More on my 'Anger'

With the advantage of hindsight, I can now see [more clearly] why my anger surfaced yesterday. The simple answer is:

"I had reason to be angry". While true, this is not the whole story.

A possible answer:

"I haven't been processing my anger progressively and ran into the proverbial 'straw that broke the camel's back'"! Close but again not the whole story.

Another possible answer:

"Denial ... hmmm, this one could be on the money"!

But what have I been denying in regard to my anger? Or, to put it another way, what have I been so angry about that I have been unconsciously denying exists?

This is where it gets painful! I have unconsciously [or consciously] blocked certain memories, hurts, painful memories etc because I DON'T want to face them! Logical ... but NOT healthy! No one to blame here but myself. Now, this begs the question ...what is it that I don't want to face ... hmm? Well, two things spring quickly to mind:

1. My faith in God - This one, I'll deal with over at 'Out of the Shadows' in a later post. This, is very complex, and is related to ...
2. The overwhelming sense of failure I feel - Now this one has several facets.

Firstly, the overwhelming sense of failure that I now feel, is very closely associated with the 'Deep sense of Loss' which I previously wrote about.

Although I could go back and dredge up a great many 'failures' to satiate this need to understand where my sense of failure is coming from; I will resist that 'red herring' and instead go after the real culprit/s!

The latest gnawing in my gut; in relation to the profound sense of failure that I'm struggling with; I can assign chiefly to; 'my preceived failure as a husband and as a parent'!

At the moment, the glass is definitely 'half empty'! Try as I might, I cannot seem to get past the emotional response of guilt! I 'know in my head' ... that the guilt I'm feeling is out of proportion, and not the whole story.

It seems to me that I'm unconsciously doing a 'life audit' at the moment and [obviously] coming up short ... [so far at least] ... i.e. heavily weighted on the negative side! I should add at this point, that recent news regarding my 'prognosis' has left me more than a little flat and is undoubtedly responsible in some part for this phenomenon.

This, reminds me of the numerous times [as a Minister of Religion] that I have sat with the 'dying', while they consider their life's accomplishments and ask: "... did I do anything worthwhile with my life ... have I done enough ... could I have done more"?

Now there is no simple answer to that question. How can you weigh a life's worth? And against what standard would you attempt to do so?

In my case, why am I even considering something now, which usually occurs closer to death! Hmm ... now ... I think I'm onto something! Part of me, has 'had enough' and simply wants to 'end it'! Ah hah!

Well that makes sense ... after all ... I am dying right?!

Noooo!

At least not just yet! But I guess this latest phenomenon and my response to it, simply means I'm normal.

Not for the Faint-Hearted!

Now as I sit to write about the experience, I am immensely conflicted. I am angrier than I can ever recall being - at least for a long, long time. I am not sure that I want to continue on this train of thought ... I'm not sure that any good will come from it ... but here goes.

Well ... I have just returned from the Oncology Department and I must say that the whole procedure went about as well as I could have expected. Let me try to explain...

Firstly, the nurse assigned to liaise with, and support patients like myself, was once again 'missing in action' - at yet another conference! Result ... no one there to brief my wife or myself and we were left to blunder our way through the whole affair.

Then the registrar, associated with my case, decided to insert the canular herself and somehow forgot to apply a dressing, leaving the thing dangling from my hand. [I nearly ripped it out getting changed afterwards!]

Thank God for a friendly nurse, who was quite apologetic, and subsequently made up for the doctor's oversight.


Upon entering the procedure room, I was told that I was to be the first to use the brand new device which was about to aid the Radiation Therapist (RT) in inserting the 3 gold seeds - successfully. However, the machine was obviously NOT calibrated correctly; as, on several occasions the insertion became [literally] a hit or miss affair.

The conversation [right there in front of me] went something like:

"I want to put it there ... you see that mark? But ... no it's gone ... I can't see anything ... I just have to ... no ... see .. now that's not where I want to be! We'll have to retract and try again"!

All three seed implants were inserted using great skill but with limited assistance from the brand new, high tech, gadget that they were all bragging about just 35 minutes before! Not exactly inspiring or comforting stuff!!!

The RT afterwards, gave the whole process: "a 9 out of 10 for degree of difficulty"! I concur.

Apart from the technical problems encountered, it seems that I also have a large calcium deposit on one side of my prostate, [now they tell me] which made it exceedingly 'hard' to penetrate through to the gland.

However, as a result of his perserverance and remarkable skill the RT achieved a result of: "12 out of 10, in terms of degree of success"! A result which was subsequently confirmed by a follow up Xray. The Radiation Therapist (RT) who conducted the whole procedure was brilliant - I thank God for him.


Then there was the botched attempt to remove the canular. A trainee nurse decided that she was equal to the task, but unfortunately left me with a 'balloon' on the back of my hand after forgetting to apply pressure to the site while removing the canular!


Oh, and 'the ride back down hill', through the carpark [which was barely under cover] while Sydney experienced another unseasonal 'drenching'; might have been pleasant except for the 'maniac' who was driving [the wheel chair]! On at least two occasions, I considered jumping off and running off to one side to avoid a collision!! Not sure where the guys head was!


Then, finally arriving back in the Oncology department we were summarily 'dropped off' by the orderly (who was anything but) and then forgotten! It seems, we arrived back during the lunch break! I sat there semi-naked, while my wife played 'hide and seek' with the nurses!


I started out by stating that: 'the whole procedure went about as well as I expected'. What I meant was ... in my case ... 'Murphy's Law always seems to apply. If anything can go wrong [in my life] it will!!


Now, some of you may be thinking:

"He's finally getting in touch with his anger'! And ... "no doubt the account is exaggerated because of this."

Well, let me assure you, the account is both real and factual - no exaggeration needed!

As for the anger ... well, this is not the first time I have felt the raw emotion associated with feeling trapped in my present circumstances; but it is the first time that I have actually written about it [publicly]! My journal is only too familiar with my 'ugly side'!

More to follow when I calm down ...

Well ... I asked for it!

After a lengthy discussion with my Radiation Oncologist, I finally arrived at the 'unmitigated truth'. Call me crazy, but I prefer to know the 'whole' truth; rather than be kept in the dark - regardless of my care-givers good intentions! At least when you are aware of your true condition, you can begin the process of preparing for the various steps needed to address each challenge as it presents.

To be honest I was more than a little 'peeved' by my previous medicos (plural) attempts to 'gild the lilly' [aka withholding necessary information / lying] ... as though I couldn't handle the truth. At best, this falls under the category of 'misplaced good intentions'! Worse however, it is patronising and condescending; worse still it disempowers the patient and robs them of their ability to make the best choice and denies the whole process of 'informed consent'!

The truth is ...

1. There remains some concern as to whether the LHRH implant (Zoladex) is as effective as could expected; as my PSA reading should have been closer to '0' by now. It is worth noting in this context, that LHRH implants only block the testosterone produced in the testes; and this accounts for approximately: 90-95%. I recently had a further blood test to determine my current PSA level and also my Testosterone levels. This will be an aid to determining whether the current LHRH is effective.


2. Because the PSA level has not declined at a faster rate, it has been decided to introduce an anti-agonist (Anandron ie Nilutamide) as well. Anti-agonists act to block the testosterone produced by the adrenal glands thus affecting a 100% blockade of testosterone in the body. This will continue for some time, concurrent with the LHRH Implant, and is known as Combined Androgen Blockade (CAB).


3. I have been scheduled for an outpatient procedure to be performed at one of Sydney's premier Hospitals, in which the Radiologist will insert three (24 carat) 'gold seeds' into the prostate. This procedure is performed under a general anaesthetic in a 'day procedure' in similar fashion to the TRUS. An ultrasound-guided instrument is positioned via the rectum to implant the gold seeds into carefully selected regions in the Prostate.


4. Following this, there will be a recovery period of 24 hours and then a 'planning week' in which the Radiotherapy treatment is discussed and mapped out carefully. This involves several scans, computer mapping and precise targetting. It is vital that this process is precise as the likely outcome otherwise would mean damage to healthy tissue and organs causing long term [unwanted] side effects.


5. I will most likely continue on the Hormone Treatment for at least 2 to 3 years. This then gives rise to the possibility of 'bone thinning' [oesteoporosis) and so I have commenced a daily regime of Calcium and Vitamin D supplements.


6. The Radiotherapy will consist of a precisely targetted (thanks to the gold seeds), high dosage of radiation being applied to the prostate. A lower dosage of radiation will also be applied to certain bones and organs within the pelvic region. During the process the patient is restrained using various devices to ensure that NO movement occurs that can adversely effect the outcome.


7. My original PSA [84.8] coupled with a very high Gleason Score [9] along with the results of the CT Scan, indicate that it is very likely that the cancer has metastisised to other organs or bones. This makes a 'cure' much less likely. It is hoped that if such metastises exist they are only microscopic and can be eliminated by selectively targetting the most likely 'culprits' with radiation as part of the overall IMRT procedure during the next 8 weeks. The best option moving forward seems to be ... to address the primary cancer and to review my recovery by way of ongoing PSA tests.


