GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

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A Cancer Patient Caregiver Perspective

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You Are The The Wind Beneath My Wings

You Are The The Wind Beneath My Wings

In my course of seeking information on all aspects of prostate cancer and cancer in general, I have a list of favourite sites I visit daily to keep me up to date with the latest issues. I have just come away from one of these sites nearly in tears with one of the articles offered regarding a brief compendium from a spouse of a man. This article is one of the most powerful and revealing insights into what it means to be a loving partner and care giver to a spouse who has been diagnosed with this horrible disease.

I do not care if I am infringing on any copy write prohibitions by posting this article here on this site, as I think this information deserves a wider appreciation by readers. I apologise in advance if anyone may be offended, but I believe this is an important disclosure that uplifts the spirit on what it means to love someone and confirms the vows of:  “In sickness and health, for better or worse, until death do we part“. To often the role of the care giver in these situations is overlooked and they are left to battle their own demons in often miserable circumstances. So here is the letter that appeared on the web site “malecare advanced prostate cancer.”

http://advancedprostatecancer.net/

So True

So True

As I have said before, the true unsung heroes of our fight against advanced prostate cancer are our caretakers. Our caretakers are our saints, they help educate us, they advocate for us, they shield us and they make us as complete as we can possibly be. They improve our lives and help us get through the day with love and enjoyment.

Sadly, they do this for us at great personal costs. A caretaker posted the following on the advanced prostate cancer online support group. I thought that it was important for all of us, both prostate cancer survivor and caretaker. It talks of her frustrations, pain, her reality.

I attempted to read the link but the uro site wasn’t very friendly. That said, I could say that as a spouse I know more about prostate cancer than I ever wanted to know.

My husband is so overwhelmed by the medical jargon, poor explanations by previous oncologists (yes, we fired him) the confusing sounding names of medications, treatments and just about everything to do with his cancer. I do the research, find layman friendly articles and generally find myself explaining to him what is going on with his disease progression.

I have an advantage by being a nurse but yet to understand some of the information I too need a medical dictionary. It is overwhelming. I am not just the wife and support, but his advocate in wading through a confusing and scary disease that has no cure at this stage.

My husband doesn’t avoid his diagnosis, disease, treatment and projected outcomes but doesn’t want any doctor to give him time frames. He tells them to tell me. Luckily, we haven’t come to that. He talks openly about how he feels, what side effects he thinks he might be experiencing and he does read the brochures or booklets provided by the pharmaceutical companies. He is better about discussing his feelings, side effects and does ask questions when we see his oncologists.

We have been dealing with prostate cancer for 10 years. This month is the anniversary of his prostatectomy and he was clear for two years after that. His rising PSA began in 2006 and become hormone resistance in 2011. He had soft tissue mets initially followed by bone mets. He has taken Provenge, Zytiga and Xtandi

He depends on me, each step of the way, to explain the treatments, CT scans, lab reports and what it all means. I have been understanding of him, frustrated, sad and grieve for the loss of his energy and his sexuality.

I tell him when he needs to go talk to someone because he’s being an angry jerk. He tells me when he doesn’t want to know what I know medically or see on CT reports. I never explained the last one to him, only that his bone mets had progressed. He didn’t ask, I don’t volunteer.

I have never pushed or asked for our sexual relationship to resume because I am educated and know it won’t. Period. Hormones to suppress testosterone suppress libido and women need to know that. We have talked about it but it isn’t important. He is alive. There’s more to a relationship than sex.

I have this wonderful group for support and encouraged him to get involved but after years of a government job he swore after he retired at 60 to never have to log onto a computer daily again! He likes when I read him your posts.

I also have a group of women I am close with at the touch of a keyboard or phone and they provide a tremendous amount of support and we all stay on top of the new drugs and treatments available for our guys! We support each other when we are frustrated.

Maybe a study on how patients and their caregivers find and are given information so that they could understand would be a good one as well as how they cope day-to-day.

I admit I am stressed, anxious and recently I have been diagnosed with stress related hypertension, but I find my own outlets of talking to my “blue sisters” emailing them, Face Booking them, reading and responding to group posts and by Humor. Humor has always been my shield and I joke with my own doctor that I am fine and she will know when I’m not when they call her and tell her I have been picked up for marching in my own parade nude down Main Street!

Am I worried I won’t do a good job taking care of my husband when he can no longer care for himself? Absolutely, but I will do the best I can. I try to take care of myself and not think of the possibility that I will be alone, I have been alone before and I will survive. We all will be with each other.

