A TOUGH Day!

Soon after leaving the Oncology Department today, I experienced a profound sense of dizziness! So profound, I had to ask my wife to drive, as I had also begun experiencing difficulties in regard to balance.

This, could be caused by the Androcur - a recognised side effect - although I would have thought it too soon, having just recently begun Androcur.

Secondly, the culprit could be my own male ego!

Immediately after leaving the treatment room and changing back into my clothes, I didn't stop to re-orient myself, but I did reach down and 'haul' my 15kg grandson into my arms and carry him aloft out of the building and into the carpark.

It was then, that I experienced the vertigo like reaction!

The words of the old song came ringing into my ears: "It seemed like a good idea at the time"!

This 'feeling' did not leave for approximately 5 hours! Added to the 'vertigo' was a profound sense of weakness mixed with fatigue.

The whole experience was quite unpleasant. It remains to be seen if this was an isolated happening or whether it represents something that I will need to learn to tolerate / avoid / manage.

Defeating Cancer ... A KEY Ingredient

The further I travel on this journey (i.e. living with cancer) the more convinced I am, that one of 'most crucial' factors that makes the difference between winning and losing this battle; is the wonderful people you meet along the way!

The skills of the various practitioners, is of course a vital element to success; but this alone does not ensure the best outcome! I have found that the following have been extremely important to me on my journey so far:

1. First and foremost ... a loving, caring and immensely supportive wife.


2. A dedicated and loving daughter who travelled half way around the world, with two young children under the age of 2 years, to spend the first few weeks of my therapy actively encouraging me.


3. Some of the 'best' practitioners in the country are part of my treatment team.


4. The most fantastic nursing staff imaginable.


5. Supportive and encouraging friends.

Conversely, it is also true that 'some' of the people you encounter along the way can actually be counter-productive when it comes to a positive overall treatment outcome. For example:

There are those who are:

'Only doing their job'! Commendable but not good enough when dealing with human suffering!

Then there are those who:

'Feign' concern/empathy ... whilst giving the distinct impression that you are simply another task on an already overburdened schedule.

Of course we also unfortunately encounter the following on the odd occasion:

"I'm too busy today ... ring me tomorrow" - types. This group, often times just need to find a way to 'harness their egos/self-importance! If they can't, then I'm sure that there are many 'out there' who would be only too willing to help with that task!!

I am just very greatful that I have met only one or two who belong to one of these latter groups. Probably a good thing all round ... as I'm known for 'speaking my mind' when the stakes are high enough!

An example of those who (I believe) understand and are dedicated to the 'wholistic' nature of healing, can be seen in the following photo. Here, one of today's team shares a joke with me just prior to the start on my treatment!

A BIG thankyou to all those who have taken such wonderful care of my wife and I!!

Radiation Therapy Commences

Well as noted in the most recent post, my Radiation Therapy commenced a couple of days late. Well ... today was the day! And so off I went, ready for my first experience of Radiation Therapy; flanked by my wife, my daughter AND her two children both under two years of age!

We actually caused quite a stir amongst the nursing staff as both of our grandchildren are (I must admit) quite adorable!

Then it was off to the 'loo' to empty my bladder and then to refill it again with at least '500 mls' of water.

Having taken care of the bowel and rectum situation earlier in the day (with a trusty suppository) I was quite confident that there would be no unnecessary interruptions this time!

Next it was time to undress and put on my specially selected gown - see photo below.

Banjo wanted to give grandad a hug before he headed off! Not sure if the hug was for me, or whether he wanted to see all the brightly coloured, smiley faces.




Then it was to the treatment room for the procedure, with my own doctor (my daughter Lauren) present to oversee the whole event; both in the treatment room and later at the monitoring station. See below:

Now, I'm sure that someone is asking: "Was it uncomfortable?" Well ... yes ... but not in the way you might think! The ONLY discomfort I felt ... was looking at the photos afterwards!

I have never been overweight in my life; but look what 'Hormone Therapy (LHRH implants) does for you! I have gained (for me) a whopping 9 kgs!

More to follow...

Update

I thought it was high time that I offered the following update. Since changing my 'anti-androgen' medication, from Anandron to Androcur - as reported last post. I can now report the following changes.

