It all started with a visit to a barber-shop. I asked the barber if he knew what the persistent ‘scab’ was on my scalp and he suggested a visit to the doctor. Surprisingly, I went. The doc said it was a wart of some kind and proceeded to freeze it with a directional spray gismo. ‘It’ll drop off in a day or so.’ It took a week.
In the meantime he saw that my annual ‘bloods’ were well-overdue and he gave me a chit to arrange a blood test. I have annual liver-function tests following the prescription of statins some years previously. The receptionist at the surgery said that there was a month’s wait for these tests which meant, by their own in-house rules, that I couldn’t be booked in so I determined to go to the local hospital for the tests. Surprisingly, I went.
The blood test requires ‘fasting lipids’ and a few days later I hungrily joined the packed waiting room at Watford General Hospital, took my ticket from the queuing machine and sat down to tackle the ‘Mind Games’ pages of Times 2 – su doku, killer su doku, kakuro, codeword, Times 2 crossword, etc. – and only two hours later I was conducted into a screened cubby-hole where a stout female technician in a dog-eared off-white overall proceeded to try and abstract the required number of phials. As usual she had difficulty – they always have difficulty in running down a compliant vein, go figure – but eventually at around 11am on this Friday morning the test was completed: the four phials full and labelled and I could belatedly go for my morning coffee. Only coffee addicts will understand the importance of this freedom.
At 9am the following Monday my GP (General Practitioner – family medic) rang me at home. I was immediately alerted to bad news: doctors never ring patients, do they? And certainly not at 9am on a Monday morning! And the speed: I had only given the blood seventy hours earlier and the weekend had intervened! When did they do the tests? ‘I want to see you’ was all he said and it was arranged that I would pop-in on Thursday morning. I turned up at the due time and was almost immediately shown in to see the doc. Again, the speed! Almost unheard of, I always have to wait an apparently obligatory ten to twenty minutes or so but not this day.
‘Your PSA is a bit high’ he told me. I knew not what PSA meant and he informed me it was an indicator of problems with the prostate. As a sixty-something male I was not in the least bit surprised to hear this, I thought pretty much all men of my age have prostate problems (I was wrong, it turns out to be about 1 in 6 men). My GP is a man of few words but he said enough for me to ask ‘So, what you’re saying is I have prostate cancer?’ ‘Oh, yes.’ came his casual bombshell of an answer.
PSA stands for Prostate-Specific Antigen and it is a less than accurate test but a good indicator of possible problems. Healthy prostates have negligible PSA-count – less than 1 – my tests had shown a reading of 33. So it was finger up the bum time. Afterwards, stripping the medical gloves from his hands, my GP said the prostate seemed ok, but was a bit ‘gravelly’ as if I might actually appreciate what this assessment meant. He decided to send me for a biopsy. This was arranged for two weeks hence at the urology department of St Albans City Hospital.
At this point I should point out for non-UK residents that all of this comes under the auspices of the NHS – National Health Service – which has become something of a political football over recent years, with multiple reorganisations in attempts to find ever-greater but illusive efficiencies. The invention of the immediate post-war Labour Government, the NHS is THE sacred-cow of UK politics, with the socialists claiming ‘ownership’ and continually employing scare-tactics to suggest that it is not ‘safe’ under any other political administration. But so far so good; the economics of the NHS are fraught with difficulties and changes are bound to happen in the future. The important point to bear in mind here, though, is that the NHS is free at the point of delivery.
It was a very warm spring day that I parked up in the St Albans City Hospital car park and was handed a part used ticket by a kindly departing driver. I was not kept waiting for long and was shown into the doctor’s consulting room where, without further ado, he took two biopsies and having made a follow-up appointment for two weeks hence I was to able depart and allowed to drive home. Strangely, he asked me why my GP had had the PSA count done; I didn’t know, but was tempted to say ‘Duh?’
Now there is an unexpected oddity here and I can only guess at the reason, but at no time during those few weeks or since did I experience any worry or concern. Maybe I have an overriding faith in medical science? Maybe it is because of my ignorance of the byways of prostate cancer? Or the fact that I feel well and have never felt ill? Possibly it can be laid at the door of 30 years of on/off practice of mantra meditation or the association with a school of non-duality (Advaita) but whatever the cause is I remain free of worry or concern about the illness. This could of course all change if the disease becomes terminal, but I have had a decent life and have tried to live honestly and as I have no belief in a life hereafter maybe I am just inured to the idea of departing this existence.
Another warm and sunny spring day welcomed the follow-up consultation in St Albans and the urologist informed me that one of the biopsies had proven ‘clean’ but the other showed the presence of cancerous cells. So it was definite: the Big C was confirmed! The next step was to attend at Watford General Hospital for two scans: one required attendance at the ‘nuclear’ department where I was to be given an isotope laden injection to check out the lymph nodes and the other was to be a bone scan. Apparently, if metastasization has taken place the first call of roaming prostate cancer cells is to the lymph nodes or the bone marrow.
