Archive for the ‘radiation’ Category
This is the definitive document covering Greg Naylor’s time with prostate cancer. It is in the form of a draft book on the disease and how we, as sufferers, deal with the day to day ups and downs living with PCa. I hope it offers some insight to those just embarking on the rest of their lives with prostate cancer.
Title: I have never died before
TABLE OF CONTENTS
Chapter 1 – The moment of truth
“You have a stage D or IV prostate cancer with a Gleason score of 9. It has escaped the prostate and you have bone metastases in the pelvic girdle. It is terminal and too late for surgery, chemotherapy, or radiation. The only option is palliative hormone therapy to slow down the growth of the tumors.”
These were the words that introduced me to the insidious world of cancer. I asked the obvious question about the time I had left and was told it could be as little as 4 months or up to a couple of years.
So the next question was about a lesion on the kidney. The Urologist identified it as renal cancer but that it did not present an immediate threat as he felt the prostate cancer would take me before the renal cancer got out of control.
My younger brother, Stephen, had died of renal cancer in 1990 and here am I, expecting that the worst I was facing was the loss of a kidney due to some genetic problem, now being told that the game was over.
It am now in my fifth year since that diagnosis and I want to pass on what I have learned about the ignorance and confusion amongst the medical fraternity when it comes to metastatic prostate cancer where secondary cancers have formed before diagnosis.
I find it disturbing that no two General Practitioners seem to be able to agree about prostate cancer and, in fact, some will treat different patients with similar symptoms quite differently. Their task is the initial diagnosis and to refer on to the Urologist. Some do not and presume they can treat the cancer themselves. In dealing with every GP issue from birth to death, they can never be expected to gain the knowledge required to best advise their patients.
In my case, the GP referred me to the Urologist but continues to provide pain management medication and monitoring my general health and quality of life on a fortnightly basis. You need to build a good relationship with your local doctor (GP) so that s/he can offer advice when it is needed. The Urologist only sees you for 15 minutes every 3 – 6 months.
Similarly, the Urologist has a limited range of options. Beyond three monthly supervision and hormone therapy visits, the Urologist can only refer on to the Oncologist who deals with all kinds of cancer once it is beyond his capacity to help. There appears to be no such thing as a prostate cancer specialist.
All four accepted treatments for prostate cancer, surgery, chemotherapy, radiation and hormone therapy, are traumatically invasive and cause more problems than they successfully treat by deliberately destroying the immune system damaging the patients quality of life. I suspect more patients die from the effects of these treatments than from the cancer itself. It is my life they are dealing with and I have been determined to have a say in how I am treated.
There is a new emphasis on “Active Observation” where treatment is withheld and the patient’s progress is observed or monitored. Trials show there is no difference in long term outcomes.
However, active observation was not discussed at the time and, in my ignorance, I was left with the hormone treatment using Androgen Deprivation Treatment (ADT) as the only option. Four years on, I wonder if I would have been better off under active observation.
In 2008, I was an active man in my 60’s working five days a week in a vineyard walking up to 15 kilometres a day just doing my work. I have never had any real health issues although I had taken a couple of bad falls from a CFA fire truck and from a hammock.
I presented to the GP with lower back pain and typical urinary problems of a sixty year old. A digital rectal examination indicated an enlarged prostate that was referred for an ultrasound examination. Of itself, an enlarged prostate or urinary difficulty is not a big problem. However, they are precursors to prostate cancer and need to be investigated. The ultrasound measured the enlarged prostate but also found a lesion on the right kidney.
A full range of blood tests was carried out and showed my PSA reading to be over 800 when the normal range is between 0 and 4. My GP didn’t believe that reading stating that I should not be walking around with such a high count and he called for a repeat test. This one came in at 1300 just three weeks later. The GP then arranged a CT scan and sent me off to the Urologist who organised a nuclear bone scan which showed the secondary metastatic tumors throughout the pelvic girdle.
I was booked in for a TURP operation where, under a spinal anesthetic, the Urologist entered the prostate through the penis and removed everything he could find. Now, after 4 years, it would be expected that any remaining cancer cells would have been duplicating bringing finality that much closer.
Here, I learned my first lesson about doing your research before undergoing treatment of any kind. In the hospital, I shared a room with an 80 year old who had undergone the procedure before but now required it again. He advised that it was no big deal and that the biggest problem was that in entering the prostate, the surgeon damages the various valves that control the urine flow and the ejaculation of semen. This can lead to incontinence further down the track. The valve directing ejaculation is destroyed and it becomes a dry argument with the semen backfiring into the bladder. That is a strange sensation and one that the patient should be made aware of before the operation.
It was disappointing to learn about all this from a fellow patient rather than from my doctor. At the time, you are in a state of shock learning of your impending fate and it all seems so necessary that you can too easily accept what you are being advised without question.
The good news is that whilst I suffer ED (Erectile disfunction), I have had no signs of incontinance and I am peeing quite well, thank you! As I can still achieve an erection, that would indicate that the nerves have been saved.
The biopsy was conducted on the material removed identifying the particular cancer, it’s aggressiveness, the stage of development and the probable outcome.
The initial process of identifying the disease and starting a treatment regime took about a month. On the physical side, the time went quickly whilst on an emotional level it seemed a lifetime.
The nature of the beast
Short of a miracle, advanced prostate cancer is incurable. The best you can hope for is an ongoing state of remission where there is no tumor activity. Even then, you have to live with the damage that has been done to the affected area and any secondary cancers that may have developed. Once you are diagnosed, you will carry the disease and the fear of it getting out of control until you die. It is indeed a life changing experience.
The medical profession does not know why cancer develops. As I understand it, the body’s cells are programmed to perform their task and then die to be replaced by new cells. When something happens to cause a cell to mutate into cancer, it refuses to die and the replacement cells it generates are genetically programmed to repeat the action. As there are now more cells than are required, they simply take up space and form an active tumor that will ultimately overtake the available space and spread through the blood, bones or lymph glands to break out elsewhere in the body.
As a result, they can only treat the symptoms. From the patient’s perspective, the available treatments are both frightening and traumatic as the doctors try to shrink the tumors in an effort to extend your life. This is done by surgery to remove affected organs, chemotherapy to poison the tumor, radiation to burn the bejesus out of it, cryosurgery to freeze the tumour to death or hormone implants to reduce the tumors’ available food supply.
In my case, surgery could not be used to remove the bone metastases and the removal of the prostate would only lead to mechanical valves being required to urinate. Removal of the prostate gland is only carried out before the cancer spreads to other locations. Once the cancer has spread, the prostate is merely just another site with cancer. The bone damage was so extensive that it was more than chemotherapy could be useful for. Similarly with radiation, in trying to burn out the tumors, radiation would have destroyed some of my vital organs. Inquiries showed that neither chemotherapy nor radiation could add one extra day to my lifespan.
The only other treatment left was hormone therapy used to reduce the available testosterone which is the food supply of prostate cancer tumors. An easy decision to make!
It must be pointed out that hormone therapy will not kill a tumour or cure cancer. I have to believe that it has helped extend my life.
Over an 18 month period, the hormone implant therapy was successful in reducing my PSA reading from 1300 back to normal and I went into remission for about nine months. When the PSA began to rise, the hormone therapy was started again but, this time around it was not successful with my PSA continuing to rise after another six months treatment.
There are no further treatment options available except pain management until such time that the cancer takes me out – probably by the failure of one of the vital organ systems.
Facing one’s mortality
So much for the mechanics of the thing. The emotional roller coaster you get to ride, along with your family, is another thing.
You are told that you have a terminal disease. How are you supposed to react?
The mind goes into overdrive with all the different scenarios. What is cancer? How will I actually die? What about my family who have to live through this with me? What can I do to make this more acceptable?
Some people go into denial. I was not one of them. From the very beginning I tried to deal with the news in a rational, probably obsessive manner, learning everything I could about the disease and the treatment options. Thank God for the Internet and its instant research capabilities.
When my father died of prostate cancer, there was no internet or the ability to learn much about the disease. Patients of his time simply accepted their fate and followed their doctor’s advice – and died sooner than they appear to today.
I look back to his time with the knowledge I have now gained and question whether I should have tried to find this information on his behalf. Similarly, with my mother who died of multiple myeloma, a cancer that spreads through the bone marrow, I have the same question. At the time, it never entered my mind to even try. I guess we are so busy living our own lives, we simply leave it to our doctors.
I am grateful for the advance notice as I have been able to review my life, my beliefs and my relationships – something we should all do on a regular basis – but there is that ‘living our own lives’ problem that gets in the way again.
The way others handle the news is interesting. There are those who blindly tell you that you will beat this thing if you try and some, who frustrate me, who urge that a positive mental attitude is the only way to beat cancer. I defy anyone facing their mortality to remain positive. It is a fearful situation. A positive attitude without positive action is futile. It is simply delusional to be positive whilst the cancer is doing its thing.
I admire and aspire to the approach of those who do take positive action like Ian Gawler and Jim Stynes. Here are men who have analysed their options and made their choices. One can do no more than that.
For more than 40 years, I have been a social activist expressing my views first through the local and daily newspapers and, more recently, as a blogger on the Internet. Being of this ilk, I found it quite natural to discuss my cancer – the good, the bad and the ugly – with my regular readers. Through this process, I have built a network of people, most of whom I have never met, who have become my counselors through the feedback column of the blog. I am including many of these blog posts as they chronicle the range of emotions I have been through in facing my mortality.
There is an index to all the cancer posts online here. It can be accessed by clicking the “Full Chronicle of Prostate cancer Posts” entry, “Index of Greg’s Posts” in the right column.
Life is a game of chess – posted 14 April 2008
As you know, I am a senior citizen. I am 65 years old and have enjoyed a healthy life.
However, I have been having trouble with ‘The old mans disease’ – the prostate. As you do, I went to the doctor and unleashed a series of events that have left me very nervous.
First came the digital probe that found the prostate to be very enlarged. Then came the blood tests and the ultrasound that found a suspicious lesion on my right kidney. This was followed by a CT scan that has determined that the lesion is most likely cancerous and the kidney looks like it will have to be removed. The scan showed everything else to be normal.
This chain of events began a week before Easter and the nervousness comes from the delays we experience in remote areas where there are no resident doctors.
After the initial examination by the locum who visits Whitfield for half a day each week, it took more than a week to get the ultrasound. Then it was another week to get the results from the doctor on his next weekly call. Then another week to get the CT scan results and finally I have to wait another two weeks before I can see a specialist in Melbourne to progress the matter further.
It is enough to drive you insane. Without adequate information, one has to evaluate all the options between it not being too serious to being dead.
You know, life is a game of chess. You are born a pawn and work your way through the pieces making life’s decisions. The battles and tactics take their toll and you see the pieces fall around you. Have I entered the end game? I don’t think so but one has to be prepared.
Having survived friends and family who have died of cancer, I am very much the logical thinking fatalist – realist – and am prepared to face the consequences.
I will be heading to my specialist appointment tomorrow and expect to learn more then so don’t expect to see too many posts over the next couple of months.
It is reported that many men fear the rectal digital examination and the PSA blood test in case they find something wrong or maybe they are just to macho too undergo such an indignity. I was probably one of them as I remember some years ago asking my then doctor about having a PSA test. He talked me out of it telling me that it really doesn’t prove a thing except what the measurement is today.
Recent five year studies, in Australia, show that around 50% of men diagnosed with prostate cancer after taking a PSA test have been damaged more by the invasive treatments than by living with the prostate cancer which generally is a slow growing disease. There have also been many false positive results where there was no prostate cancer at all. Similar studies overseas confirm this view6 and indicate that treatment can often shorten the patients life.
There is a fifth treatment for prostate cancer known as “watchful waiting”. When diagnosed with the disease, time is not of the essence. Unless it is the final stages, it will be a slow developing cancer. In the US, watchful waiting is the standard treatment for men over 74 years of age as it is reckoned that they will die of natural causes before the prostate cancer takes them and that radical treatment will probably shorten their lives. This is becoming more common here too.
If I had taken that test back then, I am sure the PSA would not have been 800 with the cancer metastasing into my bones as it has now and that early treatment would have been possible. Not yet 70 with the cancer in its final stage, I am left with hormone therapy in an attempt to slow down the degenerative process.
The End Game … posted 16 April 2008
You prepare yourself for the worst and hope for the best … and then they tell you there is no hope. It’s not easy to accept!
In my case, the report from North East Health concluded that there was the likelihood of a cancer in the right kidney but that there were no other problems. They simply got it wrong … and that made it all the harder to accept. The reality is that this thing is beyond operation and the only treatment is with hormones to put the cancer into remission to be followed by palliative care. The ‘End Game’ has begun.
So, you take the news on board and the mind goes into overdrive. The remarkable thing is that you are more concerned about your loved ones being able to handle it rather than yourself. For you, it is all clear cut … you are here … you are going there … and all you need to know is how to comfortably make the journey.
On the way, I have to pass on what I have learned to those who are ready to hear it. I am not prepared to leave wishing I had told them how I feel and how I view life. It is indeed a big challenge.
Today was the first day of the rest of my life … and I would say it was the worst.
As the day progressed and family and friends phoned in, the emotional shock set in. You talk about it and you cry … you think about it and you well up again. It is just part of the deal that one has to come to terms with. I will be better equipped to handle it tomorrow.
I had my first visit with the Urologist the day before writing this post. It had been a couple of weeks since being pre-diagnosed by my GP and sent off for the ultrasound and a CT scan, the only news we had was about a suspect kidney lesion. By the time I first met the Urologist, he had the relevant test results and didn’t even need to see me to be able to tell me that I had terminal cancer. He programmed a nuclear bone scan and the TURP procedure from which he carried out a biopsy to confirm his diagnosis.
The proposed treatment – posted 18 April 2008
Today it was about the nuts and bolts of what is about to happen.
With Monday’s bone scan, they inject some dye into me and a few hours later, they do the scan. Then I can go and spend the night with the family.
On Tuesday, they ream out the prostate under a spinal anesthetic where you are awake throughout the procedure finishing up with a catheter insertion. Now that sounds like a real thrill.
I remain in hospital for three or four days and then they send me back to the Melbourne branch of the family for a few more days until they are satisfied that the urinal bleeding is under control and then I can come back to the King Valley to piss blood for the next three or four weeks. Sound exciting?
Before I come home, I get to find out the result of the bone scan and my expected longevity. I will also be seeking the expected schedule of the degradation process of my health over my remaining lifespan. Now, that one is really going to go down well.
I looked up the hormone implants they are proposing and found that they destroy the production of testosterone upon which the cancer cells feed. Of course they use the female hormone, estrogen, which has side effects in most cases such as loss of libido, impotency, softening of the body hair and growing boobs. That’s right, as if having the cancer isn’t enough, they are turning me into a bloody woman. They say you even think differently! I’ll let you know if I start wearing makeup!
I reckon that fits the Church’s definition of purgatory .
I was much improved on the emotional side today with only one major outburst over my Centrelink application for the aged pension. They have approved a pension for my wife Pauline, but have temporarily knocked me back until they eventually get around to sending a valuer to value our ten acre home site yet they are working off the same documentation for both of us. I got so pissed off and broke down into a blubbering mess once again. I mean, I am the one having the surgery and they won’t even issue me with a Health Card.
It wasn’t all that bad … posted 27 April 2008
Thanks for your well wishes last week.
Last Monday saw a series of tests that confirmed the secondary cancer diagnosis followed by the prostate cleanout operation on Tuesday afternoon. I was off the drip on Wednesday morning and the catheter was removed on Thursday morning.
I left the Mercy Private Hospital on Friday morning, stayed over at a friend’s place and arrived back in the KingValley on Saturday afternoon. It is so good to be home.
The TURP (rebore) operation turned out to be a piece of cake. Done under a spinal anesthetic, it is off-putting to have the procedure carried out whilst you are still (semi) conscious. Some years back, I had some teeth removed under a general anesthetic and that knocked me around more than this operation.
I want to reassure others who may eventually need this procedure that it is no big deal. Of course there is the discomfort of the catheter and the eventual passing of water, but physically you are fine.
We are now awaiting the result of the biopsy of the matter removed and have to wait til Monday week to get the final verdict to be able to plan The End Game.
I find a need to ‘project plan’ the ride of my life establishing the milestones and the available options. Only when that job is complete, can I start living again.
The most promising news is that they have started me on the girly pills (hormone therapy) and I have been told they have an effective life of about two years. The side effects are kicking in with tiredness, disturbed sleep, excessive farting and a flushed feeling around the ears. Once they establish I can cope with the treatment, they will change over to injections applied every couple of months.
Chapter 2 – What the doctor ordered
The philosophy of hormone therapy
Hormone therapy is not a cure. The objective is to starve new cancer cells of their food being testosterone. In doing so, it slows down the development of new tumor growth. Success of the treatment is measured by the drop in the PSA reading and should it return to the normal range (0-4), remission is declared.
These are synthetic female hormones that dramatically reduce the male sex hormones producing a complete chemical castration. Whilst it is claimed that the process is reversible, I have yet to meet another man who has undergone the therapy where this is so. Not that it is so important when you are 65 years old and you are facing a death sentence, but these things should not be hidden the way they are.
The process begins with a drug called Cyproterone Acetate under the trade name Androcur. These, I referred to as my girly pills. At the time, I joked that they tasted nothing like the female hormones I had been exposed to before.
Androcur aggravates prostate cancer and causes the tumors to become more aggressive before they cut in to do their work and it is a precursor to the use of the Zoladex implant which is commenced some weeks later.
Both of these hormone drugs have had very bad side effects which affect many men yet the doctors claim to be unaware of the fact. Return to Table of contents
Androcur – the pedophile drug … Cyproterone Acetate10
This drug is prescribed for sexual deviates who practice bestiality and pedophilia. I am led to believe that every non prostate cancer patient, male or female, who is prescribed this drug is automatically and permanently added to the sex offenders registry. You may have seen a young man on television from the Exclusive Brethren who had been prescribed cyproterone acetate by the church elders to manage psychological/sexual orientation problems only to find himself on the register. You can imagine what this does for your sexuality.
Most prostate cancers need supplies of the male hormone testosterone to grow. Testosterone is produced by the testes and adrenal glands. On the surface of prostate cancer cells are proteins called receptors. The drug has a structure similar to testosterone. It attaches itself to the receptors on the surface of the prostate cancer cells, which prevents the attachment of testosterone. Without testosterone, the cancer cells either grow more slowly or stop growing altogether.13 Without testosterone, there is no male sexual functionality either.
Taking this drug began the degradation of my quality of life. Androcur (Cyprostat) initially aggravates the tumors which react by growing faster and causing pain. That starts the progression to opiate pain killers which need to keep getting stronger to be able to cope with the pain. I was in so much distress that I couldn’t post a Blog for a month. Return to Table of contents
Back from the brink… posted 2 June 2008 …14
It has been the best part of a month since I last posted and that is because I have been in ‘medical purgatory’ over that period.
Back then, I was on my ‘girly pills’ targeting the production of testosterone that the prostate cancer feeds on and that aggravated the bone cancer.
To manage the pain, I was prescribed morphine based tablets. Whilst they sort of removed me from the pain, the side effects were horrendous. They made me sleep throughout the day and destroyed my concentration – I couldn’t even take in a news headline – and they clogged me up with constipation.
My pain management was out of control so I pulled the plug on all medication to try and identify what was happening. I was prepared to accept some pain and feel alive rather than mask it and feel the way I did under the morphine.
The immediate reaction was withdrawal symptoms of waking up with the trembles and being a teary, emotional wreck. I soon found out that I was having two serious pain events each day – around 4 am and 4 pm. The medication was changed and things began to improve.
Three weeks ago, I rocked up to the doctor to have the first hormone implant to replace the girly pills. This is actually a chemical castration. The doctor said that she hadn’t been there before and I duly informed her that I hadn’t either. So I told her we were going nowhere until she had read the instructions and understood what she was doing.
After doing her homework, she unpacked the implant to expose a 17 gauge hypodermic needle – that is as thick as a kebab wooden skewer and bigger than we use on the cattle. After insisting on a local anesthetic, and checking that she felt up to speed on the procedure, I told her to pretend she was the doctor and I was the patient and then we went for it.
That implant hit in last Monday night when, for a couple of days I lost control of my body temperature and my appetite dramatically improved.
With the pain management now happening and the hormone implant shrinking up the gonads, I am starting to believe that remission from the cancer might be just possible.
The fact is I have been able to write this post and, let me tell you, I have not been in a position to do that before.
Zoladex – the Demon Drug … Goserelin acetate
This must have been developed by Satan himself. In 85% of cases, it will lower the testosterone level and in many cases bring the prostate cancer patient into remission. It did all that for me but at what price.
The Xoladex hits in after about three weeks and you really find out that dramatic changes are going on in your body. One of the first side effects was hot flushes that reoccur throughout the day to the extent that I had to strip to the waist to get relief. So obviously, all my post menopausal women friends kept harping on about, “Now you know what we women go through”.
Soon, I noticed that I was growing A cup boobs that any 12 year old girl would be proud of. Along with that, my gonads began to disappear being withdrawn up into my stomach. I noticed that I didn’t have to shave every day and that once a week soon became the norm. The hairs on my head become softer and finer. As a matter of course, I became impotent as I was being hormonally destroyed as a man as the synthetic female hormones became dominant.
As time passed, the side effects of the hormone therapy along with the pain management regime became more intense. Extreme vomiting every night was a burden as was the loss of stamina and energy. I was not able to move a barrow load of wood fifty metres to the house without stopping for a couple of breaks.
Things became so bad that after the first three implants, I reneged and took a ‘hormone holiday’ before starting the process again. This practice allows men to recover their vitality, libido and motivation – all the things bestowed by testosterone, which are lost when the injections knock it out – without in any way diminishing their life expectancy. Whilst the implant is usually effective for about two years, six months on and three months off will provide a much better ‘quality of life for the prostate cancer patient.
It eventually became apparent that the continuing deterioration of “quality of life” was more attributable to the treatment rather than to the disease. This was ultimately verified when, upon going into remission, I was detoxed from the morphine pain medications using Ketamine where all pain and side effects eventually vanished.
Proposals to chemically castrate sex offenders are an offence to human dignity. Apart from becoming impotent, the side effects of these drugs are inhumane and akin to torture – a punishment that society must never be allowed to implement. If we must go down that path then let it be surgical castration which, although it does have some side effects, does not turn a man into a non-functional being as Androcur and Zoladex do.
This abomination of a treatment is being sadly overused. When I became hormone resistant, my Urologist suggested I keep using the implant. I asked, if it was no longer working, why I should continue with it. He had to admit that his profession has no real reason other than that it is all they have to offer and they cannot be seen to be withholding treatment from the patient. I am not alone; I have met others who have been prescribed Zoladex up to 10 years later even after having their prostate removed. At $1,100 a dose, this is surely an abuse of the PBS system as well as inflicting the side effects on these unsuspecting men. Return to Table of contents
Dying really sucks … posted 6 June 2008 …15
“It’s sad when you become a bit player in the story of your life” … Lisa Minelli
Today I am totally depressed … I am sad … and I am angry!
A couple of days ago, I was excited that remission might be possible. Today, I question “is it really worth it?”. At the other end of remission, they are going to tell me they have done all they can and I will soon be gone. That is simply delaying the inevitable.
I have an indeterminate number of days left and all I am doing is wasting them on other people. I came home from hospital and my local doctor went on holidays for a month leaving me in a medical vacuum. I need so much to discuss things with him but I am still waiting.
I made contact with Palliative care some weeks ago and they called with their pain management physician who attended to my pain management. They were to come back the following week to explain their services to me but that has been deferred until next Wednesday. There is so much I need to learn about the dying process and what support I can get for Pauline.
If living in a vacuum of information is called ‘quality of life’ … who needs it. Dying really, really sucks!
This post brought about the following comment:-
- Mate, just going on the volume you have written you must be feeling better physically at least. Have a couple of snorts for me there mate, I can’t touch the stuff.
I know it’s not an easy decision but maybe you need to decide if you are going to take this cancer business on or “negotiate a terms of settlement”.
If you choose to fight it, all the time spent in the doctors offices (and waiting rooms)is an investment and if you go for option two it’s a waste. In that case you need to streamline your treatment.
Decide what makes you more comfortable and focus on that. Piss everything else off in other words.
Make sure you talk to your family about which way you want to go though. It effects them too.
That’s a breathtaking proposition and I decided to give it serious thought. The problem is the instability. One day you go one way – the next the other.
However, it did get me thinking of the bigger picture at the emotional and spiritual level rather than just the physical and medical levels that I had been concentrating on. Return to Table of contents
Chapter 3 – The bigger Picture
The family rallies around …posted 9 June 2008 …16
Over the last four weeks, the family has progressively visited us every weekend with the odd visit during the week. It has been the greatest opportunity to sit down with each one of them and discuss the state of play and to discuss thoughts and philosophies with them all. It was very revealing to us all but it has also been very wearing.
