Thursday, April 4, 2013

Prostate High Dose Rate Brachytherapy

I'm only now just completing this post from May 2011. Seems rather glum, which probably explains why I stopped. Ironically I feel good at the moment even though the cancer and the treatments offered have moved to the next stage. I also now realize how lucky I've been to have had such good people helping me along the way in trying to keep me healthy. I didn't fully appreciate them at the time, and I could've been more generous in talking about them than I have been below. I had a depressive period, which is reflected in my diary. I think this is probably very common in people in my situation and has not been given enough recognition. On the other hand, most of the people in the health profession have treated me with much kindness and tolerance.
Before moving on to what's happened since, I shall finish this blog and finish recording my earlier handwritten diary. I stopped diarising in early 2011 so the story from then will be less structured, but that is for later. My last entries in this diary are chaotic and hard to follow.

What's going on? In March this year I felt increasingly tired so that by Sunday (27.03.2011) I did something I haven't done for years. I spent the day in bed. Then on Monday I ejaculated blood - a rich, red fluid. I have enough Christian guilt from my childhood about masturbation, but this puts the cap on it. I was told later that this was a side-effect of the brachytherapy back in 2007 (described below). The blood was enough for me to go to see the GP and email the Urologist.
After a week and a half the blood decreased and became almost black. My naturopath tells me this is a sign of old blood. I've also got over a lot of the tiredness. This has been greatly helped by a visit to my hypnotherapist and more regular hypnosis. Curiously I've started ejaculating a clear liquid with the blood. I haven't produced anything like semen since the brachytherapy in 2007. Also I had passed a clear liquid out my bottom, another by-product originally of the radiation.
The Urologist didn't respond to my email, but I made an earlier appointment. The GP couldn't throw much light on what was going on either, but he was reassuring. I haven't been (or wanted to go) to mass for a couple of weeks and I've not found latihan with Subud as rewarding as usual. However, I did have the strongest of experiences one morning I felt tired and not inclined to get out of bed - a big hand grabbed me by the neck and shook me in the air - like someone was trying to tell me to dust myself off and get on with it. Plus I was attending a weekly prayer group in the lead up to Easter - I saw this as my Lenten sacrifice. Nowadays I'm more likely to fast during Ramadan than Lent. Then I got the phone call from Michael.
Michael is my sister's partner. They live a long way away in Queensland. Among other problems he has been battling bladder cancer for years. After seeing the GP for extreme discomfort around his pelvic bone and then a CT scan, the GP was convinced the cancer had spread. Bad news kept coming and Michael was convinced he only had a couple of months of life left. This occurred less than two weeks he was due to head off to England for six months. To reassure Michael, I promised to pray for him at latihan, mass and the prayer group, which, if nothing else, led to my re-involvement in all three.
After visiting a local Uniting Church and asking the Minister to pray for him, Michael seemed to have a major recovery. Miracles can happen. I wonder. Michael also had a receiving that I needed to return to Lourdes twice more.

The following account of brachytherapy is the closest I've been to being on the stage. As I understand it, there are two types of brachytherapy. The first is low dose rate (LDR) brachytherapy where radioactive metal balls are injected into the prostate and these are ejected naturally by the body over time. The second is high dose rate (HDR) brachytherapy, which is described below, and involves the direct insertion of rods into the prostate through which radioactive material is then placed. Because of the extreme amounts of radiation involved there is only one place in Adelaide where this procedure can be safely performed - the basement of the Oncology wing of the Royal Adelaide Hospital.