I read, walk, paint and still work part-time and have a network of family and friends who are a great support.
I would like to read further studies if I could ever get the uro website to function!

I give virtual hugs, bright blessings and heartfelt thanks to all who post on this group, who live with the stress of this disease, the uncertainty and the pain. Pain both emotionally and physically. As a spouse, caregiver and advocate all I can say is Keep Up The Fight! Support PC research! Love each other! “

Take My Hand My Love

Take My Hand My Love

AMEN and

Thank you God

Lee aka Popeye

A bit of this and a bit of that

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A growth Industry

A growth Industry

A Personal Update

I have deliberately delayed writing an article until now, as a lot of things are still up in the air for me at the moment. I was trying to wait things out so I could have something definite to report on my progress or regression whichever it may happen to be. The past two weeks have also brought a week of gales, storm surges, beach erosion and a cyclone crossing just north of my place. I also had a nasty fall over a week ago and apart from some skin missing,  I fear I have damaged a rib or two. This has caused me a fair bit of pain and slowed me down quite a bit.

So to fill in a bit of a gap I decided I had best produce this little filler as an update for my readers until the following test results have returned. I have had a bowel screen test and I will be having a PSA test done tomorrow. I am scheduled to have a cystoscopy on the 26th February.(camera inserted into the urethra and bladder area) This is to investigate the blood in the urine issue, which continues to persist. I should have all the results to hand at the end of this month and should be an indication of where I am heading.

The past few weeks have been a little concerning as I had a bout of prostatitis and this  has led to a fair bit of groin and loin pain along with increased tiredness and leg weakness. Then along comes the fall and the rib and chest pains are now added to the load. Sounds pretty bleak as I re-read what I have written here but I am still upbeat, happy and look forward to each day.

Some interesting Cancer News

A recent news article caught my attention regarding the fact that cancer death has now overtaken heart disease as the major killer of Australians. Here are a couple of extracts for my readers

The Heart Foundation says while cancer may have overtaken heart disease as Australia’s biggest killer, when cardiovascular disease is looked at as a whole, it adds up to be the most common cause of death.

Heart Foundation national director Dr Rob Grenfell says cardiovascular disease, which includes strokes as well as heart and vascular diseases, killed 45,622 people in 2011.

It was closely followed by cancer, which claimed the lives of 43,721 Australians.

Heart disease alone killed 21,500.

Dr Grenfell says cancer and cardiovascular disease have common risk factors such as smoking, obesity and inactivity and could be tackled together.

“As a group of diseases, cancers and cardiovascular diseases are attributable to 60 per cent of the country’s deaths and both are largely preventable,” he said.

“If we were to have a coordinated approach to the management of these risk factors we would reduce the prevalence of preventable deaths.”

In Other Reports

World wide there were 8.2 million deaths from cancer in 2012 and doctors predict global cancer rates will increase by three-quarters over the next two decades and they expect 20 million new diagnosed cases by 2025.

Tobacco use is biggest risk factor, accounting for 70 per cent of lung cancer deaths.

Africa, Asia, Central and South America account for 70 per cent of world’s cancer deaths.

In Australia and other Western countries, the rise in cancer cases has been attributed to ageing populations and increased screening.

Lifestyle has also been highlighted as a major factor, with cancer particularly prevalent in countries where people have a poor diet and inactive lifestyles, and countries with high smoking rates.

Alcohol is a class one known carcinogen, it’s listed by the World Health Organisation as such.”

Research shows women’s risk of breast cancer can increase by having as little as one alcoholic drink a day. For men, the risk of tumours increases with two to three drinks a day.

Prostate cancer is the most commonly diagnosed form of cancer in Australia, with the Cancer Council putting the number of diagnoses in 2009 at 21,800.

Prostate Cancer Foundation of Australia chief executive Anthony Lowe says more than 3,300 Australian men die from the disease each year and one in four men over 85 will develop it.

Can we stop this trend???

Can we stop this trend???

I could not resist including the following comment by a reader of these news releases as a matter of interest for my readers.

