External Beam Radiation Therapy

More than 15 years ago I consulted a wise old man, a homeopath,  He used iridology and said that my only problem was in my lower organs (i.e. my prostate). How right he was! He gave me homeopathic and herbal treatments but I didn't persevere with it. If I had taken more notice of him I would not have needed the hormone or radiation treatment I describe below.
I had a lot of complaints about the hormone treatment (Zoladek), but after the radiation treatments it was not so easy to say what treatment caused what side effects. I'd lost my comparison points.
In 2007 I consulted a naturopath operating out of the local chemist shop. He again used iridology, but he didn't seem as accurate as that original homeopath.

Thursday, 22 February 2007: They seemed very nice: Con had done the imaging back in December; Shona had helped him (she disappeared again until near the end of treatment); Daniel was supportive, but didn't follow through; Belinda, I could have fallen in love with her once, very sweet; and Karen, a Chinese Australian, whom I would come to know as bubbly and fun. The problem was that they kept changing.
I was given an appointments card on that first day with my first week of daily appointments filled in. The plan was that I should go to the Appointments Clerk each day and hand in my card. She would note my appointment a week ahead, plus make any other changes. This clerk introduced me to a nurse who ran through the process of what was to happen. She gave me a tube of Sorbolene cream saying that the radiation would eventually burn my skin, like sunburn. She also warned me that eventually I wouldn't be able to use the bus, but didn't say why. Incontinence? What?
I was then taken to the Waiting Room in suite 2, which is on the third floor, which is really the ground floor. The nurse told the radiology staff that I had arrived, and I waited. More measurements were made and I was told to come back for treatment the next day.
I had a lot of waiting over the six weeks of treatment. I read a lot of books in that waiting room: part-read Vogler's The Writer's Journey; read David Lodge's Nice Work, read William Chapman's second book What lies did I say?, and started reading Chapman's Small World.
3pm appointment Friday, 23 February 2007: Radiology staff relaxed before the weekend, ready to go home, hoping to get an "early minute", excited questions "What've you got on?"
Abba played loudly in the treatment room. I joked that this was not the best music to stay still by. I was scared to move for fear they would radiate the wrong spot. They did ask my preferred music.
When I arrived I was instructed to undo my trousers and push my underpants down, then climb on to this bed (or platform) in the centre of the room. But I could leave my boots on. On the table I had to push my trousers and underpants further down and pull my shirt up (best to have it already partly unbuttoned). Rest hands on my chest. They then do their measurements, marked me all over, and turned on the machine which lit up the areas to be targeted.
A light and burring noise told me when the radiation was working. The machine slowly moved round me to do the fours spots, beaming down each time. The side opposite the radiating beam had a big flat x-ray. This was later removed.
Mobiles don't work in the room (lead sealed?). Staff leave the room before the radiation begins. Often different people come back to clean up and bring in the next person.
The buses were great for going into the hospital - enough time for me to go for fruit and vegetables to juice - part of my fight back. Despite my original good intentions I only walked home a couple of times. Mostly caught the bus as fatigue set in - more waiting time, more reading.
Tuesday, 27 February 2007: Feeling a bit uncomfortable after the 9am radiation.
Wednesday, 28 February 2007: 4.10pm radiation and then back to the waiting room to wait for Prof Y or his proxy. This time it was Dr Jo, another Asian registrar, who was sure he'd met me before. I assured him I hadn't and I missed Wan.
I complained about the urgency and frequency of my need to go to the toilet and my tiredness. I also asked if I needed to delay my next hormone injection given the resulting small size of my prostate and the problem this might cause for my brachytherapy. He didn't think I needed to delay the injection but said that he'd find out.