There are seven grandchildren ranging from one through fourteen years old. The oldest is the only one ready to sit down and discuss things with … and I fully intend to do that with him. I feel a bit cheated that I cannot do that with all the others.
They are all so different and I know I could offer relevant advice to each of them if only I had the chance. Consequently, I am hoping to be able to write a few words to each of them telling them how I feel about them and how I remembered them. It would be nice to think they would read it when they are ready.
I am really grateful that this cancer has left me physically and mentally intact for the time being giving me some time to work through all the issues associated with dying.
Apart from dealing with family, one has to challenge one’s spirituality to find out what one truly believes. You have to confront the concept of existence beyond death. You have to review your life searching for regrets … of which I have found bugger all and you have to work with your partner who has to come out of it in the one piece at the other end.
I thank my God for the love and caring of Pauline, my wife, and of our family and their kids.
This follows an earlier Blog post that was a departure from the mechanics of what was happening in my body to what had been happening in my mind. I am not one prone to remembering dreams but what you are about to read has helped define my spirituality and a faith in the afterlife which I had never before really bothered with. It was written within days of being diagnosed. Return to Table of contents
On the other side … posted 17 April 2008
You are going to have trouble with this post. You will either dismiss me as a nutter or you are going to be disturbed.
I first faced my mortality in 1960 when my 24 year old brother died whilst water skiing. In March of the following year, the girl I was looking to get engaged to died of a tumor on the brain. That was a lot to handle for an 18 year old.
I cannot recall the following year as I was recovering from the trauma of it all. But when I did, I began the rest of my life as a ‘realist’ learning to accept and take advantage of what life has to offer. I began my search for the meaning of life which took me nearly 40 years to figure out. (I may discuss that in a future post.)
Raised a Catholic, I believed that we are born with the capacity of ‘free choice’. Consequently, I have steadfastly refused to accept the paranormal, astrology, clairvoyants and all that stuff because if they are for real and our lives are pre-determined, we cannot have ‘free choice’. At the same time, I have been scared sh*tless with how close to the truth some of these people have been.
My first wife, and the mother of my three children, is completely into this stuff and believes she has ‘the power’. I think it is a load of crap!
Now, whilst I know it could not have happened – and I know I never dreamed about it – I am here to tell you that I have had conversations with my dead brother in the intervening 40+ years. I have no explanation. I just know it!
Even weirder, over the last couple of years, I have been haunted by repeated dreams involving Cheryl – the girl who died in 1961 – where she has appeared and told me that it was time to go with her or themes along those lines.
About a year ago, It got to me and I tried to recall that era and that girl. I searched the web for stuff about 1960 including the music of the day to try and understand why this was happening. I even discussed it with my ex-wife, the spiritualist, and my daughter to no avail.
Now, I am facing my mortality head on and this comes flooding back to me. These dreams happened BEFORE I was diagnosed with Prostate Cancer.
Is it a sign from the afterlife – or is it that my mind knew this cancer was developing in me back then and has concocted the scenario trying to rationalise the reality?
This last post started my delving into the afterlife, questioning my belief systems and reviewing my life. It led to some remarkable discoveries about the person I am and how I would face the rest of my life. In its chronological order, I will return to this post to explain the ramifications of these dreams.
In June 2008, I had another dream involving the family of Cheryl, the girlfriend who died in 1961. It haunted me as it dealt with her family and not the girl itself. I posted about it on my Blog hoping to get some kind of interpretation. I realised that my family and friends could not help unless they knew the significance of this young lady on my whole life. So I posted the following:- Return to Table of contents
I have found the answer… posted 19 June 2008 …18
I have never told this story in its entirety and I tell it now deliberately that my family and friends may better understand the significance of Cheryl Byrnes in my life.
Cheryl was my first date, and I was Cheryl’s. We met in the late 1950’s and gravitated towards each other over the next two years. By 1960, we were a couple of teenagers ‘going together’.
In December, 1960, Cheryl was operated on for a tumor on the brain. Upon her return from the hospital, I was summoned to a meeting with Cheryl’s parents who told me that she was not expected to live for more than six months.
They told me that they wanted her to enjoy her final months and asked if I would help her do that.
Cheryl’s parents had already cleared this with my parents and, with their full support, I gave up my job in the family butcher shop to be Cheryl’s constant companion. Every morning, whilst she was recovering from surgery and chemotherapy, I was at her bedside by 8.00 am and stayed with her until tea time when I went home. She never tired of my presence and we lived the experience together. We became very close to each other.
Her mother, Elise, gave us total freedom leaving us alone throughout the day except for bringing us food and drinks at designated times. Even with that freedom, we both respected the moral code of the day and kept ourselves (reasonably) nice.
Soon Cheryl went into remission and we were able to do things and go places … and we did that with a passion.
They never told that girl her true condition but I know she felt it as she confided, “… with all this attention, it may be that I am going to die”. It certainly didn’t stop her from looking to the future and wanting us to become engaged. Our relationship had grown to be one of pure joy and continuity.
I was there the day remission ended, just four months later, as Cheryl went into a coma whilst I sat with her on her bed. Within two days it was all over.
Cheryl was the first love of my life and she was gone at two months off sixteen.
As I have previously written, I was disturbed when, after forty five years and having led a full life raising a family, Cheryl invaded my dreams about four times with the same message … that it was time to meet again.
That was more than a year before being diagnosed with bone cancer. Now, having related (and relived) this story with you, I choose to accept her re-appearance in my life as the ‘real deal’.
I now understand that, as I was there with her, the essence of Cheryl will stay with me now.
There is no doubt in my mind that I have a spiritual connection with Cheryl and her spirit will remain here until the last of her loved ones is gone and there is no one left to remember her. Isn’t that the way with all those who have gone before us?.
That she repeatedly came to me in my dreams before being diagnosed with cancer telling me it was time to go with her has had a powerful influence on the need to explore my spirituality.
In March 2010, I had another experience where, during my sleep, I believe I was transported to the afterlife and met with Cheryl. In the final chapter of this book, this story is expanded on in an article titled, “Cheryl, as I remember her”.
Out of this, I have developed a belief system in the afterlife that lets me face my eventual death without fear or trepidation because she wants us to be together. I know because she told me so.
Discovering my spirituality was also about questioning my belief systems that I had developed over a lifetime. I needed to know if they were valid so I wrote a massive post exploring my life’s philosophies and religious beliefs. Those who read the following post should get a better understanding of how I discovered the meaning of life Return to Table of contents
The apple never falls far from the tree … 28 June 2008
NOTE:This is the real heavy stuff. You’re gonna need a cup of coffee or something stronger if you are to get to the end of this massive post. It is an attempt to explain my interpretation of life, spirituality and God.
They say the most formative years of your life occur before the age of five. And, no doubt, it was the family and religious grounding I received then that saw me through the Cheryl drama. But just a few months prior to that, my older brother, Neville, aged twenty four had died in a water skiing accident.
Having had just two months to come to terms with the loss of my brother, I grasped the opportunity to share Cheryl’s last months, discard teenage bravado and live the reality of my feelings. I had just lost the opportunity to be as close to my brother as I could have been and it was not about to happen again.
What followed was every bit as formative for my adult life as the first five years had been for my youth.
In the aftermath of that duel tragedy, I spent a lonely year trying to cope with it all. You cannot understand why this should be, your religious faith is challenged, you query the concept of God and you wonder why we are here in the first place. I remember little or nothing of that period but I came out of it with an obsession to find some answers to these age old questions.
I could not accept that all that Neville and Cheryl had been could simply dissipate. Their souls – their essence – their spirit had to be somewhere. I know that it dwells in me and, no doubt, in their immediate families at the very least. But, when we have gone, their spirits will leave as those who follow will never have been touched by them … there has to be more than that! The question remained, where does the spirit/soul go then?
The first question, ‘Does God exist’ was self evident to a logical mind. Either there is a God or there is not. If there is not, nothing else matters and we will never find out. The need to ask the question is in itself the answer that there must be a God. The emotional journey of losing loved ones is the key to wanting to know. Until we take that journey, I don’t think we can appreciate the concept of being. Having taken that journey, I do not know how to deny the existence of God. Therefore the spirit of those before us must return to the source of life.
But what about Heaven and Hell? My religious faith was certainly in question. Having been Christened and raised in the Catholic religion and educated by the Christian Brothers under the reign of Pope Pius XII, I found myself in conflict with the Church on many issues from the downright absurd to the ultimate hypocrisy. For example, the church insists that God gave me free will but the church itself lays down the rules that I must obey. Archbishop Mannix directed, through the pulpit, who Catholics should vote for and it turns out the church decree on sex being for the sole purpose of procreation was not heard by those that taught us.
I never did come to terms with the concept of organised religion. How can so may faiths claim to be the only path to God? Having said that, my children were Christened and educated in the Catholic system to give them the Christian standards that successfully carried me to adulthood. To answer this question, I needed more information and would have to dig a lot deeper.
So, I embarked on the quest to find ‘the purpose of life’. If there is such a purpose, it must be equally applicable to every last person – the rich and the poor, the oppressed and the oppressor, to people of all faiths and non-believers too – and to me as well. It may have taken me forty years but I did find such a common denominator and that opened the door to identifying my God.
We are born into this world with a clean slate and we learn from our upbringing. The wisdom of the ages has concluded we need to be taught the rule of law, ethics and religion. These things are not inherent in our makeup. Without them, we are destined to a life of evil and basic instincts.
We learn our parents concepts of law, ethics and religion and as we grow up, we question their beliefs and form our own set of standards which we then pass on to our children.
There is an old saying, “The apple never falls far from the tree” and it is used to highlight the similarities between the actions of family members of different generations, particularly when things go badly for them. The bible also refers to the sins of the father affecting subsequent generations. The connection between generations is the key.
How often have you said or done something that reminded you of your parents. Well, as you get older, it gets worse until, one day, you look in the mirror and say ‘Hello dad / mum’. You ultimately realise that you are an extension of their being and your role of your soul is to stretch their envelope and experience your own existence.
The full force of this idea hit home some years ago when my son, then in his mid thirties, and I were having a deep and meaningful conversation. He remarked, “You know dad, the older you get, the more you think like me”. That startled me!
I suggested to David that maybe the way he thinks might be influenced by to the ideas and the family culture that had nurtured him. Whilst he may be taking those concepts far beyond where we had been prepared to go, the truth is that the older my son becomes, the more he is able to extend the barriers of his lineage to create his own existence.
That is the only common denominator I have ever found that is “… equally applicable to every last person – the rich and the poor, the oppressed and the oppressor, to people of all faiths and non-believers too – and to me as well.”
From that I conclude that we are here on a search for a greater truth than our parents could find. We are here as students of a God that is not omnipotent but, in fact a growing being. My free will and and the will of an omnipotent God cannot co-exist unless I am part of that God. Therefore, my life’s work is to experience what I am able to and take that knowledge back to the source.
Let’s look at the last few generations of the Naylor Family..
The first we know is of a family of children being shipped to the colonies of America, Canada, New Zealand and Australia around 1850. There were no parents for any of these children. We do not know what happened to them or the lives that these children created. What we do know is that Samual begat Patrick who begat Ray who begat Greg.
We also know that Pat’s young wife was killed in suspicious circumstances and that Ray and his siblings grew up without a mother. Is it any wonder that I grew up in a family that chose to remain independent of it’s extended self. Emotion was completely repressed or suppressed and we only got to meet the extended families at weddings and funerals.
Now, whilst we have little detail of those generations it can be seen that the concepts of ‘the apple never falls far from the tree’ and that ‘the sins of the father …’ can be applied.
This does not cast any aspersions on my parents. They, like all those that have followed, have been the best parents they could be and I am grateful for the rigid standards that I was subject to and the opportunity to finish secondary education … a luxury closed off to both my mother and my father.
What I can tell you is how my generation stretched the envelope of the Naylor family in learning to break the mould. The stand out similarity of the Naylors I have known was their willingness to commitment in marriage seeking a stronger family bond than previous generations had achieved . Mum and Dad were first daters, as were Neville and Mary – Greg with Maureen,, Stephen with Joan, Lisa with Richard and Anthea with Andy. David has been the exception that contradicts the rule. But then, that is David. He has been the one being in the family to really test the limits – or maybe he is refusing to accept any limits. That is his life’s choice.
Dad had a lousy upbringing with his mother being murdered when he was about 10 years old, and with a mean spirited father who left his kids to be raised by dad’s older sister Lorna. Dad left home at 14 to live and work with a family of butchers in Fern Tree Gully. He married mum, and adopting her family’s ethics and religion created his own identity. He raised us within a rigid framework which we each challenged in our own way to create our own identities.
Neville, my elder brother married his first girlfriend at the age of 21. Mary was from a family of 12 children and Nev appreciated his acceptance into such an extended family. Neville and Mary had two sons, the second born stillborn. Neville was the most devout Catholic in the family and told me he had achieved his life’s work in saving another soul – that of his stillborn son Michael after having him baptised into the faith. Soon after, he died in a boating accident. He was twenty four years old.
Stephen, my younger brother, had it so different to Neville or I. He was about 13 when Neville died. Back in 1960, there were no such things as counselling services. He was left to his own resources. He didn’t even have access to me as I had my teenage friends and was involved in Cheryl’s life.
At St Kevins, we later found that Stephen came in contact with the deviate behavior of the Christian Brothers. It caused so much trouble that, in spite of mum being the president of the college’s ladies auxiliary, Stephen was asked to leave. He was a displaced soul. As he grew older and joined us in the butcher shop, he began seeing Joan Hollis, the daughter of one of dad’s friends.
Joan was a girl born with a hair lip and, at the time, dad thought it was pretty special that Stephen never let that get in the way. However when the relationship got serious, dad turned on Stephen and would not approve of the marriage because, “No grandchild of mine will be a spastic!”. That pitted the wills of the father and son and the outcome was doomed. Dad refused to attend Stephen’s wedding. I recall Stephen being so confused earlier on asking me whether he should get engaged or buy a sports car. I told him to buy the sports car. He didn’t hear me. The marriage broke down and the two children, Corey and Simone were raised by their mother. Stephen later married Lola who already had a daughter, Sarah, and fathered another son Adam. His life’s path was a sad one and he died of cancer aged 42.
And then there is my own experience. In 1965, I married Maureen one of six children of an Irish/Catholic family. The Morrissey family was the antithesis of the Naylor family. Where the extended family of the Naylors was remote, the Morrissey clan was in daily communication to the degree that little mattered in the world outside the family.
This turned out to be an ideal environment to raise our three children giving them access to a broader view of the wider world together with the intimacies of family that neither Maureen nor I had ever experienced and helps explain the diversity in the natures of David, Lisa and Anthea. They have created three distinct realities or directions that will expose them to experiences that I could not yet imagine.
Of my generation, I have been given the greatest opportunity to experience life, to define myself and complete my life’s work.
And, now, to the final question of life … Is there anything beyond death?
Like the question of a God, logic demands that there is either something beyond death or there is not. Similarly, if there is not, we will never find out.
It seems that there are as many concepts that it does exist as there are people to ask the question. These range from being with loved ones, through eternal bliss through to reincarnation. Is there an ever growing universe of disappointed souls or could it be that they are all correct?
Consider my proposition that I am part of my God and that you are too. This is supported by the Christian faiths who commit a person’s soul to ‘live and reign with God’ at funeral services. If we have the power to reign with God, then we have the power to create our own individual ‘heaven’. In that context, whatever is envisaged as ‘life after death’ will be for you.
Earlier I mentioned the problem I had with all organised religions and their claims. If my proposition holds true that we are a part of the God being, then followers of all those religions must also be right.
My primary focus beyond death is to share with God the progressive evolution of the source of all creation. That does not preclude that, at some point, I may chose to be with those dear to me because, ‘reigning with God’ means that I will have that option. That is the ultimate exercising of the free will bestowed upon me by God.
I am at peace with my God on these matters at this time. Return to Table of contents
Chapter 4 – Dying as a career
Edward Kennedy, in the eulogy for his brother Robert, said, “It matters not whether someone is dead or alive, it is how you handle it that is important”. I have applied the same principle in dealing with how I handle the fact that I have a terminal disease.
As the title of the book states, I have never died before and I don’t know where to get a certificate of competency. It seems that my reaction was somewhat out of the norm as I felt an overwhelming need to ‘project plan’ the rest of my life and have made a career of learning all I can about the disease, its progression, its treatment and the dying process itself. I will probably finish up the best qualified corpse in the cemetery – a dubious distinction indeed.
In confronting my situation, I was able to avoid the state of denial that many go through together with the ‘why me’ syndrome. I simply knuckled down to the research task ahead of me so that I could make some informed choices.
Whilst I am certain that this was the right thing for me, I have not done the right thing by Pauline, my wife and carer. As she has had to face the inevitability of my disease in her own time and way, I fear I have damaged our relationship as she was not yet ready to embrace this new career of mine. I am sure she feels it is an obsession and she is probably right. However, a limited comfortable life is what I am facing. I know where I am heading and all I need is to find is the most comfortable path to take whilst dealing adequately with my loved ones. Nothing much else matters. Return to Table of contents
Front Page Story
As previously mentioned, I had been a social activist through my blogging and I was contacted by Brad Worral, senior reporter of the Border Mail, the Albury regional daily newspaper. As part of his daily research, he keeps track of local blogs like mine on the lookout for local news items.
It seems he had been following my prostate cancer blogging and thought there may be a story there for his newspaper and asked if I would be interested. As I had already gone public through the Internet, I had no difficulty in that and so he came to interview me about my cancer journey.
After the interview I was rather apprehensive as it is a rare situation where a newspaper reports accurately without adding its own spin. I needn’t have been concerned as, the night before publication, the editor phoned and read the complete article to me to make sure I was satisfied with Brad’s reporting. The only thing I objected to was the headline they wanted to use ‘I’m dying.com’. I felt that was a bit sensational so they settled for ‘My fight.com’. The following article is a tribute to good journalism and the fine man who wrote it.
Date with destiny on the internet … by Brad Worrall
Greg Naylor is dying and he is not afraid to tell the world. In a small home along a dirt road in the upper KingValley, he is chronicling his battle with terminal cancer on his website,
Prostate cancer, first diagnosed at Easter, has spread through his body a bone scan showing hotspots from his head to his legs. The prognosis is not good.
Doctors tell him they have caught the cancer late. It has already developed into a secondary, aggressive bone cancer. A needle the size of a kebab skewer delivers hormone therapy that may prolong the inevitable.
Concern in his head and neck have the potential to cause paralysis. Already, he wakes at night, saturated in sweat, from what is known as breakthrough pain. Mr. Naylor says it is like nothing on Earth.
The grandfather of seven has already decided he wants to die in the room where his computer work station sits. The self-confessed computer geek says it’s where he can see the world go by.
However, for many on the web none of this is new. The 66-year-old has been running regular updates of his illness on his King Valley Watchdog website. Mr. Naylor’s site gets about 100 to 200 hits a day. International websites have also picked up on the story. Mr. Naylor says it is cathartic and vows to continue Blogging until the end. “It doesn’t bother me that people read it, it is just my thought processes,” he said.
“I’m a confrontationist, I tackle things head-on, it’s the way I am.
“And I did it partly for the kids – they live in Melbourne and we don’t get together very often.
“So part was about keeping them updated with where I was on the travel — whether I was doing it bad, doing it good.”
Mr. Naylor said the blog evolved rather than being planned.
“I don’t know that I set out to tell the world about this,” he said.
“I’m a blogger and run a blog and started documenting the thing from the start when I didn’t know the full extent of the problem.
“But now I draw strength from the people that respond – it is amazing.
“The emotional strain (during the illness) is you don’t know whether you are going crazy, exaggerating, putting false perspectives on stuff.
“But the feedback from others, mostly strangers, has really helped.
“Still I’m not putting anything on there that will upset the family.” Return to Table of contents
Blog lights up last days … By Brad Worrall
ON a 4ha property at Whitfield, geese are honking in the yard, a cow is calving in a paddock, only the fruit trees in the orchard are bare.
A wood heater glows in the corner of the living room.
Suddenly the lights go out. “Don’t worry that is pretty standard up here, the power will be back in a few minutes,” Greg Naylor said.
It is not the first dark moment for Mr. Naylor.
From his KingValley home he has been chronicling a battle with cancer on a blog for the past three months.
But for most of May, pain and uncertainty saw his website idle. The father of three and now granddad of six boys and a girl says it was his darkest moment.
“But I don’t see it that way, it was an event that I travelled through and put on the website when I was ready,” he said.
“At the time I didn’t know where I was headed, what was in store. “But when I sat down to write again it came so easily, it was raw and personal and yet it helped. “It touched others and the feedback has helped my battle.”
But the personalised approach to his mortality is not embraced by all.
His wife is supportive but doesn’t want to be part of the story, she is less than comfortable with the publicity.
Daughter Anthea Naylor has reservations too but said it had been a great source of inspiration.
“It has been good for Dad to sort out his thoughts and what he is going through,” she said.
“It is not stuff that we all knew, new stories are coming back and that is a beautiful thing for us.” His son, David, a Melbourne-based comedian, says it has been a journey for the whole family.
“It has been good because he has been unpacking his history as well,” he said.
“It’s good for us to learn that stuff too.”
Mr. Naylor said that the blog and medical treatment had stretched time.
“It has only been three months, but what I have done in three months is just amazing – time seems to stand still,” he said
“While I don’t have an absolute number of days left they are all going to be big ones.
“All I can do is face it head on and I’m fortunate that I have the sense of the ridiculous, that I can laugh at it, and really fortunate that I have a family that wants to be part of it.” Return to Table of contents
Australian Health System
You don’t have to look too far to be able to criticise the national health system in Australia. However, in the 2+ years of my cancer journey, I can assure you that the system has never let me down.
Although I have hospital cover in a private health fund to ensure I get into hospital when I need to, I have relied on ‘the system’ for everything else.
The Pharmaceutical Benefits Scheme has been remarkable. As an aged pensioner, the basic prescription costs $5.40 (2010 price). Cancer treatment medications are very expensive with products such as the Zoladex hormone implant retailing for over $1,100 per unit and is required every three months. If I was not a pensioner, this would still cost me about $50 per injection. In the USA, the government has cut the rebate on this medication and with patients having to pay the full $1,100 every three months, is it any wonder that the Americans are now promoting surgical castration instead of the chemical castration brought about by this drug.
However, the ‘safety net’ is a great benefit to all Australians – pensioner or not. After paying for 60 prescriptions within a year – and let me tell you, cancer patients need more medication than that – all further prescriptions are free of charge until the start of the next calendar year.
With the pensioner health card and the concept of ‘bulk billing’, it has not cost one cent to visit my GP throughout the period. Two thirds of the Urologist fee is refunded by Medibank leaving a $25 difference to be paid every three months. The full cost of the Oncologist fees have been refunded by Medibank.
Whilst my health insurance covered the cost of accommodation in the various hospitals, there were no extra charges for the TURP procedure at The Mercy Private Hospital in Melbourne. There were no out of pocket expenses from having two cataract operations at Wangaratta Private Hospital nor did it cost anything for a 19 day stint at Benalla Public Hospital when I was withdrawn from opiate use with the Ketamine treatment.
Let’s not forget the pathology and radiography. Every six months, I have a Nuclear Bone Scan and CT scan to monitor the metastases in my skeleton. Along the way there have been a variety of ultrasounds and X-Rays and it seems there are blood tests required every couple of months including the PSA reading. It is interesting to note that Medibank will only pay for one PSA reading a year unless the patient has prostate cancer.
Show me another country in the world that covers the cost of treatment as well as Australia does. Return to Table of contents
It has to be the hardest job of a lifetime. Your partner is afflicted with a terminal disease and you are left holding the baby. You find yourself as the ‘primary carer’ for your husband or wife. You share the trauma that your partner is going through knowing there is nothing constructive you can do to make it all go away.
You suddenly have a new career, living and caring for the one closest to you. I am fortunate that I still have my mobility, that I am not incontinent and that I do not need help to have a shower … yet. There are many worse off than us.
Obviously, society does not have the resources to look after all of us with a terminal illness and so the job defaults to the patient’s partner who, in most cases, is also elderly and not far off needing help themselves. Unfortunately, we never anticipate this happening to us and so we are completely unprepared when it does.
At least, those of us with the illness understand the implications. We know what will happen to us, we just don’t know when. Our job is to find the most comfortable way to make the journey whilst dealing with our loved ones. The carer will survive us and has to come out of this ordeal still in the one piece. I don’t know that I would have the stamina to be the carer if our roles were reversed.
