Make PAIN your FRIEND!

HI, I am ... 'T3aM0N0, Gleason 9, PSA 0.2ng/ml', in short: 'a Prostate Cancer (PCa) patient' - not yet a survivor. Glad to meet you!

I'm also known as: 'A Very Interesting Case'; 'My 9 o'clock' and depending on who you are talking to: 'a real pain in the arse' ... or sometimes: 'the poor bastard'!

It doesn't really matter, I will usually answer to all of the above.

One thing I have learned (and there have been many) over the past 20 months of battling with Prostate Cancer, is that you must cultivate a sense of humour or you're in trouble. Anything will do, from mildly humorous to absolutely zany ... although go a little easy on the latter!

Something else I've learned, is that life is short, precious and worth the effort; although some days I wrestle with that one.

I remember the (then humorous) TV ad which aired some years ago, which featured a martial arts guru instructing a young pupil, and 'wisely' expounding: "Make pain your friend"!

Well at the time I thought: 'hmm ... yeah I can see his point'. But I didn't realise then, that 'pain' was stalking me in the form of an inoperable and terminal cancer; and that it was about to intrude into my world demanding to become my inseparable companion!

Pain - those who have suffered it long enough will know - is very wearing, even exhausting.

And because of the nature of our modern society we all too quickly reach for pain killers to resolve our dilemma. Now I'm not about to declare that I've finally 'made pain my friend' and simply accepted this intruder; but I have found a way to accept pain BUT on my terms. Let me explain.

I recently, about 5 months ago, I took up the sport of kayaking.

Two or three times a week; my wife and I paddle around the large saltwater lake near our home for between 90-120 minutes. At first this was indeed painful! But along the way something amazing happened; I began to lose weight, build muscle and stamina, I even began to FEEL good about life in general - you've got to love the adrenalin and the endorphins.

However, a problem arose about a month ago that demanded my attention; I wanted MORE and the weather was becoming very changeable!

I remember driving home from the lake one day, reminiscing about the similarity between this sport and the surfing of my youth! It felt good on so many levels! I had to find a way to maintain my exercise regime during the times when the weather wasn't as favourable.

That's when my (long suffering) wife decided we should try one of her favourite sports ... swimming! And so it was off to the local heated outdoor swimming pool.

Result? I loved it! We are now swimming 4 or 5 times a week rain, hail, or shine and I'm managing to swim just over a kilometre in the hour we set aside.

Now, I'm not going to lie ... both sports are still painful even after all this time. However, there is a GOOD reason for this pain - I'm getting fitter and healthier and I'm beginning to FEEL it! I'm enjoying life again and the depression has lessened remarkably.

Nowadays, after a few laps (or a couple of hundred metres paddling) the pain goes and I literally feel great! Sounds like I'm hooked doesn't it?!

Oh, and by the way, my fitness regime is also reaping benefits in the form of: much less fatigue and greater mobility without the nagging arthritic pain!

Make pain your friend? Well, yes; but on your terms!!

Ahem...

If you have been wondering why the posts on this blog have 'thinned out' a little; I'll let you in on a secret ... I really don't like thinking about the fact that my future still remains uncertain. And ...

... after nearly 18 months of living with cancer, I'm tired!

Tired of all the side affects; tired of the 'shadow' hanging over me; and, just plain tired; especially since the worst of the side affects: 'Fatigue', still presents huge problems!

While I continue to try to remain optimistic (even while battling the ever-present depression), as well as trying to limit 'stress'; as this adds to my (new) cholesterol problem; I strive to maintain a healthy diet to minimise both weight gain (side affect of Hormone Therapy) and to reduce my cholesterol level in conjunction with a regular, active exercise regime.


A recent blood test (to investigate my high cholesterol readings) brought both good and bad news. The good: My PSA levels (about 6 weeks premature) showed a positive result!

A further dramatic decrease from 0.3ng/ml to 0.2ng/ml - a 33 1/3% decrease!

The bad news: My cholesterol remains very high in spite of a good healthy diet and vigorous exercise!!!