Wednesday, 4 April 2007: I did the half hour walk to the chemist at Collinswood, a lovely walk across the Torrens River (really a creek) and the parklands on either side, to have my three monthly Zoladek prescription (hormone injection). They didn't have any. Only keep one in stock and someone else had come in earlier in the day and taken it. Could be in tomorrow by 10:30am, only an hour before the doctor's appointment to administer it.
Thursday, 5 April 2007: This time I borrowed my son's car to go to the chemist. As it was I had plenty of time - Dr B was way behind.He has a sense of humour. He escorted an old Italian guy to the surgery past the waiting room, saying "snap" to me as he passed by, and showed the box of Zoladek. Hurt a bit later as he injected me in the stomach. At least he bulk billed.
Dr B gave me another script for Nexium and told me to take one before going into hospital.
Friday, 6 April 2007: Have to get better from the external beam radiation, and ready for brachytherapy. Gradually feeling better. Not getting up so much to wee at night. Bowels becoming less of a worry, but still some urgency (and accidents). Apprehension as the day to go into hospital gets closer.
Monday, 16 April 2007: Phoned the Royal Adelaide Hospital (public) as instructed (between 1pm and 4pm). Given the bad news that I had to be at the hospital at 8am.
Fasted after 9pm. Took the anaemia, but some sensitivity - I couldn't hold onto for it for the recommended 20 minutes.
Tuesday, 17 April 2007: Never got around to getting slippers and forgot thongs.
Took 2 Microlax again.
Had to convince Elizabeth to take me in - dropped me off at the bus stop. She had work commitments and the original plan had been that I would get the bus in, but I couldn't see how I'd organise myself to be in at the hospital for an 8am start.
I took her black bag, but I didn't feel right using the wheels on my way up to the fourth floor. I was ten minutes early for admission but there were a lot of other people waiting already, although none of them had a case like me. The door outside did say "Surgical Admissions", but above it was the sign, "Day Surgery". More waiting.
Eventually got in. My name was taken and I was told to wait. Then called up and a clerk took my details. I signed in as a private patient - I felt obligated to Prof Y to do that.
I was then told to wait again until called. I was then interviewed by a pretty African nurse, hair in braids. She asked me a lot of questions, including whether I was pregnant: "Who knows might happen today? Then women won't be needed." She also said that I could keep my boots on, instead of slippers. (I had previously been told, and given a printout, saying that I'd be waiting around in my surgical gown, and that I should have a dressing gown and slippers.) I'm taken to an area to change. I'm moving through the system. I'm surprised that it's only 8:25am.
My bag is put on a wheeled rack and labelled after I have finished changing. I put on stockings, so I didn't  need socks. When I came out of the cubicle I was told to take to take off my dressing gown and boots and get on a trolley. Dressing gown and boots were put in a plastic bag and placed under the trolley, not to be seen again until I was ready to leave. So much for the need for dressing gown and slippers.
More waiting.
An unshaven man chewing gum and smelling of cigarettes and maybe alcohol comes to collect me. The nurses seem reluctant to let him take me , but he insists that I have to go to the radiology area. (The anaesthetist, Dave, who later takes over says the hospital doesn't have orderlies any more, just people contracted to move patients between wards. I said, "Like sacking the tea lady to save money." He said a hesitant "Yes". He was pushing me in a trolley at the time and we turned a corner and there was a woman with a tea trolley. I'll bet she was a volunteer, but I didn't say anything. He said, "See we still have tea ladies".)
The guy pushing me didn't say much and the ride lasted forever. It reminded me of Redruth Trail (a long, tunnel-like passage with so many turns that totally disorient) in the Remand Centre. Sinister: no one around, never ending, and no windows to the outside world.
We ended up on the second floor of Radiology, really a level below ground, no windows here either. Someone once told me that the plan for the Radiology Building had been reversed by mistake so that there are no views of the adjacent Botanic Gardens on any of the floors, as had been in the original plan.
I'm handed over to a friendly nurse named Glen. I think: Maybe they give you a male nurse to make you feel more comfortable. Glen wheels me into a store room. It's 8:50am. Glen leaves me. Do I want something to read? I say "No".
I might be wrong about being on the 2nd floor at this stage because it all looked a lot like where I went for external beam radiation. I remember people looking at me curiously as I used to look at the other people on stretchers.