It is not uncommon for carers to spit the dummy as happened with my own father. My mother lost the plot declaring she could no longer care for him and shipped him off to a retirement village. He was not amused and felt abandoned. It was up to Pauline and I to work this through with Mum to get him back into his own home where he needed to be.
When my brother was diagnosed with terminal renal cancer, his wife who had psychiatric problems abandoned him and her own children leaving him stranded. It fell to me to become his primary carer and manage his illness and look after his family. So, I speak with some authority on the primary caring role.
Fortunately, the system is flexible enough to cater to this eventuality. There can be a time where, although the patient insists on dying at home, the needs of the carer must come first. If the carer falls over, so does the patient.
Pauline has been remarkably strong and resilient throughout my illness and I could not have done so well without her. Don’t get me wrong, she is only human and has struggled tremendously throughout this phase of our lives but, in spite of everything that happens, she keeps on hanging on.
Originally, we had intended to stay at Whitfield until I was gone. However, as time went by, Pauline became worried that as properties in in remote areas do not sell very quickly, she could find herself stranded in the middle of nowhere for years not being able to sell. We had to modify our thinking and take the decision to sell up as soon as we could and reestablish ourselves closer to family and friends so that Pauline could safely continue on after I was gone.
My advice to family members who learn that one of their parents or close friends close friends is approaching the end of their life is to share the help and concern around. Please give as much attention to the carer as you do to the patient. It will make their task a bit more bearable.
Another way to help the carer is to help them access all the services that are readily available. This will spread the workload through more people and everyone will be better off. Return to Table of contents
With our aging population, the last thing our overburdened hospital system needs is a bunch of old fogies like me with terminal illness taking up valuable bed space. As a result, Australia has a highly developed palliative care system which is available for the asking.
We tend to think of palliative care being there to ease families through the dying process. It is much more than that. One of my daughters approached the service on my behalf and they came to our home to explain their services and the relationship has grown from there.
With the objective of keeping you in your home as long as you feel comfortable – and most people want to stay and die at home – their first task is to offer free modifications to your home to make things easier. For example, they will install rails in the bathroom, shower and toilet to assist your mobility. They will also install ramps for wheelchair access where necessary.
Where we live, none of that was needed. We are in a set of units where all nine owners are of retirement age, and these things have already been installed. Maybe it was done by palliative care for a previous owner.
Other aids that are offered are ‘bed posts’ to help in sitting upright, waterproof absorbent mattress covers to cater to the night sweats and incontinence along with urine bottles and other necessary items. They also provide high protein/high energy food supplements to help maintain a satisfactory diet.
When the patient needs assistance in mobility, palliative care will provide a hospital bed and any other lifting equipment to assist the carer . All of these things are provided free of charge.
Palliative care is a coordinating body that brings with it a whole range of secondary health care services. Return to Table of contents
Caritas Christi after hours service
Palliative care is a 9 to 5 operation with the services subcontracted out o the various health professionals like dieticians and district nurses. In Victoria, copies of all patient records are lodged with Caritas Christi (the palliative care hospice in Melbourne) so that, should patients have a problem after hours, an immediate response can be obtained. I have used this service on a couple of occasions when my pain management was way out of control. Return to Table of contents
Each week, I receive a visit from a district nurse whose role is to monitor my journey. I have a great relationship with these ladies and they have been made aware of my approach to the disease and have been advised, by me, that they are to call it as it is – even when the final illness is imminent.
They monitor all of my bodily functions from diet, through mental health to continence and bowel movement. At this time, I do not require mobility assistance or sanitary help. If I did, they would be around to help bathe me or whatever is required – daily if needed.
It is great to have access to them simply to talk things through and it doesn’t need to be about my current condition. Just having someone, not intimately involved, to be able to talk to really helps. Return to Table of contents
Since I started the second round of hormone implants in May 2010, I have put on weight. My wife laughs at me being concerned about that. Throughout my life, I had never been more than 49 Kg and in a few months I had increased my weight by more than 10%. That was enough to have to go and buy new trousers because I couldn’t do them up.
Anyhow, as the hormone implant expired, I began losing weight and have reverted to the 48-49 Kg area. This is of concern as one of the major degradation indicators is continued wasting away. I mentioned this to one of the district nurses who asked if I would like to see a dietician. I was concerned enough to accept the offer.
I have never been a ‘must have a meal’ eater. Whilst my weight had never varied since my teenage years, I have tended to eat when I am hungry and go without when I am not. Since contracting the cancer, my diet has suffered and, when in pain, I simply don’t get around to eating three meals a day. Often, I might not eat until after lunchtime when I will have a couple of slices of toast or bacon and eggs which is my traditional fast food.
The dietician suggested that I should move towards a high energy/high protein diet and that means I should adopt everything that those wanting to reduce weight should avoid.
Instead of drinking plenty of water, I should make sure it has some nutrient value such as cordial, soft drink, alcohol or milk. Instead of water based coffee, I should drink lattes or cappuccino. Adding ice cream and yoghurt to make smoothies is the order of the day and I should avoid low fat foods and drinks.
She also recommended four or five snacks a day instead of three meals a day and to try and have a snack before going to bed.
She left me some high energy/high protein food supplements – both fruit based as well as the powdered milk shake type products similar to those sold as meal replacement and used by people trying to lose weight. One outstanding product worth about $3 a serve is called Twocal. It is somewhat like condensed milk that contains double the kilojoules of any other food supplement. I soon learned not to take Twocal during the day as it shuts down the appetite making an evening meal a non-event. Each night, before going to bed, I evaluate the day’s nutrient intake and when I feel I should have done better, out comes the Twocal.
Palliative Care will provide, free of charge, an ongoing supply of these supplements as long as they are needed.
In my case, I may have over-reacted to the loss of weight as I may be just settling back into my basic metabolic pattern. However, I am not afraid to seek advice and I will continue using the supplements whilst my weight is unstable. Return to Table of contents
Everything that the Dietician suggested seems to be in conflict with the theoretical cancer diets built on the elimination of animal protein and going vegan because of the anti-oxidants and their ability to boost the immune system. If you followed the cancer diet to the nth degree, you would be living on wheat germ and other rabbit food.
As maintaining a stable weight is the more important factor, and that I am attending to my immune system in other ways, I will continue with the Dietician’s advice whilst it is helping Return to Table of contents
Psychologically, living with cancer is as damaging to the mind as it is to the body. In both cases. It is an insidious problem that slowly builds up until you cannot cope any more.
At the appropriate times, the district nurses have pointed both Pauline and I in the direction of counselors. It doesn’t mean you are going crazy but you reach a stage of not trusting your own judgment or that of those helping you. I think it is important to be able to access counselors – be they professional or just close friends – to challenge your own thinking at such a traumatic time in your life. Return to Table of contents
The district nurse suggested we see a social worker from the Department of Human Services (DHS) to offer some suggestions on managing financially on the age and carers pensions.
She visited us at a time when everything was going wrong. The mower had died, something else went awry and the washing machine collapsed – all in the same week. It was at the time of the Global Financial Crisis and I commented that, thanks to Mr. Rudd’s stimulus package, at least we would be able to buy a new washing machine.
The social worker told us not to rush out just yet as the DHS had a program to help those in need to obtain replacement white goods. She left an application form which we filled out and submitted. We hoped for but really did not expect it to be approved and, lo and behold, a few weeks later we had a call from Retrovision to arrange delivery of a new washing machine courtesy of the program.
It is services like this that are available that really go beyond what the average person expects. We are grateful to the system for its help in matters like this. Return to Table of contents
Villa Maria Society
Villa Maria is a not-for-profit values-based organisation providing quality services and life enhancing opportunities for older people and children and adults with a disability. The Carer Support Program can assist by providing a variety of carer services including short term case management, flexible respite, social support, education and allied health support, home care services and access and information to long term services.
Back in Whitfield, we had a roof flooding event – a common occurrence in a 1200 mm/year rainfall area. As we had a previous claim due to rain, our insurance company would only allow the claim if we made suitable modifications to the roof which we could not afford at the time.
Once again, the weekly visit by the district nurse led us to the Villa Maria Society who helped us out financially. Return to Table of contents
Who is in charge?
As you can see, I have built a massive support network to help me through this important phase of my life. It includes:-
- Pauline, my primary carer.
- My General Practitioner
- My Urologist
- My Oncologist
- My Palliative Care Team
- My family, friends, neighbours, and my Blogging friends
That raises the important question of who is in charge. Ask most patients and they will tell you that they presume their specialist is in charge because he or she was referred by their GP. If they choose to follow the general direction offered by their doctors, they will get the general treatment based on the average situation for their disease. The problem I see here is that there is no such average condition of a cancer and every case needs questioning and understanding to best be able to deal with it.
In my reality, I have assumed the responsibility for all of the decisions about my treatment and I make sure that all new information is shared amongst the whole support network I have developed. This is made easier as, when you sign on with Palliative Care, they require access to your doctors and medical records. It is the same with the district nurses, dietician, etc. who each provide written notification to you and your doctor of any action or recommendation taken. Managing your treatment is a team effort but you need to know that you retain the ultimate decision making authority.
There are some who prefer to let their doctor or specialist be in charge of their treatment and that is a valid option for those who feel they are not qualified or maybe they are not well enough to take charge themselves.
If however, you choose to stay in charge of your treatment, here are a few suggestions.
I seek the professional opinion of each of the health professionals I have access to and when I am considering alternate options, I always ask if there is any reason why I should not head in a particular direction.
The key is to ask questions.
- When a doctors say something that you do not understand, ask them to explain it to you..
- When they suggest treatment or medication, ask what will happen when you do but, more importantly, ask what will happen if you do not.
- Ask if there are any other options available.
- Ask if the doctor himself, or a family member, was in this situation, what would he suggest.
- Remembering that a doctor cannot even suggest a treatment option that has not undergone the scientific approval research, on alternate medicine issues you need to ask if any of his patients have shown improvement on following a non traditional approach.
You don’t always get a proper answer from your doctor. I remember, before diagnosis, my GP recommended two Urologists – one in Albury, the other in Benalla and asked which one I preferred. Not even knowing what a Urologist was, I had no idea. So I asked, “If you were in my shoes, which one would you choose?”. He suggested the one in Benalla. When I asked why, he said he went to medical school with him and he was a good bloke. Wrong answer!
Always remember, the doctor is working for you. You are not owned by the medical profession or by the government. It may take time but you need to build an open relationship with your doctor on all the medical and psychological issues you are facing.
Throughout the cancer journey, there will be a multitude of tests and scans. So that you understand what is going on inside your body, ask for a copy of every report and image taken and ask your doctor to explain – once again in plain English. You have a legal right to them and, as the disease progresses, other specialists will want to see them. Return to Table of contents
My Oncologist says that pain is not good for your health, and those of us who live with chronic pain will agree with him, although many of his peers will not.
I have been using opiates for over two years now to manage the pain associated with the bone metastases in the pelvic girdle and ischium. Most of that pain is generated by the hormone therapy that deliberately aggravates the tumours in denying them access to testosterone. Of course, when a tumour is actively attacking the bones or an organ, you certainly feel that too.
At this time, I have tumour activity in the Ischium – or bum bone. That is where the sciatic nerve is located and I can assure you that this sciatic pain takes the equivalent of 75 mg of morphine a day to manage. I am using Fentanyl transdermal patches that release 75 microgams of the medication every hour. These patches are replaced every three days which is a much easier regime than taking pain killing tablets all the time.
Having grown up in a world where recreational drugs were shunned, I was ethically disturbed that I may become dependent or addicted to opiates. When I expressed this to my district nurse, she really put things into perspective when she bluntly stated that I was already dependent upon them and even if I became addicted, what would it matter. I am advised that as opiates are absorbed by the pain receptors, you cannot become addicted to them and that is why strong doses that would comatise or kill a drug addict provide no euphoric effects to those using them for pain management.
It starts out with 10 mg tablets of morphine sulphate or oxycodeine otherwise known as ‘hillbilly heroin’ by the rich and famous who use it as a recreational drug. Soon, 10 mg is not enough so the strength is boosted to 20 – 30 – 40 and so on until you get up over 200 mg a day. Apparently, the pain receptors become less sensitive requiring an ever increasing dose to manage the pain. This happened to me in August 2009 when we moved home and I was admitted overnight to the Euroa hospital as I was neither physically or emotionally able to handle the moving process.
When you reach this stage, your pain receptors need recalibrating so I was admitted to hospital to be detoxed with Ketamine. This was a crazy, psychedelic experience that lasted 19 days when it should have been closer to a week.
Ketamine is an anesthetic used on horses. My doctor advises that with Ketamine, they could remove a leg whilst you are conscious and you wouldn’t mind. The treatment began with an initial injection into my stomach. Within minutes, the hallucinations began and, in one of my posts, I recorded that my world went two dimensional where I was looking at a picture image of the hospital room feeling the different parts of my body trying to identify them … and it only got weirder from there. I was then connected to an infusion pump system with continual release of the Ketamine.
Upon release from hospital, I was no longer taking oral morphine apart from some Ordine – a quick acting liquid for pain breakthrough use. In it’s place, I was now wearing a 5mcg/hr Norspan patch – a morphine derivative - that is replaced weekly.
Within weeks of release, I was able to withdraw from most of my medications including valium and anti-depressants, as well as the hormone therapy implants and medications. The end result was that there was no pain where, only weeks ago, I was a cot case. From this experience, I finally realised that most of pain and depression I had been through came, not from the cancer but, from the treatment. Return to Table of contents
Sex after prostate cancer
There is no delicate way to discuss this. It is futile to avoid it as it is the second most important issue after survival. The fact is that treatment for prostate cancer damages or destroys the reproductive system and this is not even discussed with the patient before treatment.
Surgery to the prostate, either removal or re-bore, always damages nerves which inevitably leads to penile dysfunction and dry ejaculation. That is the good news.
In my case, I am a shadow of my former self. Whilst I can achieve an erection there is no elongation of the penis. Research shows that the average penis shrinks by 2.5 inches after hormone therapy. I think that is about the best length I can now achieve. The problem is that, whilst the blood pressure builds to create erection, it has become rather painful. I remember one night it was so bad that I had to raid the freezer for some frozen vegetables to cool things down.
If the surgery doesn’t destroy your sexual function, hormone therapy certainly will. Being a chemical castration, that is what it is designed to do. The erosion of your ‘quality of life’ in using these drugs destroys any sexual desire anyhow.
I do not believe any of this was discussed with me before the surgery or hormone therapy began. If it was, it certainly shows the state of shock that one goes through with the diagnosis of prostate cancer.
Research shows that more than 50% of patients can regain some sexual functionality using Viagra or its alternatives but that it is always hard work making it happen. It is no longer a matter of desire but one of design. Return to Table of contents
Quality of Life
When I was diagnosed, I asked my GP what the game plan would be. He told me it was all about ‘quality of life’ rather than quantity and the objective was to try and keep me functioning as I was for as long as possible.
Without treatment, there would be an ongoing degradation – over an indeterminate time towards death. Through treatment, I could hope for a higher quality of life throughout most of the remaining time with a sudden deterioration at the other end of the period.
In reality, it did not happen that way. The treatment rapidly robbed me of my quality of life and we all thought the game was over. The hormone implant caused the pain to increase, along with the need for heavier pain killers every couple of weeks. The morphine pain killers caused severe constipation and I was vomiting most nights at 2 am.
I had laboured breathing and I could not get out of bed before lunchtime. Palliative care provided a portable bed post to be able to sit upright and a urine bottle to use whilst in the bed. The chemical castration of the implant caused loss of body temperature control as well as loss of mental judgment and confusion brought about by the destruction of testosterone.
It got so bad that an ambulance had to be called as I could not breathe or get out of bed around 2 pm. When we moved, I was not in a fit position to participate and I was hospitalized overnight whilst the move took place to keep me out of trouble.
Throughout all this, I never associated these problems with quality of life. I assumed that it was due to the progression of the cancer and was unavoidable.
Fifteen months on, my PSA had returned to normal and we stopped the hormone therapy. Slowly, my quality of life improved until I was back to where I was at diagnosis. Nine months later, my PSA was on the rise again and the hormone therapy was re-introduced. Once again, my quality of life was on the decline. After another six months, it was determined that the hormone treatment was no longer working and the implants were stopped.
It had taken me over two years of treatment before I got to understand the term, ‘Quality of Life”. It was not until I commenced hormone balance therapy that I realised that my quality of life had been eroded away and that something could be done about it.
Before starting this regime, I awoke every morning in so much pain and distress that I needed oral morphine ‘breakthrough medication’ to get past it. By lunchtime, the pain had gone and my body was functional. By 5 pm, however, the pain and distress had returned and I was a mess for the rest of the night. I had an effective five hour window of relative normalcy with about 10 hours a day being completely non-functional. That is a no way to live.
Is it any wonder that we get depressed under these conditions? There have been many times that I have been in tears asking if it is worth continuing and hoping for a quick end to it all.
Since using this therapy, I now wake up, every morning, without the pain and distress or the need for the oral morphine. I am now functional for the whole of my waking hours just like you. As a result, I have halved the intake of opiate pain medications. That certainly is a better way to live.
It wasn’t until this happened that I finally had the ‘Quality of Life’ my GP had spoken of a couple of years earlier.
There are a couple of ways I have found to enhance the quality of life. First, you have to look at your diet and find foods that will boost your immune system – the bodies only defence mechanism. This includes anything with anti-oxidants particularly with fruit and vegetable juices. You must stay as healthy as you can to counter the damage being done by traditional cancer treatments.
Immune boosting supplements like Lactoferrin make a big difference in warding off germs and viruses as well as attacking tumours directly. I have also referred here to progesterone (hormone balance therapy) which is detailed further on. Both of these supplements are naturally present in our bodies and both play important roles in keeping us alive and well. Return to Table of contents
Treating the wrong thing
“When a patient is found to have a tumor, the only thing the doctor discusses with that patient is what he intends to do about the tumor. If a patient with a tumor is receiving radiation or chemotherapy, the only question that is asked is, “How is the tumor doing?” No one ever asks how the patient is doing. In my medical training, I remember well seeing patients who were getting radiation and/or chemotherapy. The tumor would get smaller and smaller, but the patient would be getting sicker and sicker. At autopsy we would hear, “Isn’t that marvelous! The tumor is gone!” Yes, it was, but so was the patient. How many millions of times are we going to have to repeat these scenarios before we realize that we are treating the wrong thing?
Philip Binzel, M.D., Alive and Well, Chapter 14
These sentiments are echoed in an Age article20, “Australia needs national conversation on death” where the chief executives of two of Melbourne’s leading hospitals say we need to break taboos and have a national conversation to improve the ”quality of death” in our hospitals.
The Royal Children’s Christine Kilpatrick, who like Dr Murphy comes from a clinical background, said she did not want to be portrayed as criticising doctors in her hospital, but acknowledged the problem existed ”in the whole sector”.
”Someone who has, say cancer [may be] having their life prolonged, perhaps inappropriately,” she told a conference earlier this year. ”It’s in the pediatric world – we have children with all sorts of disabilities and we can keep the children alive now, [so] that is a discussion about quality of life.”
They believe the trend towards ”super-specialisation” may have exacerbated the problem, with specialists saying: ”I can fix that heart, I can fix that liver” but ”nobody is necessarily thinking about the whole person”.
In my case, all treatment has been directed at stopping the production and release of testosterone. The only measure they have is the PSA readings taken every 12 weeks. It does not concern my doctors that the treatment regime has knocked the stuffing out of me. During the first round of hormone implants from June 2008 through August 2009, I was under the impression that my constantly deteriorating condition was due to the normal progression of the cancer when, in all probability, it was due to the hormone treatment and the ever increasing use of opiate pain control medications.
Nobody asked how I was doing. All they wanted to know was how my PSA was doing. The continuing deterioration I suffered had us all convinced that I was on the way out and prompted the need to sell up the 10 acre farm, as there was no one available to manage it, and restructure our living arrangements to cater to the needs of my wife, Pauline, when I was no longer around.
PSA is not the only thing. It is only an indicator to the behaviour of the tumors. It is assumed that an increasing PSA count means cancer activity. I have a 74 year old neighbour with metastatic prostate cancer along with asbestosis, osteoporosis, crook kidneys, and a survivor of multiple heart bypass operations. We watched as his PSA climbed from 70 through 150 as panic set in, At the time, his Oncologist told him that PSA was not the be all and end all of the disease. He didn’t know what to believe.
Since then, his immune system collapsed and he was hospitalized to get his red cell blood count back in order. Whilst in hospital, his PSA blew out to be 500 – a scary figure and nobody knew if he would survive the hospitalization. A few months later, his blood count is looking good and his PSA has dropped to 250 … and now the man is celebrating.
This is remarkable because, whilst having previously undergone the Zoladex hormone implant treatment, he was declared ‘hormone resistant’ some eight months earlier. As stated elsewhere in this document, hormone therapy does not kill or cure cancer and it cannot be claimed that hormone therapy brought his PSA crashing down from 500 to 250. There is no medical reason why this should have happened. So, what brought it about? It can only be surmised that his immune system kicked in and fought back.
The theory of ‘Estrogen Dominance’ v ‘Testosterone Dominance’ (the traditional prostate cancer philosophy), would suggest that , as he was treated with the hormone/steroid cortisone to manage his immune system to get his red cell count to rise, his hormone balance has returned closer to a normal state where the immune system can be activated.
Comparing Nuclear bone scans and CT scans are the better way to monitor the progression or retardation of the tumors. The series of scans I have had actually show improvement in the condition of the tumor affected areas. In fact, the most recent scans showed no noticeable degradation over those taken a year ago prompting the need to find out what the immediate threats, if any, to my longevity were.
As hormone therapy is the only prescribed treatment I have had, how then can there be improvement in the condition of the bone metastases? Once again, the answer lays within the immune system. Return to Table of contents
Dying with Dignity
Except for accidents and the like, dying is not an event, it is a process. I am told that prostate cancer will not be recorded as the cause of death. The process will occur when the cancer invades other organs which will degenerate. That means that one of the vital systems, respiratory, nervous, cardiac will collapse. My dad died of pneumonia brought on by the treatment for prostate cancer destroying his immune system.
So, you face the end of your life and you pray that it will happen quickly and with the least amount of discomfort. You think through the concept of assisted dying or voluntary euthanasia and you draw your own conclusions about the quality of dying – dying with dignity.
There is an article online at the Crikey website21. Sally Crossing AM, Chair of Cancer Voices NSW22, writes:
The concepts of dying well and a “good death” were once very popular. Everyone aimed to do this, and even expected it. It meant dying with dignity, with one’s loved ones around and at peace with the idea. Sadly this is often no longer a likely expectation.
Something has gone badly wrong. Medical science has extended our lives, and often improved their quality — but the end still comes, we may just take longer to get there. While medical miracles and improved technology can save us from the ravages of all sorts of illness and even death, we have not, as a society, kept up with the non-medical part of death and dying. In fact, there has been a creeping medicalisation of what really belongs in the largely personal worlds of ethics, morals, faith and philosophy.
And so we come to the assisted dying debate. Having now looked into this argument, I still want to have some control over my final days. A dear friend and member of a Dying with Dignity organization introduced me to the living will concept.
You can prepare a ‘living will’ that covers how you will be treated by the medical profession when you are no longer able to make your own decisions. This covers using or refusing life support equipment, resuscitation or not, and other procedures.
I am certainly not into futile procedures at the end of life but by the same token, I have decided against assisted dying or voluntary euthanasia. artificial respiration or blood circulation for sake of calling it life is foreign to my ethic. Then again, that is how I think now. As I approach the end of my life, I reserve the right to alter my thoughts.
Another good article in The Age titled, “The right time to die”23,shows the Austin Hospital in Melbourne is now setting a template for how these issues might be tackled around Australia. There is more good reading on living wills in this article. The sooner our hospitals take on this program, the better off we will all be.
As director of the Respecting Patient Choices program, Bill Silvester’s role involves acting as a ”guardian” against doctors who get lost in the push to prolong life.
As an intensive care specialist, he is experienced in giving bad news to patients. But he has something to tell doctors, too, which they may not want to hear: ”So many people are being kept alive in circumstances that they would not want, because doctors don’t have the courage to make decisions,” he says.
He has seen it happen. A patient has had a stroke and is severely disabled. They have previously told their family: ”If I can’t wipe my own bottom, I don’t want to be kept alive.” But the doctor does the tracheotomy, puts in the PEG (a feeding tube to the stomach) and off the patient goes to the nursing home for who knows how many months or years, beyond the capacity to register a complaint or voice their suffering. The hospital bed is clear. Next case.
I discussed the final illness with a male nurse with oncology experience asking what can be done if you chose your own time of departure. Of course, the law does not allow assisted deaths or even induced coma in our hospitals but I suspect that they sometimes orchestrate the event.