While the PSA level is very positive, the fact remains, that I need to maintain such results for another 4 years and 4 months before the doctors will be satisfied that the cancer is gone!

I have to bear in mind also, that the type of cancer I have is the most aggressive variety. And so even though my PSA readings would seem to indicate that all is well; there remains a possibility that the cancer is not gone.

Sorta ... "Every silver lining has a dark cloud"!

The Cholesterol ... well it looks like medication for this, until things (hopefully) improve naturally.


On another front, as I indicated in a recent post, it looks like I have Chronic Radiation Proctitis and am scheduled for a colonoscopy and follow up surgery in a few weeks time.

An update on the current side affects I'm tolerating includes:

Fatigue; Hot flushes; Cognitive Impairment (including short term memory loss); Muscle weakness; Depression; Erectile Dysfunction and the 'new boy on the block' ... arthritis!

Say ... What?

What should you do when you suspect internal bleeding, bearing in mind that you are being treated for Prostate Cancer and only months ago underwent intensive Radiation therapy?

Simple right? DO something!

Well, in my case I chose to ignore it and rationalised that the blood (a very small amount) was related to Diet, Haemorrhoids or Constipation.

Of course over the weeks that followed I kept an eye on 'things down under' just in case. But every now and then ... there it was again ... the presence of a small amount of blood!

On each subsequent occasion, I seemed to have a plausible explanation that fit either: diet, haemorrhoids or constipation. But 'lo and behold' a new symptom: a mucous substance rather than evidence of faecal matter?! Hmmm!

I decided in my wisdom (I don't want to know) that it was probably some sort of stomach bug that was responsible for this latest symptom.

But, what do you do when the mucous is then accompanied by what appears to be: small strips of flesh??

Well I know what I did, I took myself off for a blood test, which included 3 days worth of stool samples!

Now I am awaiting a colonoscopy to determine whether the faecal occult blood or FOB (you've gotta love these medical terms) is the result of: Haemorrhoids, Polyps or Radiation Proctitis!

NOTE: for a detailed look at Chronic Radiation Proctitis visit my 'Cancer Journal'

That Time Again

Well the results are in again!

I received the results of my PSA level a several weeks ago, but have been too busy/pre-occupied to post them! I decided that it was time to post the results.


Firstly to recap; we were hoping for a PSA result that was very close to zero. Such a result would mean that I would continue the Zoladex implant for a further period - two to three years is recommended - without having to re-introduce the Androcur and associated side affects.

PSA level

The normal range of PSA (Prostate Specific Antigen) in an adult male aged 50-60 years, is 0 to 3.5ng/ml. Remember, I started this battle against cancer with a PSA of 84.8ng/ml just 13 months ago!!!

My previous test (August 2008) showed a level of 0.66ng/ml, a negligible amount of PSA and an excellent result! Well the result this time the result was even better!

My PSA was only 0.3ng/ml less than half the previous result!!

This is a huge 'shot in the arm' in regard to my quest for a complete cure!! These tests will be repeated in late February and I expect a similar result.

September Update

Changes:

• The fatigue continues but has eased somewhat. This is to be expected as the distance (in time) from the last implant increases. But of course, this means I'm getting closer to the next implant; and so the cycle continues.

• The hot flushes continue but with less frequency and duration. Shortness of breath continues and has eased somewhat - see point 1 above.

• Night urinations have decreased to 1 or 2 per night!!

• Sleeplessness is now almost a thing of the past! I sleep very well now - between ‘pit stops’

• Tiredness has also decreased – see point 1 above!

• Hair loss - chest, stomach, under the armpits - continues but is not a problem. Less shaving required now

• Cognitive Impairment continues to improve; largely because I am forcing my brain to remember even small details - the old adage applies here - use it or lose it!!

• Confusion only rarely becomes a problem, because of the above strategy.

• Memory loss has eased considerably - again because of the above strategy!