A week later I turned up at the hospital early expecting the usual queues but the Nuclear Department was deserted except for a sign inviting a knock on a closed door, like Alice in Wonderland. A possibly Filipina lady answered my knock; she ushered me inside, gave me the injection and arranged for me to return in four hours for the scan. In the meantime she phoned the bone scan people and amazingly they had an opening for me there and then so I was wheeled round the corner (not literally – I walked) into a smart suite of rooms where I changed into a hospital paper gown and was half-nakedly perched on a chair in the corridor. After a short wait I was shown into a large room with impressive space-filling apparatus; the bone scan was done quickly and I was let go. I had a few hours to fill which I spent with the Times and two languid cappuccino coffees in the hospital’s smart airy restaurant.
The nuclear department was just as deserted upon my return at 2pm as it had been first thing and the middle-aged lady technician dealt with the lymph-node scan without further ado and that was it. My next appointment was in two weeks’ time with the oncologist at his clinic at Hemel Hempstead General Hospital (if nothing else I was getting a pretty comprehensive overview of the local Hertfordshire hospital scene).
Mrs C decided she was going to tag along to this first consultation with the oncologist. The time had come to get real. Once again the consultation suite was well-staffed, clean, bright and airy and once again it was almost deserted when we wheeled in (this time literally – Mrs C uses a wheelchair). So we didn’t have to wait long before I was called in. (Call me stupid, but it never dawned on me to take Maureen into the consulting room – she was really quite miffed when I eventually emerged, but we were then joined by my assigned Macmillan nurse who explained everything to my wife so she was mollified to a degree and I needed to hear everything again anyway – so much to ‘take in’). Macmillan nurses are part of a nation-wide charitable cancer care operation.
The clinic was a joint operation by the urologist and the oncologist and the two doctors were joined by ‘my’ MacMillan nurse. They were refreshingly direct: the two recent scan results seemed ok, but the bone scan showed a ‘hot-spot’ on my upper right arm which they wanted an x-ray of to rule out cancer of the bone, and this was fitted-in before we left the hospital. They ruled out surgery (C too advanced) and chemotherapy (no metastasization) and recommended a three-year course of hormone replacement therapy combined with 37 daily radiotherapy sessions planned to take place three months after the commencement of the hormone therapy – which was to begin within a week. It all seemed straightforward and nothing ‘to get hung about’.
The oncologist was running a research study for which I was, apparently, ideally suited and an appointment for the following week was arranged at the Madame Curie Research Wing at Mount Vernon Hospital in Northwood. In addition to the hormone replacement and radiotherapy the study involved the taking of vitamin B3 and the use of ‘carbogen’, an oxygen rich breathing mixture, during radiography treatment and the four MRI sessions that the research required. The additional x-rays taken at Hemel Hempstead Hospital had proven to be ‘wear and tear’ and nothing to do with the cancer, so the stage was set.
I was sent that day to have a CT scan (Computer tomography) to accurately locate the cancer and thereafter I called in at the hospital’s pharmacy to collect the first two weeks’ hormone replacement tablets. After two weeks I was to visit my GP to have the first of the twelve three-monthly subcutaneous hormone replacement injections. After three months of this treatment the 37 radiotherapy sessions could begin on 13th August 2013.
I was told that certain effects from the radiotherapy were to be expected: these would include the ease and ability of passing urine and solids and a growing exhaustion or fatigue. In the meantime life could go on and we arranged a short holiday with family and friends in Dorset and Devon with a return home planned to coincide with the MRI scan and first radiotherapy session on the 13th.
The MRI scans proved to be marathons. All scans took 90 minutes each, the middle 30 of which were accompanied by the breathing of the oxygen-rich carbogen mixture and the whole 90 minutes proved to be a symphony of mechanical sounds covering the audible spectrum, protection from which was provided by headphones through which music of choice – Mozart for the first MRI – was relayed.
Upon leaving the MRI suite I had to take 12 vitamin B3 tablets prior to the first radiography session an hour later. I’ve never had any trouble taking pills or tablets so I casually washed them down with water and went for lunch. At 3pm I turned up at radiography suite #9 (of 12) which was to be ‘my’ suite for the 37 consecutive sessions. There were to be five sessions per week with the weekend and bank-holiday off; those weekends were to become oases of recuperation and much needed rest for mind and body. I hadn’t realised it but the radiography treatment turned out to be a trial of major proportions which tested my equanimity to the utmost, not least because in addition to the vitamin B3 a full bladder is necessary and each session was preceded by the imbibing of 6 tumblers of water (later Ribena, a now much-hated blackcurrant cordial drink). After a few sessions I cannot describe what an effort there is in drinking that much water on cue and in double-quick time.
And so the summer proceeded. Every weekday at 1pm I would bathe and at 1.30pm I took my 12 vitamin B3 tablets and filled a Ribena bottle with its diluted sugar and blackcurrant essence. At 2pm I would jump into my car for the 20 minute drive to Northwood and Hertfordshire’s premier cancer treatment hospital. I would log-in my arrival on the computer terminal and by 2.30 I would be sitting in the waiting room to radiography suite #9 where my favourite technician Louise would appear and each day enquire as to when the vitamin tablets were taken and she would instruct me to commence drinking my litre or so of water/Ribena at an appropriate time.