“Neither of them are our biggest killer, alcohol is. It is not only related to heart disease and many forms of cancer, but strokes, diabetes, liver damage, depression driven suicide, obesity, plus many other diseases. Add to that 1 in 3 car deaths, drownings, pure and simple alcohol poisoning, violent deaths, poisoned unborn babies and so on. It fills up our prisons, courts, and hospitals. It takes up to 80% of all police time, the cost is astronomical. The worst of it is you can be killed in your own bed whilst being hit by a drunk driver. Unlike smoking which does little of these things, it is still advertised, still sponsors sporting events where it is sold, (And people drive home drunk) and still sold at 3 am where much of the problems occur.
Ban the advertising and sponsorship, shut the shop early. Then there is the connection between alcohol and drugs, another story for another day.”

Cheers

Lee aka Popeye.

 

Written by Lee

5 February 2014 at 9:54 pm

Welcome back for 2014

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Fitzroy Island Christmas 2013

Fitzroy Island Christmas 2013

Hello to all my readers for 2014. I hope you all had a wonderful festive season as I did and are looking as optimistic as I am for the coming year. My wife and I spent a magical three days over Christmas with both our son’s and daughter’s families at beautiful Fitzroy Island near Cairns, I have purposely not submitted an article until now, as I was hoping to report on much more than I can do in this issue, however a much fuller report must wait for now, until things become a little clearer during February.

Back in November 2013 my pathology reports were very good apart from the discovery of blood in my urine. At the time I was told that I could look forward to a procedure called a cystoscopy that involves a camera being inserted into my urethra to investigate the problem. This procedure would likely take place within a three-month period. So I figured my blood in the urine symptom was not as urgent as I had imagined due to the long wait for the procedure to take place. I was aware that this symptom could be caused by the radiation treatment I received twelve months previously and or many other reasons from a dire prognosis of other cancer problems or to every day mild infections. I was also feeling extremely healthy at the time with good energy reserves and normal mental functioning so I have not been overly concerned with the wait.

I have now been told the procedure will take place on the 19th February so I should have further news on this issue around the middle to late February to report back on this website. The blood in the urine discovered in the pathology confirmed what is known as microscopic hematuria, however I was aware of the problem for some time previously as I had periods of gross hematuria where the blood was extremely visible from time to time. Over the previous two months I have experienced periodic episodes of gross bleeding with the passing of clots from time to time. Now this may sound like it should be a bit of a worry but I have been feeling so much better within myself otherwise, that I am not overly concerned for the moment until the results of this procedure are known.

I guess you could say, that because of my overall other health benefits at the moment, it is my belief that this problem is the result of my own bodies immune system, repairing itself and ridding the crud out of my system from all the horrible things that have taken place in my pelvis since I was diagnosed back in March 2012. I have no way of knowing if my hunch is right until hopefully by the end of February when I will know for sure if my optimism will be justified.

In all other health areas my pathology tests and body scans have confirmed that I am in better shape than I have been for the past two years. None of the scans show any spread to the bones or organs, my PSA remains almost undetectable. My blood pressure is the best it has ever been, my sugar levels are now back to normal, my cholesterol levels are also normal and my liver function tests are also OK. The best part is, I actually feel healthier than I have for a long time. The doctors have agreed that if my PSA remains undetectable at my next test due in February that I will be able to come off the hormone implant therapy (ADT ) in March and that is great news for me.

So that brings me to the end of this article for the time being and I look forward to be able to present a favourable report on the cystoscopy procedure in due course. In the meantime I will continue to enjoy my new-found sense of wellbeing.

On board the old boat Fitzroy Island 2013

On board the old boat Fitzroy Island 2013

Lee aka Popeye

Christmas Greetings and Best Wishes to Everyone for 2014

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Seasons Greetings To All

Seasons Greetings To All

With the end of 2012 just about to flash by I thought I would end the year with this article and return again in mid January 2014. My health at the completion of 2012 is pretty OK with all blood tests looking good. It appears I am in remission and I give thanks for my brighter future. I have been told I will be able to stop the hormone therapy implants from March 2014 until further notice and this has given me much to look forward to. the prospect of the cessation of the ADT (hormone therapy implants) gives me great hope that the side effects of this treatment will disappear and I should get an increase in my energy and cognitive levels.

There is a small dark cloud still to be investigated of blood in the urine. I will be undergoing a small procedure with the insertion of a camera to investigate this issue early in the new year. At this early stage it is thought to be an infection in my bladder and it is being treated with antibiotics for the moment.

As I close off for 2012 I would like to offer the following two pieces of inspirational pieces that have been sent to me throughout the year. Both of these letters grabbed my imagination and I would now like to share them with my readers. and I wish everyone the very best for the Christmas period and my hopes for a safe and peaceful 2014 for mankind.