Friday, 2 March 2007: 10.20 radiation. More questioning about my weekend. I decided to talk about my anxiety-ridden adventures with Saturday dog training classes for my wife's out of control German Shepherd. That provided an endless supply of stories.
Wednesday, 7 March 2007: 3.20pm radiation and then back to the waiting room for appointment with Prof Y. I actually saw Prof Y who said that there was no point in delaying the hormone injections because the shrinking of the prostate occurs in the first few months of medication. He did a rectal check and said the prostate was flatter on one side. He joked that I would not tolerate him doing that in a couple more weeks of radiation.
That night I felt like I'd been through a wringer.
Friday, 9 March 2007: 2.40pm radiation. Plenty of time time to meet with Karen and Travel Agent in the morning to finalise arrangements for our Pacific cruise.
Monday, 12 March 2007: A public holiday. Good to have a nice long break of three days from the radiation.
Tuesday, 13 march 2007: 8.20am radiation appointment. Missed the 7.43am local bus. Walked down to the main road but none of the buses there stopped. They were all full. I walked into the city at a frantic pace but I did not arrive until 9am. Traffic was heavy because of crowds and blocked streets for the Clipsal car race. I worried. I could not afford to stuff this up. I tried to phone ahead but no one answered in radiology. When I finally got there I was told it was okay.
Wednesday, 14 march 2007: 2.40pm radiation. I again saw Dr Jo. He gave me tablets to stop the gastric but advised against them because they made it painful to poo. The nurse had previously given me a useful sheet on foods to avoid - no more breakfast cereal for awhile.
But I've not made it to the toilet a couple of times at home. I just had to cough and something comes out. My bowels had become an area of preoccupation. I now had to plan ahead regarding toilet locations if I was going out.
Monday, 19 March 2007: Gastric now really bad. Daniel asked if I'd seen the nutritionist, but I replied that he hadn't arranged the appointment as he said he would.
Tuesday, 20 March 2007: 11.30am radiation. Radiology staff all changing again. Problem finally fixed with the machine. Very simple technical issue, but meant there were no longer the delays up til now. Sometimes I'm now seen early.
Wednesday, 21 March 2007: 2.40pm radiation. Also saw prof Y. I explained I only took my first anti-gastric tablet today. I didn't want an accident while on the table with a lot of young women attendants. I told Prof Y I trusted him and felt that I was in good hands. This pleased him.
That night I felt relieved. This was a new feeling. I thought I had turned a corner and the cancer was being beaten, broken.
Monday, 26 march 2007: 11.40 radiation. I was getting sore down there. Prof Y said that the radiation irritated the organs and bowel lining. He said that the white stuff that I was shitting was mucous.
Wednesday, 28 March 2007: 2.00pm radiation. My last visit with Prof Y before the brachytherapy. Even he was confused when the radiology would finish because of the public holiday. A good thing the appointment system appeared to work. He said that I might see my private urologist Dr W at the hospital - three months about with him (or his proxy). I love Prof Y and said that I didn't want to lose him. (Actually I said that I didn't mind whom I went to for treatment.)
Friday, 30 March 2007: 2:00pm radiation. Made appointment with GP for my next Zoladek injection - no way out of that.
Monday, 2 April 2007: A big day. Pre-op preparation at 8.30am, and then radiology at 12pm.
Had to wait as usual - various stages to go through. See the clerk - sit down - see the nurse - basic checks - see the anaesthetist (he didn't know if it was to be a general or spinal?), says he probably wont be my anaesthetist on the day. The anaesthetist talked about the robot that would be delivering my treatment - now used for a lot of cancers (e.g., throat and lung) - where ever can be got to easily.
Given information on preparing for admission - 2 enemas the night before, 2 enemas in the morning. Ring the day before to find out when to go in. Saw a registrar who did a general check then up to another level of the hospital for an EEG - all good. Didn't take long. Said that I was very healthy. Hah!
Tuesday, 3 April 2007: 12pm radiation. Final. Got a little badge from the Anti-Cancer Foundation. Thanked everyone, Fed up with it but there'll be parts I'll miss. 