The density of radiography customers changed almost daily; some days I seemed to be about the only one present yet on other days it was difficult to find a seat as the waiting room was full of people awaiting treatment with their friends and family. Mainly though, my fellow sufferers were men of a certain age – mostly older – and some of us became quite pally.
It takes all sorts of course; there were people from all walks of life and social standing – even one inveterate smoker who regularly nipped out for a fag – and these variables were accompanied by a range of attitude regarding the fairness of the incidence of cancer and the approach to the possibility of death. Most seemed resigned to their fate one way or another, but few did so with good grace.
There were some sad cases (of women particularly) who seemed close to the end and of the walking wounded who came into the waiting room wheeling their post-chemotherapy saline drip stands insistently bleeping. One case stands out, a mother of two in her mid-thirties being treated for cancer of the cervix that had metastasized; she had had a hysterectomy, was receiving regular chemotherapy and was also on a long round of radiotherapy. Fortunately she was always accompanied by two or three girl-friends who seemed to keep her spirits raised; inwardly, I wished her well with all my heart, outwardly we spoke about her family.
After every twelfth radiotherapy session I had an MRI scan, each of which lasted 90 minutes, just like the first: apparently they needed to duplicate the scans. I got to know the MRI technicians quite well and earned a reputation of being a cool customer. There was nothing that I could complain about: with a single exception, everybody I met or had dealings with at Mount Vernon Hospital was kind, considerate and clearly knew their shit. The hospital itself is a bit run-down in places particularly externally where most window frames badly need repainting, but it makes up for dowdiness with architectural inventiveness. There is one building on the campus which is one of the most interesting Art Nouveau inspired buildings that I have ever seen in the UK. All in all it is a shining example of the best the NHS has to offer. The restaurant is particularly good.
One of the research team, the lovely Juliette, sought me out most weeks to enquire as to progress and the day, day 15, I puked up the 12 vitamin B3 tablets brought the top man running and the dose was lowered and I was given anti-emetic pills to assist in the taking of the B3 for the remainder of the treatment. Equally, when I spoke about the increasing difficulty and painfulness of night urination I was immediately prescribed another capsule to help relax the pressure from the prostate on the urethra. All prescriptions were dispensed promptly at the hospital’s own pharmacy so there was no inconvenience to the patient at all. It was all very efficient and caring.
Even the car parking is good. Rare among hospitals I have visited there is an ample provision, always spaces at any time of day. And the cost is reasonable: outpatients can buy tokens for £1 a piece that will provide a full 24 hours’ parking. Would that all hospitals were as enlightened (Watford general is an expensive nightmare). So everything I encountered at Mount Vernon was carefully designed to ease and mitigate the stress and strain of carrying cancer.
Each time I visited the radiography suite I calculated the percentage completed and after three days I was 10% done. Reaching 25% seemed good but 50% was even better. And then there were newbies with whom I could commiserate and perhaps shed a little enlightenment. At 75% I again had trouble with those pesky vitamin B3 tablets – it was if my body just rejected them. I tried to deceive the body by using a pestle and mortar to crush the tablets and mix with sugar – failure. Even blending the mixture didn’t help so I had to grin and bear it. Titanic phlegmatism needed.
And then it was all over: 100% and an occasion to buy Louise and the radiography team gifts of appreciation and to commence recuperation. Juliette made an appointment for feed-back in two weeks hence and that was it. I had been warned at the outset of a feeling of fatigue and I expected a sort of languid limpness but it wasn’t like that: I would be trolling along quite happily when suddenly I would be overtaken by immense tiredness at almost any time of day (but particularly in the afternoons) and the only response was to crash out. It was like being pole-axed and I would sleep soundly for anything between four and eight hours.
Visiting the toilet was an anarchic affair through the radiography and now the time was right for some regulation. Slowly things have got better in that department but one of the problems with the hormone replacement therapy is that the old John Thomas, which was never big – adequate and fully operational but not big – seems to have shrunk. Mentally, I have to admit that my appreciation of the opposite gender is becoming ever more aesthetic in this post-treatment phase and there remains a further 30 months of HRT.
I had a second feed-back session with Juliette two weeks after the first and she rang me two days ago for the third having previously decided that we could complete her forms over the ‘phone. The questions are mainly related to urination and defecation. I asked about prognostication at our first post radiotherapy session but it turns out that a six month period of stabilization is necessary for the body not to provide ‘false positives’ and so as matters currently stand I have absolutely no idea if the cancer has been effectively neutralised by the treatments.
As well as recording my experiences with this disease whilst I remember my real intention in writing this post is to praise the UK’s National Health Service. The whole experience shows the NHS at its best and whilst the personal experience was not easy none of that can be laid at the door of the organisation or effectiveness of the NHS. It is said that there is a post-code lottery with health treatment in the UK and if that is true I obviously live in one of the lucky ones. Good old Hertfordshire.
And if you have been, thanks for reading.
Stephen Coulson @philositect on Twitter