When my brother was in hospital with his final illness, the doctor came to us and suggested that if anyone needed to see Stephen before he died that they should visit tomorrow as he was expected to die around 4.30 pm. Immediately, the warning bells rang with me that this was being orchestrated as his death by septicemia was not a pleasant one to watch. However, under the circumstances, there was no point in interfering.
When we arrived the next morning, he had been moved to another room and was connected to a morphine syringe pump. He passed away around 5 pm.
Chapter 5 – Alternate treatments
From the article in ‘The Border Mail’, I met a whole new world of readers of my Blog. There were a couple of people moved by the story to make contact to offer alternative treatments that were most interesting. The first was a man in the local area who told me of an aboriginal cure for cancer known as Gumbi Gumbi. I didn’t know if this man was for real or maybe he was a nut case so I met him in a neutral place. He brought me a supply of this material and I duly tried it out but not before doing some Internet research on it.
Gumbi Gumbi is the dried leaves of a native pitosporam plant. It is gathered in the tropics, dried and used as a tea. International research is underway with many positive outcomes for all types of cancer.
Well, I tried Gumbi Gumbi and it nearly killed me. I vomited like I had never vomited before. As it tuned out, my good intentioned friend gave me the wrong concentrations to use – about ten times stronger. After speaking with the lady in Yeppon, she cleared up the concentration with me and was not surprised that I had been so sick.
Alternate cancer therapies … posted 25 July 2008
Last Friday, I had a fellow up Wodonga way referred to me by The Border Mail. he read the story and felt a need to talk with me. I phoned him to find he is a prostate cancer survivor, claiming to be completely cured through natural medicines – in particular an aboriginal herbal remedy called Gumbi Gumbi tea.
A Google Search shows this to be something not to be ignored so I met Alan in Wangaratta to compare notes and was sent home with a supply of Gumbi Gumbi leaf. The treatment consists of taking a litre of the tea as a detox with a maintenance regime of 100 ml daily. I spoke with a lady in Yeppoon who collects and distributes the material who advised that many advanced cancers have been recorded cured with Gumbi Gumbi … but it doesn’t do too well on bone cancer … and that’s what I have. Still, it will do no harm to give it a month or two.
As it is claimed that Gumbi Gumbi can reduce the PSA levels and I am due for another hormone implant (primary treatment) in a fortnight, I want to get a couple of weeks of Gumbi Gmbi into me by then. To try and measure any improvement, I want to get a PSA level taken at that time to compare against the one last week (PSA 300) and the expected PSA 100 in October. Who knows, it may help!
The other supplements – shark cartilage, bovine cartilage and lactoferrins – are definitely having some effect as my general feeling of wellbeing has improved in the week I have been using them.
In Melbourne’s Herald-Sun, there was an article about a new “once a day” pill, called abiraterone, that has been found to shrink tumours and relieve pain in eight out of 10 men with aggressive and incurable prostate cancer – that’s me!. Initial trials have extended expected lifespans from 18 to 32 months so I have volunteered for the stage 3 clinical trials if they are happening inAustralia.
The Border Mail article was also responsible for one branch of the family, on my late mother’s side (the Trevertons and Cribbes clan), learning of my situation and they are now coming to visit.
I keep telling you about the great community support we receive. This week, we received an anonymous letter, postmarked Whitfield P.O., with a printed ‘Prayer to St. Peregrine for Sick Relatives and Friends’. Both Pauline and I treasure the prayer and the community that has accepted us so completely.
By now, I was well into searching for alternate treatments. So, I didn’t have a good experience with Gumbi Gumbi but there were many others to investigate. In that post, I mentioned a new prostate cancer drug called Arbiraterone25 which has now susuccessfully completed more clinical trials.
In August 2010, after being declared castrate resistant (i.e. the hormone therapy no longer works), my Urologist suggested that he would try and get me on to the Arbiraterone program now being run at the Peter McCallum Cancer Institute as it has now been shown to increase longevity for as much as 230 days.
It had been assumed that the cancer was driven by sex hormones such as testosterone produced in the testicles. Current treatments work by stopping the testicles from producing testosterone. However, experts have now discovered that the cancer can feed on sex hormones from all sources, including supplies of the hormone produced by the tumour itself.
Abiraterone works by blocking production of the hormones throughout the body so it would seem to be also targeting the progesterone treatment that is doing so much good for me.
At the moment, I am confused about entering this program as it is in complete contradiction to the use of progesterone which is definitely helping my ‘Quality of Life’. At the end of January, 2011, should my PSA reading not have increased yet again, I will be claiming that the natural progesterone cream is holding the cancer itself. Wouldn’t remission be a bonus?
Meet Dianne Street
The newspaper article brought email contact from a lady in metropolitan Sydney. Her brother passed on the Border Mail article which prompted her to make contact through the Blog. We started an email conversation leading to us becoming a lifelong friends. She has shown true empathy having undergone every treatment known to man for controlling her Non-Hodgkin’s lymphoma which has dogged her for nearly fifteen years.
Over the last two years, Dianne has been there by my side empathising, offering advice, crying with me and stirring me up when she thinks I asing the plot. It is so good to have someone who can do all that for you. Whilst she has been through more chemotherapy and illnesses, it is my job to help support her in any way I can. We have had many hour long phone conversations supporting each other.
Early in her career with Lymphoma, Dianne found an alternate treatment that worked for her and amazed her doctors at the time. She made me aware of this two pronged attack using Lactoferrin and bovine cartilage. Lactoferrin is a milk protein that is essential to the operation of the immune system. It binds iron to the blood preventing tumours from attaching themselves to the bloodstream. In connecting with the bloodstream, the tumours gain access to their food supply. If they cannot connect, the cells must die.
Bovine cartilage, like the arthritis supplements using glucosamine and chondroitin, works by providing a layer of slime – like you see on beef bone joints – throughout the skeleton. The theory of bovine cartilage is that if that slime covers a newly growing tumour, the tiny hair like blood vessels get buried in the slime and are prevented from attaching themselves to the blood supply. That same slime covering bone joints eases arthritic and sports injury pain by a lubrication process.
Shark cartilage is used by making a transdermal cream and rubbing it into the pain affected area. Whilst it takes a week or so, it does ease the pain of the bone mestasases. In the above post, I had been using these supplements for just a week and noted an improvement in my general well being.
I have continued the use of Lactoferrin and bovine cartilage on a daily basis to this day and attribute their use to the continuing improvements in my nuclear scan results. Remember, hormone therapy does not kill or cure cancer so the improvement must have come from elsewhere. This is the only elsewhere I have been subjected to.
Some will say that it is simply my body fighting back and I will agree. However, the only physical tool we have is the immune system. It needs noting that hormone therapy, like chemotherapy and radiation, damages the immune system. Lactoferrin is scientifically proven to boost the immune system.
The Immune System
When things go wrong in our body, we ignorantly rely on our immune system to put it right again. That is how cuts and bruises heal and how we get over a cold. When our immune system cannot cope, we go see a doctor who treats the symptons with medications. Internet research indicates that our modern lifestyle is a major factor in contracting many diseases with tumours and surface lesions being the symptoms of the body’s sustainability being challenged by toxins that destroy our immune system.
The reality in the treatment of cancers that cannot be cured by doctors involves surgery, chemotherapy, radiation, hormone therapy and pharmaceutical drugs. Almost all of these treatments cause more damage than they are worth. In my case, the LHRH Agonist (Zylodex) + the anti-androgen (Cyproterone Acetate) nearly killed me whilst addicting me to Morphine in trying to manage the pain. The common denominator of all these treatments is that they weaken the immune systemoften deliberately, and our doctors offer nothing to rectify that. So, I have had to learn how to treat my body with more respect than I have over my previous lifetime.
If it was not for Dianne Street, I may never had thought about my immune system and I may well have already died as a consequence. But that was not to be. I researched and learned and reacted to the knowlegde gained. Following her advice, I started to look after my immune system with supplements and a few diet modifications like eating more foods containing antioxidants and by alkalising my diet. Tumours apparently cannot grow in the presence of oxygen and alkaline diets oxygenate the blood. In spite of their acidity, lemons are the most alkalising food of all so, whenever they are available, I drink straight lemon juice – maybe with a bit of sugar.
Some go extremes, like Jim Stynes, who drinks his own urine believing it to be the best immune booster of all. Whilst I am not prepared for that, I have other options to help my immune system along. I think most of us would opt for drinking mothers’ milk – the source of any immunity – before drinking our urine.
The very fact that we have a tumor indicates that our immune system has not been able to cope with this foreign body. That is what the immune system is for. It is the body’s self help mechanism to fight off illness. If we are into the fight against cancer, it seems to me that the immune system is the first priority and needs to be strengthened to have the best chance of winning. Yet, every medication offered puts more stress on the system.
Lactoferrin: the first line of defence
Lactoferrin is the primary building block of the immune system. With 15% lactoferrin content in mothers’ milk, it is nature’s way of preventing infection in our babies.
Very high concentrations of lactoferrin are found in the colostrum the first milk produced by the mother through breastfeeding, which has for long been acknowledged as the ideal first food for babies and the perfect mechanism through which immunity can be transferred from mother to child.
Lactoferrin is a milk protein always present in our immune system. Its source is either milk from the human body or milk products that have been consumed. In cow’s milk, the lactoferrin content is approximately 0.2 gram per litre. In human milk, the lactoferrin content is approximately 1 gram per litre.
The October 2000 edition of “Life Extension” magazine issued a report entitled “Lactoferrin: The Bioactive Peptide that Fights Disease,” by Will Brink. In the article, lactoferrin is praised for its ability to fight diseases of the immune system. The article also suggests that the consumption of lactoferrin may even help the human body fight cancer, especially cancer of the pancreas, by inhibiting the general growth of tumour cells.
Because lactoferrin is an iron-binding glycoprotein, which means that it has the ability to bind iron to cells, it gives the body an increased resistance to diseases caused by microbes and bacteria, including Crohn’s disease. In binding iron to the blood, tumours cannot attach themselves to the blood stream withdrawing their food supply.
It is well documented and researched and is actually present in all the body’s wet areas (saliva, tear ducts, intestinal mucus and genital fluids) naturally. It stands guard at all of the body’s orifices ready to attack microbial and viral attack.
It is also stored in the granules of neutrophils, the white blood cells that are activated by the immune system to attack and eat other cells. Neutrophils are the major constituent of pus which we know encapsulates splinters and other foreign bodies. They respond quickly to sites of inflammation or bacterial infection, and secrete Lactoferrin. This molecule interacts with cells at inflammation sites to inhibit the production of cytokines that would cause inflammation. There is also some evidence that it inhibits the binding of viruses to cells, including HIV.
Due to modern diets and the ageing process, we may no longer be producing enough lactoferrin in our own bodies to benefit the immune system. Thus dietary supplements have been developed.
With access to mothers’ milk rather limited, lactoferrin supplements are derived from cows’ milk. It is extracted from whey powder and is offered in powder, tablet and capsule form. A couple of capsules a day, or about 400mg of pure lactoferrin, is enough to boost the immune system and protect against outside infections which is vital to cancer patients whose treatment may have damaged their immune system.
In recent times, there has been a ‘mothers’ milk bank’ established and I have read that the supply is greater than the demand. As the Lactoferrin in mothers’ milk is so much better than bovine Lactoferrin, attempts should be made to allow those with weak immune systems to access the surplus that currently exists.
Bovine lactoferrin is used in baby formula, yoghurt, eye socket lubricant, AIDS management, influenza prevention, acne control and Lupus management, tumour retardation, and for easing the side effects of chemotherapy.
“Clinical trials have been started in New Zealand26 for the testing of a Fonterra ice cream, which claims cancer patients can now get through chemotherapy with relatively few side-effects, thanks to the ice cream which is being promoted as a medical food that Fonterra and the University of Auckland developed for trials. The strawberry ice cream reinforced with milk fat and a dairy protein, can ease the diarrhoea, anaemia, weight loss and lowered immunity, making some patients sick enough to stop their treatment.
While, the active ingredients have shown great potential in the laboratory, it remains to be seen if their benefits translate to people.
Researchers sifted through thousands of milk components before they found the ones that offered the greatest potential for health improvement and well-being. Animal studies indicate milk fat and lactoferrin, another bioactive milk fraction that contains iron can protect the lining of the intestine. About 14,000 tonnes of milk have to be processed for producing one tonne of lactoferrin.
The ice cream, in Phase 2 clinical trials may also help reduce weight loss and damage to the immune system during chemotherapy.
This is the first of several projects that has successfully identified a particular milk fat and milk protein that protects the mouth and gut linings from the toxic effect of cancer-fighting drugs, and reached the human trial stage.
An inflamed mouth, nausea, diarrhoea, loss of appetite, poor food absorption, weight loss, anaemia and lowered immunity are some of the ill effects, which can be so severed in some patients, they put their lives at risk.
The icecream is being tested at oncology centres in Whangarei, Auckland, Waikato, Palmerston North, Wellington, Christchurch, Dunedin and Invercargill.”
The trial is a double-blind trial, as neither doctors nor patients know whether their ice cream contains the active ingredients.
Lactoferrin or other immune booster supplements will not cure a disease but they can halt the progress of it. As we are told there is no cure, we are too easily trapped into taking the toxic drugs that medicine has to offer until we die. If we accept that our lifestyle has contributed to our situation, we need to look at altering the way we live and what we eat.
Lactoferrin is not just for cancer sufferers, it is a supplement with no side effects that can benefit everyone. The usual source of the supplement is through health food shops. The one I currently use is readily available from Priceline pharmacies under the brandname Biosource Immune Plus.
Natural Progesterone: the first line of attack
Progesterone is one of the sex hormones produced in both men and women alongside testosterone, estrogen, cortisol, human growth hormone as well as others. It is also produced in all mammals and plants as well.
The proportion of the various hormones manufactured in either sex is related to the sexual functional needs of the individual – testosterone in young men … estrogen in women. As we get older, the amount of each hormone produced is reduced. When the natural balance is lost, our bodies are prone to malfunction.
‘Estrogen dominance’ has long been recognised as the boogy man as women enter menopause. It is estrogen dominance behind the whole business of HRT (Hormone Replacement Therapy) that has been used on post menopausal women for a generation.
HRT was developed by the pharmaceutical companies developing drugs that imitate the various hormones. Unfortunately the practice is now in tatters as research has shown that HRT treatment is causing many problems including breast cancer.
If it is so well understood that women’s health is damaged by hormone imbalance, why wouldn’t the same apply to men. For God’s sake, we are not different species.
When it is all boiled down, life itself can be defined as a ‘sexually transmitted terminal condition’. We are but a sexual being.
Fortunately, scientists have long been able to extract hormones from plants that have the exact molecular structure as those in the human body and can be used to regain the natural hormone balance lost to ageing. Natural progesterone is one of these developed from the soybean.
The history of men using progesterone to treat prostate cancer has been around for about fifty years yet it is not discussed or suggested by our doctors. They persist with the notion that it is just another female hormone.
Since most progesterone in males is created during testicular production of testosterone, and most in females by the ovaries, the shutting down (whether by natural or chemical means), or removal, of those inevitably causes a considerable reduction in progesterone levels. Previous concentration upon the role of progestagens (progesterone and molecules with similar effects) in female reproduction, when progesterone was simply considered a “female hormone”, obscured the significance of progesterone elsewhere in both sexes.27
New hope in my fight … posted 8 September 2010
A few weeks ago, I was told that I had become castration resistant (formerly hormone-resitant or hormone-refractory) . In other words, the hormone treatment that has kept me going for two years is no longer effective. The bad news is that we have run out of treatment options and it is all downhill from here.
My specialist is working on getting me enrolled in an abiraterone trial – an experimental drug – that typically adds a couple of months to one’s life expectancy.
Some time ago, I saw a documentary on male contraception experiments where the female hormone Progesterone is injected to shut down the reproductive systems in a man. Testosterone is then injected to reactivate the man’s sexual functionality. Logic suggested that if progesterone completely shuts down the manufacture of Testosterone and semen, it could be beneficial for prostate cancer patients.
This prompted a “Progesterone cancer” Google search which delivered some encouraging results. I learned that:
Dr. John Lee, M.D., the author of several books including What Your Doctor May Not Tell You About Menopause, has found that progesterone for men is one of the most effective treatments for prostate cancer. He has a series of patients who had metastatic prostate cancer who went into complete remission with natural progesterone. 5-6mg twice per day is applied to the back of the hands in cream form. Progesterone appears to turn on the anti-cancer gene p53.
Progesterone cream is not available over the counter and requires a doctor’s prescription that can only be filled by a formulating pharmacist. Now that there are no further treatment options available, my doctor cooperated and I sourced the product through the internet.29
I began using progesterone a few days ago and there has been a significant improvement after only two applications of the cream. I am waking up without distress or physical pain although there is a minor breakthrough later in the morning. I am now able to eat before mid afternoon for the first time in months. In fact, on the day after starting the use of the cream, I had three meals for the first time in a year or more. I am ‘more alive’ throughout the day.
It would seem such a rapid reaction is unlikely. However, I don’t know – or care – if this is a placebo effect but, after two days, I am convinced that the progesterone cream is beneficial. I will keep you informed of the progress.
One week down – rest of my life to go… 13 Sep 2010
I have been using progesterone cream for a week now and life only gets better.
A few days before starting this regime, I had two of the worst nights on record. They were so bad, I really wanted it all to end. In fact, I was terrified of going to bed not knowing what the night would bring. Every morning was horrific with so much pain, phlegm discharge, gasping for breath and dry retching that I was sometimes incapable of taking my liquid morphine life support. It took about two hours for the pain and distress to ease. That left me with about five hours of relative comfort before the demon took me over again around dinner time. Truly, there is no quality of life in that!
Compare the difference.
With a full night sleep (up to 13 hours), I wake up wet and have to change my clothes – but I feel fine. Whilst there is a light nagging pain in my pelvic girdle (where the cancer has metasticied into the bones), it does not require any analgesics apart from panadol. My appetite has returned and I have a coffee and toast to start the day off. Think about it! I have given up three meals a day of morphine so don’t tell me this is a placebo effect. The progesterone is really working.
I have discussed this treatment with two doctors both of whom are not surprised at the results – only that it works with men as well as women. Progesterone is the main tool used by doctors to treat hormone imbalance in women to prevent osteoporosis. When asked why they don’t promote the use of progesterone in men, the response is that they cannot recommend it as it has not been through the formal clinical trial regime carried out by the pharmaceutical companies (there is no money in it for them).
When we are looking for alternate treatments we must take that into account and ask our doctors if they have had any patients who appear to have benefited from such treatments. That should get them around their ethical/professional qualms of making a non-traditional recommendations. I stress however, you have to ask … they will not volunteer the information.
As we get older, both men and women suffer from hormone imbalance and prostate disorders are indeed a result of that imbalance. Have you ever noticed that in really old people, women tend to look more like men whilst men tend to look more like women … hormones at work.
Another year to go – one day at a time … 8 October 2010
I have just had the annual bone scan and CT scan to see how things have changed in twelve months. The bone scan showed marked improvement through the ribs and pelvic area but showed new tumour growth in the left ischium – better known as the bum bone – whilst the CT scan showed major dilation of the hepatic bile ducts. Overall, not dramatically more serious than a year ago. Thus, I had to find out where specific threats to my longevity lay.
My specialist advises that my PSA level has risen from 5 to 75 in spite of the hormone implants over the last six months which are no longer having any positive effects. At the current rate of rise, I can expect another twelve months of relative comfort before the tumours grow to such a size that they apply pressure to my other organs when the decline will probably be swift. In the meantime, with the new activity in the bum bone, I have started getting sciatic nerve pain down the left leg which is likely to intensify. If that pain cannot be held by analgesics, I may have to consider radiation therapy.
The wild card in all this is the dilation of the bile ducts which indicates a restriction – usually caused by gall stones or a potentially cancerous growth. As it has been this way for a year and there have been no symptoms, the probability of gall stones is non-existent. On the other hand, should it turn out to be cancerous – probably in the pancreas – there is no cure or treatment available so it becomes a pragmatic decision to wait and deal with it should it eventuate.
There is, however, a positive wild card with the use of the Natural Progesterone cream. I have been using this for over a month and the results have been spectacular in the improvement of my quality of life. My doctor has me keeping a pain management diary where the results have been documented.
Prior to the use of progesterone, I woke up every morning in pain and distress that required around 50mg oral morphine daily (breakthrough pain medication) and at least two hours recovery time. By 5 pm, the pain and distress had returned requiring more breakthrough pain relief. In reality, the comfortable period of each day was between noon and 5 pm – not a real good way to live.
Since using the progesterone cream, I now wake almost every morning without the pain or distress and I rarely have need for the oral morphine. On top of that, I have been able to reduce the controlled release opiate patch from 100 mcg/hr to 75 mcg/hr and I will be attempting to bring that down to a 50 mcg/hr patch. That means I will have cut the opiate use from 150 mg/day to just 50 mg/day. My comfort zone (quality of life) has been lifted from 5 hours/day to a full day like you enjoy.
If you know anyone with cancer who has to tolerate similar pain and/or distress, please tell them about what progesterone has done for me. Show them the last few posts and encourage them to contact me if they need further information.
A good progesterone website can be found at Progesterone Therapy31 and covers the whole range of uses for both men and women. They publish a this List of symptoms and diseases32 and you will be surprised how progesterone may be able to help you too.
My GP is an enthusiastic convert to the use of progesterone in men which is used to counter ‘estrogen dominance’ as found in menopausal women. He sees me walk into his clinic every fortnight and has seen the difference in my quality of life first hand.
After the August review, I was rather depressed with the news that they had run out of treatment options and that I could have as few as three months ahead of me. This October review is far more positive and I am relieved to hear that I have the extra time and an improved quality of life.
I may even get to see Collingwood win back to back premierships.
I wrote to the Progesterone Therapy website telling them of my experience with progesterone and received a reply that challenges the whole concept of testosterone causing the progression of prostate cancer. I include this correspondence here:
Progesterone boosted my ‘Quality of Life’
by Greg Naylor (Victoria, Australia)
I have final stage prostate cancer with bone metastases. I am now ‘castrate resistant’ to Zoladex hormone implant treatment and there are no further treatment options available except pain management.
I have been using natural progesterone cream for over a month and it has turned around my poor quality of life.
Before using progesterone, I awoke every morning in pain and distress requiring liquid morphine (ordine) and oxycodone tablets. These took a couple of hours to take effect.
My comfort zone was between noon and 5 pm when the pain and distress hit again and carried on into the night.
Since using progesterone, I rarely wake in pain or distress and have no real need for the breakthrough pain medication. I have also been able to reduce the strength of the fentanyl (opiate) from 100 – 75 mcg/hr patches.
My doctor is witness to the improvement in my quality of life as he has seen me continuously over the two+ years of the disease.
If you know any cancer patient with a degraded quality of life, please show them this story or have them contact me by email.
Comments for Progesterone boosted my ‘Quality of Life’
Oct 13, 2010 Progesterone boosted my ‘Quality of Life’ by: Wray.Hi Greg Bless you for sharing this with us. We’ll certainly let them know, particularly as we have many men asking about progesterone for BPH, rising PSA levels, cancer too. In fact many men are using it successfully for prostate and libido problems.I’m surprised you were given Zoladex, in view of recent research indicating testosterone is not implicated in prostate cancer. There is evidence that low testosterone might cause an increase risk in prostate cancer, see here and here. In fact there is little evidence that testosterone treatment causes either prostate cancer or it’s progression, see here. And that oestrogen is a possible the culprit, see here, here and here.There’s some evidence high prolactin increases the risk. Although in men with PCA the addition of testosterone does cause a rapid progression if they have been castrated, but not in hormonally intact men, see here and here. An analysis of 44 studies using testosterone treatment showed no evidence in an increased risk in PCA, see here. A 1941 study on one man initiated the androgen deprivation therapy for PCA, see here and here.There is also a possibility that epidermal growth factor receptors are involved, see here. Unfortunately there are few studies done on progesterone’s effects in men, and none I can find on progesterone and cancer. Plenty for women, where it’s been used successfully in a number of cases. These two papers are worth reading here. You’ll notice one mentions blocking gonadotropin secretion, which ultimately Zoladex does.I’m not sure how much you are using, but please consider at least 100mg/day. It’s safety level is very high, over 1200mg/day is given via IV transfusion to men who have suffered traumatic brain injury. Take care Wray
Chapter 6 – Autobiograhical jottings
These short stories have little to do with my prostate cancer. However, they were motivated by the need to let my family and friends better understand who I am, what has influenced my life and the desire to pass on what I have learned of life to my children and grandchildren. They do offer a reflection of life in Australia since WWII.
Thoughts of a Grandparent
As a grandparent, facing his mortality after being diagnosed with terminal cancer, I question what I should tell my grandchildren. Should it be that expected of me as a responsible citizen – or – should it be how I see the world with all the cynicism of having lived more than sixty five years.