Respect!?! The process of getting treatment gets even slower.

An amazing thing about the human condition is how quickly we adapt to altered circumstances. I had always viewed with horror the idea of someone putting their finger or anything else up my bum hole. And yet I quickly adapted to regarding it as no big thing. This was probably a result of the kindness, respectful manner and professionalism of most of the medical people I encountered, and it was a shock when I met someone who lacked these qualities.
A bigger problem was the waiting for something to happen. In November 2006, I started physiotherapy to strengthen (straighten) my back and address chronic back and shoulder pains. I wanted to do something where I'd feel physically better rather than just fighting some unfelt disease.
The hormone treatment (Zoladex) appeared to get worse with its side effects after the second injection, especially the feelings of lethargy and despondency (both of which are recognized side effects). Added to these effects were the increasingly reduced expectations about my future. I was also troubled by other people's reactions, some even offering me their condolences.
I was at first affected by the suffering I saw at hospital. A distinguished old man was with me when I went for my CT scan but he broke into sobbing so badly that a nurse had to be brought in to counsel him. He seemed a man who felt he was facing his end but couldn't bear it. I learnt in time to ignore other people's suffering.
Friday, 1 December 2006: IMVS Pathology Clinic attached to the RAH. I had the longest wait ever for a blood test. A number of nurses lounged behind the counter discussing their social lives. Eventually the social gathering broke up when a couple of women decided to go home or whatever else they did at the end of their working day. The youngest of the nurses, a tall, attractive, blonde woman, reluctantly and mechanically took my blood. She was disinterested and disrespectful, calling me "William" after reading my name on the referral form, and never introduced herself.  
2:30pm Wednesday, 6 December 2006: Appointment with Prof Y, taken by one of his registrars. I had a lot of hope for this interview after having no contact with the hospital for three months. I had showered just beforehand in case Prof Y wanted to conduct another internal examination.
The registrar seemed young, again a blonde, attractive woman. I hoped she wasn't as disinterested as the pathology nurse. The interview was short. She knew little about me, said she could not find a computer booking for me to have brachytherapy, although the plan was recorded in Prof Y's notes. She latched onto my suggestion that I might have external beam radiation first, a probability earlier voiced by Prof Y. She finally booked me in for a CT scan the following Thursday while promising to find out what was going on.
11:30am Thursday, 14 December 2006: Unusually for the RAH, I had only a short wait for the process of the CT scan to commence. Told there would be a small tattoo to mark the measurement for the scan to later assist in targeting the external beam radiation.
I was visited by the registrar from the previous week. I asked if there was any news on my next treatment. She said she had to go to radiology and that she would let me know. Later she still didn't know anything and said she'd phone me. (I never received a call.)
Thursday, 21 December 2006: Phoned Urology (RAH) to ask what was happening with my obtaining treatment. My friend Darren had called to see me on Wednesday for support and prayer, and he urged me to phone the hospital. I was finally able to speak to a nurse who sad she'd get someone to phone me.
Phoned my GP's surgery to arrange an appointment (5 January) so that I could have another injection of the hormone treatment. This had been my only treatment three months before.
Friday, 22 December 2006: Travelling on the bus to the city, I received a phone call from a woman who said she was the Brachytherapy nurse Kim. She was hard to understand because of the bus noises. She explained that they only did one of the HDR Brachytherapy treatments a month and it was already booked up for January. She said she thought I would have external beam radiotherapy first and then usually there was a 2 to 3 week recovery period before Brachytherapy. She said the bookings clerk would phone me to commence external beam radiotherapy and Dr Y would see me each week, and that I should now enjoy Christmas.
15 January 2007: Still no word on treatment and the stress had built up. When I saw Dr W back in September he had given me his card with an email address so I messaged him about what was happening.
18 January 2007: P/c to RAH Radiology. (Yesterday afternoon had been the blackest that I had experienced. So much so that I couldn't write down how I felt. The earlier reassurance about imminent treatment had helped me relax over Christmas, but as time dragged on I lost my faith in it happening.) A woman answered simply as "radiolgy". She said Prof Y had been on holidays in December and she didn't know anything about a Dr W, that he might be on leave and she didn't know when he'd be back. She said that there were no new appointments for me on the hospital's computer system. Then she offered to put me through to the Booking office, that appointments might not have yet passed through the system.
The person who answered said she'd find out about my situation and phone me back. Debby phoned back a few minutes later and said that I would begin external beam radiation in late January / early February, and that I'd receive a phone call a week before.
29 January 2007: P/c from Prof Y who said that he was responding because of my email to Dr W. Dr W had returned to Malaysia.