Negative:

• The fatigue continues ... but is no worse.


• The hot flushes continue but could actually abate - see below.


• Puffy eyelids - this could be associated with a sinus condition of late.

Positive:

• The 'dry mouth' has ceased.


• The photo-sensitivity has ceased!


• The nausea has ceased.


• Androcur is often used to treat 'hot flushes' - a possible bonus.
  

As of 3 days ago, the Androcur was reduced by 50%, to the standard dose.


Radiation Therapy

I was due to start my 8 weeks of Radiation Therapy earlier this week; but received a phone call the afternoon beforehand to say that the procedure was to be set back by 2 days.

Apparently my 'treatment team' were not yet satisifed that they had achieved the optimum computer model to provide me with the best possible treatment regime and therefore best chance of a positive outcome.

Although I was a little disappointed with this outcome, I knew it was for the best.

Patience has never been my 'strong suit'!

Side Effects

When is enough ... enough? In my case, when the Oncologist says so!

Reviewing my diary over the past couple of weeks, I had noticed that the number of side effects and the impact that they were having was increasing to the point of concern.

And so, a phone call to my Oncologist soon confirmed what I had suspected. The Anandron was not a good option for me!

The past week in particular revealed that the side effects had resulted in:

• Dry mouth
• Increased hot flushes
• Increased fatigue
• Photo-sensitivity, and
• Nausea

The solution ... to immediately stop the Anandron and to commence Androcur (Cyproterone).

Unlike Anandron, Androcur is a steroidal antiandrogen. Cyproterone is available as an oral (by mouth) tablet and as a long-acting injectable. The recommended dose for cyproterone tablets is 200 mg to 300 mg (4 to 6 tablets) daily, divided into 2 to 3 doses and taken after meals. In my case, the recommended dose was 300 mg per day.

Imagine my delight when I read the list of possible side effects associated with Androcur ...

The following side effects have been reported by at least 1% of people taking this medication. Many of these side effects can be managed, and some may go away on their own over time.

Contact your doctor if you experience these side effects and they are severe or bothersome. Your pharmacist may be able to advise you on managing side effects.


More common:

• impotence
• reduced (or increased) sexual interest
  swelling of the breasts or breast soreness

Less common or rare (0% to 10%)

• changes in walking and balance
• clumsiness or unsteadiness
• hair loss
• inability to move legs or arms
• increased sensitivity of skin to sunlight
• increase in bowel movements and loose stools
• loss of strength or energy
• skin bleeding, blistering, coldness, or discoloration
• unusual increase in hair growth
• weight gain

Although most of the side effects listed below don't happen very often, they could lead to serious problems if you do not seek medical attention. Check with your doctor as soon as possible if any of the following side effects occur:


Less common or rare (0% to 10%)

• abdominal pain or tenderness
• back pain
• blisters
• blurred vision
• chest pain
• chills
• clay colored stools
• confusion
• cough
• depression
• dizziness
• drowsiness
• dry mouth
• fainting or light-headedness when getting up
• fast heartbeat
• hallucinations
• hives
• increase in blood pressure
• increase in hunger and/or thirst
• lower back or side pain
• nausea and vomiting
• painful or difficult urination
• red, thickened or scaly skin
• shortness of breath
• skin rash
• sores, ulcers or white spots on lips or in mouth
• sore throat
• stiff neck
• stomach ache
• swollen and painful glands
• tightness in chest
• unexplained weight loss
• unusual bleeding or bruising
• vision changes
• wheezing
• yellow eyes or skin

Get immediate medical attention if any of the following side effects occur:


Less common or rare (0% to 10%)

• bloody or black, tarry stools or blood in urine
• irregular breathing
• pains in chest, groin, or legs, especially calves of legs
• puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
• seizures
• sudden and severe weakness in arm and/or leg on one side of the body
• sudden loss of coordination
• sudden slurred speech
• temporary blindness

Some people may experience side effects other than those listed. Check with your doctor if you notice any symptom that worries you while you are taking this medication.

The 'saving grace' ... in all of this for me ... I was on this medication for 4 weeks at the commencement of my Hormone Therapy, and survived quite well!

MRI and CT Scans

Off We Go

In order to beat the morning peak hour traffic congestion; I set off for the MRI and CT Scans at 6:00am - accompanied by a 'full bladder' and my (long suffering) wife.