8. While the prognosis of 5 years is still 'on the table' it is impossible to predict - see below.

As the Radiologist pointed out: "we only get one shot at this and so we will plan to maximise our chances of a successful outcome".


Clinical prognostic factors

The most important clinical prognostic indicators of disease outcome in prostate cancer are pre-therapy PSA level and Gleason score.

Patients with localised prostate cancer who have pre-therapy PSA levels of less than 4ng/ml and pre-therapy Gleason scores of less than 4 have an excellent post-treatment prognosis, with a disease–free survival of greater than 90% following either radical prostatectomy or radiation therapy.

In contrast, patients with pre-therapy PSA levels of greater than 20ng/ml [mine was 84.8] and Gleason scores of more than 8 [mine is 9] have a poor prognosis (less than 50% disease-free survival).

Survival rates for patients diagnosed with a prostate cancer that has breached the prostatic capsule is poor and patients with metastatic disease have the lowest predicted survival rates of all. One estimate shows that, on average, 46% of patients with metastatic disease die about 22 months after diagnosis, and approximately 70% of all patients diagnosed with metastatic disease die within 5 years.

Well ... I asked for it!!

** NEWS FLASH **

Doctor found guilty of 'gilding the lilly' ... pleads compassionate grounds!!

Full story to follow ...

Finally some Answers

Today, I took myself off to the Radiologist's surgery; armed with a page full of questions - the same questions that the Urologist (Dr J) avoided (for the most part). The questions looked something like this:

• What if anything, can be done about the fatigue?
  


• Should I be concerned about the 'shortness of breath'?
  


• What about the dizziness?
  


• Should we consider addressing the cholesterol level at this time?
  


• What about the ... 'blood in the ejaculate'?
  


• What can I do about the 'hot flushes'?
  


• Um ... ah ... what about ... um ... 'breast tenderness'?
  


• Is the weight gain something to concern myself about at this time?
  


• And the blood in the ejaculate?

Well here are the answers - hot off the press!

• What if anything, can be done about the fatigue? Hopefully I will learn to tolerate this unwanted side effect otherwise medication can be used.
  


• Should I be concerned about the 'shortness of breath'? Worst case, this could point to 'heart related issues' but having 'pretty much' ruled that out, and since this side effect seems to be waning ... we'll press on.
  


• What about the dizziness? This can be caused by any number of things and will be monitored.
  


• Should we consider addressing the cholesterol level at this time? Yes.
  


• What about the ... 'blood in the ejaculate'? This is possibly the result of the 16 core samples taken during the TRUS, 3 and a half months ago, or is related the the tumour itself. Either way it doesn't affect the treatment under consideration.
  


• What can I do about the 'hot flushes'? Again, I should be able to tolerate these, particularly with winter around the corner! However, there are medications that can help with this also.
  


• Um ... ah ... what about ... um ... 'breast tenderness'? If this becomes too bothersome, we can 'zap it' with some radiation and 'VOILA' problem solved (fried?).
  


• Is the weight gain something to concern myself about at this time? It could be ... but we'll see how things go. Diet, exercise and perhaps some weight training offer the best outcomes. [Currently all the above apart from 'weight training' are in play!]
  


• And the blood in the ejaculate? This is to be expected, but again will not affect the proposed treatment.

Urologist Visit

Today, I took myself off to the Urologist's surgery; armed with a page full of questions. The questions looked something like this:

1. What if anything, can be done about the fatigue?
2. Should I be concerned about the 'shortness of breath'?
3. What about the dizziness?
4. Should we consider addressing the cholesterol level at this time?
5. What about the ... 'blood in the ejaculate'?
6. What can I do about the 'hot flushes'?
7. Um ... ah ... what about ... um ... 'breast tenderness'?
8. Is the weight gain something to concern myself about at this time?
9. And the blood in the ejaculate?
   
   

Well ... during the course of the consultation, the doctor managed to:

1. Answer some of the above.
2. Avoid some of the above ("I wouldn't worry about that").
3. Delegate the responsibility (to answer) the remaining questions to a colleague - "You can talk to the Radiation Oncologist about that.

Don't you just love it when doctors are able put your mind at ease!


Radiotherapy

The upshot of the visit was, that we now move into a new phase of treatment - 'Radiotherapy' (RT) as an adjunct to the Hormone Therapy (HT). The latter will most likely continue for approximately 18 to 24 months. However, there is a possiblity that I could be on HT for the remainder of my life; dependent upon the success of the radiation treatment.

[It has also been decided at this stage, to rule out surgery; because of the likely complications; both during and after the operation].

Radiation Therapy will entail daily radiation treatment, 5 days a week for approximately 6 weeks; (with Saturday and Sunday ... 'off for good behaviour').

Unfortunately this will also involve short stays in hospital for each subsequent treatment; thus further complicating my desire to lead as normal a life as possible e.g. juggling work committments, cancer therapies and home and social life etc.


LHRH Implant

Of course, the main purpose for my visit was to receive another injection of a luteinising hormone-releasing hormone (LHRH)- specifically a 'Goserelin acetate implant' (the generic name) or Zoladex (the product name).

Don't ask me why, but ... I asked to be able to inject myself on this occasion, not sure why now; but it seemed like a good idea at the time! Well according to witnesses (the doctor and my wife) I was a real 'pro' (professional).

The instructions were simple: "Grab a good fistful of excess skin ... (to the left of the 'belly button') ... and in one swift downward motion plunge the syringe into the abdomen right up to the hilt! Then depress the plunger and this will release the implant."

Well I must admit, in some strange way, I actually enjoyed the experience!

Perhaps it was because I was 'in control'; for the first time since the cancer was discovered. Perhaps it was the release of adrenalin, associated with the whole procedure; I'm not sure.

However, afterwards I do recall the doctor stating: "Very well done ... but ... I'm still charging you for the procedure, even though you administered the implant yourself"!

The success of this treatment (in my case Goserelin 10.8mg every 3 months) will continue to be be monitored by regular blood tests which look specifically at the Prostate Specific Antigen (PSA) readings.


Summary

In what follows, I'll attempt to summarise my position at this stage. I must add, that most of what follows has been determined by the research that I have undertaken on my own behalf.

While I have been priveliged to have the services of some very good professionals available to me throughout this ordeal; none of them (including my GP who is only new to me) has assumed the role of case manager and walked me through the necessary (often daunting) steps.

This I believe is often a serious flaw in the current treatment of cancer patients. Even though my Urologist has a clinical nurse assigned to liaise with his cancer patients, she has been unable to answer my questions, on at least 3 occasions and was away at a 'course' (yeah you guessed it - the course entitled 'How to Comfort Cancer patients') on the fourth occasion. Suffice to say: 'I wasn't all that comforted'!


As to life expectency:

We still have 3 to 5 years 'on the table', with the qualifier ... it could be a few years longer!

The PSA level is "coming down very nicely" but at 4.8 (normal being 0 to 3.5) and with a Gleason score or 9 (out of 10) there is still the possibility that the tumour has breached the boundaries of the capsule (Prostate Gland). If so, it is hoped that the Radiation Therapy (in combination with the HT) will effectively deal with such a breach.

NOTE: There is currently NO cure for Prostate Cancer once it has spread beyond the capsule. Current therapies can only 'buy some time'.


As to the side effects:

Hot flushes, Cholesterol, fatigue, shortness of breath and dizziness can all be managed by medication; according to my own research.

Weight gain is amenible to exercise, but some may be inevitable.

Blood in the ejaculate? To quote the Urologist: "We don't need to worry about that; it's quite common for blood to be still present in the semen at the 3 month mark. But that's something you can ask T... ('Dr. T' - Radiation Oncologist) about as well".

And finally, with regard to 'breast tenderness, a short zap with 'radiation' (while undergoing RT) can deal with this once and for all!

You Found Blood Where - Part 2

Some time ago I wrote about the presence of blood in my semen (or ejaculate) an excerpt follows:

Now this I wasn't expecting ... I was told, that after the Biopsy I could expect to find blood in the urine. I was also informed that I could discover blood in the semen.

However, what I wasn't told, was that my first semen sample (4 weeks after the biopsy) would be the colour and consistency of (black) tea.

Now that was a shock! I was ready for evidence of blood, albeit dark; (as bright blood would indicate present bleeding) but to all appearances, what I was observing was not semen at all!

Even now, I am surprised at the profound impact that this unexpected occurence had on me. I guess ... anything to do with the male reproductive system, is closely linked to a man's perception of his 'male-ness'. Therefore any sign that something may be amiss in that area, causes alarm responses to reverberate through to the very core of a man's self-identification.