Prof Y defended my treatment program, stating that it was frequent practice to give patients five months on hormone treatment before commencing radiotherapy. He also watered down my expectations saying that he wanted to do further tests to see if I was still appropriate for HDR Brachytherapy. If not suitable for HDR, I would do more external beam radiotherapy. He said he'd arrange the appointments.
Over the next couple of days, the phone calls giving appointments came in. All emphasized that they wouldn't be sending out appointment cards. 
1 February 2007: P/c stating that I would be starting external beam radiotherapy on Monday, 26 February.  Another appointment with Prof Y scheduled for 4pm 7 February (Elizabeth said she'd attend this appointment with me). Told I'd also be shown where to go for external beam radiation.
P/c from Amanda stating that I had an appointment with a private Urologist Dr S at his surgery. She was pleasant and joked about Valentine's Day.
P/c changing time for external beam radiotherapy to 11am Thursday, 22 February.
Wednesday, 7 February 2007: Elizabeth met me at the Botanic Gardens (adjacent to the RAH's Radiology Department) for the 4pm appointment with Prof Y. Unfortunately there are no windows in the radiology building overlooking the Gardens. They all face back into the hospital.
As usual we had a long wait. An odd situation where there is no reception to confirm appointments. A sign states to ask if you are waiting more than 15 minutes. A nurse came out around 4:15pm to say she knew that we were there. Many people sat waiting: older couples, younger couples, women without hair. Some people occupied themselves with magazines, TV, a games table, a computer with games, and jigsaws - reinforcing the expectation that you could wait some time.
Prof Y did no more assessments and again appeared to want to water down expectations for HDR. He said there'd be a problem if the prostate was too small, if there was cancer or other problems in the bladder and so on. This would be identified with a cystography and truss. He previously had said that I'd have another urine flow test but he said he'd no longer pursue that.
12 February 2007: P/c from Amanda with more appointments. I had a pre-op assessment on Monday, 2 April - said I'd need three hours. I had an appointment for HDR Brachytherapy on 17 & 18 April, and that I should phone the hospital beforehand. The brachytherapy would be done by Dr S who worked with Prof Y.
I had a lot of questions but Amanda said that all the information I needed would be posted out to me. (Amanda seemed nice.)
14 February 2007: The appointment with Dr S at his North Adelaide clinic troubled me. My father had complained of this as this as the worst thing that he had experienced. I remember him saying "imagine something being shoved down your penis". I also worried about having an empty bladder. I asked to go to the toilet to squeeze any more out. Then the Receptionist (not sure if she was also a nurse) asked if I had a full bladder? Why? She was at first evasive but then pointed to the toilet where there was machinery to do a urine flow test. She encouraged me by saying the test would be free, but I said that I didn't have a full bladder. I was confused because Prof Y had said that it was not needed. Dr S asked the Receptionist about it but she told him that I didn't have a full bladder.
The Receptionist led me to a room and told me to take off my trousers and underpants. She seemed young, but bulky, and not interested in conversation. I wasn't sure if I'd heard right. I asked if I should wear a gown. She said that it wasn't necessary but pointed out a gown on the chair if I really needed it. I expressed my concern about the procedure and she said I'd have a little stinging for a day or two.
I lay on the couch. My penis looked very small. I was very tense. The Receptionist left. I talked to Dr S about my fear of pain and the story of my father. He said that he was surprised that my father didn't have a general anaesthetic.
Dr S told me to relax. I did but then I had the urge to pee. He said to let it go, that he needed me to relax. He invited me to look at the picture of my bladder on the screen.
I looked in wonder at the journey up the urethra passage until the black tube projected into a large compartment (the bladder) of white walls marked with thin red veins. He said, "There's the prostate. Look's small".
I wondered if I was peeing. I felt wet and there was water (or pee) on the floor so I must have.
Despite my fears, there was only a bit of stinging, especially at the beginning, But it got better as I relaxed.
He then put another probe up my back passage.
Dr S said that there was nothing wrong with the bladder, no surprises, but that my prostate was small, only 14 centimetres. He said that he wanted 15 centimetres but that he'd still go ahead because I'd been through so much already. He said previously someone had to go off hormone treatment for a year to get his prostate back to a suitable size before he could do brachytherapy.
Dr S said he'd relay the results to Prof Y and confirmed that he'd be doing the Brachytherapy.
No money to pay.
It still stung when I pee'd the next day.
15 February 2007: Although the pain of peeing was excruciating, my biggest concern is tiredness. I do the morning chores alright but then I have trouble moving. I do the relaxation tape and fall asleep til the mid-afternoon, and I've done nothing that I wanted, like my writing.
19 February 2007: My lack of energy because of the hormone treatment is scary. Today I made it through until 11:30am and then came the overwhelming tiredness. I gave in and listened to the relaxation tape which put me to sleep. I made it back to the computer at 12:40pm and will see how long I last this time.