Glen comes back and wheels me through a door marked "Brachytherapy". This is the outer room. There are a lot of people in white gowns doing inexplicable tasks, plus, I guess, the inevitable observers. They don't use masks.
A man with an East European accent, named Zack, asks me if I want a spinal or a general anaesthetic. He recommends a general. I don't care much. How can I decide? So we settle on a general.  Then another white coated man, a bit smaller, comes from the inner room, another anaesthetist. He doesn't introduce with his first name, just Dr xxxx, but later mentions his first name, Dave. He talks a lot. Anyway he informs us that Dr S, the urologist performing the procedure, wants me to have a spinal. He explains to Zack that he doesn't want me moving around after the procedure because the needles are left in.
Prof Y visits me. He asks what Dr W (my Urologist) had said about the hormone treatment. I said five and a half months before and after brachytherapy. Dr W had said that makes the brachytherapy most effective. Why is he asking me about Dr W? I haven't seen him for ages. Prof Y wants me to stay on the hormone treatment for three years. He knows I'm not happy about that idea, and repeats his joke about how American men refuse to stay on hormone treatment because of the side effects, whereas Europeans do what they're told. He indicates he's finished with me and I'm wheeled into the inner room. White coated people are busy with many tasks I don't comprehend.
Three technicians are working on instruments in front of computer screens. Professor Y said there's been problems with the software. This biggish man is also called doctor, but obviously not a medical one. He says it's more than the software.
A couple (boy/girl) in white frocks look on. I guess they're students. They're quiet. There are 3 to 4 nursing type people, including Glen. There is the Indian nurse I always see with Prof Y. We chat. She says I look familiar.
I'm moved over onto the operating table. Then I have to sit up while Zack does the spinal - a bit of pain. Dave gets me to hunch right over - makes inserting the needle easier.
Once I'm lying down they hitch my legs up. Zack asks for ice. The nurses find some and put it in a rubber glove. He uses this to feel my sensations. It can't be much after 9am.
A nurse, a middle-aged woman, is assigned to sit at my head and talk to me, but she doesn't have much to say. Glen asks if I'd like anything. I say I'm surprised there is no music - Bach'd be good. He comes back with a radio player, like the one my daughter had, but they're not playing Bach. Someone asks if it is "The Messiah" - I say it's Wagner (I'd heard them announce it on the radio). It may be because of my medication. Zack had put a drip in a vein in the back of my hand while we were in the other room, and he's been pumping something good into me. I feel relaxed and a bit disinhibited. I feel clever.
Dave takes over from Zack. (I really only need one anaesthetist.) He tells Zack he can go, but Zack comes back later. He's not needed elsewhere. Zack says he's interested that I'd come from Queensland. He said that he wanted to move up there next year.
I have a strong feeling of pressure on my pelvis on the right side. Dave says there is nothing there - that your brain remembers your last sensation once anaesthetised.
At times they put a tube up the penis to takes a video, as well as who knows what. With Glen's help I get to see the screen. I also get to see the screen for scanning the prostate, inserted via my bottom. Denby (the operating Urologist) doesn't say much. I now feel familiar enough with him, not to call him Dr S. He's preoccupied with inserting the pins. Prof Y comes and goes, and has an opinion on a lot - uses terms like "baseline".
Hollow pins are being inserted into my prostate via the area between my penis and anus. There's lots of problems with the prostate moving. They have to get the calculations so precise. Dave tells me not to cough as that can shift the prostate. After a long time Denby leaves when he decides the pins are properly inserted, and probably a lot of other things I don't know about.
I'm in that room 'til after 2:30pm and Dave talks most of the time, about his interest in cross country skiing, and skiing tragedies. He's employed full-time in the hosptial. I struggle to come up with subjects to talk about, for example, the dangers of being an anaesthetist. He goes on at great length about how it is safe.
My back hurts. Dave gives me more pain killers via the drip, but they're not as strong as what Zack had given me. I ask for more about every half hour. He says it would be my shoulders, but I insist it is my lower back.
People go off to lunch, but the work doesn't stop. It's getting near the end. I'm connected to the da Vinic robot. All the people leave the room for the radiation. I'm suddenly alone.


