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.