The slow process of getting treatment

I was not prepared for what happened after my diagnosis of prostate cancer. I took time to realize the reality of having an aggressive cancer. Then there was the frustration of repeated tests, endless interviews, and lack of treatment. The way I dealt with my frustration around September 2006 was to get angry. My belief that the establishment is self-serving really came to the fore with respect to the medical industry. (I realize that this distrust of authority is a theme in a lot of my writing.) Fortunately I was also doing some major work at home at the time, mainly around building a new fence, which involved a lot of physical labour and frustration with contractors with whom I could legitimately get angry without dire consequences.  Monday, 11 September: Unscheduled appointment with Dr Y arranged by Dr Wan, who phoned me to tell me to come in. Dr Wan had instructed me that Dr Y's correct title is Assistant Professor.
Prof Y made clear that there was still doubt about my being accepted into the brachytherapy program, usually reserved for men with a Gleason score of 7 to 8. My Gleason score was 9, the highest obtainable. Nice to think I finally excelled in something.
Prof Y corrected me on my pronunciation of Dr Wan's name, and told me he had tried and failed to get my MRI appointment brought forward. I also tried and could only get it brought forward a day, but just before my original (now next) appointment with Prof Y on the 20th.
I'm not sure why Prof Y wanted to see me early. Maybe he needed to decide if there was a point in proceeding with the brachytherapy or he needed a subject for one of his students. He gave me the most thorough internal examination of my prostate I'd had so far, feeling it from every angle. He had an attractive young blonde student doctor with him and invited her to have a feel. At least she said for me to tell her if she hurt. She made a rhythmic tapping on the cheek of my bum while she prodded around inside - I could not understand why, and it didn't seem appropriate to ask. I can't deny there was a certain amount of pleasure with her examination, perhaps especially after the rougher handling of Prof Y. Later we made forced conversation while Prof Y made phone calls and whatever in the adjoining room.
I was supposed to see Prof Y at 12:20pm, but saw him an hour later. I was dismissed at 3pm. A nurse commented that he was very thorough but not very good at keeping time.
I was handed over to another nurse for a blood test  for the infamous PSA, though the nurse had to finish her afternoon tea, and there was some talk about it being too late in the day. I found out from my GP that the result of this PSA test was 26 compared with my original test at 16.9 in June. My GP suggested that it could have been abnormally high because it followed Prof Y's aggressive examination.
I walked home and next day loaded a skip with cement and other rubbish and worried about the erection of my new fence ever happening.
9am Monday, 18 September 2006: Appointment for the volume estimation test - volume of the prostate. Around 10am the doctor arrived but they had the wrong machine - ultrasound. Another delay was they did not have my file. This had to be couried from Urology - another hour or two. The doctor complained that they could have done the test in Urology.
While I waited by myself in a small room I noticed a lot of nurses, including friendly nurse from my earlier visit and two Malaysian nurses wandering around observing. They wore the full Islamic headgear. I took off my clothes and was put in a gown and waited.
When it came to the examination I had quite an audience, including the Malaysian nurses. Friendly nurse had to tell them to stop looking (gaping) at my exposed bottom with the probe coming out of it and look at the image of my prostate on the monitor. I was given prints of the images to add to my collection.
11:45am, 19 September 2006: Appointment for an MRI of my pelvis at St Andrews Private Hospital. I had a lot of tooing and froing over this between the MRI people and my private insurer, Health Partners. Private insurance wouldn't pay (Dr Wan and Prof Y thought it would) because there was no associated Medicare number. It didn't matter if I was an inpatient or outpatient. The cost was around $500. Eventually the health Partners representative said she would agree to their making an exgratia payment. She was sympathetic and said she would take it up with the Commonwealth government as a gap in the system. I realized that I was probably saving thousands of dollars having the HDR (high dose radiation) brachytherapy public at the RAH.
I remember having difficulty keeping still as I was rolled into the MRI machine. The process seemed to take forever but I had enough time to go home for some lunch and keep an appointment at 3:45 pm with the skin specialist, Dr Ly, to cut out a couple of suspicious growths on my arms. The referral to her had been my original reason for seeing the GP and led to the identification of prostate cancer.
I just had time to meet good friend and cousin Andrew at the Hilton Hotel at 5:30pm. Andrew had his own battle with a brain tumour and was a useful diversion and very supportive. He had been in Adelaide to give a presentation and stayed with us for one night.
3:30pm Wednesday, 20 September 2006: After going back to the private hospital to collect my MRI scans and report as instructed, I finally had my scheduled appointment with Prof Y. Andrew waited with me until 4:15pm (Prof Y running last) but then had to catch a taxi to the airport.
Prof Y asked to keep all my test results, scans et cetera. I wonder if they ended up as a teaching aid with medical students. Dr W had said that I should keep all my results, and joked that the hospital would only lose them. He said he would get my GP to give me injections of Zoladek, a hormone treatment, and suggested that I see Dr B the following week.
At my first interview Prof Y stated that I should be on hormone treatment for 3 years. (Dr W had earlier said it was possible I could go on hormone treatment for 6 months.) My father had been prepared to have his gonads removed rather than go on hormone treatment, and I was a little apprehensive. Prof Y said there might be a compromise, that the three year treatment recommendation had been from a study that only combined with external beam radiation, which I was having high dose brachytherapy as well.
Prof Y did not think it had been established that natural therapies were of any use, except perhaps for cooked tomatoes. He smiled as he told me that these had been found useful in a study with rats. He also warned that some studies of anti-oxidants showed that they decreased the effects of radiotherapy.
Prof Y tried to reassure me at the end of our interview by saying, "We'll give you our best shot". I left feeling depressed over this statement, perhaps I was hoping for more. He also gave me another referral for a blood test for PSA. This had to be dated the 1 December because medicare only allows for one test in every three months.
4pm Thursday, 21 September 2006: Appointment with Dr B, GP. I asked about the injection (hormone treatment) but he still had not had the referral from Prof Y, and arranged another appointment for the following week. But he had a lot of other reports, for example, the PSA reading of 26. I was also able to ask about my other results from my check-up back in June - the PSA had then dominated everything else. I had a low blood count but a follow-up test showed that was clear. He also said my good cholesterol levels were too low. I asked about having a colon/bowel check-up but he said "no" unless I had some indication of a problem. "Anyway let's get through this first." Dr B suggested that I phone ahead to see if the script was ready for me to get the injection.
Thursday, 28 September 2006: Phoned GP's surgery. The nurse said she'd ask Dr B and phoned back for me to go in. Dr B called me in early. He had sought advice from Dr W about correct injection timetables (Prof Y had left flexible) - decided on three months. He also had to phone authorities in Canberra to write a script for Zoladek.
Dr B said he could not give an injection that day. I had to take tablets for a week beforehand and then a week after. At first Zoladek had a paradoxical effect, that is it actually increased the production of testosterone at first.
Friday, 29 September 2006: The chemist suggested that I come back for cheaper generic tablets. Another delay.
2pm Thursday, 5 October: Dr B took me to the clinic area near the kitchen to give me the injection in the stomach of the slow release medication. A short interview - he did not appear to want to talk.
The medication took time to take effect. I could still get an erection and ejaculate for the first few weeks.