Now, the first appointment wasn't until 7:30am and we only live 25 minutes drive from the hospital (when traffic is free flowing) but even at such an early hour, traffic on the North Shore of Sydney is unpredictable. As it happens, we arrived at the hospital at ... 6:28am!

Oh well, at least we were 'on time'!

We then headed off to find the MRI rooms in the vastness of the very large, major metropolitan hospital. Having found the MRI rooms we then decided to have breakfast in the (very well equipped) modern cafeteria - YUM!

I had been given strict instructions, to empty my bladder first thing in the morning and then to ensure that it was 'comfortably full' again before the MRI and to repeat this process for the CT Scan which was scheduled for 8:30am.


MRI Scan

Next thing I knew I was laying on my back, stripped to my jockey shorts (garbed in a rear-opening gown) and being told to relax. Relax? There in front of me loomed the vast expanse of the MRI machine. This large roundish metallic object sported a rather smallish opening and was shortly to engulf me!

Well ... there I was ... gowned, sporting a set of head phones (to muffle the loud noise the MRI makes and permit me to hear the operator - just) with a blanket draped across my legs ... swallowed up by this iron monster. When I opened my eyes to take in the view from within the 'mouth' of this thing, there was barely enough room to accommodate my head! Or so it seemed!

I had been told to stay as still as possible! But just in case I panicked ... a bulbous rubber object was laid across my chest which I could squeeze! This I was assured would initiate an immediate evacuation procedure! Well now, I felt re-assured!

About 45 minutes later I emerged from the MRI no worse for the wear and a little dazed - I had been meditating and the time just flew!

"Piece of cake ... no ... that was breakfast."

CT Scan

Arriving at the CT Scan rooms I was ushered in and told to stripped off from the waist down - leaving my jockey shorts on to preserve a modicum of dignity, though they may as well have been removed as it turned out!

Next I was laid on a 'slab' and the technicians proceeded to measure me (with rulers and pens in hand) and then, once satisfied with their measurements, they began to 'mark me' for the upcoming scan! In the meantime, I was told to "just lie there as a dead weight" thus allowing the technicians to 'manhandle me into position'!

Talk about feeling like a side of beef about to be turned into bar-b-qued steak in the over-sized microwave, directly behind me!!

Well ... it was then, that I had fulfilled, another life-long dream ... I always toyed with: 'getting a tattoo'!

In order to expedite the subsequent treatments, my 'markings' were made permanent by the technicians 'tattooing all three of them with indelible ink under my skin'!

Then we were ready, the technicians retired to the (safety) of the ante room to view the procedure (B-B-Que) on the large screen. I was told that I only had to wave and they would stop the procedure.

"Lazy bastards"! I thought. "Let the 'meat' tell you when 'it' is done"!

Well ... the procedure went well up to a point! The technicians were able to determine that the 'gold seeds' were positioned well and all seemed good, but because my rectum was enlarged (read full) we had to abandon the procedure - 'for now'. Then ...

You guessed it ... off to the men's room, an 'enema' in hand, to 'rectify' the full rectum!!

Take Two

All went well after emptying the bowel/rectum and re-filling the bladder. With a subsequent good result; I was dismissed from the CT Scan area and ushered to a waiting room to receive further instructions regarding the upcoming Radiation Treatment.

Then it was off home ... after emptying my bladder AGAIN!

Guilty Your Honor!

I have not been up to posting for some time now as I have been running the gauntlet of ... 'erratic and opposing’ emotions!

Let me try to explain. Since receiving a 'worse than expected' prognosis:

"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".

I have been struggling to come to terms with this as a real possibility. Now … I am still hopeful that I can beat the odds and that this (current prognosis) represents a pessimistic view of my chances anyway. But I guess what 'set me off' was the realisation that if something is going to go wrong, particularly in my case, then it probably will!

Remember Murphy's Law? Well, my name may not be Murphy; (although I am of Irish descent) but I have had to endure much more than my fair share of (often rare) illnesses and (strange) accidents in my lifetime! Couple this with the fact that I have been struggling with issues relating to my faith and you have the recipe for deep despair!