• My 'High protein' energy drink (a breakfast supplement) has been added again along with:

Propolis - a product of honey, which has proven results for empowering the immune system; Sage – improves memory; improved, well-balanced diet; and, a milk substitute with added calcium and vitamin D – to prevent bone thinning.


Unchanged:

• My attitude remains (mostly) positive!

• Bowel movements remain good.

• I have put on weight (all over) but it looks good - so I'm told. However I'm still trying to beat the 'bubble in the middle'!


I exercise (walk) most days to stave off bone thinning and muscle atrophy and have sufficient 'down days' to allow my body time to recover. I also get plenty of 'resistence training' (strengthening various muscle groups) by wrestling with my grandchildren!

I have had to ‘work’ at balancing these two; it was only when I considered just how much my body was damaged during the Radiation Therapy that I was able to fully understand the importance of maintaining this balance!

August Update

Changes:

• The fatigue continues and has worsened somewhat. This seems to occur every time I have a new Zoladex Implant (every three months). The first few weeks or so the side effects seem to be heightened.

• The hot flushes continue but with less frequency and duration. Shortness of breath continues and had worsened somewhat - see point 1 above.

• Night urinations have increased to 2 or 3 per night!! Might have to discontinue my last ‘cup of tea.’

• Sleeplessness is now almost a thing of the past! I sleep very well now (between ‘pit stops’)

• Tiredness has also increased – see point 1 above!

• Sensitivity of the skin IS a thing of the past.

• Hair loss - chest, stomach, under the armpits - continues but is not a problem. Less shaving required now!

• Breast (nipple) soreness and sensitivity are gone.

• Cognitive Impairment continues to improve; largely because I am forcing my brain to remember even small details - the old adage applies here - use it or lose it!!

• Confusion only rarely becomes a problem, because of the above strategy.

• Memory loss has eased considerably - again because of the above strategy!

• Berocca; my 'High protein' energy drink (a breakfast supplement) and Glucodin have all been suspended in favour of:

Propolis - a product of honey, which has proven results for empowering the immune system; Sage – improves memory; improved, well-balanced diet; and, a milk substitute with added calcium and vitamin D – to prevent bone thinning.


Unchanged:

• My attitude is increasingly positive!

• Bowel movements remain good.

• I have maintained a weight loss of 2.5kgs - still 6kgs to go!


While it is important to exercise sufficiently each day to stave off bone thinning and muscle atrophy; it is also important to allow your body sufficient rest each in regard to the Radiation Therapy!

I have had to ‘work’ at balancing these two; it was only when I considered just how much my body was damaged during the Radiation Therapy that I was able to fully understand the importance of maintaining this balance!

Results of Blood Test

Well the results are in!

I received the results of my PSA and Testosterone levels a couple of weeks ago, but have been too busy/pre-occupied to post them! Just this morning, I had a gentle nudge from my niece Kathy and decided that it was time to post the results.


Firstly to recap; we were hoping for a PSA result that was very close to zero. Such a result would mean that I could discontinue the anti-androgen (and therefore reduce the number of side affects) but still continue the Zoladex implant for a further period - two to three years is recommended.

The Testosterone level too, it was hoped, would be very close to zero. This would confirm that the Zoladex was suppressing the testosterone nicely and therefore starving any cancer that may still be present.


Testosterone

A 'normal' reading for adult males in regard to Testoterone is: 2.8 to 8.0ng/ml. For an adult FEMALE, the range is: 0.06 to 0.82ng/ml.

My result ... 0.51ng/ml!!

That means, I fit neatly into the 'normal' range for an adult female! Which explains a few things!! (Long term readers would be aware of the 'feminising affects of my meds).

But all is not lost, my result also puts me squarely in the range of a pre-pubescent male (7 to 12 years)!!

I've managed to turn back the clock!

Now before you scoff, such a proposition is not as fanciful as you might think - consider.

1) I no longer have any hair under my armpits!
2) My skin complexion is that of a pre-teen!
3) The hair ALL over my body (except on my head) is falling out!
4) The hair on my head is thickening and growing back!
5) My testicles are 'shrinking'!