More diary

Late 2006 got to be pretty panicky after an initial period of disbelief that I was ill. I looked around at other options while medical options seemed limited and almost unobtainable. I trawled the health shelves in the book stores.
I bought and started reading Prostate Health in 90 Days by Larry Clapp. However, this book seemed too extreme (cleansing my body through only drinking lemon juice and sunning my genital area in the backyard around 10 minutes a day) and I was unsure about the author given his lack of qualifications. I do think this book contains some good ideas. For example, I now drink lots of lemon juice after being advised to do so by my current naturopath. The book also advises a good exercise program, which I also follow.
Far more influential for me was Ron Gellatley's book How to Fight Prostate Cancer and Win. I studied this book in detail and made a list of all the recommended supplements. Gellatley, like Clapp, had prostate cancer and cured himself. I accessed the supplements he recommended and his meditation tape via an Internet site. Gellatley helped me get through this very difficult period.
I now see a naturopath I can trust and rely on a healthy lifestyle as well as supplements. I think one of the reasons she is so good is that her father had prostate cancer and she has done a lot of research on it. That personal connection is so important.
I should also mention the efforts of my Christian friends. My neighbour is a a good Catholic woman and she organised that I would be mentioned in parayers at her church plus I was placed on the list of people prayed for around the world with the Legion of Mary ladies. I also had a number of meetings with the Reverend Darren Lovell of the Uniting Church where he listened to my anguish and all my complaints against God and the medical fraternity and said prayers for for my well being. Darren and I had worked together as social workers at Centrelink in other lives. I owe all these people so much.
Anyway, back to the diary:
Friday, 11 August 2006: Dr W, the Urologist, said he thought that the cancer had gone too far for surgery and that my best chance was high dose brachytherapy, only available at the Royal Adelaide Hospital (RAH). He said that his secretary would make the necessary appointment with Dr Y. He also said that I should start treatment within the next 30 days. I should have been suspicious because he also said the same thing when he phoned me on the 31st of July. Dr W's secretary said it was too late to make the appointment and she said that she'd do it on Monday.
Monday, 14 August 2006: Dr W's secretary phoned to say that the earliest appointment with Dr Y at the RAH was not until 2:10pm on Wednesday, 6 September. She promised to check with Dr W that this was not too long away.
Wednesday, 16 August 2006: P/c from RAH Radiology Reception saying that Dr Y was not available on the 6 September, there'd been a mistake. She offered me the next available appointment on 20 September.
The phone call came while I was on a full bus. I had to speak loudly to be heard. I stated that the matter was more urgent. But the woman said she'd still not even received the referral from Dr W's secretary. Then I was offered an appointment with Dr P on Thursday, 5 September.
P/c to Dr W's secretary to plead with her to send the referral. She said the thought she had. She also said that she would email Dr W to see if the new time frame was acceptable. She phoned back after a couple of days to say that he thought that this was okay.
9am Tuesday, 5 September: At RAH for my appointment with Dr P, a nurse told me that Dr P would not see me because the consultants had divided up tasks and Prof Y was doing the high dose brachytherapy. Prof Y was not available and so she was going to ask the registrar, Dr Wan, to see me so that my visit was not wasted. The registrar was not keen to see me and there was an argument as evidenced in the rising voice of the nurse on the phone.
The nurse took some basic information but otherwise nothing happened until after midday when it was suggested that I go and get some lunch and come back after 2pm to meet up with the registrar.
When I finally saw Dr Wan he was apologetic, apologising that this was not his normal outpatients' time. He extolled the virtues of high dose brachytherapy and pleased me by even suggesting I should store my semen in case I wanted to have children after the procedure. Initially he appeared harried, but after a short time he was more laid back and took his time with me. His full name was Dr Wan Mohd Nazri Wan Zunion. He was cheerful and rather overwight and appeared genuinely friendly, giving me his card and inviting me to phone if I had a concern.
I felt he was doing his best on my behalf. He organised a urine flow rate and volume estimation test and booked me to have an MRI done privately. He told me that if I waited to have it done publicly then I would be waiting a couple of months. (Pity the poor buggers relying solely on the public system.) The urine test was in the main part of the hospital. I was told to drink plenty before the appointment. Dr Wan also organised an appointment for me to see Dr Y on 20 September.
9:30am Wednesday, 6 September: Friendly nurse, lousy area. I was running late so I had not drunk as much as I should have for their measuring the flow rate of my urine. I was sat in a corridor behind the large reception area and in front of a fridge. I was then invited to drink cold bottles of water and cordial from the fridge, which I did over the next hour.
Nurses came and went, other people came and sat beside me but not for the same purpose. An older man from the country claimed he had gone to his local hospital for a minor complaint. He said an accident happened in his treatment, which involved some organ being punctured. He was then sent to his regional hospital where he caught an infection and had now been transferred to Adelaide. He seemed philosophical about his now apparently terminal fate, not holding out much hope that he'd ever go home.
I had a long wait before I felt that I had a full bladder but when it came it was urgent. I think I must have drunk 5 or 6 litres. I desperately sought out my nurse and she took me to a little cubicle another corridor away. The pain from my bladder was acute.
I was instructed to urinate into a funnel attached to a hose which was further attached to a machine that printed out the rate I peed. The friendly nurse had left the room. Later she showed me the chart. I was a bit deflated when she told me that when I was younger there would not have been such a petering out with the flow. I had wanted to impress partly for male pride and partly to ensure I got into the program. Later Dr Y told me my urine flow rate was good.
I thought that volume estimate on my original referral had meant volume of urine and that the tests were over, but the friendly nurse assured me that this was not so, I had to come back to have a sensor placed up my back passage as had occurred at the original biopsy.
I walked home from the city (about an hour) and thought that I would do this every day I had the external beam radiation Dr Wan had told me I would have in addition to the high dose brachytherapy.
Thursday, 7 September 2006: Elizabeth and I went to see the skin specialist for our moles. (The original reason I had been to the GP in mid June that led to the prostate cancer diagnosis had been to get this referral. This doctor wanted to cut our a couple of growths, one on each arm.