Well, I did promise to keep you updated; but I must admit ... this is the only area of research (re Prostate Cancer) that I have deliberately avoided - not precisely sure why?

This is of course a very sensitive subject for most (if not all) men and I'm certainly no exception; but in the interest of research I finally decided to pursue the matter further.

Imagine my surprise, after finally discussing the discolouration of my ejaculate with my wife ... that she had known all along! She simply said ... almost as an aside:

"Oh, I know ... it's been discoloured for sometime"!

My shocked reaction was: "How did you know"! I was genuinely surprised, and started thinking: 'women's intuition ... we guys don't have a chance'!

But then it dawned on me: "of course she would know ... she was there"!!


Anyway, that started me thinking:

'If the ejaculate was blood-stained BEFORE the TRUS (Trans Rectal Ulta Sound) then what had caused it'? 'More research needed - but a different hypothesis'!

Then I found this (courtesy of Doctor's Lounge):

"A brownish or reddish ejaculate indicates blood in the semen and can cause concern to the men who experience it. The condition is common, and many episodes go unnoticed because ejaculation is usually intravaginally. It may be benign or the first indicator of a urologic disease.

It can occur in persons of any age. Most men with this condition are young (average age less than 40 years) and have symptoms ranging in duration from 1-24 months. Blood in the ejaculate that persists for more than 10 ejaculations or 2 months requires further evaluation by a urologist or genitourinary physician. Often, the condition is self-limiting within 2 months.

The patient's blood pressure should be checked because severe Hypertension is associated with this condition, and may have a similar basis to the association of Hypertension with nosebleeds. Other conditions that could cause blood in the ejaculate include:

*Lesions of the urethra that bleed and contribute to the ejaculate, such as polyps, warts and strictures.

*Infections of the urethra (urethritis) which may be sexually or non-sexually transmitted. Urethritis has long been recognised as a cause of bloody semen, especially in younger men.

*Inflammations of the prostate, such as prostatitis.

*Other conditions of the prostate such as bleeding after a prostate biopsy (which resolves on its own), Prostate cancer, prostatic varices, prostatic stones. Blood in the ejaculate of men older than 50 years is occasionally a harbinger of Prostate cancer.

*Cysts, infections and malignancy of the seminal vesicles (a pair of male accessory sex glands that secrete most of the liquid component of semen).

*Systemic diseases, most important of which is severe Hypertension as previously mentioned. Others in this category include bleeding disorders, chronic liver disease and Lymphoma".

The most obvious culprit? "Blood in the ejaculate of men older than 50 years is occasionally a harbinger of Prostate cancer".

That's another item to add to my 'discuss with the Urologist list!

On that note; I am seeing my Urologist this Thursday for another LHRH implant and the results of my latest PSA blood test.

Oh, and by the way ... my ejaculate is still blood stained! I know because ... I asked my wife!

Looking for a Role Model

"I am woman hear me roar..."

Since my last post, that line from a Helen Reddy song (of yesteryear); keeps reverberating in my mind, as if to taunt me!

It's not enough, that I'm somewhat 'gender-confused' as a result of being 'chemically castrated' some months ago ... no ... now I'm becoming obsessed about my weight! My weight has now ballooned out to 91 kgs and I'm 'not happy Jan'.

To make it worse, all those (extra, unwanted) NINE kgs have decided to congregate around my mid section! I would have been happier if they had 'spread themselves out'; but nooo...! Now I've had to go out and buy a whole new lot of jeans, trousers, shorts and shirts! (Ah ... I just realised . .. there's hope for me yet ... I still don't enjoy shopping!!)

At work ... well its rather pathetic really. Whenever the women ask me if I've 'put on a bit of weight'; I find myself cowering behind: ... "it's the medication, its upset my body's ability to metabolise correctly".

Now, before you jump in with: "...have you considered diet and exercise"? Let me explain; I continue to enjoy an almost exclusively vegetarian diet. The only meat I have is the occasional chicken or fish. And so ... no carbs, no fat, no cholesterol, no sugars etc. But still the weight defies me!

I have been exercising (lightly) and my job is one that requires a considerable amount of walking; but still the weight mocks me!

I know, I could defeat this latest enemy with a regular program of vigorous cardio workouts; to 'burn off the fat'. But, and here's the rub, the HT (Hormone Therapy) that I'm on causes considerable fatigue and I literally don't have anything left over after work.

And so there you have it ...

My decision? I have decided to try to ignore the weight gain, enjoy the new clothes and trust that the current 'exercise and diet' regime will, over time, win out in the 'battle of the bulge'!

Now What?

Internal Conflict

Over recent weeks, I have found myself becoming … ‘reactive’ rather than ‘responsive’, in various settings; this has been particularly disturbing at times. By this, I mean that my emotions have held greater sway over my behaviour, than has my analytical, reasoning side. And that for me is disturbing!

Anyone, who knows me, knows that I tend to rely on logic to determine the answer to many of the challenges that confront me. My mind instinctively begins to analyse each situation and explore the various possible scenarios that may be the outcome of a particular choice or series of choices.

I also confess to being obsessive, compulsive and somewhat anal.

Now, that is not to say that I am exclusively that way inclined. I also have a highly tuned intuitive side, which makes for some interesting moments when these two ‘sides’ clash. But of late, this characteristic has been somewhat ‘dormant’.


Further Side Effects

The reason for this sudden about face, I believe, can be laid squarely at the feet of the ‘hormonal therapy’ (HT) that I’m undergoing. Let’s consider the evidence.

1. The lack of testosterone (blocked by the HT) is affecting my ‘maleness’.

2. I am starting to develop … ‘man boobs’.

3. I am experiencing tenderness of the nipples.

4. I am often ‘teary’ for no apparent reason.

5. I am losing muscle strength.

6. My wife and I sympathise over our jointly experiencing ‘hot flushes’.

7. I cry when watching a ‘sad’ movie.

Suffice to say a prima facie case exists, to at least warrant further investigation. Ironically, in this case, the wrong ‘prisoner’ (me) is confined to quarters pending a full enquiry!


Consequences

It is so embarrassing to find oneself (over) reacting to situations that previously would have caused only a mere ‘ruffling of the feathers’. Only to realise, somewhat belatedly, that there was perhaps; a more logical reason for the present quandary. I can’t remember a time when I have had to apologise so many times and so often!

Fortunately, my workmates understand my circumstances and have been gracious enough to make allowances for some of my more questionable responses.


What to Do?

If I am to continue for at least another 3 months on this (HT) treatment, then I have to find a way to slow my emotional reactions down, allowing time for a more considered and logical response. Wish me luck!!

Ponderings ...

I've been back at work for nearly three weeks now and much has happened. Firstly, I feel so much stronger! This is of course, very welcomed news for my wife and I. Although officially, I'm still looking at a prognosis of 3-5 years. I am pleased to say however, that the way I feel, belies this!

On 8th February, I'm due to have my next PSA (blood) test. This will hopefully show that my PSA reading has fallen even further.

I began this journey (with cancer) on 27th September last year with a PSA reading of 84.8!! This was later confirmed, and weight was added to the gravity of my circumstances; when I was found to have a 'Gleason Index' of '9' (out of 10) thus indicating that my particular cancer was the most 'aggressive' kind!

Now after two months of continuous 'hormone therapy' I'm beginning to find more reason for hope.

Firstly, the (many) side effects that I was suffering, have for the most part, abandoned their quest and left me with ... of all things ... more energy! Almost to good to be true, but I'll take it!

Secondly, I have begun to lose weight - slowly. This I attribute to two things:

(1) A very healthy (and strict) diet.

(2) A lot of exercise (mostly at work).

A Weight Lifted

Now, with the weight of the adverse side effects 'lifted', I am not so constantly reminded of my condition. This means I have actually been able to trully forget that I could only have 3-5 years to live and dare to embrace ... LIFE ... again.

And so, over the past couple of weeks, I have had time to ponder what the future might look like.

I may for instance:

Find myself once again in Ministry. A position has beckoned and we have begun the process of determining if this is the way forward.

Or, I may find myself heading up the English Department of a Medical University in Chile. Here too a position is beckoning!

Of course, there is always the possibility of a 'wild card' i.e. something from 'left field' may suddenly intrude and demand our attention.

Smart Money

Right now however, the 'smart money' is on the Chile option! Why you ask?

Well ... the first possibility, while it contains an opportunity for my 'faith' (in 'Church' i.e. the 'church system' and 'Christians' - there are christians and there are Christians!) to be restored; it also contains a risk. If this is not the correct path, many are likely to be hurt; myself included. I'm not sure that I'm sufficiently healed to take the chance - for ALL concerned! (See Heart Unburdened)

The second possibility however, well ... that is 'where my heart is'. The risk associated with this? I may disappoint those dearest to me!

I ache with an intensity, I've not known before; my 'calling draws me one way; but my heart wages valiantly against it'!