I think you get the picture...


PSA level

The normal range of PSA (Prostate Specific Antigen) in an adult male aged 50-60 years, is 0 to 3.5ng/ml. Remember, I started this battle against cancer with a PSA of 84.8ng/ml just 11 months ago!!!

Well my test showed a level of 0.66ng/ml, a negligible amount of PSA and an excellent result!

Coupled together, these results are a 'shot in the arm' in regard to my quest for a complete cure!! These tests will be repeated in early November and I expect a similar result.

Changing Medication

Regular readers will be aware that my wife and I recently moved to Chile, South America. One consequence has been, that we have had to source out my medications, and their availability, here in in Chile.

Well, two things became apparent quickly, firstly the only med that wasn't readily available was Androcur (Cyproterone); and secondly, the price was going to be astronomical - given that: the price here, reflected the lack of ready availability; and, I no longer qualify for the PBS (Pharmaceutical Benefits Scheme) while I'm out of Australia; so importing the meds was out of the question.

This led to a series of emails and phone calls back to Australia to: Medicare (re my PBS status), our Oncologist (re: my options), and our Pharmacist. The upshot being that I was to switch to Casodex 50mg (Bicalutamide) which was readily available in Chile rather than sourcing Androcur (Cyproterone) from neighbouring Argentina!

This outcome however, led to futher discussions re my current progress - 3 months after completing the IMRT. It was decided that I should have my PSA levels tested, and if the result indicated: 'no detectable PSA', then I would immediately stop the anti-androgen altogether!

And so today, I'm off to have both my PSA and Testosterone levels checked; I'm quietly confident that the results will be favourable! More to come next week...

For those of you who are not familiar with Casodex I have sourced out the following slide presentations; available for download from ... here.


Slide Presentation 1: Are all Anti-androgens the same?

Slide Presentation 2: The Efficacy of Casodex (Bicalutamide) 50mg in Combination Therapy


Decision Making

Management algorithms are often used to help to clarify the different options for each stage of diagnosis, disease staging and management of prostate cancer. An example of such an algorithm is shown below.

July Update

Although somwewhat early, I thought it was time, once again, that I offered the following update. I can now report the following changes.


Changes:

• The fatigue continues ... but is much improved because: (a) I am no longer working (b) We are now living in Vina del Mar, Chile!! (c) The food here is natural i.e. no preservatives/all organic and is very cheap - suffice to say we eat VERY well!
• The hot flushes continue but with much less frequency and duration; thanks to the Androcur.
• Shortness of breath continues but is improved - see point 1 above.


• Night urinations have decreased to 1 or 2 per night!!


• Sleeplessness is now almost a thing of the past!


• Tiredness has also decreased because of the above!
• Sensitive skin IS a thing of the past.


• Hair loss - chest, stomach, under the armpits - continues but is not a problem.


• Breast (nipple) soreness and sensitivity almost gone.
• Cognitive Impairment continues to improve; largely because I am forcing my brain to remember even small details - the old addage applies here - use it or lose it!!
• Confusion rarely becomes a problem, because of the above strategy.
• Memory loss has eased considerably - again because of the above strategy!


• My long-standing battle with sinus is over!! This means I now enjoy a deeper and longer sleep time than I have for more than two decades ... yay Chile!!


• The hair on my head has become noticably thicker, particularly on the crown ... yay hormones (female)!!

Unchanged:

• My attitude is increasingly positive!
• Bowel movements remain good.
• I have maintained a weight loss of 2.5 kgs!

Now apart from the above, I can also report continued success with the use of a number of products that have helped to increase my strength and well-being.

• Berocca - available without a prescription.

I have noticed some general improvement in strength levels as a result. Berocca aids in releasing the maximum amount of energy available from the food you eat. Therefore it is very important to follow a well balanced and nutritious diet.

• 'High protein' energy drink as a breakfast supplement.

This I have noticed considerably boosts my energy level for a good start to the day!