Lee aka Popeye

A life that matters

Live a life that matters Ready or not, someday it will come to an end.

All the things you collected, whether treasured or forgotten, will pass to someone else.

Your wealth, fame and temporal power will shrivel to irrelevance.

It will not matter what you owned or what you were owed. Your grudges, resentments, frustrations, and jealousies will finally disappear.

So, too, your hopes, ambitions, plans, and to-do lists will expire.

The wins and losses that once seemed so important will fade away.

It won’t matter where you came from, or on what side of the tracks you lived, at the end.

It won’t matter whether you were beautiful or brilliant. Even your gender and skin colour will be irrelevant.

So what will matter? How will the value of your days be measured?

What will matter is not what you bought, but what you built; not what you got, but what you gave.

What will matter is not your success, but your significance. What will matter is not what you learned, but what you taught.

What will matter is every act of integrity, compassion, courage or sacrifice that enriched, empowered or encouraged others to emulate your example.

What will matter is not your competence, but your character.

What will matter is not how many people you knew, but how many will feel a lasting loss when you’re gone.

What will matter is not your memories, but the memories that live in those who loved you.

What will matter is how long you will be remembered, by whom and for what.

Living a life that matters doesn’t happen by accident. It’s not a matter of circumstance, but of choice.

Choose to live a life that matters.

(David Sandoe OAM)
(Pam Sandoe OAM)

Growing Older

You know. . . time has a way of moving quickly and catching you unaware of the passing years. It seems just yesterday that I was young, just married and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all the years went.

I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams.

But, here it is… the winter of my life and it catches me by surprise… How did I get here so fast? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like.

But, here it is… my friends are retired and getting grey… they move slower and I see an older person now. Some are in better and some worse shape than me… but, I see the great change… Not like the ones that I remember who were young and vibrant… but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we’d be. Each day now, I find that just getting a shower is a real target for the day ! And taking a nap is not a treat anymore… it’s mandatory ! Cause if I don’t on my own free will… I just fall asleep where I sit !

And so… now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did !! But, at least I know, that though the winter has come, and I’m not sure how long it will last… this I know, that when it’s over on this earth… it’s over. A new adventure will begin !

Yes, I have regrets. There are things I wish I hadn’t done… things I should have done, but indeed, there are many things I’m happy to have done. It’s all in a lifetime.

So, if you’re not in your winter yet… let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life please do it quickly! Don’t put things off too long!! Life goes by quickly. So, do what you can today, as you can never be sure whether this is your winter or not! You have no promise that you will see all the seasons of your life… so, live for today and say all the things that you want your loved ones to remember… and hope that they appreciate and love you for all the things that you have done for them in all the years past !!

“Life” is a gift to you. The way you live your life is your gift to those who come after. Make it a fantastic one.

Live it well! Enjoy today! Do something fun! Be involved, Be happy! Make every day a great day!

Remember “it is health that is real wealth and not pieces of gold and silver.

Live happy in 2014!

Lastly, consider the following:

Today is the oldest you’ve ever been, yet the youngest you’ll ever be so – enjoy this day while it lasts.

Going out is good… Coming home is better !

You forget names…. But it’s OK because other people forgot they even knew you !!!

You realize you’re never going to be really good at anything…. especially golf.

The things you used to care to do, you no longer care to do, but you really do care that you don’t care to do them anymore.

You sleep better on a lounge chair with the TV blaring than in bed. It’s called “pre-sleep”.

You miss the days when everything worked with just an “ON” and “OFF” switch.

You tend to use more 4 letter words … “what?”… “when?”… ???

You notice everything they sell in stores is “sleeveless”?!!!

What used to be freckles are now liver spots.

Everybody whispers.

You have 3 sizes of clothes in your closet…. 2 of which you will never wear.

But Old is good in some things: Old Songs, Old movies, and best of all, OLD FRIENDS !!

Remember, It’s Not What You Gather, But What You Scatter That Tells What Kind Of Life You Have Lived.

See you all next year

See you all next year

Cheers

Lee aka Popeye

.

Written by Lee

17 December 2013 at 6:00 am

Cancer Fatigue Issues According to Me

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Chronic Fatigue Blues

Chronic Fatigue Blues

In this article I would like to offer some personal views regarding fatigue and cancer. I present this subject here as I believe it is a major issue for any cancer patient. Since my diagnosis in March 2012 (and in hindsight much earlier than then) I had been and still do, experience varying degrees of fatigue over varying periods of time. This personal experience gives me some understanding and experience to be able to discuss fatigue and cancer from my point of view and from other information available.