But the heart (the bible declares) is deceitful above all things! Who can really trust their heart; especially when so much is at stake? I am afraid that the wounds of the past still affect my present judgement and my confidence!

The third possibility; well who knows?

But, one thing I do know; come June we will have an answer. Should all other options remain unresolved; we head off to Chile!

Why?

Well ... my 'job' will soon contain increased responsibilities, which my body will not be able to 'keep up with' - at least not for long, without adversely affecting my health. And without the job we can no longer afford to live where we currently reside.

Therefore a 'move' would be imminent.

Added to this; with so much uncertainty surrounding our future, we need:

(1) Closure regarding our past; and

(2) A sense of direction (i.e. some certainty) regarding our future.

We are no longer willing (or able) to live without these ... come what may!

Some News from my Diary

Well the holidays are over and I've been back at work for a week now. The past 3 weeks have been very interesting in terms of the number of side effects that I have experienced. For example, as noted in my diary...


28/12/2007:

• Fatigue was becoming unbearable over the last week! Thank God it has begun to ease.
• Shortness of breath (minimal exertion) has also been a worry, but has started to ease also.
• Unfortunately the 'hot flushes' continue to disrupt my sleep throughout the night.
• Night time 'urination' is still at 3 trips per night!

1/1/2008:

• My weight (fully clothed) has jumped from 85 - 90 kg! Increased exercise regime since on Holidays but will have to watch my diet!
• Unfortunately the 'hot flushes' continue to disrupt my sleep throughout the night.
• Night time 'urination' is still at 3 trips per night!

2/1/2008:

• Away on Kayaking trip - determined to enjoy the break.
• Shortness of breath and fatigue back again - just walking - not sure about kayaking?
• Unfortunately the 'hot flushes' continue to disrupt my sleep throughout the night.
• Night time 'urination' is down to 2 trips per night!

3/1/2008:

• Went kayaking in spite of fatigue.
• Enjoyed a light workout - lake a bit rough.
• Increased energy after kayaking?? Possibly adrenalin?
• Learning to 'push through' fatigue; but sleep/diet is then even more important!
• Unfortunately the 'hot flushes' continue to disrupt my sleep throughout the night.
• Night time 'urination' is down to 2 trips per night!

4/1/2008:

• Another good day ... pushed through fatigue.
• Unfortunately the 'hot flushes' continue to disrupt my sleep throughout the night.
• Night time 'urination' is at 2 trips per night!

7/1/2008:

• Back at work.
• Increased walking (at work) provides a good aerobics workout, but is draining.
• Shortness of breath throughout the day.
• Very tired after work.
• Unfortunately the 'hot flushes' continue to disrupt my sleep throughout the night.
• Night time 'urination' is at 2 trips per night!

8/1/2008:

• Feeling 'down' having to fight through.
• Increased walking (at work) although a good aerobics workout, is quite draining.
• Very tired all day.
• Some 'chest tightness.'
• Shortness of breath thorughout the day.
• Slept for an hour and a half after arriving home.
• In bed at 8:00pm!
• Unfortunately the 'hot flushes' continue to disrupt my sleep throughout the night.
• Night time 'urination' is at 1 trip per night!!

9/1/2008:

• Tired still evident but improved.
• Increased walking (at work) very draining - will adjust.
• Stressful day.
• Concerned about ongoing fatigue.
• Slept for over an hour after arriving home.
• In bed at 8:00pm!
• Unfortunately the 'hot flushes' continue to disrupt my sleep throughout the night.
• Night time 'urination' is still at 1 trip per night!!

10/1/2008:

• Lost 1kg in weight!!
• Adjusting to increased walking (at work) - not as draining.
• Fatigue improving.
• No tightness of chest!
• No shortness of breath!
• No after work nap!
• Unfortunately the 'hot flushes' continue to disrupt my sleep throughout the night.
• Night time 'urination' is still at 1 trip per night!!

11/1/2008:

• Yahoo!! My rostered day off!

Hidden Purpose

In a letter to my daughter recently, I wrote:

"I cannot conceive of a universe, whose genesis was chaos and whose progress is a result of the random collision of complex occurrences. The universe I see contains order and purpose; but its dimensions and complexities far outstrip our puny intellects and dwarf our most vivid imaginations. Such a universe can only be conceived in the heart of God and therefore sustained, held in balance and directed by his supreme power".

Now when I penned that paragraph, I was desperately seeking to make sense of my life as it is.

Faced with a dire prognosis, (i.e. a life expectancy of: at best, 3-5 years) as a result of having been recently diagnosed with: "an incurable and advanced case of Prostate Cancer" ... life suddenly: HAD to have meaning and purpose!

I have searched my soul. I have prayed ... intensely. I have even resorted to begging God; but still, I can make no sense of my current circumstances!

Of course, many would refute, out of hand; my earlier assertion regarding life having an over-arching purpose. Be that as it may; my search for purpose is not based on a desperate and/or belated need to find the meaning of life! Nor on some grandiose notion concerning my own value or worth etc. Nor, do I care what others may think! This search is very personal and much, much deeper and far more profound than I can describe.

My best effort to do so would be to see myself pitted against the 'supreme power' of the Universe and demanding (yes ... demanding) an explanation of him!

Some might consider that this, sounds very reminiscent of the 'Job story'! I wouldn't dispute such an assertion. In fact I have often thought of my life as one ... long ... 'Job story'!!

But even Job's story had purpose!!

I can suffer loss ... even the loss of all things precious. I can suffer the loss of my health, my wealth, my reputation, even my own life - I have already been dead [clinically] on 3 separate occasions. I can even suffer the loss of those closest to me - my youngest son, took his own life 7 years ago.

All these I can embrace if need be, but to do so without the belief that somehow a 'higher purpose' is served ... that I CANNOT do!

That, I WILL NOT do! Not willingly at least! And so I fight!!

Ironically, in times past; I have found myself asking God to: "please just let me go ... I've had enough". Such times have always occured at the darkest, most confusing, fearful and agonising of moments; but on every occasion I have received the strength and will to fight!

Death will come to me one day; and by the grace of God I will embrace it willingly. But the very fact that I have the strength and desire to fight, inspite of the profound side effects I endure and the negative prognosis; gives me hope that life (for me) will continue for some time yet; and yes, it WILL contain some (as yet undisclosed) purpose!

Deep Sense of LOSS

Over the last year or so, a great deal has taken place in my life; snippets of which can be found among these pages.

I won't bother reproducing those here; but I do want to touch on some of the salient features of the past year or so and the over-arching and consistent theme that has been the feature of my life over the past few years.

Firstly, it occurred to me (most profoundly) just today; that my life over the past 4-5 years has been dominated by a deep sense of loss.

Now I could 'spiritualise' that and say that the dominant theme has been one of ongoing and ever deeper levels of surrender! Which would also be true, but would not convey the sentiments, I need to share.

The former statement implies sadness, grief, despair, depression and what I have called 'psyche-ache'!

All of these and more would accurately describe portions of my life at various intervals over the period in question.

However, the latter statement seems to imply a voluntary process of surrendering to a benevolent God with the desire (at least one of the desires) being that of becoming more Christ-like!

I'm afraid that does not describe the process in my case; although it may describe the end result ... the jury is still out on that one!


Reflecting on the theme of loss, I could readily mention a few that come to mind, such as losing:

• My son to suicide - (October 2000)

• My best mate to a fatal heart attack - (January 2001)

• Respect for a denomination which betrayed me - (October 2003 to 2006)

• My family to the 'empty nest syndrome' - (2003 to 2005)

• My mother - (2005)

• My brother to an alcohol related death - (2006)

• My desire to continue 'Pastoring' - (2003 to 2007)

• Respect for the institutional Church - (2003 to 2007)

• Friends, family and peers by abandoning the 'Church' system

• My health to Prostate Cancer - (September 2007)

I could touch on many more occurrences which strongly impacted me during this period but suffice to say, that 'loss' has featured very profoundly. Now that's not to say that fear, insecurity, anxiety and a host of other emotions (particularly betrayal) haven't featured strongly; they have, but each one of those could be traced back to a deep sense of loss!

Just today, in considering our future it suddenly occurred to me, that I was feeling as though 'everything and everyone had been or is being stripped away from me' - and that included ALL earthly possessions as well! Let me explain.

Since my diagnosis, (confirming that I have an advanced case of Prostate Cancer) we have been re-considering our priorities in terms of: possessions; where we want to live; what we can afford by way of life style (particularly if I have to give up working) all, in light of the possibility that I may only have between 3 and 5 years to live.

Now, one very distinct possibility that we are seriously considering, is that of leaving Australia and joining our daughter (and her children) in Chile! Our daughter is a single mum, with two children under the age of 20 months; a doctor with her own practice; a university lecturer and a PhD student - next year.

