I'm just starting on the journey having been diagnosed by a urologist and I am now waiting for the first appointment with the oncologist.
The last time I wrote, I was waiting to see my oncologist. In the meantime, we attacked the problem with positive thinking (that's a laugh what with the worldwide floods, poverty and terrorism), diet - we cut out cheese, red meat and as much dairy as possible and I flirted with Zeolite. This is a strange treatment and I felt as though I was bound tightly in a fish net! I gave it up after two weeks as I felt very strange and airy-fairy! All this fiddling around reduced my PSA to 7.3 before any real treatment started.
Now to the oncologist. She said immediately that I was not going to have Radiation Treatment but she would like me to go on Hormone Therapy. I started on Cyproterone 200mg per day for two weeks (in fact 15 days) and then switched to Zoladex 10.8 implant which will have a three month life. On the day of the change over, I had another blood test for another reason (controlled cholesterol) in which we included a PSA test which was 7.8 (up 0.5). No real panic, just spent the day making guest lists for the funeral! - not really.
The 15 days on the Cyproterone was not really pleasant. I found a list of side effects and I had 18 out of a possible 41 but that's probably just me. My GP inserted the Zoladex implant which was not unpleasant but as I left the surgery he called me back and suggested he had another look as I was bleeding heavily. He plugged the leak and everything was OK except for my shirt and underpants. Cold water wash is magic for getting rid of blood.
The Zoladex really in quite unobtrusive and, so far, free of any uncomfortable effects and I feel quite good but sleep a lot.
I see the oncologist in two and a half months and she will help me decide whether to do another three months of Zoladex (she has already given me the prescription so perhaps there is a clue there) or whether I start the radiation thereapy which she said would be for seven and a half weeks. There is a little bus in our local town which goes to Perth every weekday dropping people off for treatment and continuing round in a circle and picking everyone up again and coming home. Perhaps they might even have a sing-song!
I don't really feel that I'm having treatment but the problem is that when you wake up feeling good, after about half a minute you remember.
When I last wrote about my treatments in August 2007, I had just started Hormone Treatment.
At the end of the first three months implant treatment, I visited the oncologist and was put onto the second three months implant treatment.
How did it go? I had all the aches and pains that were suggested as side effects but the main side effects were fatigue and hot flushes.
After one month on the second band of treatment, I was called in to see the oncologist who said I would be starting radiation therapy in the second week of January 2008. This took me by surprise as I thought this would not start until the end of the second band of hormone therapy but the oncologist said it was quite normal.
As mentioned previously, there is a mini-bus for the 100km ride from Mandurah to Perth so I duly booked in for the 'Cancer Bus' as it is known. The bus is a Mercedes van that has been expensively converted with luxurious seats and air conditioning. The first day was very pleasant with good people on the bus with a friendly atmosphere. But - Oh Dear, as a commercial vehicle designer in my former life, I was appalled at the suspension and ride on the bus. I arrived home completely devastated with severe back problems.
By luck, a train service had opened two weeks earlier with a completely new route, one of the biggest projects in Australia. I went the next day on the train and have been travelling that way ever since. In no way do I want to distract from the bus service which is manned by excellent volunteers and is very safely driven but the train has cut down my fatigue by 75%. The cost of the train is Au$7.20 per day whereas the bus is free. It's worth every cent.
I am 70% through the course and am still very fatigued with hot flushes which just won't go away. Some slight soreness has made itself present in the stern area. The duty oncologist who you see every week recommended Ural for the waterworks and salt water washes. The Ural is just about holding the soreness and slight burning and the duty oncologist has suggested Cranberry juice twice a day so I am keeping that thought in reserve. I also take Ureze which is a Arctostaphylos uva-ursi based tablet.
I am holding the expected rectal soreness at bay using an ointment called Hemocane which is a soothing ointment for hemorroids. I have no sorenes whatsoever but there are still 11 treatments to go.
I cannot speak too highly of the care shown by the Radiographers and nurses of Perth Oncology at Royal Perth Hospital. I am made to feel very comfortable and as if I was the only person being treated.
Sadly, there is no measure to know whether all this is working. A PSA report would be skewed by the Hormone Treatment and of no use at all. I am to be booked in for an up-date consultation three months after the ERBT treatment finishes and a PSA test will be used to see how everything is going.