I bet that if the question was asked of cancer patients ……How do you rate the effects of fatigue on your quality of life???  The replies would almost be a unanimous 10, where 1 would be no effect and 10 the worse. This should not be surprising, as studies have demonstrated that fatigue is a significant issue long into cancer survivorship. Between 70% and 90% of cancer patients will experience cancer fatigue and in some cases prior to diagnosis, then throughout the treatment period and extending into months post treatment. More than 50% of cancer patients will continue to experience fatigue symptoms for many years post curative treatment.

So what is my cancer fatigue like.

Cancer fatigue is very different from the everyday tiredness experienced by most people. I think of cancer fatigue as exhaustion of the body and the mind that is not relieved by sleep or rest. It is caused by both the disease itself when cancer cells produce toxins and by treatments such as drugs, chemotherapy, radiation, surgery and the like. As an example of cancer fatigue I will attempt to give a personal view of my experience with this side effect.

There is an old John Denver song I love that just about sums it all up with the lyrics….”Some days are diamonds….Some days are stones.”  My fatigue comes and goes with just a few warnings of its arrival and no advice as to how long it will stay on each visit. It tends to hang about for at least a day or two but has been known to settle in for a few weeks. Each fatigue event slowly subsides and there begins a period of recuperation from the effects, a bit like climbing out of a hole in the ground. Then sometimes the fatigue will return before you actually get out of the hole and you tumble back down.

I have discovered a few small warning signs that indicate my bad periods. The return of bad disturbed sleep, a weakness in the legs leading to an increasing difficulty climbing stairs or slopes. These always herald the return of cancer fatigue and back down the hole I go.

  • The weakness in the legs slowly spreads to hips, back and arms.
  • My IQ seems to dwindle as I become muddle-headed and forgetful. I find it an effort to even talk and when I do sometimes my speech is slurred.
  • I find I cannot multi-task, I have to concentrate and focus on one thing at a time.
  • I seem to make many mistakes when trying to organise or complete a set task.
  • The time it takes me to complete any task is multiplied by ten from normal .
  • I become clumsy and accident prone.
  • I can become breathless to the point it seems a real effort just to breath.
  • I keep my jacket handy as I can feel cold at odd times even though it is summer and I live in the tropics…….Very strange this one.
  • I can drop off to sleep at the drop of a hat at any time or any angle, doesn’t matter if I am in the car, sitting at the desk, in a shopping centre or entertaining visitors.
  • Everything seems such a huge effort with no relief.
  • Negative thoughts increase and I need to monitor these carefully.
How am I doing today chart

How am I doing today chart

So how do I or you manage this side effect of cancer fatigue

Management is the key word here and part of the answer, is to advise your medical team of the problems and symptoms you may have. Some of the tactics I advise are as follows but please remember I am not a doctor so you should seek medical advice:

  • I wrote a previous article promoting the regular use of citrus juice and pulp mixed with cold water that I use daily. The citrus juices I recommended were lemons and limes. I still hold the view that this has been extremely beneficial to me personally in keeping my energy levels up.
  • Doctors may be able to prescribe drugs to lessen fatigue issues when it is found they are related to a diagnosed causal effect of symptoms, or to lessen the effects of treatment drugs.
  • Stay as active as you can and follow some routine daily exercises such as walking.
  • Practice good nutrition and a balanced diet. Possibly work with a dietician to achieve this.
  • Ask for help in achieving routine chores if you need to.
  • Be flexible and set realistic goals.
  • Shift your focus from thinking about your fatigue, distract yourself and do something else eg listening to music.
  • Consider learning and practicing medication, yoga or tai chi.
A program shutdown

A program shutdown

“Some days are diamonds……Some days are stones……Some times the hard times won’t leave me alone.

Some times the cold wind, blows a chill through my bones……Some days are diamonds……Some days are stones”.

Lee aka Popeye

Further Reading.

http://en.wikipedia.org/wiki/Cancer-related_fatigue

http://www.cancervic.org.au/about-cancer/types-treatments-trials/fatigue_and_cancer

http://www.cancerresearchuk.org/cancer-help/coping-with-cancer/coping-physically/fatigue/what-is-cancer-fatigue

http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/fatigue/fatigue-landing

http://www.irishhealth.com/article.html?id=20944

The Spicks and Specks of a Cancer Patient

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Now Showing

Now Showing

I know it seems a while since I have published anything for readers on this site and I do have a couple of excuses to offer for my lack of effort. I Thought my last two articles could stay up front for a little extra time due to their content, and the possible benefit a person might receive who might also be doing it tough. My other excuse is that my health over the past four weeks has not been good at all, and as a result I have undergone a series of tests and scans to try and resolve some health issues.