Apart from missing our daughter terribly (and our grand children, one of which we have not yet seen) and being offered (both) very attractive employment propositions; I know we could also assist our daughter immeasurably!

However, on the down side; because of the expense incurred in such a move, it is most likely that we will have to sell or give away, all of our earthly possession; apart from, our clothing; certain personal affects; and a few sentimental items etc, those which can accompany us on the plane!

It was the thought of: 'selling or giving away'; a life-time of personal possessions, i.e. 'personal treasures' etc, which in some way, reflected: 'who we are' and 'where we have come from' that disturbed me most profoundly!

In one brief moment I felt as though I was being stripped naked and denied everything that I might otherwise call my own! I was to be left; with only certain items of clothing; a very few personal possessions; my (precious) wife; and my memories ... and boy that hit home!!

All the while, I was thinking ... have I got the strength to go through this - again??

Now, such difficult (even traumatic) life-periods are not new to me; either in intensity or duration. But on each earlier occasion, I have always been able to discern what appeared to me to be, a 'valid and often necessary purpose'; even 'a moulding towards' such a purpose.

However, on this occasion I must admit; that the past 4-5 years seem to be void of any discernible purpose. And that's what mystifies me!! How do you give yourself over to a process, if that process seems void of meaningful purpose? I’ve come too far to stop believing that life has purpose … now!!

Still More Side Affects

The most recent addition to the stable (of 'side affects') is 'shortness of breath' and 'a tightness across the chest'! This is by far the most disconcerting to date.

Some days, I find I'm unable to climb a flight of a dozen or more steps without having to pause, rest a while and 'catch my breath'!

This is only a fairly recent happening and so I haven't as yet, managed to 'get a handle on it'. There is little doubt however, that this latest phenomenon is related to the subjects of the last two posts i.e. 'broken sleep' and 'fatigue'. But there also seems to be an element of anxiety and depression involved.


Depression

Depression has been skulking around all the while, it is never too far away. Depression has in fact been a constant battle since the day the 'news' (of Prostate Cancer) first broke.

Generally with the aid of a particular class of 'anti-depressant' (known as SSRI's or selective serotonin re-uptake inhibitors) I have managed to stay abreast of this - for the most part.


Anxiety

'Anxiety' (fear) however, has only recently made an 'overt' appearance. Even though depression and anxiety are closely related, I was caught somewhat unawares on a number of occasions with the arrival of this latest visitor.

My reasoning to date regarding this latest challenge; goes something like: the 'shortness of breath' and 'tighness across the chest'; could be a genuine side affect (see this post) or a combination of side affect and anxiety, or it could simply be the onset of anxiety itself.

Fortunately, I have become quite adept over the years at using various techniques to relax and avoid the onset of an 'anxiety attack'.

Anxiety attacks can manifest in various ways, but in my (personal) experience they always 'mimick a heart attack'! Perhaps, therein lies a clue as to the source of my anxiety!?

Time to reconsider my action plan moving forward ...

• Diet - pretty much on target - check cholesterol levels. Medication?
• Exercise - aerobics OK, but need to introduce resistance training.
• Sleep improving - continue to experiment.
• Relaxation - introduce at least two sessions per day. Do something every day just for fun!!
• Medication - see doctor re possible anaemia - check blood pressure.
• Spirituality - meditate more regularly.
  
  

More on Side Affects

Another even more disruptive side affect, has recently reared its ugly head - 'persistent fatigue' (perhaps partially due to lack of quality sleep I spoke of in my last post).

This has meant that at most times throughout the day just lately, I have been lacking in strength and endurance (especially at work). Although I have at times experienced some relief when I was under 'pressure' and 'adrenalin' came to the rescue!

However, this was always short lived and of course was accompanied by its own 'downside' - tiredness etc - thus further compounding the issue!

Fatigue is particularly frustrating if you are otherwise fit and strong! I must admit, the male ego is not a 'friend' at times like these! It is amazing the 'battles' that you fight with yourself.

I am finding it particularly difficult to accept my condition these days. Instead, I tend to 'fight head on' ... the arrival of each new side affect. But I'm (slowly) finding that there is something to be said about a more measured approach. It is certainly far less taxing in the long run.

For example, I now try to: recognise the symptoms, link them (scientifically not emotionally) to a recognised side affect and then gradually (dependent upon your personal reserves - emotional, psychological and physical) apply a proven remedy - see 'My Journal'.

This is where my own research has proven invaluable. It is simply not practical to be ringing the doctor every time some new symptom arises. Also invaluable, is the fact that I have a select group of wonderful people who care and are there to offer support.

All of the research I have conducted, regarding improving your chances of defeating Prostate Cancer, has pointed to one recurring and crucial factor - support! I am very fortunate to have a loving wife, a compassionate and caring sister, a very supportive brother-in-law and a daughter who is constantly in touch although she lives half-a-world-away!

PSA Test Results

Last week, I attended our local GP's surgery for another blood test. Specifically, this blood test was to:


• Determine whether my PSA reading [previously 84.8] had begun to drop. Thus showing that the hormonal therapy I had been undergoing for a little over 4 weeks, had in fact begun to have the desired affect; and

• Determine whether my cholesterol readings had improved as a result of my [now] 'extremely healthy' diet.


I was told that it is quite normal for the PSA to rise after a trans-rectal biopsy. I was also told to bear in mind, that I had only begun the hormone therapy 4 weeks prior to the blood test. [Orally for the first two weeks, followed by an LHRH implant and continuing the oral regime until two weeks after the implant procedure].


Well ... the results are in!

And, as often happens, there is good news and bad news. The bad news relates to the fact that one of my readings had not altered at all!

My 'cholesterol level' has refused to budge!!

The good news ... well my PSA levels have gone down - very significantly!

My previous PSA was 84.8. It is now 12 [only one month after receiving the LHRH implant]!!

Side Affects

Since my last post, I have found that I am easily able to report (objectively) about my progress on Hormone Therapy etc - see 'My Journal'. But it has become increasingly difficult for me to share (subjectively) on this blog. Let me try to explain.

Firstly, I find report writing/research comes very easily. But (like most men) 'opening up' and 'sharing' my emotional (or worse: psychological) responses/reactions is quite a chore. But for the sake of completeness, perhaps some cathartic release and the hope that others may benefit; I will make an effort.

At this point (if you haven't already) it would be useful to review this post; to gain some understanding of the range and complexity of the side affects of Hormone Therapy. This will help you to understand the potential stressors that the body (and mind) need to endure. Particuarly given that unlike chemotherapy, once you begin Hormone Therapy there is no respite until the treatment is over i.e. the implant in your abdomen is constantly releasing the testosterone-blocking agent into your system, for up to 13 weeks.

Most patients continue Hormone Therapy for at least 6 months before any (short) respite. This is of course dependent upon individual circumstances. Sometimes this respite period is used to introduce a 'complementary treatment' (in my case an 8 week course of radiotherapy) before re-commencing the Hormone treatment.

Where to start? In my last post, I spoke about having the LHRH implant injected into my abdomen. Well since then, I have experienced quite a range of side affects; beginning about a month afterwards and varying in intensity, duration and frequency.

The most annoying, initially were the 'hot flushes'. These would often occur at night, and along with the frequent 'urination' would be responsible for me experiencing a lot of broken sleep.

The scene at night in our bedroom; at times (I'm sure) took on a rather comical note. Picture: my menopausal wife, suffering with hot flushes; alternatively 'throwing off' and then 'retrieving' the bed covers. While meantime I entered and left the bed at random intervals (for trips to the bathroom) and then returned to join in the 'chorus' of: 'off again' ... 'on again'! Sometimes in synch, but mostly at odds with my (long suffering) wife!

Needless to say neither of us have been able to achieve much in the way of (consistent) quality sleep!

I know what some of you are thinking: What about separate beds? Well we considered it; but after nearly 36 years of marriage and overcoming (together) so many of life's hurdles, we decided to tackle this one together as well - with the help of electric fans and staggered bed times and a range of other 'aids'.

PSA Test

Today I attended our local GP's surgery for another blood test. Specifically, this blood test was to:


• Determine whether my PSA reading [previously 84.8] had begun to drop. Thus showing that the hormonal therapy I have been undergoing for a little over 4 weeks now, has in fact had the desire affect; and

• Determine whether my cholesterol readings had improved as a result of my [now] 'extremely healthy' diet.


I am told that it is quite normal for the PSA to rise after a trans-rectal biopsy. I also have to bear in mind, that I only started hormone therapy 4 weeks ago. [Orally for the first two weeks, followed by an LHRH implant and continuing the oral regime until two weeks after the implant procedure].

Having said that; it sure would be a 'shot in the arm' [pardon the pun] to receive a lower PSA reading! I am due to receive the results in a few days.

LHRH Implant

I attended the Urologist's Surgery in St Leonards today, to receive an injection of a luteinising hormone-releasing hormone (LHRH)- specifically a 'Goserelin acetate implant' (the generic name) or Zoladex (the product name).