Well, I pressed on and finished the EBRT on March 5th having gone by train every day (except for weekends and service days). The new train is very good. The ruling gauge in WA is 3 ft 6 inches and with full width carriages and a top speed of 130 kph, it is technically quite interesting and exceptionally smooth.
After the last treatment, I was given my first post treatment specialist appointment and to my surprise it was only seven weeks on. I queried this and was told that they wanted to create a base line. I said the hormone effect would still be present but they were not impressed by my medical prowess. They gave me blood test paperwork so that I could have a blood test before the seven-week meeting. The blood test would be for PSA and testosterone levels.
I was told not to stop any of the comforting medications I was using as, just because the radiation treatment had finished, the effects would last for several weeks. So I kept up the Hemocane (what exceptional medication that is) and invented a new drink being cranberry juice and Ural - dynamite. So I had no physical soreness or sparky bits.
During the sixth week, I had my blood tests which showed a PSA of 0.01 ng/ml and a total testosterone of 0.8 nmol/L (The normal indicative levels for testosterone shown on the test result was 10 to 35 nmol/L so basically I have a very limited future as a sperm donor!).
When the specialist reviewed these results, she said these were quite normal and to be expected and to, on no account, try to artificially boost my testosterone levels by eating seaweed or whatever as this could lead to a disaster.
She then asked how I was going and, being a methodical person, I had a list. I said "Hot flushes and feelings of intense cold continuing, still very tired, not strong with some noticeable weaknesses, depressed, weepy at times, feeling generally down and useless, minor losses of memory and concentration and low moods and irritability."
I was expecting a soothing hand on my brow. Instead, she nearly fell off her chair laughing and said it was quite normal to have all of the above (her very words) and that most of these problems would go over the coming months. She then said everything was normal and come back in six months, which I felt was very encouraging.
Now, I'm exhausted so I'll rush off and have a drink of cranberry juice. I could get used to this stuff. Just a personal word of warning. Get the lite variation (regardless of the effect of sweeteners) as the calorie count of normal juice is off the planet with the sugars.
So, we soldiered on having no further treatment because there was none necessary or, if the truth is known, available. Life virtually returned to normal - tidy this, vacuum that, feed the dogs, look after the cat - all minor day-to-day things.
Then came the six months appointment in October 2008. Three minutes - in/ out/ goodbye and another six months. My PSA had risen to 0.08 which was normal. We carried on, still getting hot flushes during the night and being quite tired.
Then came the great day when we received Au$2,100.00 from our Prime Minister to counteract two factors - the first being advanced age and the second helping us over the hurdle of the Global Financial Crisis. A stupid move by the Government but I was not going to send the money back. So, out came the whips - Line the library with wood panels and buy new bookcases was the cry. And me going round still suffering the hot flushes and the thought that is ever with you - Have I or Haven't I still got IT? So, I lined the library and built up five new bookcases to add to the twenty three we already have. Before anyone gets carried away with our grandeur, I must point out that the library is really a tin games room extension on the back of the house but it does look better on the inside being lined.
All this is to illustrate that life does go on and the bonds between us are strengthening all the time as a result of our experience.
So, the next six months which takes us to April 2009. My PSA had risen to 0.20 which was a 250% rise and was, in my feeble engineer's mind, the equivalent of loading 25 tons on a 10 ton axle. Not good. So we went to RPH and there was a new Registrar. I had not seen the Headmistress for the last three visits. The new doctor was very pleasant and said he came from Cardiff but whilst his Christian name was Evan his surname was Vietnamese. All that is of little consequence. He, like me, was concerned at the percentage increase in PSA and suggested a two months interval until the next blood test and appointment.
What a long two months that was! The next appointment was at the end of June 2009 and the PSA was now 0.26. We saw the Headmistress which was interesting. Has she got bad news was my immediate thought and Taffy was maybe not up to delivering it? Not a bit of it. The news was that the hormone treatment was still in the body and was keeping the readings low but I should expect them to rise, perhaps as high as 2.0 in the future and there would be no panic until it went well into double figures.
So we were quite relieved and walked from the hospital to our favourite smorgasbord restaurant and had a good lunch although I was a bit peeved that the roast was beef and I am rigidly keeping to the No Dairy regime. Goat's cheese is good but I cannot get enthusiastic about Roquefort. I cannot but think they keep getting the buckets mixed up.