I have had my share of the joys and the pains of growing older; the happiness and sadness of relationships; the rewards and the disappointments of a career; and the confrontation of my mortality or immortality … and I have drawn my conclusions.
Even though education of children is the responsibility of the parents, we grandparents have an obligation to teach them what we know as the wisdom of our experience needs to be evaluated and children need to understand our life references to make their own decisions.
Education of children is the responsibility of the parents
Parents are the first and most important teachers of young children but they are not the only ones. After the first few years, the children find new teachers at kindergarten and then at school where, whilst reinforcing or questioning that taught at home, they discover concepts that have never been broached by their parents.
This is where grandparents can help. We gave our children the standards by which they live and raise their own children. Undoubtedly, they have questioned our standards as their kids will do in the future. Learning the connectedness and continuity between the generations is possibly the greatest gift we can give them. The spirit of our forebears stays with us and comforts us throughout our own lives.
As grandparents, it is our duty to contribute to the education of our grandchildren.
Even though education of children is the responsibility of the parents, we have an obligation to teach them what we know because the wisdom of our age needs to be evaluated.
Grandparents are today’s conventional wisdom and should be consulted for the knowledge and understanding they can offer. They do not necessarily have all the answers but they can and do bring an alternate view that helps less experienced minds reach a sound decision.
Grandparents have made mistakes in their lives too and hopefully they can see the error of their ways to pass on considered opinions that help their grand children. That is wisdom.
We have lived our lives with a different set of reference points than those of our children let alone our grandchildren They will not understand the significance of 9/11 just as our own children cannot relate to the death of JFK.
Similarly, we are limited by our own experiences and those of our immediate families. Until our grandchildren learn that their future can be influenced, for the better or worse, by the decisions they make, they cannot become responsible adults in the community.
The most important reason we have an obligation to teach them what we know is because children need to understand our life references to make their own decisions.
There is nothing more soul destroying than watching someone close to you make bad choices that could have been avoided if only those that cared for them had stepped in and offered some sound advice.
It must be remembered that children are not self sufficient ‘little people’, they are in fact ‘big people on training wheels’ who sometimes fall over and need their injuries attended to. We never become truly independent as we constantly need the reassurance of those around us.
Medical science tells us that a child’s brain is not fully developed until sometime in their twenties. Until then, their reasoning abilities are questionable and they still need guidance in logical thinking and how their choices affect those around them.
As a result, the things they learn from their parents and grand parents set the standards they will live the rest of their lives by.
So you can see that although education of children is the responsibility of the parents, grandparents have an obligation to teach them what they know for two main reasons. First, the wisdom of their expereiences needs to be evaluated. But most importantly, children need life references to make their own decisions.
My contribution to the education of my grandchildren will be a series of memoirs discussing how I managed my life and where it might have been different. I can’t make them read these stories, I can only hope that they know how to access them should they ever want to know what their grand father thought about life.
Family Life in the post war era
We were a middle class, post war, home owning family with a father at work, a mother at home and three kids going to school – that was the post war expectation in Australia.
We lived at 8 Lena Grove, Ringwood which was on the edge of suburbia in the 1940′s and 50′s. Dad built our home himself, whilst running his butchers shop in Balwyn and he did it without taking out a loan. As he earned the money, he continued the construction. That is where the family lived when I was born on 4th June 1942 through 1957 when we moved to 8 Yerrin Street, Balwyn.
In Ringwood, our half acre block backed onto the railway line yet we never noticed the trains thundering through until midnight. Yet when we moved to Balwyn, we were about the same distance from the tramline and we heard every tram that rumbled by until we eventually became accustomed to it.
I was the middle child with Neville being six years older and Stephen being five years younger. Because of the large age gaps between the three of us, there was not a of of interaction between we three boys. By the time I started school, Neville was off to St Kevin’s secondary college and when Stephen started school, Neville had just entered the workforce aged 15 and I was off to St Kevins as well.
We were a stable family with dad being a non-smoker and tea-totaller but he still had his vices. His hobby and second income came from racing greyhounds and he was good at it. He won a lot of money gambling on his greyhounds and, it came to light as I grew older, that he employed some shonky practices that made his sport so profitable that he was able to build his home without seeking finance.
During World War II, dad owned a butchers shop and was exempt from military service being classified as working in an essential industry. It was due to his ilk that greyhound racing was able to continue throughout the war years. He would get a call from the track manager asking if he would help fill up the card so that the race meetings could continue. He was always ready to help as he was able to nominate the race and the box number that his dog/s would start from. This helped with his success on the track. At one stage, he held the track record for every greyhound race track in Australia.
I recall that he also ‘fixed’ his dogs giving them Nembutel sleeping tablets to slow them down and cocaine, that he freely got from the local chemist, to help them win.
OK, so he was bent when it came to the greyhound racing and the real mystery of his exit from the sport was never answered. In the early 1950’s, he came home one day and shot all his dogs and never entered a race track again. He claimed it was because Neville, his eldest son was growing up and he didn’t want him to follow in his footsteps. After he died, I probed his contempories on this issue but they kept the true reason to themselves. I suspect that he was warned off the track by those who saw him as a threat.
He gave me some sound advice on gambling telling me that if I was going to gamble, to stick with the greyhounds as they didn’t have a jockey on their back. Fortunately, I never got into betting of any kind.
His success in business and on the track meant that, although we could not be considered wealthy, we never went without.
In my early childhood after World War II, there were no white goods (washing machines, dryers, refrigerators, etc.), few electrical appliances, television had not yet been invented and telephones were considered a luxury item. There were no supermarkets or fast food outlets except a ‘fish and chip’ shop. If your town had a restaurant, odds were that it was Chinese and you ordered the meals by numbers like, “I’ll have a number 27 (chicken) with a number 33 (rice)” because nobody could pronounce the Chinese names on the menu.
General food supplies were bought at the Grocer’s shop where everything from butter, sugar (dry goods), and buscuits were weighed or measured. The only pre-packaged foods were canned as in baked beans and jam. There were no frozen foods. Perishables like milk and bread were delivered to your door along with blocks of ice for your ice chest – the precurser to the refrigerator.
We were always the first with the latest technology. We were the first ‘Naylors” listed in the Melbourne telephone directory. We had television for the Melbourne Olympic Games in 1954. I recall it cost about $800 at a time when wages were $40 per week. I recall a Sunbeam Mixmaster that used green energy – it was plugged onto a tap which drove a water turbine in the base to deliver the power with the water running back into the sink to drain away. We also had a one-off water powered rotary clothes hoist. Turn one water tap on and up she went. Close that tap and open another and down she came. This was a popular neighbourhood attraction for the kids to get a free ride as the clothes line lifted up about a metre.
Mum told how she objected when dad bought her an electric washing machine. She was of the opinion that a machine could not replace the sanitising of clothes that a wood fired copper provided. However, after the first wash was completed, she changed her tune. She no longer cared whether it sanitised as well as the copper because it reduced washing day – a full day’s heavy labour – to a casual job.
In 1949, mum was the first woman we knew who had a driver’s licence and times must have been good because dad bought her a Vanguard sedan and a two toned powder blue and white Ford Fairlane (single spinner) for himself. Three years later he bought mum a 1952 Vanguard sedan and the last of the Chrysler Royals for himself.
In my early days, we had a pre-war Chevrolet and a twelve foot caravan for family holidays. Later, dad bought a block of land at Seaford and converted an old tram into a holiday shack. When he put a few extensions on the tram, the council objected so he replaced the tram assembly with a weatherboard house that he also built himself. The Seaford house remained in the family until 1991 and all three brothers, Neville, Greg and Stephen used it as their marital homes at some stage.
The holidays at Seaford were legendary. As well as the house, we also had a boat shed on the Seaford foreshore with a 12′ clinker boat for fishing. During the holiday periods, Russel Brown (step cousin) used to holiday with us. Apart from the beach, dad took us flounder fishing, bay fishing, and dirt bike riding in the sand dunes.
In the mid fifties, dad bought a 30 foot boat on the Yarra and shipped it to Eildon Weir which had just recently come on line. As a result, Eildon became the holiday destination during my teenage years and into the 70′s when mum and dad would take David, Lisa and Anthea away for all of the school holidays. Whilst that built a wonderful relationship between the grand parents and the grand children, it hurt me that my father was ‘stealing’ so much of my kids childhood from me.
No doubt, dad was a good provider But, that is the way it was in a 40′s and fifties functional family.
Primary school days
Born in June, I would have commenced school in 1947, not yet 5 years old, at St Mary’s Catholic Church School in Wilana Street Ringwood. There were two school buildings, one being the Church with concertina doors to close off the Altar and another set halfway down to separate the building into two classrooms during the week, and the other was a smaller building for the lower grades which had been Ringwood’s Catholic Church in earlier times.
The only kid I can remember starting school with was another misfit nicknamed “Blockhead” Buchanan by the Mercy nuns from Lilydale who traveled daily by train to teach at the school. The reason I remember this character was because, in his first days, he would not conform to the rule of the nun and, when she attempted to strap him around the legs, he snatched the strap from her hands and threw it onto a cupboard. As a result, Sister Mary Beatrice refused him an education giving him chores around the school like opening the windows and other menial tasks to keep him out of harms way. Is it any wonder that he became an academic retard.
Every day, he would open up the concertina doors of the Altar to say prayers – another job for Blockhead.
Mum was a member of the mother’s club which raised funds for the school along with about a dozen other ladies. We lived about a mile from the school and we walked to and from school each day meeting up with a few other kids along the way. Such was the safety of the times. Back then, Ringwood was a growing suburb and one knew most of the families throughout the district.
In the playground, the boys played allies – flicking small glass balls at other glass balls – every boy had an ‘alley bag’ to hold his marbles which were won and lost upon winning the game whilst the girls played ‘skippy’ with skipping ropes or ‘hoppy’. (hopping on one foot over a designated course). There were other unorganised ball games like ‘footy’ and a few combat games like British Bulldog – I no longer have no idea how that worked!.
The one combat game that I excelled at was with my protector Stanislaus Slobinski where the battle was between two teams with one small kid sitting on the shoulders of a big kid. The combat was between the small kids with the aim of dislodging the opponent. Because Stanislaus was so big and strong, all I had to do was get a good grip on my opponent and down he went. We were the champions!
Upon graduation to the ‘big school’ in grade three, we traded chalk and slates for pen and paper. Each school desk had an ink well which was dutifully filled on a daily basis by “Blockhead” as one of his menial chores. Pens with replaceable nibs were dipped into the ink and were recharged every few words. Ball point pens had not yet been invented and, when they were, they were frowned upon as not being real pens. The big kids (years 5 & 6) used fountain pens – a real status symbol for a school kid.
Ringwood was unsewered back then and the standard toilet had a trap door in the back where a ‘dunny can’ was located under the toilet seat. On a weekly basis, the ‘night man’ came and exchanged an empty can for your full one. Septic tanks were still uncommon at the time. I remember the night cart tipping over on the top of the Ringwood Hill one night and there was sh*t from ars*hole to breakfast time on the main drag through the town.
Anyhow, a dastardly plot was hatched to stir the girls up. When one went to the toilet, the boys would silently open the trapdoor and reach in with a piece of rye grass to tickle the girls on the bum. It was a great source of amusement for the boys until one day someone unwittingly tickled one of the nuns when she sat down. Funny that, the nuns immediately got their own toilet with a septic tank to boot.
In 1952, when I was 12, the Parish started the 2nd Ringwood Scout Group and I was appointed a Patrol Leader of the ‘Curlew’ patrol. I must have shown some leadership or people skills for that to have happened. After Mass on Sunday, the scouts would walk about three kilometers to Jack Clark’s place up Loughnan’s Hill with our billy cans and tucker. We had permanent patrol campsites where we built bush furniture to suit our needs and practiced the skills of scouting. Late in the day, Jack would drive us back home on the back of his three ton flatbed truck.
In 1953, I began secondary school at St Kevin’s College, Toorak, a Christian Brothers private school and a year later, I had to leave the scouts because dad bought the holiday boat at Eildon and I had to traipse off with them most weekends.
I completed my secondary education in 1957 when I was 15 having completed Intermediate (Year 10), the recognised leaving age for those not destined for University. Around that time, we moved from Ringwood to 8 Yerrin Street Balwyn.
The Runt of the Litter
I was the ‘runt of the litter’. Throughout my 67 years, I have never weighed more than 50 Kg. As the smallest kid in any grouping of family, school or society, I grew up with many insecurities. “Isn’t he tiny?” and “He’ll make a good jockey” were familiar greetings. Being of small stature, I have been overlooked and underestimated in every aspect of life.
As a result, those of us who suffer this form of discrimination are forced to sit on the sidelines (of life) and become observers rather than participants. We learn to accept that we must be less than normal because we are not included in group activities. So we study how other people operate and try to figure out what is normal and where we fit into the scheme of things.
It doesn’t only affect the individual, it also affects the family. Mum told how she felt inadequate amongst the other young mums at the community health centre particularly when the motherhood nurse expressed concern at how tiny I was. Mum took me to the doctor who explained that there was nothing wrong and that my particular constitution was simply the way it was.
Whilst I had a family that supported my condition, I knew others who copped mean spirited criticism within their own family and I can understand how easily kids can fall into a state of depression and shut down the outside world completely. Does this feeling of being a misfit lead to autism and ADHD? I think so. I can only assume the support I had at home gave me the will to push on.
Possibly, my condition was the result of having whooping cough before I was a year old. At the time, babies with whooping cough usually died. The doctor asked if mum would consent to an experimental drug that might get me through. It was the first use of penicillin ever made in Ringwood … and it saved my life. Whilst I have no real recollection of my pre-school days, I do vividly remember the gut wrenching pain of that cough.
In my teenage years, I was the ’100 pound weakling’ referred to in body building advertisements in every magazine. (It’s funny how today, these ads are all about losing weight). I took my problem to the local doctor who told me that he could put weight on me with a course of cortisone but, upon completion of the course, the gained weight would be lost. He also told me that I should appreciate that I would never suffer from obesity and its associated heart problems and that, at the other end of my life, I would not suffer the weight loss of many debilitating diseases. He taught me that this was the only one of me that I had, and so I learned to live with it.
At primary school, I was picked on for being so small. I was bullied so I soon learned to get myself a protector in the form of Stanislaus Slobinsky, an Hungarian refugee kid from the local ‘Bolt Camp’ – a World War II refugee centre for people from the Baltic States. (Today, they are called detention centres).
Stanislaus was also a misfit being a giant of a boy, obese – slow thinking and smelly – but as powerful as a bull. We made a formidable team complementing each other’s talents.
My father was a man of strong will. Although he never drank or smoked, he was the centre of attention in his social circle. As a child, I remember parties at our place and dad was always the bar tender and kept everyone’s glass full. Maybe he had an ulterior motive in getting them drunk and becoming loose with information. We also had mum’s brother living with us. Uncle Brian returned from World War II an alcoholic. He ultimately died as a derelict.
Being the observer, I learned early of the evils of drink and gambling and the weaknesses of those who imbibe too much of either. Somewhere along the way, I decided that I could achieve more by being in control of my own thoughts. I obviously lost the plot with cigarettes which I have used since I was 15. I have never been a gambler and I have rarely got drunk. To this day, I will have an alcoholic drink with others but I have no need for alcohol in the house. That doesn’t make me better than others, it is simply that I am scared of losing control because of what I saw as a child.
All other things being equal, those who can control their thoughts and actions will, as a consequence, achieve more of their dreams than those who do not. I have never understood the desire of people to escape reality with drugs and booze. Giving over to the loss of self control can not change the reality of life – no matter how harsh it may be, it can only damage one’s self esteem.
Insecurity has remained with me throughout and is responsible for my conservative approach to life.
It does gives me pleasure to see my adult children having more self confidence in their approach to life than I had.
In 1953, I began secondary school at St Kevin’s College, Toorak, a Christian Brothers private school and a year later, I had to leave the scouts because dad bought the holiday boat at Eildon and I had to traipse off with them most weekends.
To get to school, I rode a bike to the railway station and caught a train to Burnley. From there we walked up St George’s Road to the school. This was a new world of uniforms and uniformity policed with corporal punishment. I believe that no boy avoided this corporal punishment via ‘the strap’ applied to the open hand or across the bum in his education by the Christian Brothers.
We were even policed on the trains. Kids would be reported by commuters for not wearing their school cap or not giving up their seat for a woman and offenders were called to account at general assembly before class began. A roll call was a daily event so truancy was caught out every time.
I recall a time when a few senior lads wagged it for a couple of days with a few senior girls from Genazano convent in Box Hill and were duly berated before the assembly and ceremoniously expelled from the college. It was about five years later when the Principal who had expelled those boys was called to account himself for messing with one of the mothers of a student.
This was my first awakening to the bigger world. I was mixing with kids from other secondary schools on the train and, at St Kevin’s, the kids were mainly from the upper classes being the sons of lawyers, judges, doctors and bookmakers. This was a pretty awesome environment for the son of a butcher – such was my parent’s desire to give me the best education they could as neither of them had gone on to secondary school.
Located in Toorak, there were some wealthy families who had their boys educated at At St. Kevin’s. One that comes to mind was a lad named Leo Fitzgerald who was driven to and picked up from school in a chaufferred Rolls Royce. At Lunchtime, the Rolls would enter the schoolground and Leo would hop in the back to eat a home cooked silver service meal laid out on a folding table – much like in an aircraft. Now, that’s wealth!
Academically, I did well but, due to my small size, competitive sports were out of the question. On sports day, I took tennis lessons on centre court at Kooyong being taught be an ex-Davis Cup player.
The school had professional chemistry and physics laboratories equal to any that a tertiary institution might have. I believe that Brother Saul made a major discovery in the development of penicillin in those laboratories.
I remember a prank where a jar of sodium or phosphorous was stolen and dropped into the Yarra from the St George’s Road Bridge causing a traffic stopping explosion. Yes, it was the last day of the school year and the kids responsible were not coming back the following year. That was one win for the students!
In my last year at St Kevin’s, 1956, I had no idea what occupation I was suited to and I was hopeful of finding out when an employment councillor came to the school. However, all I got from him was, “Well, if you have no idea, why not do what your father does”. Thanks for nothing! … and I became a butcher for the next 19 years.
I was completely bored with school and left when I was 15 having completed Intermediate (Year 10), the recognised leaving age for those not destined for University. I recall the school asked me to return halfway through the following year as the “Intermediate” results showed that I had finished in the top 10 in the state.
I didn’t go back and I have to ask what might have been had I continued. Probably with a little encouragement, I would have continued … but them’s the breaks!
All three of us (Neville, Greg and Stephen) were educated at St Kevin’s. In Stephen’s last year, term fees were $30. The following year, the school went public alongside Xavier and Scotch College and the fees immediately rose to over $300 a term.
The misadventure’s of Stephen
During his time at St Kevin’s, mum was President of the Mother’s Club mixing with the ladies of The Establishment and Stephen got in with a crowd from Scotch College and St Kevin’s who were stealing their own parent’s cars and joyriding. Stephen was not yet 15 so that dates it as 1962.
I was 20 and came home around midnight to find dad and a couple of other father’s and the police discussing what was to be done. Apparently, Stephen was driving with a mate on board and they overtook a police car whilst negotiating a left hand turn. They were pulled over and the cops drew a gun on them – probably to scare the living bejeezes out of them – and uncovered the extent of the game with more than 30 participants from St Kevin’s and Scotch. In the end, no charges were laid.
They were devious. Another kid damaged his mother’s Jaguar on a lamp post on one of his exploits. Next morning, the little villain asked if he could get the car out for his mum to drive him to school. She agreeed and as he backed it out, he ran it into the side of the house to cover for the damage of the night before .. and got away with it at the time.
Thereafter, Stephen was a marked man and took a hiding from the other kids involved. It became so severe, that mum was asked to remove Stephen from the school. And so ended Stephen’s formal education and mum’s involvement in the Mother’s Club. After all she did for our schools, that must have been very damaging to my mother.
It would have been 2 years after Neville’s death in 1960 when this story unfolded and goes to show how kids can go off the rails in time of family distress. When Neville died aged 24, Stephen was only 13 whilst I was 19. As mum and dad learned to live with the death of their first born, family and friends were dutifully comforting mum and dad. Looking back, there was no comfort offered to us two boys. It was alright for me with teenage friends and a girlfriend but Stephen was just a kid and there was no counseling available back then. He was left to his own resources and it all went wrong for him. In fact, Stephen spent the rest of his 42 years living on the fringes. There was nothing inherently illegal in his activities but he kept getting burned in the search for ‘easy money’ – the type that committed no crime but could source anything from ‘the back of a truck’.
And I put it all down to the consequences of Neville dying at that particular time.
Music – the glue of youth
I started learning the piano living at Ringwood around the age of ten. We had a piano that was played by mum at parties and she wanted me to learn too. For about five years, I was taught both theory and practice playing classical type music. I never did get the hang of playing popular music like mum did. I was taught by Miss Fish who lived at Mitcham. until I started secondary school where I learned from the nuns ay Croydon and Box Hill convents. I can still knock out a few tunes like the theme from ‘The Sting’ and ‘Fleur De Lise’.
Before television and indeed before record players, cassette tape, CD or DVD, the piano and the piano accordion were the major source of entertainment for parties. People ensured they invited a piano player and everyone would gather around to sing along to the music. It was a great form of entertainment.
If you could not play a piano, there was always the pianola – an automated piano that used a roll of punched paper and a reading mechanism to cause the piano to play, very professionally, all by itself. The pianola had sliding doors that revealed the playing mechanism and, at the bottom, it had fold out organ pedals to provide the driving mechanism.. A ‘song roll’ was mounted up top and, as you pumped the pedals to build up the air pressure, it rotated the music roll over the reading head. As the air pressure passed through the punched holes – each hole being a single note – as if by magic, the piano played the song with the keys being played bouncing up and down as they would with someone actually playing the piano. Uncle Arther and Aunty Bess had one of these and we loved visiting so that we could play the pianola … and, even better, have some of Austie Bessie’s renowned boiled fruit cake.
In my teenage years, dad bought me a guitar at the Croydon Market. This was when Rock & Roll was in its infancy. After work, I would take a tram to Hawthorn and take lessons from Neil Rule. It was here that I got my first ‘gig’ playing on the caravan industry float along with a fellow student, Gary Newton who ultimately made a career of music playing the electric bass for ‘The Hawking Brothers’, Australia’s premier Country and Western Group.
We were pretty competent and under my leadership, we started going places. For the first time in my life, I was accepted for my skills rather than being shunned because of my size.
George Parker, a friend of dad and an (illegal) SP bookmaker,, gave me the steel or Hawaiin guitar that he had played in his youth so I tracked down a teacher at the LouTopanoMusicSchool in St Kilda. I cannot recall the name of the teacher but he was a top musician for the next 20 years.
In the back shed at Balwyn, a few of the local lads would get together and play the current rock music of the day. Of course, we had plenty of girls hanging about to meet the boys and enjoy the music. I guess the music became the hub of our social network.
By the time I was eighteen, we had formed a band and played regularly at the Syndal Hall on a Saturday night. This was the launching pad for a few ‘wanna-bes’. The members of the band were pretty fluid being those who wanted to play this coming week. The band went by different names including the Magnetones and The Strangers – later to become one of Australia’s better groups into the 1970′s.
The (fluid) band had a great gig during the snow season playing at the Happy Valley Lodge at Falls Creek. We never got paid – we did it for free accommodation and free skiing. That was big time because skiing was strictly for the rich in those days. We would bunk down in the ceiling space of the lodge which was covered in mattresses – installed primarily for insulation of the lodge.
In the 1960′s and 70′s there were no entertainment venues as the pubs closed at 6.00 pm. Consequently, there were few opportunities for young bands. It was restricted to Saturday night dances with an odd one on Friday or Wednesday – and there were the illegal nightclubs …
We played at “The Blue Angel” located upstairs on the corner of Smith Street and Gertrude Street from about 10 pm through til about 4 am. It was a dimly lit venue that served drinks and had illegal gaming (mainly cards). The girls serving the drinks were prostitutes. The Club had a signalling system to avoid prosecution by the law.
They stairway was about 800mm wide so they had a giant of a man stationed at the top of the stairs. At the bottom, they had another guy whose job was to warn of police activity. If the local police looked like entering, he would press a button and the only white light in the place would flash slowly. When that happened, it was business as usual. The local cops would come in and sit down. The girls would pour them a drink which they drank – in full uniform – and when they were through, they would leave.
If the police were from the vice squad, or suspected of being so, the white light would flash rapidly. That was the signal for the big bloke to slowly walk down the stairs to buy time. He was so big that nobody could get past him on the stairs. By the time he had reached the street to let the police in, the girls had removed all signs of alcohol and the gambling was all packed away. The place was ‘clean’ by the time the police entered.