• I also chomp on 3 or more Glucodin tablets daily.

The addition of these products has not only given me more energy at times but has also resulted in an improved diet.

I should also add, that I have been careful NOT to overdo ... just because I was feeling a little more 'normal'. I use these products, more for an improved sense of well-being; rather than an aid to 'doing more'.

While it is important to exercise sufficiently each day to stave off bone thinning and muscle atrophy; it is also important to allow your body sufficient rest each in regard to the Radiation Therapy!

June Update

I thought it was time, once again, that I offered the following update. I can now report the following changes.


Changes:

• The fatigue continues ... but is somewhat improved because the Radiation Therapy has ceased, added to this, I am no longer working, as we are flying out to our new home in Chile on 26th June!!
• The hot flushes continue but with much less frequency and duration; thanks to the Androcur.
• Shortness of breath continues but is improved - see point 1 above.


• Night urinations have decreased to 2 or 3 per night!!


• Sleeplessness has decreased as a result of the above!


• Tiredness has also decreased because of the above!
• Sensitive skin (under the armpits) continues but is not troublesome.


• Hair loss - chest, stomach, under the armpits - continues but is not a problem.


• Breast (nipple) soreness and sensitivity almost gone due to Radiation Treatment (x3).
• Cognitive Impairment continues to improve; largely because I am forcing my brain to remember even small details - the old addage applies here - use it or lose it!!
• Confusion rarely becomes a problem, because of the above strategy.
• Memory loss has eased considerably - again because of the above strategy!

Unchanged:

• My attitude remains positive!
• Bowel movements remain good.
• I have maintained a weight loss of 2.5 kgs!

Now apart from the above, I can also report continued success with the use of a number of products that have helped to increase my strength and well-being.

• Berocca - available without a prescription.

I have noticed some general improvement in strength levels as a result. Berocca aids in releasing the maximum amount of energy available from the food you eat. Therefore it is very important to follow a well balanced and nutritious diet.

• 'High protein' energy drink as a breakfast supplement.

This I have noticed considerably boosts my energy level for a good start to the day!

• I also chomp on 3 or more Glucodin tablets daily.

The addition of these products has not only given me more energy at times but has also resulted in an improved diet.

I should also add, that I have been careful NOT to overdo ... just because I was feeling a little more 'normal'. I use these products, more for an improved sense of well-being; rather than an aid to 'doing more'.

While it is important to exercise sufficiently each day to stave off bone thinning and muscle atrophy; it is also important to allow your body sufficient rest each in regard to the Radiation Therapy!

May Update

I thought it was time, once again, that I offered the following update. I can now report the following changes.


Negative:

• The fatigue continues ... but is somewhat worse because of the Radiation Therapy combined with the complete androgen blockade (Hormone Treatment) and the fact that I am now back at work.
• The hot flushes continue.
• Shortness of breath continues and is slightly worse (as in point 1 above).


• Night urinations have increased to 5 or 6 per night!!


• Sleeplessness has increased as a result of the above!


• Tiredness has also increased because of the above!
• Sensitive skin - under the armpits - due to Hormone Treatment.


• Hair loss - chest, stomach, under the armpits - due to Hormone Treatment!!


• Breast (nipple) sore and very sensitive.
• Cognitive Impairment has improved, largely because I am forcing my brain to remember even small details - the old addage applies here - use it or lose it!!
• Confusion has lessened partly because of the above strategy.
• Memory loss has eased - again because of the above strategy!

Positive:

• No side effecs from the Radiation Treatment - apart form fatigue!
• My attitude remains positive!
• Bowel movements remain good - no bleeding, constipation or gastric.
• I am tolerating the Radiation Treatment exceptionally well!
• I have maintained a weight loss of 2.5 kgs!


• I have just begun treatment to stop the growth of breasts! Already, I have 'breast buds' growing under my nipples. This treatment (given concurrently with the that affecting my prostate) consists of 3 x doses of radiation (NOT IMRT) to both breast areas.

Now apart from the above, I can also report success with the use of a number of products that have helped to increase my strength and well-being.