Now, all of that 'techno-babble' translates to: 'A whopping, great needle (the size your grandmother used to knit with) is thrust (I DO mean thrust) into a fold in the skin covering your stomach area! Don't beleive me? Watch the video and see for yourself!

Now what [precisely] does all this mean? Well ... I'm glad you asked.

Let me ask you ... Have you heard of 'castration' (ouch)?

Yes ... well this is the medical equivalent!

The good news, is that you don't undergo a surgical procedure to remove your testicles (ouch again). The bad news, you are injected with a small implant which (in my case) lasts for about 13 weeks. This has the effect of neutralising the production of testosterone, both in the testes and elsewhere.

I was told that: "most men who undergo 'medical castration' will experience a loss of sexual desire and impotence. In addition, hot flushes frequently occur. However, medical castration is 'potentially' reversible. If treatment is stopped, testosterone is produced once again".

I wasn't quite sure what to expect after this, but since several weeks have now passed, I can attest to the following:

The downside to this treatment is that while you still look like a male; [assuming you did in the first place] you begin to feel decidedly like a female (or, 'she-male').

Quite seriously, I have days when all I want to do is cry! Other days my moods swing violently from one extreme to another and back again. Most days, I'm plagued by 'hot flushes'; so much so, even my 'menopausal' wife is feeling sorry for me!

The GOOD news however is, my PSA level has dropped by a whopping ... 71%!

HE-male? She-male? Who cares! The treatment is working!

Well that's about it for now ... I've just gotta go and have myself measured for a 'training bra'! The things we men have to endure!

You found Blood ... Where?

Now this I wasn't expecting ... I was told, that after the Biopsy I could expect to find blood in the urine. I was also informed that I could discover blood in the semen.

However, what I wasn't told, was that my first semen sample (4 weeks after the biopsy) would be the colour and consistency of (black) tea.

Now that was a shock! I was ready for evidence of blood, albeit dark; (as bright blood would indicate present bleeding) but to all appearances, what I was observing was not semen at all!

Even now, I am surprised at the profound impact that this unexpected occurence had on me. I guess ... anything to do with the male reproductive system, is closely linked to a man's perception of his 'male-ness'. Therefore any sign that something may be amiss in that area, causes alarm responses to reverberate through to the very core of a man's self-identification.

At this point, I turned to my research and discovered that such an occurence was 'normal', and that the semen (I became assured that it was semen) should return to normal after a few more weeks and several ejaculations.

Well ... after all that research was I re-assured? No not really!

I then spoke to my daughter (yes ... my daughter) who is a doctor and specialises in sexual health. She also assured me that what I had witnessed was indeed semen and a return to a more 'normal' colour and consistency could be expected.

Re-assured? Not quite!

I then spoke to my sister (yes ... my sister) who is a registered nurse. She too assured me that all was (or would be) OK.

Re-assured? No not yet!

I then spoke to my Urologist who ... you guessed it ... assured me that all was well.

Re-assured? Hmmm ... I decided to wait and see!!

The result of all this watchful waiting ... you'll have to be patient for a few more weeks!

Bone Scan

Today I attended Dee Why Nuclear Medicine facilty for the injection of a small amount of a radioactive isotope (technetrium). This material is attracted to the bones where prostate cancer is present and thus aids in viewing any such cancer in a follow up bone scan - which in my case is scheduled for 1:15pm later today.

Well I'm back again, I wonder how this experience will compare with the 'big doughnut'? [aka CT Scan].

I didn't have long to wait before my question was answered. Soon I was ushered into another 'scanning room'.

In similar fashion I was asked to lie down, flat on my back, on the scanning bed. The 'Bone Scanning' device was decidedly dis-similar to the CT Scan. (See picture below)

After lying down as instructed, the 'operator' began to lower the upper scanner into position. As the scanner was getting 'uncomfortably close to my head'; I did what any 'red-blooded', macho, Aussie, male would do in my circumstances ... I closed my eyes!

When I opened my eyes briefly, there was precious little, if any, clearance (or so it seemed) between my head and the scanner! This was REALLY discomforting!

It was about this time, that I received a 'revelation'!

The 'operator', was not 'a patch' on the nurse who prepared me for the CT Scan - she was brilliant!

This guy by comparison ... was a loser! He had no personality, zero compassion and very little patience!

But ... I was at his mercy ... and so I decided that this was not a good time to tell him what I REALLY thought of him!

Fortunately for me, I had become very good over the years, at mastering a 'yoga breathing technique' and a companion 'relaxation therapy'! I was therefore able to 'evacuate' for the entire procedure. [Which to me seemed like just 5 minutes, but turned out to be more than 45 minutes!]

I was also more than a little 'put out', by the fact that the 'operator' (that's about as flattering a term as I'm prepared to use to describe him) disappeared after each subsequent re-positioning of the scanner.

Finally the ordeal was over, I abandoned my semi-naked state, for the more acceptable 'fully clothed state'; and made my way back to the real world.

At least there, I thought to myself: 'you KNOW that most people DON'T care about you; but at least they [mostly] don't try to pretend they do! Boy what a jerk!!

Letter to Lauren

After receiving and reading Lauren's letter; I was far too emotionally spent to write back. I needed 'alone time' ... my heart was breaking.

I longed to hold my daughter tightly and to assure her that everything would be OK.

Finally I felt ready to put pen to paper and simply let my heart dictate my response.

Hi Lauren,

I am sorry that you now have to experience such profound sorrow and at such a young age - I wish it could be otherwise.

I too have run the gauntlet of mixed and powerful emotions on more than one occasion. I have cried more tears than I care to remember. I have been angry, sad, fearful and despairing. But as powerful as these emotions are; nothing has eclipsed the aching, gnawing, sense of incredible, inconsolable grief and loss that churns relentlessly deep within me.

I still yearn for so many things. Life is so precious; and yet sadly, we all seem to take it for granted until some momentous milestone moment comes along to hit us fair in the face.

I still dream of a world that can be a much better place; even though my faith, in its many and varied expressions, has been horribly shattered and bears little resemblance to that of my youth.

I have been hurt by those closest to me and the scars still refuse to heal. I have lost a son to suicide; beguiled as he was by the deceptive poison of the ancient serpent spewing forth falsehoods in the guise of profound truths and noble sacrifice. I have known these and many other vast chasms of dread and despair, but I have climbed mountains too – and more than once.

From atop some lofty peak of human endeavour, I have glimpsed God. I have walked where the tallest among us roam. I have witnessed the best in human endeavour and wandered among true nobility – so rare these days. My life has been full! I want these things for you also - all of them.

Do not try to avoid human suffering, for in doing so you only diminish your own humanity. Sadly, many never glimpse the incredible potential, that is latent within us all and which enables us to overcome against all odds; becoming both a conqueror and yet, one who is deeply humbled and much wiser for having embraced a life-altering event, granted to them.

Never fear to venture out on ‘the road less travelled’; for there, the ‘greats’ have journeyed; and there you will find the true meaning of life; a life in all its magnificent fullness, which is both elusive and illusory; and far too frightening for most mere mortals. But you are not among them.

You have begun the journey that leads to truth and purpose. You have made a good start. Embrace the journey in its entirety, even the moments you might long to forget, for there is purpose in them.

I cannot conceive of a universe, whose genesis was chaos and whose progress is a result of the random collision of complex occurrences. The universe I see contains order and purpose; but its dimensions and complexities far outstrip our puny intellects and dwarf our most vivid imaginations. Such a universe can only be conceived in the heart of God and therefore sustained, held in balance and directed by his supreme power.

I do not fear dying, for as you say, I have experienced death; not once but three times. What I fear most is NOT accomplishing the purpose for which my life was made manifest. Fear however, is not my greatest enemy at this time … GRIEF … is.

My most powerful, negative emotions revolve around leaving behind those most precious to me. And you, my dearest daughter, are chief among these …bar one … your mother!

My love for you is immense; my esteem for you, boundless. You encapsulate, in one, gifted individual; all that I would aspire to in so many ways. How could I not miss you terribly? How could I ever willingly choose to leave you? But I am comforted by the fact that I live in your heart and you in mine – FOREVER!

I have not given up … please know this!

I have begun, yet another momentous battle for ‘truth and purpose’. I intend to embrace all that comes along, with the overwhelming and over-arching sense of victory, which grows daily within my heart. The wisdom of God is my compass and his Spirit my ever present companion.

I love you beyond words … Dad

Letter from Lauren

Letter from Lauren

After receiving her father’s letter, Lauren wrote back in words and emotions ‘unbridled’. Still ‘raw’ from the overwhelming impact of the news, Lauren simply allowed her heart to speak …


Hey Dad...

Well, I've spent the better part of the day processing the news. I've cried rivers of tear and told God to fuck off which is a word I never use, that's of course if there is a God as we speak of - I have my doubts these days and I'm pissed that he's picking off my family.