We knew a member of the vice squad socially who would warn us in advance of the raids so we never got booked. I asked this man why the police did not shut these places down. He explained that there was no point as they would simply open elsewhere and they would have to find them again. Under the current regime, they knew where they were, who their customers were and regularly carried out their raids and made a few arrests to satisfy society that they were doing their job. They felt they were keeping the operators in line and that society was being protected from the evils of booze and gambling.
I drifted away from the music scene after Neville and Cheryl died and had given it up by the time I married Maureen. But even then, I was still involved running a couple of dances in the Ringwood area. As it turned out, Maureen was the best ‘bouncer’ (crown controller) that we ever had. As trouble erupted, she would get aqmongst them and give them a tongue lashing and they would calm down. It was amusing that, as they entered and paid their entry fee ($0.75), they would call her “Mum”.
We were pretty innovative with that dance. creating disco effect stage lighting that was all manually operated with someone switching lights on and off to the beat of the music – the electronic age was still twenty years away!
Having become an observer of life, I learned a lot about crowd manipulation in running that dance. I took the role of ‘offstage announcer’ and learned to manipulate the crowd to the point of frenzy over some unknown band just playing a Beatles Number. It showed me that the ability to manipulate was a powerful weapon and that ‘peer pressure’ can be used for both good and bad. The way religious sects manipulate young minds that are still developing is an evil use of this power. I have learned that it is better to be a leader than a follower. You can only be one or the other – those who question their peers will eventually leave the group to go their own way.
By learning to play an instrument, you become a leader as your friends and their friends want to enjoy the music and the social activities of the group. S/he who plays music will never be lonely.
Since then, there has always been a guitar in the house that I seem to only ever play when I am alone.
Back in the eighties when the family lived at Warranwood, the young bloke opposite eletctric guitar and amplifier one Christmas. He started learning how to play this thing and with a distortion pedal, which was all the rage in the heavy metal era, it sounded woeful. I asked why he played such crap and he said it was “to pull the chicks”.
I picked up his guitar and played a ballad which had his mother swooning. I told him that was what he needed to do to achieve his goal. Well, about a year later, he came to me and told me that he now played love songs and ballads too … and that my advice had been right.
I was once asked why I still played the guitar and piano into my later life. I replied that there were only three reasons why we play music:- 1. To seduce a beautiful woman; 2. to get a free drink at a bar; and 3. to be good enough to achieve number one or two.
Music is the great leveller and being able to play an instrument opens up new social avenues – particularly for our young people.
Cheryl – as I remember her
In 1958, the family moved to Balwyn. I was 15 going on 16.
I left school in 1957 and had not yet formed teenage relationships back in Ringwood. That came upon the move to Balwyn. The initial point of contact was at Mass every Sunday and that is where I eventually met Cheryl and her girlfriend Mary Wilson. I also met Peter Gardiner who became a groomsman at my wedding with Maureen. This was the seeding point of my teenage social life.
As the social circle grew, I became part of the Balwyn teenage scene that gathered in the township of a weekend. We had two picture theatres, two coffee lounges, a Saturday night dance and a squash court based sports centre. We would also walk about 5 kilometres to swim in the YarraRiver.
Without planning, we would individually go to the movies or a party at Helen Chamber’s place, or whatever and Cheryl and I simply gravitated towards each other as we were not as outgoing as some of the others. Being so young, we were not “going steady” at that time because I was frightened and Cheryl was scared. It took at least a year before we were ready for that.
The change began with our first formal date – a St Kevin’s reunion ball held at Manresa Hall in Hawthawn in 1959.
It was the first time that I had met the whole family in their home. Our families knew each other to say hello to through the Church and the butcher shop. However this was different.
When I called to pick her up, I was let in by Cheryl’s father Ted and was duly questioned as one would expect. After all, Cheryl had not been out on a date before and, for that matter, neither had I. It was rather uncomfortable.
As I waited for Cheryl, Ted asked to see my socks. I raised my foot and he ripped off my shoe and sock telling me my socks were not real flash and he promptly threw it in the fire. As I waited for Cheryl, I sat there, suitably embarrassed, with a bare foot wondering what was going to happen next. He eventually got me a new pair of socks after being told off by his wife. As he was in the trade, this was probably one his trade jokes
When Cheryl finally appeared with her mother, she was stunningly beautiful in a blue ball gown.
This was no ordinary first date – it was our first step out into the world together beyond our comfort zone and away from everyone we knew. Cheryl had been transformed from the fifteen year old girl next door into a princess. I pinned a corsage of flowers on my Cinderella, kissed her on the cheek, and off to the ball we went in a taxi – and so began the most poignant relationship I would ever experience.
From that time, we were ‘going steady”. Whilst we remained part of the local scene, we were readily accepted into each others family going on family outings and I remember coming to Euroa with Cheryl’s family to visit her grandmother for the weekend. I remember spending a great amount of time at her home, just hanging out, without needing to go anywhere.
But that all changed when I got my license in June 1960. We were never home – it was off to the rock dance we run at Syndal, the drive-in movies every week, picnics at the weekend, parking in the dark by the Yarra, or simply just going for a drive alone or with another couple in the back seat.
I recall one night at the drive-in when we went to sleep and did not wake up till about 2 am (shades of the Everly Brothers song, “Wake up little Suzy”). We thought we would be in awful trouble as the norm was to be home before midnight. But nothing happened.
On Melbourne Cup Day, 1960, Cheryl and I had been on a picnic to the LatrobeValley. Upon arriving home about 6 pm, I was met at the door by the Parish Priest, Fr. Jim Shorten, who took on the task of telling me that Neville had died at Eildon. Our family’s world naturally fell apart.
Within a month, Cheryl was diagnosed with a tumour on the brain and underwent a 12 hour operation where they shaved her head and cut a trapdoor in her skull. For the whole time she had to remain conscious as a marker should something go wrong. Within a fortnight she came home to recuperate.
I was devastated when told that she would not survive more than a few months. When I was asked by her mother to help make her remaining time happy, I did not hesitate. I so wanted to share the rest of her life with her. In faith, I prayed she would recover. In despair, I prayed that I would go too.
Every morning, I was welcomed by her smile and her love. She never tired of me. She confided in me, I confided in her. We cried together, we laughed together and we dreamed together. In that short time, we grew so close together.
In a few weeks, Cheryl was strong enough to leave the house and, with a custom made wig instead of a scarf to cover her scars, we went everywhere and did everything we could imagine. I remember one day we were just going for a drive and I asked where she would like to go. She said “Let’s go to Sydney” and it was about three hours into the journey before she called the trip off. I have no idea how we would have been able to find somewhere to stay overnight being so young. That sort of thing just wasn’t done.
The hardest thing we ever discussed was our future. It was so difficult because we both knew it was impossible. We only talked that once about her dying in all its tragic detail. It began with Cheryl saying, “With all the attention I am getting, you would think I was going to die”. We looked at each other and we both knew that the other knew the truth and we cried. In spite of that, we planned for a September engagement after she had turned sixteen and I had turned nineteen. That day we said forever and our souls were bound in a vow.
Too soon, it came to an end.
It was Thursday, Mar 23, 1961 and I was sitting on Cheryl’s bed talking with her. This day, we were to go shopping for the material for a bridesmaid’s dress for her cousin Marie’s wedding.
She was not feeling well that morning. Around 10 am, as I remember, she went into convulsions. I called out to her mother to come quickly. The screams were dramatic and her manicured nails cut into her clenched hands. Remission had ended and she slipped into a coma. She was taken by ambulance to Prince Henry’s hospital and we were told that her time had come.
That was the last time I saw Cheryl alive.
Two days later, I went to visit her around 6.00pm but I was turned away. I drove home crying to receive a call from her mother to tell me she had passed away on 25 March 1961 about the time I was at the hospital.
I never felt so cheated in all my life.
I saw her once again in her coffin, at a local church before she was buried. She was so beautiful with no signs of the stress she had been under. Her skin was waxy white and looked artificial. As I bent down to kiss her one last time, the coldness of her lips thundered through my soul as I fully realised she had gone. It was more than I could handle and I broke down crying. I was consoled by her mother.
I swore to her that I would never forget her – but I did, for over forty five years, when Cheryl began appearing telling me “it is time to come with me”
When I first received that message, I was confused. It took three attempts to get her message through and it was not fully absorbed until I had to face my mortality. I tried hard to rationalise it away but, having called on God as a witness so many years ago, I gladly take responsibility for the promises made.
There is no doubt in my mind that Cheryl has come back for me.
This is the definitive story of Cheryl as I remember her. I have been careful not to colour the story as I remain answerable to her for promises made during her final illness. I am pleasantly surprised with the detail of events that have been recalled.
As David suggests, first love is powerful but usually ends up in broken hearts. In this case, it ended on a high or, maybe, it never ended.
I now realise this tragedy was life changing for me setting an expectation for relationships that could never be achieved.
That realisation may help to explain how I felt, at the outset, that my marriage to Maureen may not last into old age. Did I expect too much, did I recognise a weakness, was it unresolved issues from my childhood or was it because I was previously committed? Possibly all four.
Whilst I have said that I forgot her “for over forty five years”, that is not entirely true. The reality is that the relationship had such a profound influence on me that it became a reference point in every chapter of my life.
As I now read this story, I am overcome with the immaturity of youth. Having lost Neville so recently and with Cheryl about to die, it never occurred to me that her parents, or mine, would be struggling with the loss of their child. All that mattered to me was the need to share her remaining time with her. Selfishness or selflessness? – too long ago to know!.
25 January 2010
… and then they shot The President
In Post World War II Australia, life was meant to be easy and everyone knew their place. Kids went to school, their dads worked for the one employer for all of their career, their mums were at home keeping the family functioning. To a teenager, the Prime Minister – Bob Menzies – had always been there and Pope Pious XII and Archbishop Mannix had always been the leaders of the Catholic Church … and then they shot The President.
Australia was for Australians and whilst we encouraged the British to emigrate with 10 pound sea voyages to Australia, we had the “White Australia Policy” to keep the yellow peril out. It worked like this … unwanted immigrants were given a language test that they could not successfully complete. If they were Asian, they would be asked to speak Gaelic or some language they knew nothing about. African negroes would be expected to speak Chinese or some other language. It was very effective and the country was pleased with the end result … and that is what we were taught in our schools.
We had no real problems with aborigines. They were suitably contained in areas such as LakeTyers in Gippsland well away from our cities. There weren’t all that many of them and we had a national policy of assimilation. By helping their children learn our ways, they would more readily assimilate and eventually they would breed their race out of existence by marrying white Australians. The ChristianChurches sent missionaries to preach the faith and to find homes for the unwanted aborigine children. Every year, we were given missionary collection boxes in our schools to help finance the work of the missionaries … and that is what we were taught in our schools.
After the trauma and hardships of World War II, there was a sense of community where we all had the same memories and expectations of life. There was no shortage of employment and when we left school, we took a job. People who took council or public service jobs were considered to be those with no talent or motivation. Those not married by the age of 18 for girls and 24 for boys were considered inadequate or queer (gay). We did not discuss sex, politics or religion as these topics could cause dissention.
Then we started bringing in European immigrants as we were short of skilled tradesmen to modernise Australia. We brought in Italians from the slums of Naples, and families from the Baltic States. We housed them in concentration camp conditions without barbed wire or armed guards. They joined the construction industries and layed concrete and built infrastructure such as the Snowy Mountains Scheme. The fact is, they were refugees, just like those from the middle east in this new century, and our parents knew it! As children, we were warned against them through the fear of the unknown. We had to tolerate them because we needed the manpower. To counteract this fear, they were promoted as new Australians … and that is what we were taught in our schools
Along with the Dutch, the Greeks, the Poles and a few others, the fact remained that they were different to Australians. War in their homelands had eroded their standards. They had been downtrodden at home and were being exploited here. Is it any wonder they took every advantage they could in their new country. As their numbers grew, their determination to succeed surpassed that of the Australians. They were prepared to work harder and longer. They owned their own homes sooner than we did. The Wogs were everywhere and they were eroding our lifestyle and taking our jobs. Australian governments reacted by refusing to recognise professional qualifications from European universities. When they had needed the physical manpower earlier on, qualifications had not been a consideration.
Over the ensuing years, we have been urged to be tolerent of other cultures and to accept the differences with our traditional society. Try their food, learn their languages and marry their children. We call this “Multiculturalism” … and that is what they have taught you in our schools.
It seems to me that the meaning of multiculturalism and assimmilation are rather close. But it does seem strange that we seem to attract people from monocultures and wonder why they can’t fit in.
On November 23, 1963, the Sun News Pictorial carried an announcement that Greg Naylor had became engaged to marry Maureen Morrissey. That date has remained with me because the very same newspaper announced that JFK, the President of the United States, had been shot. They say that you always remember what you were doing when momentous events occur. I was shaving first thing in the morning and listening to the radio as it announced the assassination. I was struck numb! The world had lost it’s innocence and we knew it.
From that day on, the people of the world lost faith in the future. Politicians and businessmen have become blatently self serving. Statesmen no longer exist. With the advent of computers and the Internet, censorship of the masses has become redundant and we are exposed to the weaknesses of mankind like never before. In my mind, the assassination of J.F.K was a more monumental tragedy than the terrorism of September 11.
Until then, the world was naive. It accepted the status quo. It honoured world leaders as statesmen. John Fitzgerald Kennedy was seen as a statesman. Since his assassination, and the revelation of the causes behind it, we have learned from Malcolm Fraser that “Life was not meant to be easy”. Now, 40 years on, I believe the deterioration in our moral and ethical standards passed the point of no return on the day they shot The President.
The lost years
After the shock of losing my brother Neville in 1960 and my girlfriend Cheryl in 1961, I have always maintained that the next year or so is a complete blank. Lately, however, after reliving Cheryl’s last days and meeting up with a couple of friends from that time, some of the pieces are returning to my memory.
Primarily, they centre around the girls I knew in Balwyn and my attempts to get past the losses in my life. Whilst I had been shy with girls, the memories that come to me now indicate that the girls were certainly not shy with me. Maybe that is why it was locked away from my conscious mind.
I was a member of the “All Hallows Younger Set”, a youth group at the Balwyn Catholic Parish. As the only one with a car, I would drive a carload of girls home after the meeting. I recall dating a few of them. I recall viewing one, Lyn McDermott as a potential partner and courted her for some time. I recall driving the girls home one night when the last girl on board came on strong. She was a lot of fun but not a potential partner. She lived about a hundred metres from Maureen and didn’t want to let go even when I became engaged to Maureen.
A bet over a girl
The most exciting memory is of a new girl in town named Mary Darling. She had a great body for a seventeen year old, pretty with black hair and was very outgoing.
Amongst the town’s youth was a blond headed, well groomed, handsome guy named Vern Myers who attracted girls without even trying – a real chick magnet who boasted of his conquests with the girls. One Sunday afternoon, our social group were at the Yarbatt Ave sports centre playing snooker and Vern was mouthing off that he would be the first guy in town to bed Mary Darling. He was being so obnoxious that I challenged him claiming he was all talk and I bet him $10 / 5 pounds that I would beat him to it. Vern accepted the bet.
A month or so went by and the challenge was on. I was getting on fine with Mary and we went out a few times. As I said, she was rather outgoing and enjoyed a bit of messing around. But, how to get her to bed was the difficult part.
I turned to the local “Fonz” – Barry (Bubsy) Winchurch whose greatest prize was a stack of summons for carnal knowledge (sex with underage girls). He devised the following plan. He tutored me well.
The coming weekend, Mary Darling was having her friend Maureen Drum stay over with both girls sleeping in the same room. As it happened, Maureen Drum had the hots for my best mate, Jimmy Munday. So, having driven Mary home on the Friday night, I told her that Jim and I were going to jump in her bedroom window at 2.am the following night and to leave her window open. To my surprise, she agreed.
At midnight, I went to pick Jim up from the El Greco coffee shop for this adventure. I found him rotten drunk, drinking rum and coke. He would swig the rum and then swig the bottle of coke. There was no way I was letting him near these two girls so I took him home and put him safely to bed.
At 2.00 am, I arrived at Mary Darling’s bedroom window and had to explain Jim’s absence but I was still invited in.
Following the local Fonzie’s advice, I removed my shoes and turned them upside down in case it rained (true) and proceeded to get in the window and into bed with Mary Darling.
The danger of getting caught with her parents in the next room was probably as potent as thethrill of being in Mary’s bed with her. Over the next hour or so we romped together in her bed, constantly being interrupted by Maureen Drum, who kept asking “What are you doing now?”. Suddenly panic set in as Mary’s father’s footsteps approached the door – but then passed on by. A minute later, we heard the toilet flush and he walked back down the hall to his bedroom. We began to breath again.
Not only did I put Vern Myers back in his place but I had a witness who spread the word which didn’t harm my reputation with the girls either. Although I won the wager with Vern, I never actually won the bet – rather it was Mary. She was aware of my confrontation with Vern and was determined not to become another of his trophies.
Whilst my memory is rather patchy on this, it seems that Barry Winchurch, the Fonze that I sought advice from on the above escapade, went on to know Mary a little better than I did. Because of his predatory reputation, Mary’s parents shipped her out of town to a relation’s farm in Northern Victoria – maybe to Guy Darling’s vineyard in Whitfield? – to get her out of harms way. However, Mary took off and returned to Balwyn to camp with Barry. It was all too much for him and he took her home to her parents before he got himself in any deeper trouble.
About this time, there was a couple in their thirties living next door. The lady was pregnant and came knocking on our door as she was in labor. I was designated to drive her to St Georges hospital in Kew where she was booked in to give birth.
At the hospital, I carried her suitcase and helped her in where the nurses took her away and told me to stay in the waiting room with her suitcase.
An hour or so passed when a nurse came in and told me I would have to fill in the admission papers. Suddenly. The penny dropped – they thought this eighteen year old was the father of her baby.
Embarrassment all round!
Raising a family
In the aftermath of the death of Neville and Cheryl, I was very unsettled. Life centred around death and I feared not living beyond the 24 years of Neville.
In 1961-2, which I have described as “the lost years”, I became a bit of a tart mixing it with the local girls. Some girls are for playing with whilst others are for marrying. Maureen was definitely the marrying kind.
She was not part of the Balwyn teenage social fabric. Interestingly, all the girls I had been seeing came from the same neighborhood – primarily from the Winmallee Road district.
I had seen Maureen at Church on Sundays and she began working for the Balwyn Florist in early 1961. She walked past the butcher shop every morning and gave me a smile. In the afternoon, as I went to the bank, I would walk past the florist shop and give her a smile back. Soon, I was calling in to the florist shop to talk with her. Then, I began driving her home after work which let to asking her out.
Maureen was aware of the double tragedies of Neville and Cheryl and I think she felt sorry for me. Her employer and my mother were lifelong friends, and through that friendship, Maureen was aware of the impending death of Cheryl. She actually worked on the funeral flowers. Years later, I learned that Ursula had been encouraging Maureen to go out with me – probably a conspiracy between my mother and Ursula.
Maureen was attractive, and came from a large Catholic family. She had not been out with boys before and was ‘as pure as the driven snow’. Whilst I have no idea where we went, our first date was memorable because, when I knocked on her front door, Maureen’s mother answered the door. In my cheeky manner, I introduced myself and told her that I had come to take out her sister. I won Mavis over instantly.
We used to go to the theatre to see musicals like The Mikado, My Fair Lady or Camelot. We went to Rock Concerts to see some of the stars of the day like Ricky Nelson. Maureen was a regular at Eildon waterskiing and sunbathing. We frequented class restaurants in the city and generally had a great time.
The romance blossomed and when it became apparent that making plans for the future were afoot, Maureen panicked and pulled back claiming some space. I was not easily deterred and within three months and a bevy of love letters to her, we were back together again.
When I asked Harry, her father, for permission to ask her to marry me, he said, “Are you sure you know what you are getting?” Was he being sarcastic or did he understand her better than I did?
So, I asked myself, What was I getting?”. I was getting a girl who loved me completely with a strong moral and ethical background, from a family that was much closer than mine and she was bloody beautiful too.
“What was I giving?” I offered her everything I was and could be. My love for her was unquestionable.
“What was I not prepared to give?” I could not burden Maureen with the darkness of my previous experiences dating back to my childhood because I felt she was too naïve to understand and she might have rejected me because of it. I chose not to tell her these things as I needed her love – not her sympathy. I later grew to regret that decision.
And “What was I missing out on?” . I was missing any show of public affection. We never walked hand in hand. She was always one step behind me – even throughout the marriage. To Maureen, public perception was critical. At that time, she looked very much like her older sister Dawn who was now married and pregnant. It upset Maureen that people might confuse them in the street.
We were engaged on November 23, 1963 – the day President Kennedy was assassinated. (US 22 Nov 1993) – we both got a mention in the Sun newspaper that day.
By the time I met Maureen, I had stepped back from playing in the band. However, we began a dance in Ringwood and Maureen became the best bouncer (crowd controller) that we had. When trouble broke out, she was in the thick of it all giving the troublemakers a tongue lashing. Amazingly, they always backed off. It was amusing to note that as they entered the hall, they would pay their entry fee and say, “Hello Mum” to her.
Harry Morrissey had five daughters and one son. The tradition of the time was the bride’s father paid for the wedding (dress, flowers, reception, the lot!) and Harry approached us offering money to elope but Maureen was having none of it. The big wedding was the only way to an acceptable way.
We were married on 7th August 1965 at AllHallowsChurch in Balwyn with a lavish reception at Rowallan in Burwood.
After a two week honeymoon in the Blue Mountains and skiing at Falls Creek, we set up home in my family’s holiday house at Seaford until we could save enough for a deposit on a house.
By the time David was born, nearly two years later, we had bought our first home in Kilsyth. We arrived there with a bedroom suite, a washing machine, Maureen’s glory box which I had made, and an esky. We hung sheets from the windows for privacy and had no floor coverings. They were humble beginnings.
Maureen was a good home maker and soon acquired the necessities of life and I built a lounge room suite and a coffee table. I came home from work one day to find a brand new fridge. Maureen became frustrated living out of an esky and went to Hannan’s furniture store and told the salesman she needed a fridge but had no money. He said if you have $2, you can have a fridge – and so we worked the hire-purchase system to buy things.
After David was born, Maureen’s health deteriorated culminating in a spine operation. Her back problem first raised its head well before we were married. A Balwyn doctor, Dr Rush, gave her an injection into the spinal column to try and relieve the pain. I suspect that he inadvertently damaged the disc that later would lead to the laminectomy.
It was certainly exacerbated by giving birth as, after Anthea was born, she was advised to not have any more children less she end up crippled. This problem affected all our lives dramatically.
Complications began immediately after the operation when an outpatient of the hospital attempted to rape Maureen the day after she had surgery. It was quite comical in one way as the man had recently been circumcised and every time he got an erection, the pain knocked him to the floor. Still, not what you expect in a hospital.
For three months, Maureen needed supervision and went to stay with her sister, Lorraine for some of that time whilst David was parked with my Mum and Dad. Lisa was with her mother at Lorraine’s place and Anthea was not yet conceived.
When David was born, I recall Maureen had a very long labour – maybe 20 hours or so – and it took a lot out of her. Lisa came much quicker but she was a bit overcooked and we were worried that she might have contracted scarlet fever (I think). Anthea was a completely different story.
A few months into the pregnancy, Maureen was threatening to abort and was rushed to the New Mercy hospital. It was so new that Maureen was patient number 5 and, for a few hours, they lost track of her having put her in a wing of the hospital that had not yet been opened.
Her case confused her gynaecologist. The baby was originally expected in July but, after her stay in hospital, they said the baby would be born between August and October. It was explained to me that she probably miscarried not long after conception a few months earlier and became pregnant again immediately afterward. This was how they explained the variation in the date of expectancy.
Anthea was born on her mother’s birthday, 18 September 1971, having only made it to The Mercy with less than half an hour to spare.
Both Maureen and Anthea have a spiritual connection with that miscarried baby and believe it to be a twin girl to Anthea whom Maureen has named Adele. Now, I’m a bit peeved that I have not had the opportunity to connect as well. All I can do is try.
As parents, we did pretty well. Coming from stable post war families, we had our own ideas on how children should be raised. However, we were also fortunate to have the advice of a child psychologist friend, Jack McLaughlin, who had messed up his own family. He stressed the importance of giving one’s children a consistent set of standards that they could rely on and grow up to question. That is one piece of advice we lived by.
When the kids would test us out and we didn’t have an answer, we would go to another room to resolve the issue and come back with a united stand. When they played the ‘peer pressure’ card, we simply reminded them that they came to live with us and that we make the house rules. We gave them all the love and encouragement they needed to grow up in a good family environment. Raising our three children safely to maturity is my greatest achievement in life and, I expect, Maureen would feel much the same.