Anyway, we keep going for another six months still getting the hot flushes several times a night so the PSA readings are still skewed. And still falling asleep at the drop of a hat.
Last time, I made a remark about Goat's cheese being good. Let me modify this. Goat's cheese is good but not , for me at any rate, in the form of Goat's cheese Feta. This is a diabolic mixture of diesel fuel and a few scrapings of cheese. My good lady bought this for me as a treat. Her broken arm is mending well!
The PSA continued to give good results. In the six months from June 2009 to December 2009 it had risen only to 0.35. During this time, I started to find red scrapings on my toilet paper. After dismissing the thought that it was a crushed holly berry (it being around Christmas), I saw my GP who referred me to a General Surgeon. He did the inevitable DRE and had no sense of humour so I kept quiet which was quite difficult. He referred me on to a Colonoscopy Clinic. This was guarded by a Dragon Lady who tried to classify me as a Grade 1, 2 or 3 being degrees of seriousness. Grade 3 meant that they would not see me for a year. I asked her if she wanted to come to my funeral and she was quite nasty to me.
I cast around for an alternative and kept being recommended to this same clinic as being the best. I rang them again and Dragon Lady was on holiday and I was given an appointment quite quickly. It is a day procedure with full anaesthetic. This meant that herself had to drive me home. Very stressful. They took out at least two rectal polyps that were 'pre-cancerous', what ever that means and just cauterised any blood leaks. The cure was instant with no more blood at that time. They gave me a lovely photograph which I show people during lulls in conversation.
Reading all the literature, it was seen that a possible bleed was a side effect of EBRT and could happen in two years from the start of treatment. Mine was nearly exactly two years. I have had no other effects at all.
The next appointment was with what they laughingly call a registrar. This is a loose description of someone who is passing through and needs a cancer endorsement on their CV. This one could well have been a suicide bomber in disguise but she was very pleasant and I had a good five minutes consultation. The PSA had risen a little to 0.38 but there was no note of panic.
I then reopened the graphic files I had created earlier. In this file, I plot dates against PSA. I do not recommend this practice as it can give you the screaming jim-jams if you extrapolate the graph. This gave me an increment of 1.55 per year. This gives me a figure of PSA 10 in seven and a half years. The Headmistress had told me that no further treatment would be considered until the PSA was - and I quote - 'well into double figures'.
So I relaxed and carried on helping Averil with her voluntary Op-Shop tasks. Book acquisition via eBay and Amazon continued and the great tin library is now full of books. I bought a broken cuckoo clock which had no sound effects at all. I bought a new cuck and a new oo and a set of chains from M&P in Brighton and after a struggle, it now performs well and is being threatened with throttling.
I did not realise that the cheap old cuckoo clocks only ran for 12 to 18 hours unless you had 5 metre high rooms with the clock having long chains and hanging near the ceiling. So we put up with it. I did think about a triple pulley system but the load on the wall would have caused a large degree of destruction.
So we come to the next appointment. In September this year (2010).
This latest visit to the Oncologist was, from my point of view, a disaster. People like me that are
a) too old to be of much interest or
b) are post treatment
see, as I have already said, some sort of registrar which as I have already written, is a code name for someone from the colonies who is passing through, has no interest or experience and will never be seen again. This one, who appeared to be a left-over from the Bollywood female team at the Delhi Commonwealth Games, said that when my PSA reaches 5, I must start chemo. All this in 4 minutes after a 200km round trip on the train and the CatBus. The Headmistress had already told me 10 years, and when I pointed this out, our Commonwealth games star said she knew better. So next time I have put my name down to see the Headmistress and no one else.
So, again we wait and see, carry on buying books as I am not going to be beaten by the 'don't buy green apples because you will never see them ripen' attitude. I am tempted to take out a thirty year loan on something exotic like a sailing yacht but this would be tempting fate as Averil is not keen on sailing.
Oh, and the hot flushes are still going on.
What a strange year.
A new freeway was recently opened between Perth and Bunbury. This involved a major river crossing with a long single-span bridge. This needed many piles to be driven into the river bank. From memory (That's a laugh!) I think it was over 180 piles. This bridge is about one kilometre away as the cockatoo flies, so we could hear the pile driving quite well. It was just not intrusive.