I read through the report and you're right it doesn't look good - and I'm trying to put it nice, for my own sake. The doctor in me doesn't see much hope, the daughter in me will fight to my own death to give you as long as possible and hope against all odds for a miracle. I'm just crushed, really. I'm not ready to say goodbye to my Dad.

I never expected to be facing this so soon in life; you are so strong and have always seemed invincible. I mean, hell, you've died three times and still made it back! I don't understand why your life would be cut short. It doesn't seem right or fair. You've done nothing but give and give and this is the karma that comes back?!

I don't want this to be happening. I keep hoping that there's a mistake or this is all a bad dream that I will soon awake from. I've got tears streaming down my face while I write this, my eyes so blurred it's difficult to type.

It's selfish but I keep thinking of myself and that's it's not fair that my Dad I love so much is being ripped from me. It's not fair that I will be left without my Dad. What will I do without my Dad? Dad's are the first men we love and who love us back and losing that is heart-wrenching. Who will I run to when I'm in trouble?

I've always counted on my Dad being there for me. You've always been there for me. I know it's selfish but that’s part of how I feel. I look at Banjo and Matilda and I cry because I want them to grow up knowing you. I don't want to be cheering Banjo on from the sidelines in years to come as he plays football or soccer and be thinking ' I wish Dad were here to see him'. I don't want to be thinking 'I wish Dad could see her, he'd be so proud' when Matilda wins a race or gets her first 'A'. I don't want to be celebrating my birthdays each year without you present.

I want you to be here when I get my first book published. I want you to be here when I finish my PhD. I want you to see me when I'm at the height of my professional career and achieving what I've worked so hard for, what you've worked so hard for.

A great part of who I am today is because of you and it's not fair that you won't be around to see the result of all your effort and sacrifice. I don't even know if I could achieve what I want without you in my life. We may not be in constant contact with the distance between us, but the fact that you are there allows me to strive and achieve. You're the left hemisphere... I need you.

It's ambitious but I always daydream of one day being President of the international sexual health society, or running the sexual health programme of the World Health Organisation, or maybe getting a Nobel prize (now we're really dreaming). And as I accept my award/position I always picture you in the audience cheering my on proudly, and I dedicate my achievement to you and Mum. It kills me to imagine that dream without you in it and instead picture myself paying tribute to your memory with tears on stage.

It's too soon to be thinking about losing my Dad, and you're so young and healthy, it's just surreal and completely unjust. There's still so much you have to teach me, so many stories to tell me, so many things you have to do. I'm glad that you have spent so much time on your book and the family tree because in losing you I feel like I will lose a big part of the family history. I will lose a big part of myself because part of my identity I find in you and a big part of who I am is linked to you.

You are the one who always understands me. I have so much of you in me that you know me so well and no one else knows me like you do. I don't know what I will do without you in my life. It's a strange thing to know that someone you love is dying; it's like being in a constant state of mourning. I go about my life but it's always present in my mind and every now and then I just stop and think 'my Dad's dying'.

On the positive side, knowing permits me to plan to spend time with you doing things that I would want to before it is too late. Knowing ahead of time assures me of being able to say goodbye as I would like to. Not that I would like to, I don't even want to think about that. I don't know how I will pick up the pieces of my heart that will surely shatter into 1,000 fragments in the moment that you slip away from me.

I'm really disappointed with Bob and how he has responded to the news, even a stranger would have a more emotive reaction. I can't believe that he is my brother, the same one that I once felt so close to and loved so dearly. I will respect your wish and not interfere in the relationship (or lack of) that you have with him, as long as it is what you want. I do wish that there could be a reconciliation, I believe Bob will regret it for the rest of his life if he misses the chance to be by his Dad's side when he needs it most and give back even just a little of all the love that you have given him.

My mind keeps spinning and going back to so many different memories from my childhood, remembering things we did together, moments we shared, and conversations we had. You're my Dad; I'm your little girl... I can't imagine losing you. It's your blood that pumps through my veins; it's your energy and love that spurs me on. You're not supposed to lose your Dad like this, not so early, not so suddenly.

I'm sorry I'm going on and on about me, this should be all about you, I just can't separate myself and all that I will lose in losing you from this. I worry about Mum too. I can't imagine how it must be to, after so many years of life with someone you love, be facing the possibility of losing them and being left alone. She won't be alone though. I want you to know that Mum will never be alone or want for anything. I promise you that I will always be by her side and ensure she is provided for; she will live with me if she'd have it that way.

I love you and Mum with all my heart and it kills me to think about losing either one of you. I have always had trouble thinking about the day when I will attend your funerals and speak of the great man and woman that you were. I never in my wildest dream thought that either of those days would come before my 40's though.

I'm going to see about organising more trips to visit in the next year, I need and want to spend as much time with you as possible. I still have so much to learn from you and there are so many things to share. I want you to come and stay here too if you want to. You should plan to come and stay here for at least 3 months to let me show you a really good time and for you to hold and play with your grandbabies who will want to know all about their grandad and what an awesome man he was. Please consider it.

If I can do anything at all for you or Mum let me know. I wish I could be there and I'm going to be there more often. Keep me up to date with the test results; you know I will be bugging you. I'm still holding out for a miracle, I just can't accept that there could nor should be a life without my Dad.

I love you!

Lauren.

Ps - Excuse the errors and raw emotions I'm not proof-reading this, you can't edit the words that the heart sings.

CT Scan and other Incidentals

Today I dutifully attended the Dee Why X-Ray & CT facility to undergo a CT (computerised tomography) Scan, to determine the possible 'spread' of the cancer. The hope is that the cancer is contained to the Prostrate and not spread beyond to the lymph nodes and the abdomen.

Prior to attending the facility, I was then given the following instructions:

When you arrive, you check in with the receptionist so the radiographers know you are there. Then you usually take a seat in the waiting room until someone calls you for your scan.

When you are called, you may first go to a cubicle to take off your outer clothing. You may have to strip down to your underwear and put on a hospital gown. If you are just having a CT of your head, you may not be asked to undress. You must take off any jewellery that is in the area to be scanned because metal interferes with the machine.

When you are ready, the radiographer or helper will take you into the scanning room. You will probably have to lie down on the machine couch on your back.

Sometimes the scan is done with you on your side or lying on your front. You need to lie as still as you can, but breathe normally.

Once you are in the right position on the couch, the radiographer will leave the room. This is because there will be X-rays in the room and it would be dangerous for the staff to be exposed to these. They see patients having X-rays and CT scans all day, every day and if they stayed in the room, would be exposed to far more X-rays than any patient.The radiographer will be able to see you on a TV screen and you can talk to each other through an intercom.

The radiographer will control the position of the couch from outside. The couch can move automatically through the CT scanner so that the part of the body to be scanned
is in the machine.

The radiographer will tell you that he or she is about to start the scan and remind you to keep as still as you can. When the scan is over, the radiographer will come back into the room and help you down from the couch.

Lying still for long periods can be uncomfortable. If you are getting stiff and need to move, tell the radiographers through the intercom. During the actual scan, you have to try to keep as still as possible, and not cough or swallow, particularly if your head is being scanned. Mostly, you can breathe quietly but normally throughout the scan.

For some scans, your radiographer may ask you to hold your breath at various times during the scan. If this is going to happen, they will tell you beforehand.

You should be able to go home as soon as the scan is over.

Now of course I felt completely at ease after reading all of the instructions!

"What was that about taking all your clothes off ... I hope they have central heating in there"!

Prior to the procedure, I was asked to drink a milky-white, 'liquid contrast material', which I was told would help provide 'contrast' so that the body tissue would show up more clearly on the scan.

After undressing, and then being made to sit for 'an eternity' ... half naked ... in a 'broom closet'; I was finally ushered into the 'scanning room'.

After a medical questionnaire, which raised my anxiety level to an 'uncomfortable' level; the discussion turned to the likelihood of adverse reactions etc. I was then told:

"Some people feel a bit claustrophobic or 'closed in', when they are having a scan". (You need to tell the radiographers this, before the day of your appointment!!) Like, how am I supposed to know, in advance, how I'm going to feel!

"If necessary, you can have a tablet or injection to calm you down before the scan". (If you had the foresight to organise it in advance).

"If you let us know that you are nervous, we will take extra care in making sure you are comfortable and understand what is going on. Keeping your eyes closed sometimes helps".

Now that was really comforting ...

A 'dye' was then injected into a vein to improve the clarity of the scans. The nurse explained that the injection might cause a feeling of being 'hot-all-over' for several minutes - but that it was normal for most people. She was right, I soon became aware of the 'hot-all-over' feeling - it was a little disquieting, but otherwise OK.

I was also told that I should just relax and try to stay calm while my body was slowly entering into the large (rather ominous) circular looking device in front of me. Stay calm ... sure NO WORRIES!