I decided to put this article together and call it Spicks and Specks. It contains a bunch of stuff that has been happening to me over the past couple of months, plus a personal comment from me regarding cancer in general. Spicks and Specks was the title of a BeeGees song released in the mid 1960’s and I loved it. The title just seemed appropriate for this bits and pieces article.

Touching on the BeeGees has just reminded me to let my readers know that since September 22nd I have been the proud owner of a Ukulele given to me by my family as a birthday present. Prior to this and for many years I played the guitar poorly and sang even worse, however my family knew I harboured a desire to get hold of one of these little fun instruments and give it a go ( they most likely had, had enough of my guitar playing) . So here I sit looking across at my happy little hippy friend all decorated with stickers, and yes I do play Spicks and Specks on occasion. Everybody should have a Uke.

My latest blood test results were excellent and the PSA result was 0.02 almost undetectable. However I have been experiencing quite a bit of pain in the hips, groin, leg and lower back area. I also had a problem with weakness in the legs and huge fatigue issues. So after presenting to the doctors, they decided I should undergo some scans and tests which I completed and the results were all clear of progression, with one small area needing further investigation. It seems I have blood in the urine and this will involve the insertion of a camera to inspect the urethra and bladder and I will report back when the procedure has been completed.

While all this doctor visits,scans and blood tests was going on, it occurred to me how having a cancer diagnosis is all about management. My current view of cancer is that I see it as a chronic illness, just like any of the dozens of other chronic illnesses that abound. Cancer may be more prevalent than other chronic illnesses but it seems to me that having cancer of any type is still, all about the management of treatment designed to cure, or lessen the impacts and maintain and extend a patients quality of life.

Research for a cure for cancer goes on and over time humans have made many discoveries and strides forward in cancer management and treatment. When looking at some of the statistics it is interesting to see just how far we have come with testing and treatment. Consider the following:

  • One man in two will receive a cancer diagnosis by the age of eighty-five years and for women it is one in three.
  • Over 120,000 Australians will be newly diagnosed with cancer this year.
  • The good news is that the survival rate from cancer has increased by 30% in the past two decades.

I might expand on this subject of living with and managing cancer in future articles from my own personal experience and from other information freely available. It is an interesting way of life, this living with cancer stuff and it has many different facets to explore.

In my small rural community and amongst the residents I personally know, there has been one other man diagnosed with prostate cancer and three ladies diagnosed with breast cancer. All of us have been diagnosed within the past eighteen months and this has been a bit of a shock to me regarding the prevalence of cancer among us. I now have to admit that when I was healthy and cancer free I never previously noticed those less fortunate at the time. It is interesting how blind some people can be at times, myself included.

Even with pain and fatigue issues I am still able to get about and contribute to the workings of our household. I still try to do my daily walks and exercises but most days I need a pensioner nap in the afternoon. I have been able to put my recent mental melt down behind me with the help of counselling from the Queensland Cancer Council. That event was a bit scary for me but I have learned a great deal about myself and the human response to moments of despair from the experience.

And that my dear readers is my spicks and specks for the moment.

Everyone should have a Ukulele

Everyone should have a Ukulele

“All of my life…I call yesterday…..The spicks and the specks of my life gone away. Everybody…. spicks and specks…..spicks and specks now…..spicks and specks.”

Lee aka Popeye

Losing and Regaining The Plot Part II

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Sometimes this is difficult

Sometimes this is difficult

Recently I was in the process of drafting a different article than the one that now appears here. At that time I was head down working on that draft when I was suddenly interrupted by some Eureka thoughts in regard to my recent emotional meltdown. Answers  to the jig saw that confounded me in my original story on losing and regaining the plot came pushing through and I could not ignore them. So here is my self-analysis for those who may be interested. I make no apologies to readers on the “poor me” syndrome that has been displayed by me as I have tried to be up front and tell it as it is. I can only hope this whole episode may reach out offering some hope to some one else who may also be battling to keep on an even keel.

