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!!