• I have successly tried Berocca - available without a prescription.

I have noticed some general improvement in strength levels as a result. Berocca aids in releasing the maximum amount of energy available from the food you eat. Therefore it is very important to follow a well balanced and nutritious diet.

• I have also been taking a commercially available 'high protein' energy drink as a breakfast supplement.

This I have noticed considerably boosts my energy level for a good start to the day!

• I also chomp on 3 or more Glucodin tablets daily.

The addition of these products has not only given me more energy at times but has also resulted in an improved diet.

I should also add, that I have been careful NOT to overdo ... just because I was feeling a little more 'normal'. I use these products, more for an improved sense of well-being; rather than an aid to 'doing more'.

While it is important to exercise sufficiently each day to stave off bone thinning and muscle atrophy; it is also important to allow your body sufficient rest each in regard to the Radiation Therapy!

A Further Update

I thought it was time, once again, that I offered the following update. I can now report the following changes.


Negative:

• The fatigue continues ... but is no worse.
• The hot flushes continue.
• Shortness of breath continues.
• Head and Chest cold for two weeks - just beginning to clear.
• Cognitive Impairment conitunes to plague me!
• Confusion loves to play with 'cognitive impairment' - at my expense!
• Memory loss has continued - enjoying frolicking with the above two!

Positive:

• Night-time urinations have finally reached acceptable numbers [1-2 per night].
• Sleep has improved as a result of the decrease in night-time 'pitstops'.
• Bowel movements are returning to normal.
• Sinus has finally abated.
• I have finally begun to lose weight - 2.5 kgs!

Now apart from the above, I can also report that I have been experimenting with a number of products that [if correctly used] can help to increase strength and well-being; albeit temporarily.

• I have recently tried Berocca - available without a prescription.

I have noticed some general improvement in strength levels as a result. Berocca aids in releasing the maximum amount of energy available from the food you eat. Therefore it is very important to follow a well balanced and nutritious diet.

• I have also been taking a commercially available 'high protein' energy drink as a breakfast supplement.

This I have noticed considerably boosts my energy level for a good start to the day!

• I also chomp on 3 or more Glucodin tablets daily.

The addition of these products, I should add here, has not only given me more energy [at times] but has also improved my diet.

I should also add, that I have been careful NOT to overdo ... just because I was feeling a little more 'normal'. I use these products, more for an improve sense of well-being; rather than an aid to 'doing more'.

While it is important to exercise sufficiently each day to stave off bone thinning and muscle atrophy; it is also important to allow your body sufficient rest each in regard to the Radiation Therapy.

Some Thoughts on Treatment

I decided to post some observations and suggestions that I have found helpful, in the hope that others may benefit from my mistakes. My main goal here however is, to emphasise the need to be attentive to your own recovery, treatment, life etc.

Firstly, this post is not intended to denigrate the incredible professionals that make up my health care team; but rather to underscore the need for you ... the patient ... to be 'actively involved' in all facets of your treatment.

I do realise that the health care professionals who look after my treatment; are: 'run off their feet' and that our Health Care System here in NSW, is in crisis through lack of resources i.e. in: finance, number of patient beds, state of the art equipment etc, but most importantly - trained and experienced STAFF!

In what follows, I want to mention just some of the 'things' that can 'fall through the cracks' in regard to our quality of care if we are not attentive - this is not an exhaustive list, merely representative.

Some Thoughts

(A) Apart from the obvious; i.e. asking questions; I would also recommend that all patients conduct their own research into possible treatment options and the 'pros and cons' of each. I would also recommend that you conduct research regarding the medication/s that you are offered.

You should discuss any and all concerns, raised by your research, with your doctor. As an example of the importance of this ... twice now my Radiation Oncologist has prescribed a dose that was twice as high as (usually) recommended - which was subsequently reduced - after the fact.