Before I begin I must insist on stating the following:

I have been blessed in contacting the Queensland Cancer Council counselling service.  I have found this free service of immense value in trying to make sense of an out of character response  and series of actions that overwhelmed me recently. I am indebted to them for their professional and yet personal attention that they have offered me and continue to do so. I would urge anyone in need, either cancer patients, their friends, family and carers who require emotional support and understanding to contact them for assistance.

In one word what happened to me was GRIEF. I was experiencing un-resolved grief followed by illogical anger that was the cause of my emotional boil-over and subsequent actions. Grief is not just an emotion reserved for those who have lost a loved one, but can also be for a loss of many important things in a persons life. To understand my particular piece or pieces of grief you will have to know a bit about my life.

My wife and I have spent the past forty years sharing a love affair of salt water and boats who sail on it. I have been an avid explorer and adventurer of anything to do with just mucking around with boats. I have also been proudly employed for twenty years in the marine industry in a position where I have had the privilege of assisting people in distress, preventing maritime environmental disasters and efficiently and safely assisting in operating  ports in Queensland. I have owned and operated many boats in my life, the last one for over twenty years.

In 2009 my wife and I decided to hand my yacht of twenty years over to my daughter and her husband as I felt I could no longer manage the maintenance on it on my own. I loved that old piece of old timber and fibreglass but age had caught up with me, and unknown to me at the time, prostate cancer was likely taking hold of me. So with the assistance of my wife,  daughter my eldest grandson and a good mate of mine we sailed the boat from Mackay to her new home in Cairns Queensland. My Daughter and her husband have spent most of their spare time since 2009 fixing and updating the boat for their own use.

I had the distinction of retiring from my maritime profession three times since 2007 the final time was when I was diagnosed with advanced prostate cancer. My work place was continually short-staffed due to the lack of qualified operators so my first two retirements were short-lived. The last retirement appears however to be permanent.

Recently I was in Cairns for an extended stay which included a planned cruise in my old boat with my daughter, her husband and family. Also an old army friend and my eldest grandson were arriving to join us. Three weeks prior to the trip were spent by me assisting my son-in-law and my daughter do some much-needed maintenance on the boat.

It is here at this point, that the start of the groundwork had began for my un-resolved grief and subsequent problems. I found it most difficult to work on deck with my stiffness, loss of balance and little strength in my legs. While kneeling on deck doing small tasks I was unable to get to my feet without assistance. When my daughter and her husband had to call it quits and go back to work for a few days I offered to stay on board and continue working on my own. They flatly refused my offer without saying why and it took me only a few seconds to realise they were in the right in rejecting my offer. I had quickly figured it out that they had understood, that for safety reasons I should not be onboard on my own. Later I was to fully realise that I also did not have the balance or strength any more that was needed to operate some of the gear on board while sailing about.

We had our trip in perfect weather and had a wonderful trip. It felt marvellous for me being back out on the water visiting reefs and islands: A truly perfect trip…………..perhaps my last?? Who can say for sure?? After the trip I travelled with my wife and my grandson up to the tablelands behind Cairns and stayed with my wifes younger sister. While we were  there  we visited various cemeteries in the search for family history stuff. It was here that in my wanderings around the graves that I became a bit philosophical while reading the headstones. I remember thinking to myself of the futility of life and the inevitability of death for all of us. This line of thinking was also to play a big part in the mixing bowl of emotions that was about to erupt for me.

I had been away for nearly two months and out of my normal routine. I had been off my new medications because of my upset schedules. I had touched base with a part of my life that used to be such a huge satisfying pastime for so many years. I had wandered and pondered through peoples identities who now lay in various fields scattered throughout the Atherton Tablelands.

I began to grieve without realising what was happening to me. I was grieving for the loss of the man I used to be. I was grieving for the loss of the promise of more fine weather sailing, the exploring and adventuring that still lay out there to be discovered. I was grieving for the loss of my occupation, the satisfaction and feeling of self-worth I received by giving it my best shot.  I grieved for the perceived futility of life in general and for all the people and their loved ones who inhabit hillsides all over the world.

My grief lay hidden inside of me unable to be expressed until I turned it into anger. Flight or flight is the accepted perceived action of a person who is stressed. Well I believe I did both on that night. I used the small disagreement with my wife as the excuse to take flight and the thoughts of suicide I had during that flight was an expression of anger. The anger was not directed toward my wife but rather to the cancer and what it had done to me. I believe my rationalisation for trying to find the courage to drive my car into a tree that night was my fight response. Doing so would have cheated the disease of further degradation of my health. After all, had not the graves on the hillsides convinced me at the time, that life was futile and death was inevitable in any case.