Cancer Diary

I have kept a diary of the medical care and treatment I have received ever since cancer was first diagnosed. But this does not give the full picture. I have looked at all sorts of alternative therapies as well and tried a few. Originally I did this on my own and later I found a naturopath I coould trust. I have also had to face the anxiety and depression I've experienced as a result of this illness. Having prostate cancer has been more like going before a court and being sentenced to death. I have not had any physical problems directly resulting from the cancer, although the treatments have been terrible. Like the condemned man, I've feared the possible final outcome and desperately sought means to obtain a pardon, or at least a postponement. All of this has a lot of consequences. A lot of people have given me consideration, prayed for me, and I am still in good health (apart from the unfelt cancer). But I feel guilty when I hear about good people dying quickly, especially from cancer.
I think the resulting anxiety and depression can feed the cancer, and the absence of these can help combat it. This led me to seeing a psychologist/hypnotherapist. I was in a bad way at the end of 2009 before I saw her. The health news just kept getting worse. I felt I was dying. PSA levels rose alarmingly and MRI tests showed swelling suggesting it might be in the lymph node. I was recommenced on the hormone treatment, which I was told would hold things at bay for three to four years, but after that there was nothing apart from experimental treatments. The psychologist/ hypnotherapist used a lot of imagery as well as relaxation - all about defeating the cancer. I started to believe in a future and then there was Lourdes.
I saw my GP to get the referral and Mental Health Plan in late 2009. The Plan pays for 12 psychology appointments over a year. At the time I was depressed, and a bigger problem was anxiety. However, the main issue for me was what I had heard about hypnosis as a means for fighting cancer. Nevertheless I don't think separating the psychological (or mind) and physical (my body) is useful. My mental state has lifted dramatically, and I believe my physical state has benefitted as well. I still work at it.
Back to my diary:
Friday, 26 May 2006: My mid-life crisis. I resigned my full-time job with Disability Services to concentrate on a writing course and career.
3:15pm Friday, 16 June 2006: At suggestion of wife, I saw Dr B for a referral to a dermatologist to check moles. He suggested I go for blood tests, including PSA, as part of a general check-up.
Monday, 19 June 2006: Blood test.
2:30pm Friday, 30 June 2006: Follow-up appointment with Dr B. I almost didn't go. I thought he'd inform me if there was a problem. He informs me that I have a PSA of 16.9 and conducts internal examination. He identifies hardness around the rectal part of the prostate. He makes an appointment with a urologist, Dr W, for a biopsy.
Monday, 3 July 2006: Phone for urology appointment. Dr W on holidays. Earliest available appointment is the 24th, not at his surgery but at a Community Hospital. We decide to go on a planned holiday to Tasmania (12th to the 19th). Already outside time window of GP for getting a biopsy, but he said not to worry.
Monday, 24 July 2006: Elizabeth and I keep my appointment with Dr W who conducts another internal examination and makes an appointment for a biopsy on Thursday.
12:45pm Thursday, 27 July 2006: Dr W and nurse conduct biopsy. Painful. Last sample about as much as I could take despite anaesthetic. Dr W said he'd phone me with the results over the weekend. Elizabeth picks me up to take me home.
Monday, 31 July 2006: P/c from Dr W's secretary to say that I was booked in for a CT scan of abdomen and pelvis and full body scan with Dr Jones and Partners at St Andrew's hospital next Monday. Said she'd email Dr W to remind him to phone me.
P/c from Dr W who apologised for not phoning earlier (said he tried on Saturday). Stated that the size of the cancer was significant, that it had been there for at least two years.
9:15am Monday, 7 August 2006: CT scan of abdomen and pelvis. No eating or drinking for 4 hours beforehand, which meant the previous night. Had to drink large bottle of white fluid and injected with a dye.
After CT scan, injected with radioactive substance. Told to stay away from pregnant women and babies and return after lunch for full body bone scan.
4pm Friday, 11 August 2006: Elizabeth and I attended an appointment with Dr W. He had to stress the seriousness of my situation, which I had some trouble accepting. He seemed a little frustrated at my repeatedly telling him that I felt healthy.
He gave me a book on Localised Prostate Cancer, which contained my details, as well as general information:
Date of diagnosis: 27.07.2006
PSA level: 16.9
Cancer stage (DRE): T2C
Cancer grade (Gleason): 4+5 = 9
7 out of the 8 biopsies showed cancer and in depth (not just at surface).
The good news was that the cancer had not spread to my bones and other organs.
Given the extent of the cancer, Dr W advised against surgery, although he would go ahead if I insisted. This was after I had already stated I didn't want surgery after my father's experience. He said that my best chance was a special treatment at the Royal Adelaide Hospital (RAH), Adelaide's central public hospital, a treatment that previously not on offer in Adelaide.

Beginnings

I really want to write about my experiences at Lourdes and what followed because that is the really good news. I also want to write about my next meeting with the Urologist at 4pm on the 10th of February because that's where my focus is now set - the tension is beginning to build. But I need to start at the beginning.  My father had prostate cancer. Treatment was aggressive and for him bewildering - a massive operation to remove his prostate (the surgeon mended a previously unknown hernia on his journey through dad's stomach) followed by orchidectomy after that failed (he was scared off hormone medication). He was just recovering from the last procedure when he died unexpectedly from a heart attack. He was 66 years. His death was not directly from cancer although it can cause heart damage.
The likelihood I had prostate cancer was identified by my GP after a PSA reading of 16.9 and an internal digital examination on 30 June 2006. This was confirmed as a significant cancer on 31 July after a biopsy. He thought that it had been there for at least two years. I had not been to a GP for a check-up (and test for prostate cancer) for many years.
I took a long time to come to terms with this diagnosis and the often slow and challenging treatments. Timelines for gettting these treatments set by the medical specialists were rarely achieved.
I began a four-year writing course in 2005. I tried to write about what I was going through in the first year or two post-diagnosis. They are not great but I think they say something about my state of mind.