1. When I changed from Anandron to Androcur, I realised that I still had some tablets at home, left over from prior to the LHRH analogues being introduced. These were 300mg tablets (the appropriate dose for that occasion) which at the time I tolerated well for 4 weeks. The Radiation Oncologist felt that such a dose would be OK. However, the usual dose is 150mg. When I brought this to the attention of the Radiation Oncologist's registrar however, she immediately halved the dosage - after conferring with the Radiation Oncologist.
   
   
2. On the second occasion the Radiation Oncologist had discussed the introduction of 'Flomaxtra' and recommended I take two tablets, two hours before bed, and immediately after food. He also suggested that if I found that the night-time urinations were 'under control' but not so the daytime, then he suggested I take one in the AM and one in the PM.
   

(B) One of the most difficult aspects of 'living with cancer' is the sense that your life is 'out of control! I believe that conducting your own research and discussing this with your doctor/s, is one way that you can take back some measure of control and at the same time feel like a valued member of the health care team affecting your treatment.

Remember you are entitled to be respected as an individual; you are NOT simply a disease with a number! You are also entitled to maintain your dignity at all times and to be informed of any change that might affect your treatment - in advance!

I am very fortunate to have such a skilled team of professionals looking after my treatment! But, I realise that these dedicated men and women, have limitations - like the rest of us! For example:

1. Most often, each team member is 'highly focused' on their particular speciality' and there-in lies the possibility of certain 'things' falling between the cracks.
   
   For example, I wanted to discuss an anomaly, that was noticed on the CT Scan, re my lymph nodes. My Radiation Oncologist however, replied:
   
   

"Sorry I'm not interested in tumour masses ... I'm treating this disease at the cellular level".

I wanted to respond:

"And I want to be treated with some respect ... this is important to me"!

But I didn't!

However, I will next time!

(C) There's something about our culture, that tends to place doctors (among other groups in society) upon pedestals; we tend to feel as though these authority figures are never wrong and should not be questioned! This is ludicrous when you stop to think about it! If something about your treatment is causing you concern, you have every right to demand an opportunity ... first: 'to be heard' and second: 'to have your concerns appropriately dealt with'.


(D) I am aware also, that the various streams of medicine that comprise the team that are part of my health care team DO meet regularly to discuss my treatment from a more holistic perspective; but I am not privy to such meetings and receive NO feedback as to what is discussed. In fact sometimes having your questions answered, is like 'pulling teeth' i.e. very painful! This is even more reason for the 'patient' to be vigilant towards his or her own treatment regime.

Further examples of how easy it is for 'things' to fall through the cracks (taken from an actual weekly review with my doctor):

1. I needed to remind the doctor that I should have had a 'liver function test' ... weeks ago! This I knew ONLY because of my own research! Oh ... ah ... YES, let's do that today. (The pathology request was marked URGENT).
   
   When you have no 'Case Manager' looking at your treatment from a 'holistic perspective', your treatment can suffer; as the various specialists tend to focus (mostly) upon their own field of expertise - therefore 'things' can be missed!




2. What can I do about the increased fatigue and subsequent breathlessness? I'm afraid there's not much we can do about that. But you should begin to tolerate that portion that can be attributed to the Radiation in about another week or so.
   
   Today I discovered, that there IS something that can be done! In fact there is MUCH that can be done in regard to fatigue. Apart from the obvious ... watch your diet, get enough sleep, pace yourself as necessary, take your meds on time AND exercise ... YES believe it or not, exercise not only assists with fatigue but also aids in controlling bone density loss!
   
   For example, today, I tried a 'protein drink' (recommended by a doctor - my daughter) one that athletes use to increase their energy levels. Not only did it taste good, but I experienced an almost immediate increase in my sense of well-being.
   
   Now don't worry, I wasn't about to rush out and attempt the very next triathlon event in the area; but with wisdom this supplement gives you energy in reserve as well the improved sense of well-being!
   
   I will discuss my entire diet with the Nutritionist next week. I have not seen a Dietician previously, but now with my new found appreciation for diet etc, it has become a MUST!
   