A nurse enters the room to check if the radiation levels are within safe limits. She has a little detector.
There are other people that I only vaguely remember, for example, Jill, who was very talkative. Later she was one of three otheres in the adjoining room working on a console.
I told Glen the story of how an Adelaide builder had provided the money for the robot in Adelaide so that men woould not have to go onto a waiting list for treatment in Melbourne. Then I complained of my having to wait so long to get an opportunity for the brachytherapy treatment. (They only do one a month.) Glen was defensive citing ongoing costs. Denby was amused, looked up and smiled. The only time we really engaged.
Dave wheeled me back to Recovery in the other building. We were accompanied by my assigned nurse. I saw Joe from my time with external beam radiation - he hadn't been at the show today.
Dave wasn't going to be with me tomorrow. Zack said goodbye as well. I went from two anaesthetists to none. One of them asked about my preference for leaving medication. During the late afternoon feeling came back to my legs but they were tied to a pillow to stop me moving. The pins were still in place. The transfer to the trolley had not been easy.
I was wheeled into Ward 6B on the 6th floor of the Radiology Building. My room was an open shared space adjacent to the nurses station. My bed was against the wall. There were two old men in the beds opposite - one made odd loud noises and the other had dementia. The one with dementia thought he knew me. He was mobile and would come and stand over me and ask questions: "Are you up or down?" He kept telling his dog to be quiet - I think this was related to the bizarre sounds coming form the other man.
Because of all the attachments coming out of my bottom they had a lot of trouble placing me in the bed, even though a hole was cut out of the middle so they (the attachments) could dangle freely. My bum did not seem to fit right. I still had the catheter so it was okay to wee, but I was not allowed to poo. I was given some tablets to stop me. I kept worrying. I didn't want to move so there'd be minimal adjustments needed with the rods the next day.
I managed to phone Elizabeth at work, but she was not for a long conversation. She said the dog had caused a mess and she needed to go home early to clean up, and that would make her late to visit. That German Shepherd was bad news.
Dinner arrived and very different from my normal healthy diet. Much like I'd expect hospital food - roast lamb, but everything tasted like it'd been stewed to excess.
Elizabeth and adult daughter, Clare, visited around 8pm. Nice.
I didn't get a phone or TV (the only benefit I could see for going private from the form at admission), but I did get a laugh from the nurse when I asked about why I didn't get them.
I took pain killers throughout the night - didn't sleep.
Wednesday, 18 April 2007: Around 8:30am I was wheeled back to the brachytherapy rooms. The drip had been reinserted through the night - more fasting.
They gave me a couple of anaesthetic lolloypops to suck - not good - sickly and not very effective. Real pain this time as Denby and associates repositioned the pins according to to Xrays taken from the previous day. It hurt, like hitting a nerve at the dentist, only this time there were 17 of them to be positioned one at a time, and into my prostate. After it was over Denby seemed to remove them all at once.
The procedure this time only took a couple of hours. Denby left and Prof Y put on the padding where the needles had been to stop the bleeding.
When they shifted me back onto the trolley the giddyness started. I was farewelled through the outer room like a departing hero, including applause.
Some of the nurses were excellent and dedicated to their job, unfortunately more were not so good. An overweight one hurt her knee getting up from a couch, and was taken away in a wheelchair for observation. She returned at the end of the shift, seemingly improved. A number of other large nurses sat all of the shift on easy chairs in the nurses stations. The main discussion was around the need to assert their rights.
I vomited twice - the giddyness didn't go away. I could still taste those anaesthetic lollypops. I was told by the ward doctor that I had to pee and poo before I cold leave. In the end he prescribed an anaema - given by a male nurse.
Peed blood. Phoned elizabeth to pick me up. Daughter Clare and boyfriend (hers, not mine) collected me - still thinking I'd vomit all the way home.
Thursday, 19 April 2007: Gradually recovering. Slept well Wednesday night. Awoke not feeling giddy. Some numbness in right calf and thigh. Nicks all over me.
Now! Am I cured of cancer?
I'm reminded of an incident where, at Glen's request, Denby turned the video screen showing moving pictures within my bladder, and I could see my prostate pressing in against the bladder wall, as it was pushed from the other side by the needles.
Saturday, 28 April 2007: There are a lot of sore bits - scabs and cuts. Peeing gets harder and a little painful. Peeing also reacts on my bowels. I have to check that I haven't pooed. The numbness in my right thigh is still there and my left foot still gives me pain when I bend it near the toes. I ejaculated on Thursday - a dark brown, runny goo, I guess blood. It'll be good when I can wee without pooing at the same time.
I've been through the gambit. Had to listen to an old man with dementia shouting at his imaginary dog. I had to fight for the treatment I've had. People have prayed for me.