A Son’s Inheritance

(Dedicated to Bill snr and his grandson)

You wanted to leave me the old grandfather clock

but you shouldn’t have left me cancer.

You said it had belonged to a great aunt;

kept to bequeath to your only son.

It’s not valuable and stopped ticking ages ago,

despite attempts to make it go;

a good thing you left money as well.

The cancer came early,

in what should’ve been your best years.

In the name of treatment,

they took your manhood and your spirit,

though your heart let you down in the end.

They tell me both diseases are hereditary

and I’ve probably passed them on to my son.

I don’t think I’ll leave him the clock.

The deadly cells were identified

in what should have been the best years of my life.

You wanted to leave me the old grandfather clock

but you shouldn’t have left me cancer.

Discovering my prostate

The GP suddenly slid his chair to his computer on the farthest side of the long desk, like a compere on a TV game show. He clicked away, smiled, ‘Here we are,’ and started going through the blood test results.
I was playing for big stakes, my health, but from past experience I expected to be given the all clear. A voice in my head spoke for him, ‘Nothing wrong here.’ I was so convinced nothing was wrong that it had taken me a few weeks to get back to seeing him. I’d even considered not going.
He mumbled out the results as he quickly scrolled down the page. 'Bad cholesterol okay, good cholesterol too low, too many white blood cells. Not to worry, white blood cells can be high for any number of reasons, flu, fever. They recommend another test.'
He clicked through to the next test.
'I did have a bad cold at the time,' I said, hoping to slow him down. I was confused. Why was he rushing through these results. The blood test had been his idea.
‘That would explain it,’ he said.  ‘And PSA 16.9.’
Pause.
‘Is that bad?’ I asked.
He nodded.
And so began a process of discovery about men’s health, my health. The prostate is one of the few body organs exclusive to men and it produces a protein that can be picked up in blood tests called Prostate Specific Antigen or PSA. A high PSA count such as mine and the indications are that something is wrong. And the worst possibility is cancer. I had been down that road before.Dad had prostate cancer nearly thirty years ago. It didn’t kill him in a hurry but it had made his last few years of life miserable. I remembered the painful and embarrassing tests he had to undergo, followed by surgery that seemed barbaric in its severity.
The last thing I expected was that I would have prostate cancer as well. I felt I was afflicted far too young compared to dad, but then worked out at fifty-seven I was only six years younger than he had been.
Another big lesson was finding what a difference of opinion there is about how best to treat this cancer. Surprisingly little is known about what causes it although it is a significant disease. It’s the male equivalent of breast cancer with approximately the same number of people diagnosed and dying from it each year. However, it has only recently been recognised as a serious problem with some serious research starting to happen. People with a family history are more likely to get it and certain national groups with distinctive diets are less likely to get it. However, this has had little impact on the mainstream treatment options that are offered, which mainly involve cutting, burning or emasculating. They are punchy and invasive. But first come the tests.
The tests I had to go through after the initial interview with the GP seemed endless: results from one led to my needing another. While the doctors were testing to decide which of their big guns to use on me, they had no interim treatment on offer. They placed little value on alternative natural treatments. They reassured me prostate cancer is slow growing, but meanwhile my PSA count increased 26.
In desperation I took time off from work and researched alternative treatments. I changed my diet and started on whatever vitamins, herbs and minerals other people had said they found helpful.
Finally the scans and other medical tests were complete and a treatment plan was developed.
Doctors classify prostate cancers into those that are manageable or curable. These are further sub-classified to decide what treatment will be offered. It was decided mine might be curable using High Dose Rate (HDR) Brachytherapy, a very intense radiation directly into the tumour, and very high tech. But wait: there’s more.
Only one of the high tech machines needed for the treatment is available in Adelaide, courtesy of a local philanthropist who donated it to the Royal Adelaide Hospital. A year ago I would have had to go to Melbourne for the same treatment. So the local treatment is the good bit. The bad part is the queue of people needing it. There’s a six-month waiting period.

I’m not much good at waiting. However, I have learnt a lot in the past few months, not just about my prostate.I learnt I’m not afraid of dying but I am scared of some of the treatments that might be done to keep me alive a bit longer.

I learnt empathy for middle-aged and older men. We are generally not very supportive of each other. I also learnt that I had never properly grieved over losing my father. Most of my tears over the past couple of months have been shed over him, rather than me. My biggest lesson has been about the generosity of love.

Being married to Elizabeth for 27 years has been the best part of my life. As soon as I got over the shock of the original diagnosis, I discussed it with her. I had always regarded myself as the strong, dependable one in our relationship. When I was first diagnosed I imagined terrible things and grieved bitterly for my father. She took over. She has been uncomplaining in the role of sole breadwinner, while I focussed on good health and beating this disease.

Adversity tends to teach you a lot about yourself — and other people.