   For those wondering: "yes I have been on a strict diet prior to the Radiation Treatment; but this treatment restricts your dietary choices very considerably".




3. What about the 'confusion and memory loss'? You have so much 'on your plate' right now; it's no wonder you suffer a bit in this area!

While it is true that I have much on my mind, there are also a number of things that can assist in regard to 'confusion and memory loss' - just take a look around and find what works for you. For example:

I found that for me I need to undertake such activities as will stimulate my mind. The old adage: 'If you don't use it ... you lose it' ... applies very much here! But I also make sure that I have sufficient breaks!




4. My weight gain (9kg) concerns me is there anything you can suggest? I'm afraid not ... it goes along with the treatment ... particularly the Hormone Treatment.

While true, there remains some things that can assist in this regard. Firstly, it is recommended that we achieve certain nutritional and exercise goals. Care should be taken not to over-exercise when undergoing Radiation Treatment, but generally some walking and 'resistance training' would be suitable. Further weight lose can be achieved AFTER you have recovered from the Radiation Treatment.




5. In that case would you think that seeing a Nutritionist is advisable? Yes ... I think this is an excellent idea. I'll ring through now to obtain an appointment.

Now this response begs the question: 'Why was I not advised to seek such assistance before i.e. before my own research pointed this out?




6. Night time urinations have actually increased despite being prescribed 'Flomaxtra'? We might have to double your dosage.
   
   My research tells me that Flomaxtra doesn't really kick in for about 7 days; and since this is day 7, would you suggest we wait another week? Yes that would be very sensible.

I think I have said enough to hopefully motivate all patients (particularly those fighting a 'terminal illness) to be more attentive to their own treatment regime. Afterall, no one will take as much interest in your life as YOU!

Another Update

I thought it was 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.


• Shortness of breath (after exertion) has returned.


• Sinus (1 week) unrelated to meds.


• Night-time urinations reached an unacceptable level.


• Cognitive Impairment has "reared it's ugly head."


• Confusion has entered the fray!


• Memory loss has recently begun to have an increased (unwanted) affect.

Positive:

• Night-time urinations have begun to decrease in number.


• Sleep has improved as a result of the decrease in night-time 'pitstops'.


• Bowel movements are returning to normal.


• Sinus has finally abated.

As of 3 days ago, the laxatives were discontinued; as Radiation Treatment tends to cause an irritable bowel and frequent (loose) movements. As a result, Metamucil was introduced. Also 'Flomaxtra' was introduced in order to improve urination.


Radiation Therapy

The Radiation Therapy has continued to go well. I simply cannot fault the staff ... the care and support we have received has been first class. Although I'm not sure whether this is not partly due to our two adorable grandchildren attending the Treatment Centre each day!

Another Tough Day at the Office

You've gotta laugh ... if you don't you'll probably end up crying!

Picture this: A lone male, sitting naked on the only loo; adjacent the Radiation Treatment room ... there's a sense of urgency, you don't want to be too long!

Time is of the essence, you're about to be called in for your treatment in just a few minutes; meanwhile you haven't managed to open your bowel! And this is the only loo (Male or Female).

In your right hand you have a tight grasp on a 500ml bottle of water; this has to be consumed in minutes!

You know, that you can't afford to empty your bladder - you've gotta hold it - but it is imperative that you empty your bowel ... and pronto! Now ... there's a definition for internalised conflict!!


And so, with an enema in the other hand you take the only course of action available to you ... times running out, you have got to go!

Sniffing constantly because of an incessantly runny nose and wiping away the tears; you are just glad that this will never be: a 'Kodak' moment.


Well finally ... with the job done, you march out to the waiting just in time to hear your name being called.

"Mr Purcell ... how are we feeling today"? "Oh ... ahh ... I'm good thanks".

You couldn't be bothered going through the whole story - sometimes people REALLY don't want, or need, to know the whole truth!

With the treatment over and successful, by all accounts; it was off home to have a rest and try to shake off the dreaded sinus attack!!

And you thought I was crying ... didn't you!

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!!

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!