I've clung to the advice of a nurse who helped me when I first tried to get an appointment with a doctor at the Royal Adelaide Hospital. She summarised what would happen - the brachytherapy and then I could get back on with my life, return to work. It's not been that simple, but I've clung to that promise, plus the registrar Dr W's practical advice: keep still during the external radiation and you won't have other problems, for example, bowel damage. That with brachytherapy gave me 70% chance of full recovery.
Wednesday, 23 May 2007: Hospital check-up with a different doctor. He warned me about giving up the hormone treatment - clearly on my head if anything goes wrong. Denby had said that it didn't matter. I can't see how I can return to work with all the problems associated with the hormone treatment, especially the tiredness, plus pursue my writing and contribute to the family and household.
Next hospital appointment 6 months time, 3 months to Dr Richard W (my Urologist).
Friday, 15 June 2007: I started the process of recording my treatment at friend Marilyn's suggestion. She has now died of her cancer. I feel destined to keep updating it, if only to keep faith with her.
Monday, 25 June 2007: I'm conflicted about the hormone treatment. I've had enough. I email Richard about what I should do. He replied that there was no clear answer, and gave me a good summary of the medical debate.
August 2007: Appointment with Dr Richard W. PSA down to 0.09. Gave me samples of three different drugs (Viagra, Cialis and Levitra) to stimulate erectile function. Told to decide what suited me best and then take it intensively. He joked that it doesn't happen automatically as other patients have complalined - actually have to initiate sex. Cruise coming up, maybe a good time. But some of these pills cause pain. Ciallis best.
December 2007: Another visit to the RAH, another doctor. PSA has risen to 0.17. A bit of a worry. The doctor was not reassuring. He again raised the issue of whether or not I was on hrmone treatment. Have I made a mistake?
Friday, 7 March 2008: Confiusion about appointment with Richard. His office sent an appointment for earlier. I had worried that this was within the three months we were supposed to meet, although he said this was not a big issue, of course.
PSA now up to 0.41. Not looking good. Richard said to wait and see. I asked him for the okay not to go back to the RAH - they keep reminding me of my refusal to continue with the hormone treatment. I feel guilty and obliged to them because of the treatment they provided me. Richard said it was okay if I not go back, and that he would report my progress to them. He added that I would probably never get Prof Y seeing me there anyway.
Rang RAH and cancelled my next appointment, but this must not have been recorded. I still got a later call from the doctor I was to see to check if I was okay after I missed the appointment.
Thursday, 22 May 2008: Meeting with my GP, Dr B, to find advance result of blood test. Rate of PSA increase improved.
Thursday, 29 May 2008: Appointment with Dr Richard W. I had made it earlier than three months because of anxiety over the previous increase in PSA. Reading was 0.5. Richard said this was good - PSA could be stabilising and not an indication that the cancer was coming back. Asked him to check out my boobs because of pains and imagined lumps. Elizabeth accompanied me.
Thursday, 28 August 2008: Appointment with Dr Richard W. A good PSA result again - 0.48. Richard said we could now extend out appointments to six months. He also offered me various sexual aids - injections, pumps et cetera - these all seemed appalling - said that I'd wait and see. Desire has somewhat reduced, as well as ability.
Thursday, 26 February 2009: Appointment with Dr Richard W with Elizabeth. Depressing news. PSA up to 0.9. Richard talked of my going onto hormone treatment. He said that this medication (Zoladex) could be done intermittently and could wait until my PSA rose up to 4 or 6.
Friday, 6 March 2009: Visit to my Naturopath. She made the point that exercise and fish oil can send up the PSA count. I felt much better.
Monday, 25 May 2009: Appointment with Dr Richard W. Good news. PSA down to 0.6. Appointments back to 6 months.
Wednesday, 23 September 2009: Appointment with Dr Richard W. Bad news. Not just bad news - shattering! PSA now up to 1.7. Richard still saying wait until the next test.
What caused a long period of hayfever and did this affect PSA / stress with work. Work contract finally finishing.
Went to GP for mental health referral to psychologist Dr Sue S for hypnotherapy on basis of depression.
Monday, 15 February 2010: Appointment with Dr Richard W. PSA further increased. I think I blocked out the last number - 2.3 or 3.4? Discussion about options. Richard said that it could still stabilize. My PSA reading is 4.3 - not much to hang on to show that this could be slowing. Richard wants to wait for the next test to determine if hormone treatment is needed.
I raised the possibility of an operation to remove the prostate. Richard said that he'd need to be sure the cancer is limited to the prostate. He thought there'd only be 25% chance of success and even if successful I could have urinary incontinence. He expressed further reservations about surgery. He said that he would discuss this with his Urologist colleagues and get back to me, or I could phone him if I did not hear from him - of course, I phoned him.
Richard's secretary gave me a referral for CT and bone scans. The first appointment I could get with him to follow-up would be delayed three weeks because of our planned holiday in the Northern Territory.