Whilst we were happy with our parenting, our marriage broke down after 24 years. Overtly, it appeared that Maureen brought it to an end but, whilst that was true, the lifelong effects of not having confided in her before we were married played an important part in the marriage breakdown.
In recent times, I have worked through this with Maureen. In doing so, I found that I had never stopped loving her which is probably why we have remained friends over the last twenty years. We are now able to put aside our differences and reminisce about the good things of our time together. I am satisfied that I can go to my grave knowing that she will not think any worse of me than I deserve.
About family and friends
A letter to my grandchildren …
You are reaching an age where your whole world seems to be changing. I know, because I have been there.
As you become more independent of your mum and dad, you are being exposed to many things that they protected you from. I know, because your mum was once your age and together with Granny we learned a lot about growing up. That is what makes a family. As families grow, we learn more about life as each child grows older.
Putting all of that together, I want to pass on what I have learned about life from the experiences I have had since your mum was born.
First, we have to understand how the framework of our family makes us who we are. Our family provides us with a set of standards – or expectations – that we live by. We learn right from wrong, the types of food we eat, and the clothes acceptable to our parents. In short, our parents teach us how to become independent and how to make our own choices as we become adults.
You see, the expectations that your mum has are defined by the expectations that Granny and I had for your mother. The expectations that your dad has were a bit different to what your mother had because he had different parents. So, your mum and dad had to work out the differences so that the way you turned out was acceptable to both of them.
So, what makes you different to your siblings (brothers and sisters)?
Well each child has ‘different’ parents to the other kids in the family. I don’t mean different people – I mean they have different ideas. We never stop learning and when the first child is born, we have no experience in raising children. When the second comes along, we have the experience of the first child to draw upon – and our ideas change. Similarly, our living and employment conditions alter as times go by. We may become richer or poorer, we may be in good health or poor – the variations are limitless and our expectations change.
You are at the threshold of becoming independent. It is right for you to question the way you were raised so that, when you have kids of your own, you will be able to teach your own children about the things that are important to you.
Next you have to understand the importance of friends and how they help you become a better person.
Take a look at your friends. They are a lot like you and they like many of the same things you do. They come from families that are much like your own – some are better off than you whilst others are worse off than you. -1
Sometimes, a friendship changes. They may do something that is not acceptable to you; or they may go in a direction that you are not prepared to follow – and that is how friends fade away out of your life. You see, your friends reflect the upper and lower expectations that you hold for yourself.
Now, let me make one thing very clear – peer pressure is dangerous.
As you enter adulthood, your friends can have an influence on you that is hard to handle. This is known as ‘peer pressure’. It is hard to handle because it is in conflict with what you have learned. The problem is that if you stick to your principles, you may lose the friendship. On the other hand, if you join them in this experience, it puts you in conflict with the standards of your parents. Don’t be frightened to lose a friend. You can always get ananother friend … you cannot get another family.
My advice is to never give in to peer pressure because it robs you of your own identity.
As the world opens to your new found independence, you will be tempted to try new experiences that you cannot determine to be good or bad. You will make some choices that are wrong and, when you learn the consequences of your actions, you will chose not to do that again.
By all means, make your own mistakes and learn from them. Never do something because everyone else (your peers) is doing it. If you do that and get yourself in trouble, you will have let down your family and friends and they will no longer support you. On the other hand, if you make a mistake through your own choice, your family and friends, who understand you have made a mistake, will still support and care for you.
The greatest thing I have ever learned is that there is nothing that can replace the relationships you build throughout your life.
1.What’s the ideal number of friends?- an interesting online article on friendship”It’s the number of people that you know as persons and you know how they fit into your social world and they know how you fit into theirs. They are a group of people to which you have an obligation of friendship.”
A letter to our grandchildren …
Till Death us do part … a great ideal that everyone strives for but few achieve in the true spirit of marriage. Having been divorced myself, I congratulate the few I know whose relationships have endured and grown throughout their lives.
Looking back on the generations, there were just as many broken marriages as there are today. In times gone by, many families were held together because of the social standards of the era when, in fact, they were marriages of convenience only.
In my parents’ time, divorce was only available on the grounds of adultery. For those brave enough to seek a divorce, they often had to forge evidence of infidelity to get a divorce.
In those times, it was difficult for a woman with children to support herself as the social norm dictated that the man was ‘the provider’ whilst the woman was the “the home maker”. I recall Dad saying with determination, “No wife of mine will ever have a job” – that would be a threat to his role of provider! Women were intimidated into submission as a result.
If you read the article, “Nana – the early days”, you will see that the relationship between my mother and father left a lot to be desired. In fact, their marriage failed twice. The first time was in the seventies when Mum started to smoke cigarettes. Dad’s response was to withhold money so that she could not buy cigarettes. It then went to a court order for maintenance and finally to separation where Mum came to live with Maureen and I at Kilsyth. Probably that was not the real reason for the split but that is how it was manifested.
The second time was when dad was suffering from prostate cancer and Mum spat the dummy declaring she could not look after him. She shipped him off to a nursing home against his will. In both cases, I was involved in bringing them back together again.
In her story, Mum tells us she came from an emotionally retarded family whilst Dad came from a broken family where his mother was killed when he was about ten years old. To prove his own worth, I believe he sublimated in his own marriage with a public display of family life. As an example, I recall asking him why we had to go to Mass every Sunday and his response was, “What would people think if we did not?” The show of unity was more important than the reality.
This is blatantly obvious where domestic violence and/or wife bashing occurs. I believe the only relationship problem that cannot be overcome is domestic violence – if someone is brought to the point of violence once, it will happen again and there can be no justification to continue the relationship. Every other problem can be resolved if both parties want it to be so.
I have often wondered who gets hurt more – kids of a broken marriage – or those of a parents living out a marriage for the sake of the children – or worse, for the approval of others.
Having survived a failed marriage where we simply went in different directions, I have drawn my conclusion about intimate relationships.
As we physically change from children to adults, the chemistry of procreation brings us together and we make the commitment to lead a family life. Now, whilst we both come to that conclusion at the same time, it does not automatically follow that we are both traveling life’s journey at the same pace. As the kids grow and careers develop, one can easily grow more rapidly than the other and they simply grow apart. In others, different family expectations get in the way of intimacy.
In my own case, we should have separated earlier as our children now tell me they knew we would not stick together way before we did ourselves. Some time after our marriage breakdown, I discovered how much of myself I had forfeited for the sake of the family and revelled in my new found freedom. As I developed new relationships with other women, I also discovered there had been a lack of true intimacy in my previous marriage. Was that a result of growing up in a similar environment? …probably! We have to remember that we are only responsible for half of a relationship as we can not – or should not try to – control the other person.
The tragedy of this is that, as children, we only know what we have seen and the hurt of our parents becomes embedded in our young minds. We do not learn until later in life that we do not own our parents problems. In spite of it all, the most enduring relationships we have remain with our parents and our children
When I grow up
I never did work out what I wanted to be when I grew up.
My first recollection of career came when I was in primary school when I decided that I wanted to be a priest. Having been born during WWII and learning the horrors and the futility of war, my young mind reasoned that they don’t shoot priests and I would be safe if there was another war.
My next recollection came in 1957 as I was approaching the end of year 10 when those not destined for university left school to get a job. St Kevins brought in an employment counselor to help those of us who had no career direction. He asked what I wanted to do and when I told him that was why I was talking with him, he asked what my father did. When I told him that he was a butcher, he suggested that I go work with him until I figured out what I wanted to do.
So, I did just that and it took me the best part of ten years to work out that being a butcher was just too boring. Cutting meat was so boring that I had to turn it into an art form to keep my sanity. But I guess that is what process working is about – from butchery, factory work through dentistry – it was not me!. So, I took a twelve month course in “Creative Selling” and ventured off to become a door-to-door salesman selling Electrolux Vacuum cleaners. I failed to earn enough to support a family and went back to the butcher shop. I was prepared to stay there as Dad had intended to hand the business over to me when he retired. During this time I managed the shop and learned livestock buying at Newmarket saleyards.
Having been bitten by the sense of achievement in making sales, I took a part time job selling World Book Encyclopedia after hours. In the butcher shop, the sales and marketing skills I had developed were applied to selling meat and we became very innovative in marketing something as basic as meat. Dad would later tell others he regretted not letting me have my way with more of these ideas that, at the time, seemed revolutionary to his thinking.
Anyhow, with new health regulations making it too expensive to make the shop compliant, the shop was sold and I still had no idea what I wanted to do when I grew up. I had no meat trade certificate as Dad was anti-authoritarian and refused to let me do an apprenticeship. By now, I had also studied for the Certificate of Business (sales) at Swinburne Institute so I took a sales representative’s job with Redic Industries.
I was particularly good at selling industrial chemicals and in my second year was promoted to the middle management team in charge of Industrial Chemicals. This was during the boom times of the 1980′s and the owner of Redic Industries (now known as Resitech) started buying other businesses and my role was to incorporate them under the corporate umbrella. In 1987, the company was listed on the stock exchange and, with the outside influence of the board, the three managers who had built that business from $2 million turnover to more than $40 million p.a, were replaced by young university graduates. Between the three of us, we held the corporate knowledge of the company with a combined 25 years of experience. Once we were gone, there was nobody left with more than two years experience and within five years, the public company folded with the proprietor hanging on with the Seasol business and his distribution of Belzona Molecular products out of England.
I still had no idea what I wanted to do when I grew up and, according to the business wisdom of the day, I had now past my use-by date and found it difficult to gain employment. I stayed within the industrial chemical industry for a few years and got involved in some leading edge technologies.
I ventured out into business manufacturing and distributing Xypex (I bet you cannot pronounce that!) concrete waterproofing compound in partnership with a colleague from Applied Chemicals. The business was a year old when it was discovered that my partner was an undischarged bankrupt who disappeared leaving me with a $12,000 debt and a defunct business. That was a low point in my working career but I learned that there is always someone out there who will take advantage of and live off the good standing of others. The lesson is that in starting a business, never be dependent upon the goodwill or promises of others. If the business venture is viable, do it on your own – avoid partnerships as your partner will never have the same ideals or ethics as you have.
In 1991, whilst working as a sales representative in the Industrial Maintenance industry, I was exposed to a process known as metalizing – in effect a method of galvanising large structures in situ. Having been burned in my previous attempt to start a business, without the financial resources to make it happen, I worked in conjunction with existing organisations to bring the concept to Australia. But, once again, when the business was flourishing, the American company I was working with tried to cut me out of the picture. As I was backed into a corner, I resolved to protect my knowledge and customer base and to design and build my own equipment to continue in this industry.
It was probably the best achievement of my working career when I designed and constructed a machine with no prior experience when that machine not only worked, it set a new standard in the metal spraying industry for portability and reliability. This equipment supported Pauline and I for about 10 years.
Economic conditions changed and the call on metal spraying diminished. By now we were living in Whitfield and without much work, I took a job as an adult education manager with the King Valley Learning Exchange from 2000 to 2002. Once again, I was damaged by internal bickering and false accusations.
The following year, I started labouring work in the King Valley Vineyards and enjoyed it immensely. As a casual seasonal worker, there were no people out to bring you down or try to steal your job and I found that working outdoors is very relaxing. Having been a butcher, a salesman, a maintenance worker, a middle manager and an inventor, if I had my time over, I might just have chosen to work on the land as I have for the back end of my career.
The women I have loved
I have been privileged to share my life with four remarkable women, each at the right time in my life and each leaving an indelible impression on my soul.
I have already written extensively about the ‘teenage sweetheart’ and the way that has been remembered. I owe it to the other three to express my feelings, interpretations, and appreciation of their contributions to enriching my life.
Having recovered from the loss of Neville and Cheryl, I found Maureen … or maybe she found me. She was a beautiful, slightly aloof young woman working in the local florist shop. I went out of my way to call in and see her and soon realised that she went out of her way to make sure that I did. Romance blossomed and we were married in 1965.
Individually, we were emotionally miles apart … whilst I was seeking love and affection, I felt Maureen was seeking responsibility, respectability and a bountiful life. Even as we committed to marriage in sincere love for each other, in my heart I felt that I would never grow old with her.
The early years were hard with babies being born, a mortgage on a new home, and at a time when I had an identity crisis. I did not know if I held my job in the butcher shop because I deserved it or because I was the boss’s son. I studied sales and marketing at Swinburne Institute and broke free of my father to make my own way … and initially failed. I returned, cap in hand, to the butcher shop and Maureen stuck with me through those lean years. In 1978, dad put the butcher shop on the market, and I broke free again taking a commission only sales agency in the chemical industry and was very successful.
This led to a ten year career in middle management through the boom years of the 1980′s and provided a level of income that allowed us to participate in the material world. What we didn’t see was that whilst that career gave us an ever improving lifestyle, we were gradually growing apart. Around 1988, it all came tumbling down when my career ended, Maureen’s father and brother in law both died, and David left home to go to university.
This was a defining time for Maureen who withdrew into her shell for quite some time. When she ultimately came to terms with it all, she had reasoned that there had to be more to life than this and whilst she didn’t know what that was, she did know that I was not going to be part of it. We finally separated in 1989. We had been together for twenty four years and had successfully raised our three children to maturity.
Maureen went on to become a civic leader in local government and made a real difference in her community. I am proud of her achievements and am grateful that we have remained good friends in spite of the fact that we have gone our separate ways.
In the middle of my life, I was completely alone. The children were now adults, their mother was gone and I had no responsibilities to anyone but myself. It was about getting on with life, meeting new people and living new experiences. That is when I met Jenny, the most self indulgent nymphomaniac one could selfishly wish to meet.
For more than a year, we cavorted together and experienced the joys of the flesh to the ultimate. It was a beautiful time and I wish such an experience upon everyone ready to accept it.
The Soul Mate:
In the early 1990′s, I met Pauline at a ‘Grab-a-Granny Nightclub’ – a venue where single middle aged people congregate. We talked – we danced – and found some common ground. I gave her my phone number and invited her to call me if she wanted to meet again. It was New Year’s Day when she called and we have been together ever since.
Like those before her, Pauline came from a vastly different background again, but as we became more involved, those differences were absorbed by the other and we found that we had become soul mates. Unbelievable … is how we expressed it. At our wedding reception in 1994, the best man, John Staub (lifelong friend) revealed how he had asked why I was marrying this woman at this stage of my life. My response to him was that I had found a woman who accepted me entirely for what and who I was without questioning the imperfections.
We moved to Whitfield in 1999 and have experienced some wonderful and devastating times together. Yet, we have remained true soul mates. I know it has been tough for her to adjust to this more remote style of living that I love so much and, at the same time, I know she will stand by me for the rest of my life. I love her completely.
Today she is my carer as I travel on this journey and I could not imagine being with anyone else at this time. I can only hope that my spirit will be with her when her time comes.
I am thankful to each one of them for being allowed to share their individuality and to experience a range of human emotions that I could never have achieved in one lifetime with one woman. I have loved them all.
Written by Lee
20 September 2013 at 5:50 am
Posted in abiraterone, ALTERNATE TREATMENTS, ambulance, androgen, anti-cancer gene p53, antiandrogen., Assisted suicide, bone cancer, bovine cartilage, brachytherapy, breathing, Cabazitaxel, carer, castration resistant, chemotherapy, cyprostat, DEATH, deprivation, Diet, erectile dysfunction, estrogen dominance, external beam, Game Change, Greg Naylor, Health, hormone refractory, hormone therapy, hospital, humour, Immunotherapy, incontinence, information, lactoferrin, media release, MEDICAL, MEDICATION, Metastasis, my fight, myth, oncology, opiates, palliative, PERSONAL, Peter McCallum, poem, progesterone, PROSTATE CANCER, provenge, psa, quality of life, radiation, radical prostatectomy, right to die, robotic prostatectomy, sarcoma, social comment, spirituality, surgery, testosterone, TREATMENTS, TURP, Urology, vascular lymph invasion, watchful waiting
I have deliberately delayed updating my health condition for the past few months due to conflicting symptoms I have experienced and the tests needed to resolve the reasons for these symptoms. I needed truthful answers to present here in this post rather than jumping to conclusions
What follows here is not a self-pitying diatribe but an example of what a cancer patient might experience following diagnosis, then primary treatment followed by regular monitoring. Every cancer patient has a heightened awareness of any changes that may indicate a return, or an advancement of the cancer. A cancer patient has a mental fear of any advancement of their disease and it is easy for their mind to go to dark places with every increase of side effects or any new symptoms that appear.
The mental stress that is felt must be dealt with in a positive way and answers to any new health aspects must be dealt with in a practical and sensible fashion. This will involve visits to the doctor and/or specialists followed by any blood tests and scans that may be indicated. It is only when these have been completed that true answers may become available.
I have been experiencing periods of extreme fatigue for a couple of weeks followed by a period of a few days of feeling normal and reasonably energetic. I have been having real problems stabilising my body temperature over the past five weeks with numerous hot and cold flushes throughout the day and night. However the real worry for me during this time has been the increasing pains and stiffness I am experiencing from the upper leg area through to the pelvic area and the lower back.
The past five weeks has seen me with unsettled sleep as I fight imaginary demons and temperature inversions.Some nights insomnia due to the aches and pains drives me out of bed in the wee small hours. My nightly visits to the loo have increased over this time and I am now up and down about four times a night attending to urination duties.
Soooo…. Off to the doctors and specialists I went, time and again during the past month. I have had a multitude of blood tests and scans. The results of all this investigation is as follows.
Since completion of my radiation treatment I have remained on ADT medication and my PSA has stabilised at 0.03, the latest result was in July so this indicates the cancer is under control (Good news).
I have been diagnosed as having another mild attack of prostatitis and I have been prescribed antibiotics for this (Crappy news).
I have now been diagnosed as a type II diabetic and I am now on medication for this, plus modifying my diet and daily monitoring of my blood sugar levels. I have also been prescribed a statin for lowering my cholesterol which is high ( Crappy crappy news).
Bone density scans have confirmed I now have a condition known as osteopenia a prelude to osteoporosis. This is a known side effect from the ADT treatment and I have to up my calcium intake and monitor my density more closely (More crappy news).
My liver function tests were through the roof (this was a real worry as I was thinking mets.) However further blood tests and scans revealed a diagnosis of an enlarged fatty liver. Now this problem can be serious and is mostly caused by the chronic use of alcohol. It can also be caused by a genetic condition known as haemochromatosis, which is an excess of iron in the body. As it happened my iron levels are very high and may indicate this condition, however the genetic test for haemochromatosis is only available through Medibank after two consecutive high iron readings (Crappy, crappy, crappy news).
I have been known to enjoy an alcoholic drink from time to time and so the doctor has advised me to abstain from drinking alcohol to rescue my liver. This advice was given because even if Haemochromatosis is evident the alcohol combined with this condition is not a good habit to continue with.
Right now I feel like I am sitting on the dock of the bay……..watching the tide roll away. Eighteen months ago I was a happy-go-lucky beer drinking reasonably healthy human being with no prescription drugs.
Today eighteen months down the track my cancer journey has caused me to retire from my profession and become a pensioner. It has taken away my ability and desire for a satisfying sexual life. It has given me fatigue that comes and goes, a muddled brain from time to time, aches and pains along with stiffness. It has given me temperature inversions that drive me insane at all hours of the day and night. I now have to adjust my diet leaving behind some of the foods I have enjoyed all my life and to cease enjoying a beer or glass of wine. I am now required to prick my fingers several times a day to monitor my sugar levels and record them in a diary. I have some minor incontinence and an intimate knowledge of toiletry requirements and hygiene. I now have a handful of medication pills to administer daily and four monthly injections of my ADT medication to look forward to. I now have the risk of bone breakage without warning and finally, I also live in dread of the cancer returning to finish what it started.
Now it would be easy for me to get lost in a pessimistic haze over all this, rant, rave and shake my fists at the heavens for sending me this plague of locusts and boils. However I think of those wonderful inspirational people I have found who have given me new insights that enable me to be optimistic and give me hope. Andy Ripley was one who I wrote about some time back and my previous post introduced Harry Pinchot to you all who has shown me that having cancer can offer many opportunities.
Adversities like cancer, the other mixed bag stuff I am dealing with plus many other dire plagues of boils and locusts I have yet to experience have strengthened my character and soul. These things have allowed me to re-evaluate my self, my loved ones, my spirituality, the world in which I live and the rest of humanity. In summary, I am finding out much more about me as a person and where I fit in the scheme of things called life than I would have otherwise.
Such is life said Ned Kelly…………..and so it is………….I can still manage a smile………just takes a while……….just takes a while……and I still choose life over the alternative………….what an adventure.
Lee aka Popeye
Written by Lee
4 August 2013 at 12:11 am
Posted in erectile dysfunction, external beam, Health, Health, hormone therapy, incontinence, information, Lee's Page, MEDICAL, MEDICATION, Metastasis, my fight, oncology, PERSONAL, PROSTATE CANCER, psa, quality of life, radiation, TREATMENTS, Urology
Well the songs are banging around in my brain like a bunch of old blues numbers creating an earworm. “Won’t you cry me a river,…….. cry me a river,……I cried a river over you” or “You must remember this, a kiss is still a kiss, a sigh is just a sigh,….The fundamental things apply,……….As time….. goes….. by.” Ah Play it again Sam.”
I had read about the mental anguish that can accompany a patient when nearly all primary treatment for prostate cancer is completed and life goes on. Seemingly, the only thing treatment wise, happening for the patient is a three monthly PSA test and more than likely a periodic injection for continuing ADT. However the lack of any major future medical goals provokes these blues attacks and for very understandable reasons.
It has taken me 12 months down the track to arrive at this point in my little journey. Now here I am all treated out, apart from continuing ADT and wondering where the hell I go from here. I have not seen my GP or Urologist for several months, I am in need of my next eligard injection which I fortunately have a script for (The last injection was given at the radiology clinic) and I am now back home released from the radiologists care. Where do I go from here ??
I have issues with my Urologist that I am not happy about and I was constantly thinking up excuses not to phone and make the appointment that I knew deep down I really should make. I feel like giving him a miss completely, but he is all my country town really has to offer a prostate cancer patient like me, as unfortunately the only other Urologist in town may have some issues with me. My last GP had fled from the area some 9 months ago but I do have a good option to see the doctor who owns the family practice. So into the GP I go and after a little chat he advises me to do the thing I really knew I had to do.
So there I was, three weeks later in the urologist waiting room clutching my 4week overdue eligard package. I had spent the previous couple of weeks worrying about the results of my PSA test and wondering if the numbers may have risen slightly. The question is always in the back of a prostate cancer patients mind, has the PSA gone up?? Has the cancer become castrate resistant and is on its merry way ??? There are no guarantees for any of the treatments in this game because given enough time all prostate cancer will progress despite ADT.
To a prostate cancer patient, life can seem to revolve around waiting outside a doctors door for the bad news you do not want to hear. You already know the cancer will get you in the end if you don’t die from something else first. However, onward you go, wishing for the good news every time the door opens and then back to managing your disease until the next time. Prior to this visit of mine to the Urologist I did consider shutting up shop completely, meaning no more ADT, no more Urologist, no more pathology and just get on with my life for as long as I could. To my mind this would be like walking away from the door and throwing off the chains of the side effects of the ADT drugs.
However, here I am and into his office I go…. Before I even sit down, he is reading the riot act to me about “I have a rule with all my cancer patients that they see me regularly and at least every three months in the worse case.” So I bent down, picked up my bag, turned and took a step toward the door. “What are you doing???” He asked. “…….I am leaving” I replied and then my wife and carer sprung into action to diffuse the situation . Nette let fly with news of our past 4 month stint and that we had kept his office up to date with progress, he on the other hand had sent us nothing. She then asked me to sit back down.
The rest of the session did not improve when I informed him that my wife and I were considering leaving private health insurance for financial reasons. This news was not received well from his side of the fence as he failed to conceive that a pensioner could not easily find $5000 per year for private health cover. His last word on the private health dilemma was to offer me the advice that I might consider having a subcapsular orchidectomy ( surgical castration ) to help out with future costs. I received my eligard injection and the good news that my PSA was still 0.04, he asked me to have a bone density test and PSA test and to make an appointment with his secretary for June.
I shook my head as I closed the door trying to work out how surgical castration may help or save me money in the long run. I am sitting here writing this post a week later and I am still pondering his suggestion and wondering what I will do with myself. Oh and by the way, I haven’t made the next appointment yet.
Lee aka Popeye
Written by Lee
6 April 2013 at 10:04 pm
I have been thinking about writing about this subject for some time now but have hesitated in placing pen to paper for a number of reasons. I have searched everywhere for background material on these issues, and in almost all cases I have been succesful in turning up technical information only. While the different sites and the information they contained was invaluable, I felt there was an imbalance for what I personally needed.
