherapy.

I sense that my best opportunity has slipped from me. I sit in the spacious,sunlit, quiet corridor feeling uncertain. How critical is this going to prove?
I phone Florence.

(The heading for this post is derived from the title of a 1966 film “Morgan – A Suitable Case for Treatment” which is based on a screenplay by David Mercer and features a memorable performance by David Warner).

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Tuesday 30th, 9.10am. Florence phones to inform me that the two scans indicate it has not got beyond the prostate. It has not metastasized.

This is unexpected good news. Because of the high Gleason score of 4 + 4 which indicates high risk and some level of aggression together with the 6 months it has taken to get to this point, I was anticipating that it could have progressed to the pelvic lymph nodes or beyond.

How fortunate am I when others are not.

And now to find a fix. Options are surgery, external beam radiography or brachytherapy. I need to seek advice and guidance.

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It is Wednesday 24th. Heavy, lowering nimbostratus cloud. Cold slanting rain. Manchester’s default winter weather, to be endured, not enjoyed.

I enter the labyrinth via a different entrance and studiously follow the route outlined for me on my letter of appointment. Take the first corridor on the left, the purple route to the Acute Block Radiology Department, ground floor, do not climb any stairs….. My hospital navigation skills have been noticed. They have thought it best to provide assistance. I am here for a C.T. scan on my pelvis and abdomen.

The department proudly advertises that it is the first in the U.K. to have a new Siemens System which has a magnetic field “50,000 stronger than the Earth’s magnetic field”. This imparts no real information as the Earth’s magnetic field varies wildly at different points on the surface and is up to 50 times stronger at the Earth’s core than it is on the surface. But this is not the time for pedantry.

I am 30 minutes ahead of schedule and surprisingly am processed immediately. The hospital gown. Has anyone ever managed to work out a method of successfully tying this item of apparel?Does the NHS have a mischievous sense of humour? I toy with the idea of tying the laces before donning it but instead opt for my usual solution of wandering through corridors clutching at the resultant gap with both hands and hoping that I am not offending people’s sensibilities as I pass them.

Within seconds I am installed amidst a huge state of the art diagnostic tool. It gives me instructions before going about its work silently, smoothly. I have an image of people with magnetic hip replacements suspended, dangling helplessly from the highest point of the “50,000 times stronger than the Earth’s magnetic field” magnet.

From canula in to canula out is thirty minutes. I successfully follow the exit signs to the exit but not in my blue- patterned hospital gown.

The following day. Thursday 25th. Another mizzly, grizzly, glowering, rain-sodden day. First a meeting with Florence. And yet again the labyrinth defeats me. I have to seek counselling and as I do so I notice an A4 size piece of paper cellotaped to the wall “Urology Assessment Unit Yonder”. Again I think they must know.

Nurse Blonde welcomes me, sits with me spends time with me. Is it my irresistible charismatic personality or her lingering memory of my Calvin Kleins that is the basis for her attentions?

I am knee to knee, tete a tete with the elegant Florence. We discuss time lines. It has taken 6 months to get to this point.We both feel that that is far too long. I tell of a bloke who presented an elevated PSA level and was seen by his local hospital Urology department two days later. She promises to cut through protocol, red tape and inform me of the results of the scans as soon as she can.

Yes, plural, for now I am off to the Nuclear Medicine Isotope department. I follow detailed written guidelines. Yes, they certainly know. An almost deserted, abandoned place. No reception. No waiting patients. Piped music. Two young staff. That’s all. Just two young people catering for the demands of the entire department. The thin white line of the present day NHS.

A canula is established, this time in the other arm, and I am injected with a radio active tracer “You are now radio active Eric” says the rather strikingly beautiful radiologist. Does that mean I have a half life? If so, which half? I have to know. I hang around for three hours or so to allow the tracer to locate the areas to be scanned. My bones. If it has got to my bones I think I have to start writing shorter pieces.

I am precisely installed by a young man from the Rhondda Valley, South Wales. Another impressive huge diagnostic machine begins its interrogation of the length of my frame. Just a few centimeters above my face at first. Its track down my body is almost imperceptible.

This sweep takes 25 minutes and I am recalling a long time ago when I had the honour of playing the organ for my college friend Howard in another South Wales valley, Maesteg. It was the occasion of his wedding to his sweetheart Avril. I will never forget the shock, my surprise of being assailed by the full- throated, harmonious singing of the miners who filled the chappel. I remember easing off on the swell box feeling almost redundant, unnecessary. Howard’s father was the manager of the local coal mine. They were just beginning to be closed down. They are now all gone. The man from the Rhondda told me that there is huge unemployment in the area. The youth with low expectations, very little opportunity. He told me that he is one of the few fortunate ones who have managed to get away and find a job. How profoundly sad. Young people with little hope, aspirations extinguished prematurely.

The Welshman readjusts the machine so that it now interrogates me from different angles. Two further silent fluid sweeps lasting 7 minutes. I am released from my bed. Canula in to canula out four and a half hours. I am to avoid close contact with young children or pregnant women for (only) 24 hours.

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