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.