I have found myself vacillating often, between anger and deep sorrow and regret, for some time now. So much so, that I have recently, been 'serving out' a self-imposed period of isolation from all contact with other people - I simply have not trusted myself. I have been afraid, either of hurting others, or of being hurt by them! It just seemed easier to avoid everyone.


Anger, whilst it can be very destructive can also be constructive. That is, when I have hit rock bottom, in terms of despair and hopelessness; I eventually reach the place where the ‘worm finally turns’ and I get so angry that I cry out to anyone who will listen: “Nooooo ... I don’t deserve this”!!

I used to teach that depression is simply ‘anger turned inside out’. What I now understand (more profoundly) is that the two actually ‘feed off’ each other creating an almost self-perpetuating cycle of self-loathing followed by anger towards others, both pivoting upon the fulcrum of GUILT!


I remember, a while back, it was quite common for people in my circle of acquaintances to be asking one another:

"What would you do next (in your life) if you knew that you only had a couple of years to live"?

Now this was invariably asked in the context of 'motivating' people to consider “improving their life-choices” etc, but NEVER did I imagine that I would be considering that question for REAL!

Back then, I (like many others) had several (pat) answers to that question. However, now that I am faced with that question for real; I find it incredibly difficult to come up with even a semi plausible answer.

Then … we were only talking about hypotheticals; now … well now … it’s for real. Now … I have to think about leaving my wife (in particular) in as sound a position (financially etc) as possible. And so the thought of simply racing off to fulfil some life ambition, or some long-held dream, – as in make the most of the time you have left - seems very irresponsible !

Perhaps I am wrong, but simply selling everything and buying a ‘motor home’ and launching out on some great new adventure; while … ‘I still have the strength' … just seems plain wrong; besides it simply doesn't have the appeal that I thought it might.

And so, where does all this leave me? Not really sure yet ... but I think I'm getting closer!

Whoops ... Where did everything GO!!

Just when I thought I was 'out of the woods' ... more medication and more side effects!

I started taking 'Anandron' (an anti-androgen) a few weeks ago in order to maximise the 'androgen deprivation' therapy I'm on - you can read more about this on: "My Journal".

Basically, this aids in depriving the prostate cancer of ANY testosterone; most of which (90-95%) is produced by the testicles but some (5-10%) is produced by the adrenal glands. While this treatment maximises the possibility of 'tumour shrinkage', it also introduces further (unwanted) side effects.

Added to the 'hot flushes', 'dizziness' and 'fatigue'; we (don't forget my long-suffering wife) now have to contend with ...

'Nausea', 'increased fatigue' and 'photo-sensitivity' (of the eyes)!

The increased fatigue is by far the worst (physical) side effect as this really knocks me around! The good news however, is that after 4 weeks on the Anandron (nearly there) the dosage drops back to just one; instead of two, tabs. The not-so-good news is that this coincides with the commencement of the radiation therapy; which has the effect of ... you guessed it ... increasing fatigue!

The nausea, is something that I'm gradually geting used to, but the 'photo-sensitivity' (PS) has only just ... 'reared its ugly head'!

I guess I can't grumble too much, as the PS only really affects me when driving of a night-time; which is now 'off limits'! The only other draw back, is when driving in bright light and then suddenly entering a tunnel or a low light area such as an undercover parking area.

Imagine my surprise just the other day, when I drove into an undercover (read low light) car park ... when I suddenly had to grind to a halt; as everything went ... BLACK!

A bit scary and more than a bit embarrassing!!

Well ... suffice to say that life has been a bit rough lately. Now, added to all of this ... my greatest challenge to date:

"I'm becoming a real sook"!!

If I'm not crying, I'm on the verge of crying! It is downright embarassing, not to mention unwelcome!

"What I wouldn't give for a good dose of testosterone right now ... wonder if there's a 'black market' for the stuff"!

Not only that, but I find myself, more often than I care to admit, avoiding people-contact; mostly because of the increased (emotional) 'stress' (now) involved.

This of course, makes it difficult to keep up with my busy and engaging social calendar! Oh the sacrifices, one is forced to make!

Life in the love nest is also under considerable strain (no testosterone ... limited libido ... the thought is there ... but) thank God for an understanding and (very) loving (and patient) wife!!