It was then that I realised that I must be a little claustrophobic! I kept telling myself: "the big spinning doughnut doesn't frighten me ..."

The scan took about 30 minutes.

You just lie there, flat on a table inside the large, circular device (CT scanner) while it rotates around you. Meanwhile you are alternatively told to: 'inhale and hold your breath', while the scans are taken; and then to: 'exhale and breathe normally' while the machine relocates for a subsequent scan. You do this in response to a computerised 'voice' which intermittently invades your 'headspace'.

Come to think of it ... I'm convinced that the 'voice' is activated by a colour sensor mounted close to where your head is located; as I'm sure, that on several occasions, the command to: 'exhale and breathe normally' only happened when I had started to 'turn blue'!

Anyway, I survived the whole ordeal and lived to tell about it and you are my witness!

Follow Up News

In a hurried letter to my daughter Lauren, I wrote the following (after speaking to her at length on the phone)


Hi Lauren,

Sorry about the bad news, and breaking it t you over the phone; but I couldn’t withhold telling you any longer.

I was hoping for a better result and would then have told you after it was all over; given that there was nothing you could do and you had enough on your plate.

I have been avoiding talking to you for a while … you read me too well! I have known for a long while, but that’s another story.

I told Bob and Sheridan (not a good response) after Grace’s birthday party along with Ken [Marg’s brother] and Nan [Marg’s mother].

Ken I told first and privately so that he could keep an eye on Nan in the days immediately afterwards - just in case he and Anne left early – he has been very supportive. Nan was understandably upset but also very supportive.

I’ll ring again soon … you asked for the results and the upcoming tests … here they are:


• 21st September – GP

Blood work


• 27th September – GP

Blood work results

PSA levels:
Normal (0-3.5)
Mine (84.8)


• 19th October – Urologist/Surgeon

Rectal Exam
Large mass (prostate)


• 25th October – Urologist/Pathology

Intra-rectal exam/biopsy

Severity/Grade (0-10):
7 is average, Mine 9

Type of cancer:
“The worst f---king one you could have…” – the Surgeon’s response

Prognosis:
Worst Case: 12 – 18 months
Best Case: 3 – 5 years (optimistic)

• 27th October – Pathology

CT scan
TBA


• 2nd November – Pathology

Isotope Bone Scan
TBA


• 13th November - Urologist/Pathology

Scan Results
TBA

Grave News...

I'll be blunt, Mr Purcell, it's not good news. I am really sorry that I don't have better news for you, but there are still some things we can try ..."

I was not completely shocked by the news, I had known for sometime that something was wrong; a sort of 'gut feeling' if you like.

But circumstances in my life had been pretty chaotic for quite some time and had not permitted an investigation into my 'gut feelings' - until now.

My mind had already begun to race ahead exploring the many different scenarios, until ... suddenly the Urologist was speaking again.

"... there are a number of tests we need to do right away. I'll schedule a CT scan followed by a Bone scan for early next week. We'll know more then, and can begin to develop a plan of attack."

"Doctor let me be blunt, I need to know ... should I start getting my afffairs in order? I have a daughter and two young grand children in Chile; the youngest one is only 6 weeks old and I've never seen her".

"If I were you, I would be planning to spend as much quality time with them as possible; why wait and take the chance that your health might deteriorate more rapidly then expected. I would go and see them"!

"Thankyou, I appreciate your honesty, I've got a lot to think about".

My wife and I just looked at each other - stunned! I had earlier warned her to expect bad news, but even I wasn't prepared for the prognosis:

"At best you have 3 to 5 years; at worst ... a little over 12 months!


All I heard for the next hour or so, repeated like a tape recorder resounding relentlessly in my head, was that last phrase ...


"... a little over 12 months"


It was then I realised I had a terminal illness, and fear came flooding in! As I looked at my wife while we made our way to the car, I could see that she was sobbing and shaking and the colour had drained from her face. I felt so helpless, realising that I was ONCE AGAIN the cause of her pain - only this time I could see no obvious way to make it up to her?

Trans-rectal Biopsy

Even now, I shudder at the thought of my first (and hopefully) last encounter with what is technically known as a: "TRUS" or 'trans-rectal ultrasound'. Let me explain.

Firstly, you are forced to re-visit a previous indignity. Lying on a table, in a foetal position; exposed (again) and just waiting ... anticipating, another 'probe' by a well-meaning doctor!

You tell yourself, that this time you are ready; even though the probe this time is a mechanical device and not a human digit. What you are NOT aware of however, is the design.

Then … the 'intrusion' and the 'awakening'! THIS probe has sharp edges - OUCH.

"Hey doc ... I have a friend who is an engineer, I'm sure he would be willing to chamfer the edges off that thing! Is it supposed to scrape its way, all the way to the desired destination"?

"Sorry ... can you FEEL that"?

"Feel it? Hell I can feel every move (twist and turn) that you make"!

"Sorry we'll give you some more local anaesthetic ... you shouldn't feel anything after that".

"I do apologise for that but because of HIV/AIDS, we have had to re-design the probe somewhat".

"How's that now?

"Much better ... thanks"!

Just a little Pinch

As the 'probe' reached its intended destination, the doctor explained, that he was about to penetrate the prostate (via the rectum) and then 'fire a gun'. I would then hear a 'clicking sound' (which he then demonstrated) that would 'pinch out' (ouch) samples of the prostate for the biopsy. This did not sound like something I was going to enjoy ... I was right.

I lost count of the number of 'shots' that were 'fired', but I seem to think it was somewhere in the order of 12-16 ... at least that's what it felt like.

I should explain that the tumour was particularly HARD on one side, and required extra effort to penetrate before a shot could be fired!

So much force was applied, that at one point it put pressure on my diaphragm and subsequently my heart and caused my blood pressure to drop to the point where I almost passed out!

We paused at this point and allowed by blood pressure to rise again. Then we started over!

As we moved on to the 'other side', to my great relief; the probe penetrated easily and without any discomfort!! (That rules out the thought that the doctor was using a 'blunt' needle!!)

Soon, the procedure was over. I was left a little worn out ... and sore ... but otherwise OK.

The drive home was a little difficult. Mostly, because finding a comfortable seating position, proved to be a 'mission impossible'!

Needless to be say, I had much to think about over the next few days.

Urologist

I attended my first appointment with the Urologist/Surgeon today in his Monavale surgery. After some intial discussion, I then underwent ... a 'digital rectal examination'. Now this is not as painful as it sounds, but it certainly is a little embarrassing; as the process involved a gloved finger penetrating my anus!

As I recall that moment now, I can't help but smile broadly. The Urologist had asked me to climb up on the 'bed', which was located against the far wall. As I approached the 'bed' I received a new command: "drop everything from the waist down, climb up; then lie down and face the wall - in a foetal position".

Now everyone knows that doctors are well respected and to be obeyed - to the letter. And so I did as requested. Now imagine, a 56 year old (proud Aussie) male, with his dignity only just intact ... his trousers and underpants around his ankles ... trying to climb onto a 'bed' one metre high!

"Hey 'doc' don't you think it would have been much easier to climb up here, if I didn't have my 'dacs' down around my ankles? Come on fair go!"

The doctor simply laughed (I suspect a snicker was present too) and explained that most of the men he sees; can't undress that easily once on the table. Hence the 'dacs down first routine! So much for trusting in authority figures. Next time I'll ask for a second opinion!

Now, this could not have been a pretty sight!

I was (almost) glad that my wife had been asked to leave the room for the duration of the procedure.

Imagine what she would have had to endure, the poor thing; watching while her husband - whom she had previously viewed as: strong, self-reliant, a pillar of strenth type - was anything but a picture of strength and calm. The image she would have had burned into her psyche would have been that of a:

'A half naked middle-aged man, lying helplessly in a 'foetal position' (which speaks of vulnerabilty, dependence upon others) 'facing the wall', as though in disgrace; and then letting out a pathetic wimper, as a gloved finger was thrust into his nether-regions!

Oh, the indignities we men have to endure!

Time to Kill

Unfortunately, I was unable to obtain an appointment to see a local Urologist for a little over 3 weeks. This meant that we would need to live in a state of suspense until then.

In the meantime, I decided to set about researching the topic of Prostate Cancer and the various ‘therapies’ that were available in Australia and found that these were very much dependent upon a whole range of variables.

I also researched the various tests most often conducted when assessing a patients’ needs in regard to Prostate Cancer and possible treatment options.

At first, I must admit, I was a little overwhelmed at the complexity of this condition and the wide range of treatment options. Slowly however, I began to become familiar with the disease that had invaded my world; even down to understanding many of the medical terms and their significance.

I soon found that I was not content to research 'basic' information, I had soon graduated to studying medical journal articles. This information proved invaluable when (later) I was able to discuss my condition and preferred options with my Urologist in far greater detail.