All this was completed and the freeway was opened and is very useful and efficient. Perth from home 45 minutes and it used to be an hour and a quarter. After about a year, I heard the pile driving again. Oh Oh, I thought - warranty work. I then questioned Averil who said there was no noise at all. Instant panic, off to the GP who was away so we saw the locum who we knew. Let me listen he said. You have a heart murmur so off to the specialist for you.
Saw the specialist who was about as interested in me as if I'd been a newspaper blowing up the street. He did send me for an echocardiogram which confirmed the findings. The technician said - Don't bother with the Specialist but see you GP, but I recommend a dosage of road-rage every day to get your blood pressure back up. So come back in a year's time.
More of this later.
In the mean time, it was my six monthly appointment at the Royal Perth Radiation Oncology Clinic. My PSA level had stayed the same. This was quite exciting to me as I hoped it meant complete remission. When I went to RPH a few days later, the Registrar told me that it was a statistical glitch and a plateau and it would go on increasing in time. The Registrar was a very knowledgeable little lady who is going to be lost to Radiation Oncology as she was moving to Chemotherapy and hoping to make that her career. I asked her about chemo and she said that I would never have it. She said that I would probably be given more hormone treatment. She's going to go far - that girl!
In fact, I had two blood tests, the first for the Prostate and the second for the Cholesterol Clinic. The second one was 0.48 so close enough and probably due to ch…ol…te which sometimes invades my mouth!
So, on we went - pile driving steadily until this years echocardiogram. I found that the GP could refer me for this so I wouldn't have to go to the Cardiologist. This lad was a lot more serious and humourless. Basically the same result as last year but the news was that I had two leaves instead of three in my aortic valve. The GP then referred me to an 'interventionist' cardio man.
Just before this was the next six monthly RPH Oncology Clinic. PSA was up to 0.75 which is the statistical 1.5 factor increase which I had been having until the two 0.45s. The film star that saw me and said she was a Registrar proved to be the best yet. I had seen her previously in her learning days and was impressed then. I still haven't seen the Headmistress. I am now convinced that I am too old to be of any real medical interest and they just keep me on as a mascot.
However, they are saying no panic (my words) or no further treatment (their words) until double figures so I am happy. That's another seven years at this rate although the film star said she expected the rate of increase to ease off.
This is the end of November 2011 and I have just had my appointment with the cardio lad. He did a thorough examination and touched veins I didn't know I had. Anyway, the upshot is an angiogram in the next few weeks leading to openheart surgery for a new aortic valve. The GP said he was an interventionist! The interesting piece of information that seemed to sway the Cardiologist was that it could be eight years or more before I needed any more prostate treatment. In his mind, this seemed to make it worthwhile carrying on with aortic valve surgery.
So it's 'check the will' time again and then back to the RPH Oncology Clinic at the end of April 2012.
To carry on from where I left off, the April Oncologist came and went with the similar slight increase in the PSA;. Four minutes hello goodbye with a learner driver!
The Royal Perth Hospital Oncology unit is run under contract by Perth Radiation Oncology. They have recently changed the name to Genesis. Why I don't know but it doesn't seem appropriate.
However, just before all this, on March 22nd, the Cardiologist gave me an angiogram at Fremantle Hospital. He said this confirmed that all was in order for the big operation and an appointment would be made for the Big Chief Cardio-Vascular surgeon. The Cardiologist explained to me that they found out the problems and the Cardio-Vascular people fixed them.
The appointment with the Big Chief was made again at Fremantle Hospital for 15th May. After a somewhat wild conversation during which my diabetes was discussed, I eventually got a word in and said I had never had diabetes. Lots of staring at files, then they realised that they had two Russells with appointments that day and had picked up the wrong file! I also had a CT scan. During the interview, I was told that I would be done fairly quickly which would be in the first week or two in September. The Surgeon repeated what the Cardiologist had said that I was considered very fit for the operation as my prostate cancer was well under control and I had responded very well to the treatment.
So we went home and started to count the days and weeks to September.