Apart from technical stuff I was also seeking the human experience of cancer patients and their carers dealing with Anxiety and Depression. I was hoping to establish some comparisons and perhaps insights I could relate to when dealing with my own demons. Sadly I found little of value available.Without going into great depth along technical lines regarding Anxiety, Depression and Suicide the following facts should be kept in mind.
1) Anxiety and Depression in cancer patients is 25% higher than in the healthy population.
2) Suicide rates in cancer patients are double those in the healthy population.
3) I could find no figures for anxiety,depression or suicide for carers of cancer patients.
Before I begin my own tale of some of the view from my place I would like to apologise to those that may think I indulge in self pity. What I write about next is combated by me with alternate ways to think that keep me on the best positive track I can manage. I am not vegetating feeling sorry for myself but remain as cheerful, active and optimistic as I can.
Advanced prostate cancer is what I have and since it came along I feel like I have lost control of my life. The road from my diagnosis till now seems like it has been all down hill health wise. Not from the cancer mind you but from the effects of the treatments I have had. The only effect the cancer gave me was in the beginning with urinary problems that led me to my GP in the first instance.
After diagnosis I began ADT (hormone therapy) and suffered (still do) all the side effects of this treatment. I underwent a TURP (re-bore) and suffered the known side effects of this procedure plus a bout of bacterial prostatitis that took months to clear up. I completed radiation therapy just prior to christmas and experienced the known side effects from this plus some bowel issues.
I would have liked to have continued an intimate relationship with my wife but that has disappeared along with my dangley bits. I have finally overcome incontinence for the moment after almost ten months of embarrassment. I would have liked to continue working for a bit longer except for the loss of mental capacity and the ability to focus on more than one task at a time. The fatigue and weakness would not have allowed me the ability to last a full working week in any case. However I am of pensionable age and am getting by OK. Chores and projects around the house now have to fit in with my health time table of manyana.
Dark thoughts come and go at strange times, sometimes when I am out walking sometimes when watching TV. Dark dreams steal inside my head while asleep and awaken me in the night. I try not to discuss these with my wife for fear of burdening her with more concern.
Muscle weakness leads to pain and stiffness that magnifies into more dark thoughts. Breathlessness accompanies exercise or exertion and sometimes for no reason at all. Coughing spasms erupt that began a few months ago and no cause was found by a CT scan of the lungs. Pain arrives during sleep either in my back, my hips or my legs and keeps company with the dark dreams and then mysteriously goes away.
My dark thoughts and dreams are really my fears. I fear my cancer will progress and the down hill slide continue. I fear I will become a burden on those I love and respect. I fear the helplessness and hopelessness of incapacitation. I fear the loss of my identity and independence as a person.
I deal with these fears that come as dark thoughts by letting them run their course through my head. I then deliberately run through my present position and remind myself of the following. These are only fears and thoughts, none of this has happened yet and I do not really know if they will. At the moment I am OK and dealing with this and things are manageable. There is absolutely nothing I can change about the past. This thing called cancer is what I have today, right here and now. S0 I choose to change the way I think about the fears right then and there by not letting them dominate and dictate how I am living today. The future will be what it will be in its own good time.
All that is written above is some of the view from my place. Unfortunately I can only guess at what dark dreams and fears my wife and carer must endure and how she managers to cope. It is probably about time someone, somewhere investigates these issues on behalf of the thousands of carers doing it tough out there.
Lee aka Popeye
Written by Lee
18 March 2013 at 11:39 pm
Posted in antiandrogen., Assisted suicide, brachytherapy, carer, chemotherapy, erectile dysfunction, external beam, Health, hormone therapy, incontinence, Lee's Page, oncology, palliative, PERSONAL, PROSTATE CANCER, quality of life, radiation, radical prostatectomy, right to die, robotic prostatectomy, social comment, surgery, TURP, Urology, watchful waiting
The past two posts published on this site, discussed issues surrounding prostate cancer screening and treatment. Debate is still raging throughout the world with study results quoted and decisions made creating mayhem among patients, medical practitioners and supporting associations. It seemed timely for me to add my thoughts on these issues and offer my opinions for discussion to anyone interested.
In my mind I think the actual term of prostate cancer screening is misleading for Australians as it implies that the male population is under some national program to regulate screening for this cancer. Eg mammograms, breast screening etc. There is no national program, you will not receive a written invitation from the government.
Screening for prostate cancer as I see it applies to the use of the PSA blood test and DRE examination. Both of these procedures are available to all men at the invitation of the GP or the request of the patient to the GP and would be better termed prostate function testing.
For better or worse the PSA and DRE procedures are the only common simplest testing available to men at this time. The PSA test comes in for heavy criticism on many fronts but is still the initial test that rings the alarm bell. So until research is able to find an improved substitute for these tests we should continue to use and improve the tools we have.
There are many forms of prostate cancer and each mans cancer is different. Some low and medium risk prostate cancers (Gleason grade 6 or 7) may never cause any health issues while some will turn aggressive and will be terminal. When low and medium risk prostate cancer has been diagnosed we have no way of determining if the cancer will remain indolent or will become aggressive. Improved research needs to be done in this area to find a way to better define the cancer that has been diagnosed.
Initial primary treatment for prostate cancer includes surgery, radiation, ADT drugs and/or a combination of these. Primary treatment can save your life or help manage the illness for those with aggressive prostate cancer. The price of this treatment can include either temporary or permanent side effects with urinary and bowel issues, including incontinence, erectile dysfunction, fatigue and a whole range of effects from the ADT treatment.
The considerable side effects of primary treatment for prostate cancer and the difficulty in determining between the prostate cancer that will kill you and the one that won’t is at the heart of the conundrum. Many men with low to medium risk cancer will elect to be treated who may not have needed primary treatment in the first instance.
There is another option for men diagnosed with low or medium risk cancer and that is with active surveillance over a period of time. In this case the patient and doctor will continue to monitor the PSA levels, conduct a DRE with follow up biopsies if needed on a regular basis. Further action could then be taken if and when indicated by a change in monitored results.
There are conflicting study results available that state there is no mortality benefit in screening (testing) and other study results that state there is a mortality benefit of 20% with regular screening (testing). Regardless of the arguments from all sides, the fact remains that one Australian man will die every three hours from this disease! So with proper education and information every man should have the right to make his own decision regarding to get tested or not.
Memorial Sloan-Kettering Cancer Clinic operate a set of guidelines for prostate cancer screening that seems sensible to me and I re- produce it here as follows:
Our doctors recommend the following screening guidelines for men expected to live at least 10 years:
- Men aged 45 – 49 should have a baseline PSA test. If the PSA level is 3 ng / mL or higher, men should talk with their doctor about having a biopsy of the prostate. If the PSA level is between 1 and 3 ng / mL, men should see their doctor for another PSA test every 2 – 4 years. If the PSA level is less than 1 ng / mL, men should see their doctor for another PSA test at age 51 – 55.
- Men aged 50 – 59 should have their PSA level checked. If the PSA level is 3 ng / mL or higher, men should talk with their doctor about having a biopsy of the prostate. If the PSA level is between 1 and 3 ng / mL, men should see their doctor for another PSA test every 2 – 4 years. If the PSA level is less than 1 ng / mL, men should see their doctor for another PSA test at age 60.
- Men aged 60 – 70 should have their PSA checked. If the PSA level is 3 ng / mL or higher, men should talk with their doctor about having a biopsy of the prostate. If the PSA level is between 1 and 3 ng / mL, men should see their doctor for another PSA test every 2 – 4 years. If the PSA level is less than 1 ng / mL, no further screening is recommended.
- Men aged 71 – 75 should talk with their doctor about whether to have a PSA test. The decision whether to have a PSA test should be based on past PSA levels and health of the man.
- Prostate cancer screening is not recommended for men aged 76 or older.
A high PSA level does not generally mean that a man should have a prostate biopsy. A doctor will often repeat the PSA test after a few months to determine if it is still high and investigate whether there is a reason other than cancer that could explain why the PSA level is elevated.
In summary it will still be an enigma for a man diagnosed with low-risk Gleason 6 or medium risk Gleason 7 to choose his path. Does he run the gauntlet of risking possible side effects and choose a primary treatment. Or does he accept to play mind games for a while and choose to sit on the fence with active surveillance. That is the Question????? However it should be each mans right to supply his own answer and provide his own actions.
Here endeth my post
Lee aka Popeye
Further reading and reference
Written by Lee
25 February 2013 at 6:00 am
Posted in brachytherapy, deprivation, erectile dysfunction, external beam, Health, hormone therapy, incontinence, information, Lee's Page, PERSONAL, PROSTATE CANCER, psa, quality of life, radiation, radical prostatectomy, robotic prostatectomy, surgery, TREATMENTS, watchful waiting
So! I finally completed my course of External Beam Radiation treatment on the 21st December 2012. In my previous post “Radiation Therapy for Beginners part 1″ published on the 9th November 2012 I outlined as much technical stuff as I could about the treatment. I also gave an early report on the beginning of the treatment. The following information will round out my experience with this treatment and give some insight into my side effects and how I dealt with them along the way.
The side effects I experienced and how I dealt with them are as follows:
I developed urinary issues with increasing pain and frequency. I eventually began medication with Flowmaxtra pills and Ural satchels. These managed to get me through the course OK and a month after completion I am off both medications. It is interesting to also note that I have not suffered any urinary incontinence since completing the treatment.
My bowel habits became odd fairly early in the treatment and have remained at odds since completion. I developed what I describe as a lazy bowel syndrome, neither diarrhea nor constipation. It is described by me as a many visits to the loo in the hours prior to lunch with not much in the way of deposit apart from small skinny stools. There were no diarrhea like pains just normal urges to go. I was unable to find anything to ease this situation but as it was more a nuisance issue I just put up with it.
I developed consistent painful and stressful reflux and indigestion which threatened to be a real problem until I experienced a series of recurring dreams over three nights. I know this will sound weird but I swear it is the truth. For three nights in a row I had the same dream popping up more than once each evening and waking me each time. After the third night I gave in and did as the dream advised and that was to eat a raw garlic sandwich on white bread with butter????(Perhaps it was a prod from Greg. Who knows?) The reflux almost immediately eased back but I was to also change my diet from this point on. To give relief to those closest to me I dropped the garlic sandwiches after three days and started using probiotics to replace tummy flora and cut out red meat and increased my fruit uptake. (This sounds more like a prod from Greg.) The reflux has now almost disappeared with the occasional reaction due to poor food choices.
I experienced increasing bouts of nausea as the treatment went on. As I was treated on the Sunshine Coast there just happens to be a little town nearby called Yandina. Now situated in Yandina is a ginger factory that is a major tourist centre in this area.( Hooray) I happened to discover (through my wifes insistence) the friendly relationship between ginger and upset stomaches in the form of brewed ginger beer and what is called naked ginger pieces. I am so grateful for discovering the anti nausea properties of ginger and can recommend ginger to anyone having tummy problems. Ginger certainly helped me out with this one.
Fatigue was a huge side effect even apart from the fatigue caused by my ADT. As the treatment progressed fatigue grew in effect almost daily during the later stages. My only real options here were to walk for an hour in the early mornings when I had energy then nap as dictated by the fatigue during the day.
I have just received my latest PSA result since completing my treatment 0.04 ng/ml which is excellent, everything still on the level. My last PSA was taken in July 2012 and was 0.08 ng/ml. The Radiation Oncologist has advised he would like me to remain on ADT for at least the next 12 months and then reviewed. So I assume that apart from four monthly PSA tests and doctors reviews I will just get on with my life until either the wheels fall off somewhere or I end up celebrating my 90th birthday in 25 years time. I think I am actually in remission for the time being and I think Greg would be cheering.
Lee aka Popeye
Further Reading Radiation Therapy For Beginners Part 1.
Hullo to everyone and best wishes for the year ahead . My apologies for being late in posting news on this site but the truth is I am feeling a little jaded and have been, since the beginning of January.
I have included a terrible photo of my head and nose that should explain why news of my treatments, ( Yes it is now treatments plural) have been slow in being published. To put it simply “I am feeling pretty lousy lately” and I do not expect it to become any better for a few more weeks.I completed the radiation therapy for the prostate cancer on the 20th December and was due to report back with news and advice to this site as soon as I was able. However while I was being treated I was also referred to a dermatologist here at the Sunshine Coast in regard to my many unresolved skin cancers. The dermatologist removed almost twenty of them but my nose was a problem. I have had several previous surgery procedures over many years on my nose, the most recent surgery and skin graft in June 2011. This surgery has been unsuccessful and my nose it seems is one huge BCC. My options had been narrowed to complete amputation followed by a prosthetic nose or radiation therapy. Guess what I chose?????
I begun radiation treatment on my nose at the beginning of January just two weeks after completing radiation treatment on my prostate cancer. At this time of writing I am half way through the 30 sessions needed and I am feeling pretty ordinary. I will finish treatment on the 19th February which means I have spent almost 4 months away from home receiving radiation treatment at the Sunshine Coast Queensland. My time here has been great, the area is a sub tropical paradise with much to see and do. The accommodation has been first class with a two bedroom two bathroom apartment overlooking the Maroochydore River and Beach. However I have had enough and want to go home.
I had a PSA blood test done today, which is the first since July last year and should be a marker for me on how the IMRT stuff has gone as it is over a month since I completed the prostate treatment. I will be publishing the second part of radiation treatment for anyone interested in due time as soon as I have the PSA results and when I am feeling OK.
For those that may be interested, the treatment for the BCC on the nose has caused the following effects.
The whole nose, cheek and eye areas are inflamed and swollen.
The cancerous areas have been revealed and are clearly visible as crater like sores with scabs that keep lifting.
The nose is bleeding from time to time, both on the outside and inside.
The eyes are swollen, painful and itchy. I am trying to treat them with special drops. Keeping them open in any sort of glare is nigh impossible. They cement shut each night and need to be sliced open each morning.
I have special bedding sheets and pillow slips that need to be serviced daily.
Otherwise everything else is just fine and dandy, If anyone would like specific information on the radiation treatment for faces and noses let me know and I will be happy to pass on my experiences to them.
The radiation people here in Nambour have assured me that my nose will turn out OK and I will be suprised at how well it should look. I can only look forward to that.
Lee aka Popeye
July 24, 2012 — The cost of providing active surveillance for 10 years to a man with prostate cancer is about the same as the cost of initially performing surgery, according to an economic analysis published in the July 15 issue of Cancer.
The researchers estimated that 10 years of active surveillance costs $28,784 and that an initial radical prostatectomy — and the related 10 years of office follow-up — costs $31,612.
However, some other treatments for prostate cancer are much more expensive than these 2 options. The most expensive treatments include initial image-guided radiation therapy with short-term androgen-deprivation therapy (ADT), which costs $61,131 at 10 years, and long-term ADT, which costs $84,055 at 10 years.
Active Surveillance entails monitoring the cancer with everything except surgery, chemotherapy, hormone therapy (ADT) or radiation. Should the condition deteriorate, these options will be assessed and a treatment modality will be chosen.
The costs in this article are what Americans pay. It should be pretty much the same in Australia. Fortunately for me, I am a pensioner with a ‘Health Card’ which means it is rare that I have to pay for anything – including medications once I reach the ‘Safety Net’ expenditure limit. Being on a Health Card, I understand there are various treatments such as brachytherapy that are not covered under the Safety net.
Protocol and Individual Costs for Active Surveillance
|Urologist reimbursement for biopsy||433|
The protocol consists of an initial office consultation, 2 prostate biopsies within the first 3 months (diagnostic and confirmatory), pathology costs, professional & technical fees, prostate-specific antigen (PSA) values, and office visits every 3 months for 2 years and every 6 months thereafter.
As noted above, repeat prostate biopsy was performed after the second year of follow-up and every other year thereafter.
For the economic analysis, the researchers assumed that 7.0% of the 120,000 men on active surveillance will exit observation and receive treatment (in years 1 to 5), and that 4.5% will do so later on (years 6 to 10). In total, 30% and 45% will exit by years 5 and 10, respectively, which is in keeping with clinical studies.
In the analysis, the men exiting active surveillance were distributed between different forms of common treatment for localized prostate cancer, including (listed with associated probability) radical prostatectomy (40%), image-guided radiation therapy with or without ADT (25% and 10%, respectively), prostate brachytherapy (15%), and ADT monotherapy (10%).
In this post I would like to offer views on my experience with radiation treatment. I am currently at Nambour QLD, undergoing IMRT (Intensity Modulated Radiation Therapy) and what I have written here is part 1, as I have only completed week three of an 8 week course of therapy. Hopefully some time in the future I can complete part 2 when the treatment is finalised which should give a complete personal account to anyone who may be interested. To begin, I will offer the following technical stuff and will try to make it clear and simple, I will then attempt to describe my experience so far with the treatment.
How does radiation therapy work?
Cancer cells grow and divide more rapidly than many of the normal cells around them. High doses of radiation can kill cells or keep them from growing and dividing, and it has proven to be particularly effective in killing cancer cells and shrinking tumors. Although some normal cells are affected by radiation, most normal cells recover more fully from the effects of radiation than do cancer cells.
What is IMRT (Intensity Modulated Radiation Therapy)?
IMRT involves varying (or modulating) the intensity of the radiation (in this case, X-rays), being used as therapy for cancer. It is a new form of radiation therapy that uses computer-generated images to plan and then deliver more tightly focused radiation beams to cancerous tumors than is possible with conventional radiotherapy. With this capability, clinicians can deliver a precise radiation dose that conforms to the shape of the tumor, while significantly reducing the amount of radiation to surrounding healthy tissues. Consequently, the technique can increase the rate of tumor control while significantly reducing adverse side effects.
IMRT is a more precise form of radiation. It allows physicians to escalate the radiation dose to cancer cells, and in some cases, even more precisely to specific metabolically active regions within a tumor, while keeping the dose to surrounding tissues as low as possible. An analogy might be painting with a paintbrush as compared to using an airbrush and masking tape to protect outlying areas. The airbrush allows you to deposit variable amounts of paint in a highly controlled fashion. IMRT does something similar with radiation.
What kind of radiation is used in IMRT?
Currently, photons (X-rays) are used to deliver IMRT. The radiation is generated by a machine called a medical linear accelerator. This machine stands approximately nine feet tall, is nearly 15 feet long and can be rotated around the patient with great precision. Operationally, microwave energy, similar to that used in satellite television transmission, is used to accelerate electrons to nearly the speed of light. As they reach maximum speed they collide with a tungsten target, which in turn releases photons, or X-rays.
Very small beams with varying intensities can be aimed at a tumor from various angles to attack the target in a complete three-dimensional manner. In fact, IMRT can be delivered with beams the size of 2.5 x 5-millimeter pixels-the size of a pencil tip-each with varying intensity. The idea is to deliver the lowest dose possible to the surrounding tissue, reducing the chance of causing a radiation side effect, while still delivering the maximum dose to the tumor.
Does radiation therapy expose people to radioactive substances?
Many people, when they hear the word “radiation,” think immediately of radioactive substances. However, no radioactive substances are involved in the creation of X-rays or electrons by a medical linear accelerator. When a linear accelerator is switched “on,” radiation is produced and aimed directly at cancer cells. Then, like a flashlight, when the machine is switched off, there is no more radiation-none is “stored” or “transported.”
Personal experienced stuff:
Pre-Planing and Preparation?
Prior to the commencement of my 8 week treatment I underwent a procedure to place three gold seeds within the prostate gland. These seeds are solid gold, about the size of a grain of rice and are now a permanent fixture in my pelvis. Small tattoos were also inscribed, one on each hip and one on the front of the pubic bone. The gold seeds and tattoos are used in setting up the machine at each session to align the body and tumour so as to administer the dosage correctly. The gold seeds show up very nicely on X-Ray results which are taken prior to each session and the tattoos are used with laser light precision to align the body.
The procedure to insert the gold seeds is similar to a method of prostate biopsy used, where an ultra-sound probe is inserted in the rectum and the seeds are injected via needles through the bowel wall into the prostate. This technique performed without anaesthetic is not one of my most fondest memories of treatment I have received so far along my pathway.
What are the treatment sessions like?
Prior to every treatment you have to ensure you drink at least 600ml of water at least 30 minutes prior to treatment and your bowels should be clear.
Stripped to your undies shirt and gown and entering the room, your eyes are drawn to is this huge machine dominating the scenery. You lay down on a flat bench with your knees over a padded block and your feet inserted into a cushioned block. Assistants then position your body on the bench using the tattoos and laser lights to align you correctly. The neck and head of the machine hovers over you like some alien being. As a matter of fact one of my grandsons summed it up nicely after I explained it to him when he said ” Pop it sounds what being abducted by aliens would be like. “
The machine takes some X-ray pictures to ensure it is aligned with the gold seeds then proceeds to rotate around your body stopping every so often to radiate the area for seven segments in total. I felt nothing from the radiation and the treatment session takes about 30 minutes in my case.
What are the side effects like?
After only 3 weeks of treatment it is early days for any serious side effects to be happening, however I can report the following stuff that is beginning to show. I will follow this issue up more fully in my next post toward the end of my treatment.
I am back to urinating several times throughout the evening and with much more urgency throughout the day. I find I am planning my daily trips around the Sunshine Coast with public toilet access in mind. I am starting to feel the pain while urinating (only mild at the moment) that was so familiar and debilitating when I first became ill and after the TURP procedure in May .
My bowel habits have changed considerably with several visits to the loo at the beginning of the day and several more spread throughout the day. It is not like diarrhoea, nor like constipation, but more a lazy bowel motion and is just a nuisance at the moment.
Fatigue is still a major problem for me, but at this time I cannot say for certain, if I am more fatigued than normal as I am still on ADT treatment. Generally I will have a couple of short naps throughout the day and still manage to get to sleep by 9pm or 9.30pm. I am experiencing reflux constantly which is a real nuisance and I will be mentioning it to the doctor today.
To counter my fatigue and other issues I have begun walking approx 6km daily through to the beach and then take a swim in the surf trying to give myself some aqua aerobic exercises for leg strength. I have altered my diet slightly using probiotics and fresh fruit and cut down on my consumtion of red meat.
End of part 1
Lee aka Popeye
For those readers who are still following this site I would like to offer the following information. Greg and his family have given me their blessings for me to carry on with contributing to this tale of prostate cancer and its effects and treatments.
So the likely place to start is with an update on my health position at this time. In later posts I hope to offer latest news of treatments and various posts that may be of interests to readers. I will be endeavouring to write articles that come from my my point of view rather than trying to emulate Greg and his style. I am conscious of the fact that this site is not about me and my journey as the sole intent of the articles I write, but rather to try and bring together an interesting variety of subjects for all readers. This is not to say I will be neglecting my personal story as I will be updating my position from time to time as would be expected. So now to the business at hand.
Starting with my update. Since my last health report regarding my Turp operation and long recovery since May this year I can say that I am in reasonably good health at the moment apart from symptoms that have developed in the past month in relation to back pains, hip stiffness and walking issues. all of the infections I had in the pelvis and prostate have resolved and I am ready to proceed to the next level of treatment.
You may recall that from the very beginning of my journey I have been led to believe that my options were HDR brachytherapy followed by 5 weeks of external beam radiation. I have since visited the radiologist oncologist in Brisbane who has informed me that the HDR brachytherapy is no longer an option. This is because the procedure is now high risk as during the TURP operation over a third of my prostate was removed during the procedure making me at high risk for permanent incontinence. My options have now decreased to a full 8 week course of IMRT radiation at the hospital of my choice with continuing hormone treatment.
I have selected to be treated at Nambour hospital in the sunshine coast north of Brisbane and am due to begin on the 22nd October 2012. I will have my computer with me and will keep this site posted on my treatment.
You may remember that in a previous post I made reference to the ADT drug Anandron that I was taking daily and my suspicions it was causing me problems. This ADT drug was in support of the 4 monthly injected implant of Eligard that I am also medicated by. I mentioned that I suspected that Anandron was responsible for most of the rotten severe side effects I was having over the past 6 months. Well the specialist agreed to let me stop taking this drug and the result has been amazing, my well-being and quality of life went from zilch to livable almost immediately. I still have side effects from the Eligard implant but they are at least manageable. I still have hot flushes, I am still tired most of the time, some times worse than others, I still have minimum strength, I am still muddle-headed, my dangley bits have all but disappeared as has a lot of body hair etc. However these are all milder and easier to accept and deal with than the severe effects I had while on the Anandron medication as well.
My other health issues I have at the moment have developed over the past month and are a bit of a worry. I have developed aches and pains in the lower back, hips and legs. I am also having trouble walking with my legs having no strength and they sort of give way when I am walking, the effect is rather like wonky legs. I remember having similar wonky type symptoms 20 years ago when I was recovering from a back operation (Laminectomy) in 1992. I have had scans and an MRI done to try and discover what may be causing these symptoms and hope to get some results this coming week.
Lee aka Popeye