 Monday, 15 March 2010: Appointment with Dr Richard W. CT and bone results clear. Next his secretary arranged appointments for biopsy and MRI.
Wednesday, 17 March 2010: Phoned Richard. All on track. Also discussed insurance. QBE were hopeless. Their dismissive attitude was very disappointing, especially given all the money I've paid them over the years through my Credit Union for household and car insurance. They make no allowance for people with cancer, whereas I found Covermore on the Internet did make reasonable allowance for prostate cancer. My PSA count was under 16 and the cancer had to still be located within the prostate. I needed to confirm with Richard that he would support this, preferably before he carried out any further investigation. All good.
Monday, 29 March 2010: Prostate biopsy by Richard at his surgery. This was not painful like the first time he did this to establish I had cancer.
Tuesday, 30 March 2010: Transrectal Ultrasound (MRI) at St Andrews Hospital.
Thursday, 1 April 2010: Appointment with Richard to discuss the results of all my tests. Elizabeth attended all these appointments I had with Richard.
The biopsy showed cancer in the right portion of the prostate. The CT and bone scan were clear but the transrectal ultrasound (MRI) showed growth in a right lymph node. On the basis of the MRI result Richard did not think that there was any point in continuing towards operating. Interesting that the MRI is far less intrusive (no chemical injections required) than CT scans, and also gives far better pictures.
Richard gave me a new self-help book and a prescription for hormone treatment, a final recognition that the brachytherapy did not eliiminate all the cancer. He explained that the tablets were to soak up testosterone from glands and the injection works on the prostate (and presumably the testes).
Thursday, 15 April 2010: Visited GP, Dr B, for Zoladex injection in stomach.
A lot of other things are happening in my life to help me deal with this cancer. Ongoing naturopathic treatments with Tanya. Hypnotherapy sessions with Sue. I used up my first 6 psychology interviews (Mental Health Plan) and so went back to Dr B to approve a further 6.
Wednesday, 9 June 2010: Appointment with Dr Sue S (Clinical Psychologist). Discussed my current negative thoughts and Sue's suggestion that I write these down and examine rationally. Also discussed imagery I could use, for example, me in a small capsule travelling through my body and zapping cancer, in a healing fountain, and good prostate - damaged prostate - good prostate.  Also discussion about what I can do in the fight against cancer during my three month trip to Europe, including checking out what the treatment options are there.
Tuesday, 13 July 2010: Jonathan, my son, told me about a new treatment (PROVENG), which works on boosting the immune system. Nice of him. I need to check on its development.
Also went to Dr Richard W today. PSA down to 0.31 from 4 (four months ago) attributed to the hormone treatment. Richard said that I could have a break - take tablets to end of August and then wait and see what my PSA is when I get back from Europe. Richard told me that he was going to an overseas conference on the debate over intermittent versus continuous use of hormone treatment.
Thursday, 11 November 2010: Appointment with Dr Richard W. I was nervous. Needn't have been - PSA dropped to 0.13 despite break from hormone treatment. Amazing. I attributed this to a miracle from my visit to Lourdes (refer first post). Richard attributed my PSA drop to continuing effects of the hormone treatment. He first thought I didn't need to return for 6 months with no further hormone treatment, eventually settled for 3 months. Wait and see!
Monday, 7 February 2011: On Friday (4 February 2011) had PSA blood test. Confusion about requiring a referral letter from GP to see the psychologist, but already done. Still useful to have appointment so he could look up PSA result - had gone up to 1.05.
Thursday, 3 March 2011: Very tired. Had day in bed.
Monday, 28 March 2011: Blood in ejaculation, normally nothing. Emailed Dr Richard W about this. Also made appointment with GP Dr B.
Tuesday, 29 March 2011: Appointment with GP, Dr B. A small amount of blood appeared in a urine sample. Dr B said ejaculating blood may not be linked to prostate cancer or its treatment, although if it persisted I should see Dr W. Dr B said it could just be a cyst that bursts - this happens even in young men.
Wednesday, 30 march 2011: Blood in ejaculation, less than Monday.
Friday, 1 April 2011: Quite a lot of fluid. No more semen since the radiation treatment, now replaced by blood - rich, red.
Wednesday, 6 April 2011: Blood (ejaculation) almost black, but not nearly as much. Still farting mucous, another after-effect of the radiation treatment.
Appointment with Dr Richard W. PSA now 12. Back onto hormone treatment.
I'm feeling negative about the progress of my prostate cancer. I feel like I'm walking in the footsteps of hordes of vanished men. The RAH wanted to keep my scans for teaching purposes. I imagine them still being used by students.  

Wednesday, April 6, 2011

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. 

Monday, March 21, 2011

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.

Friday, March 11, 2011

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.

Thursday, March 10, 2011

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.

Tuesday, March 8, 2011

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.

Thursday, January 27, 2011

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.