Then on Friday, June 8th (24 days later) a phone call came from the Big Chief's Senior Registrar – Could I come in on Monday 11th – 3 days later as they had a cancellation (I believe that this is doctor talk for the planned patient died!). We said yes. I did a quick oil change on the car as it was obvious I couldn't do it post op and it was nearly due. As an aside, I always do my own oil changes as I do not trust mechanics to fill the oil filter before installation which, if done, ensures immediate oil pressure.
So, we (Averil and I) arrived at Fremantle packed for a six week cruise to Europe as apparently everyone does.
I had already bought a book called The Patient's Guide to Heart Valve Surgery by Adam Pick. I bought it via the internet from the States earlier in the year to prepare myself. So I was mentally ready. I cannot recommend this book too highly.
I was operated on the day I went into hospital but two days later when I re-surfaced, I was told there had been a little problem possibly with a nick but not to worry. So I didn't. They had fitted me with a bovine valve.
To cut a long story short, the outcome was that I had to be fitted with a Pacemaker so what was expected to be a six day stay turned into two and a half weeks. Averil visited every day including the day in ICU which I was not aware of until I saw the photographs. Fremantle is a horrible journey from North Yunderup with winding roads all the way full of trucks as it is an industrial coast near Fremantle. How Averil did it, I will never know but her arrival was the one event that kept me going.
Averil came with a friend of hers to take me home on discharge day as she didn't want to drive in case I needed help. At home, the relief was palpable and I really spent a lot of time in our new recliner chairs which was a web site recommendation for post operative recovery.
Prior to discharge, I had to so the stair test which is where very fit junior female dragon makes you walk down a chosen set of stairs and then they check the heart rate as you climb up. I could not see the point of this as they had excellent lifts in the hospital. This didn't go down well – no sense of humour.
So, I had to go back to Fremantle on the first of August when then said I was now officially discharged and they didn't want to see me again. In retrospect this makes sense as the Cardiologist now takes over again. I have had one subsequent meeting with him and they just tune up the Pacemaker.
Now, back to the real stuff.
My next appointment with the Genesis people (Perth Radiation Oncology) was my six monthly one and was on November 13th. To my surprise, I saw the Head Girl who greeted me warmly and said I was now discharged from her care as it was five years since treatment.
She said that I should have an annual PSA; test from my GP and report back to her when it got back to double figures. She said the rate of increase should slow down so it will be as near to 10 years as makes no different.
So here I am, a near bionic man (except for my willy!) with only GP care on the horizon.
The heart thing has made me very tired and I have to sleep for one or two hours in the day, otherwise I just cannot cope and make snappy decisions about the dog food or the washing up! Talking to others, this is normal.
I do have to see the Cardiologist every six to nine months for now to check up on the Pacemaker and to have an echo-cardiogram to see whether the new aortic valve is functioning properly.
My main medical interest now is watching medical television programmes in the hope of finding something that will help the others coming after me. Don't think I have square eyes because I dislike television and am very selective about what we watch.
My pet hate at the moment is Newspaper reports about 'so and so's battle with cancer'. It nearly always turns out to be Prostate Cancer which, from my contact with other patients, is controlled by cut, burn or poison. I am in contact with men who have had all three procedures (usually, not the same person having all three!). All my friends are satisfied with the treatments they have had with the exception of one particular person who was put onto 'watch and wait' and because of this policy and the subsequent belated medical treatment, I think he is going to be lost to us.
The heart keeps ticking on with regular six monthly checks-up. The pacemaker is tuned everytime by a small film star who is incredibly competent. My pacemaker is designed to prevent the heart from stopping and dropping below 60 beats a minute. There is no upper limit. I have been taking it fairly gently but I have now found out that I must exercise more and harder and going out to pick up the papers in the morning is not enough. Perhaps fixing up a shared line for two computers may have not been a good idea because Averil can now look up symptoms on her own computer and nag me. But it's all for the best.
I have another theory that these car drivers who the police say are looking in their laps to send text messages are in fact prostate cancer patients watching to see if there is any movement on their willies so that they can restart their sex lives! What a court case that would make including producing the evidence!
It looks like there will be at least another 8 to 10 years until my PSA; reaches double figures requiring some form of treatment but as I will be 90 then it will just be time for me to have another heart valve if mine fails at the minumum time span. I am confident that there will be more advanced prostate treatments available by then.
Russell's e-mail address is: firstname.lastname@example.org