Thinking now in a realistic way, I can see that there are many causes that could have an impact on a person. Life is a bit of a raffle not knowing what may lie around the corner that can change a persons circumstances forever. My good fortune has been to survive long enough to have enjoyed the things that have been important to me throughout my life. Death, accidents, other chronic illnesses and any of the thousands of poor decisions I made along the way could have affected the outcome for me. I have been extremely lucky to have come so far with so many brilliant memories.

As for the graves on the hillsides. I can now see that there is a much more to these people s lives and circumstances than just names and dates on a tombstone. All of these people from the past had stories and events meaningful to them and their families and loved ones of their times.  Yes death is inevitable for everyone, but so is life……….life exists to be lived, experienced, to laugh, to cry, to love, and be loved. Yes and perhaps…………..just perhaps there is more to death than life itself.

Perhaps a re-boot could be needed

Perhaps a re-boot could be needed

There were many private unexpected tears shed by me over these thoughts as they revealed my hidden unresolved emotions. I hope I have been successful in telling my little story so that it is easily understood. I am convinced I have resolved my grief for now and just like Bilbo Baggins, I can move on and go exploring again to find new adventures and new satisfaction. Perhaps slay a dragon or two, or save a damsel in distress, who knows????

Lee aka Popeye

Losing and Regaining the Plot

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Hoplessness

Hoplessness

I apologise to followers of this site for the delay in new material, but I was not overly concerned as I thought my last subject matter was more than relevant to carry us through. I have had a bit of a rough time emotionally lately as you will see and at one point thought I would not relay this information on to this web page. However Greg has whispered in my ear to remind me, that together we promised to supply on this web page personal information about both the good and the bad, the warts and all stuff. So I have decided to include my latest fight with the devil and lay it all out here in public.

I could have decided not to reveal this personal issue and kept it private but I have decided to be open and frank with my readers in the hope that others that read this article may receive some benefit from my story. It is a truism that you are never alone in life in both good times and bad times. Here it is for those who may benefit: The following personal account of my losing the plot and regaining some semblance of normality. Given more time I would have liked to present this information  as a much more profound account, but that was not to be. So here it is in a raw emotional article of fact.

Recently I spent six weeks in Cairns visiting my daughter and her family. This was made possible because my wife had agreed to house sit her sisters property which is also in Cairns while her sister was away on a trip. The visit went well but was full of stress for a number of reasons which are much too complicated for me to go into in this article. Besides the stress, it was a very successful visit none the less and culminated in a sailing trip for myself and my daughter, her family, an old army friend and my eldest grandson. We visited the reef and Fitzroy Island and had a ball.

As I was out of my normal routine, medication for my newly acquired diabetes diagnoses went out the window as did most of my normal fitness regime along with diet and alcohol consumption. However I returned home in what I thought, was a happy frame of mind looking forward to getting back into my normal regime. I had no idea that within two days my world was about to implode.

The following information is still as weird for me today as I write this, as you are about to read. Within two days of our return I had a minor disagreement with my wife and something snapped inside my head. I stormed off with a packed suitcase, left my mobile phone and medication at home and took off in the middle of the night. I departed on an insane five-hour drive and headed out to my little sapphire claim west of Emerald.

The stuff that was going through my head during the drive convinced me, that It was better if I just up and died immediately, right then and there to relieve my wife and family of all the rotten stuff that may be ahead of me. I felt I could spare them the horrible ordeal that I felt lay in the future. I felt pretty old, passed my used by date, worthless, useless and hopeless. Many times during that manic nights drive, I seriously contemplated suicide by swerving off the road and driving into the nearest tree. However at the last moment I lacked the courage to carry it through. I spent the next week at the camp re-evaluating my position and trying to find some sense in it all. I remained off my medications and refused to eat with the intention of hopefully bringing on a heart attack ( I now cringe at this mental gymnastic of mine.)

My son eventually turned up at the camp in a worried state at the direction of his worried mother and we were able to have a sane conversation. The result of all this is, that I returned home to Mackay in a stunned state and contacted the Queensland Cancer Council. They have a counselling service available free for cancer patients and their families. I decided to contacted them as I did not want to go to my GP for fear of just being handed more medication. The Cancer Council offered me the option of an independant view and as such they have been remarkable.

Thinking back on my emotional state at the time, the main problem for me was trying to understand what led me to behaving and thinking in this way. I still cannot work it out and perhaps I never will. I thought I had my demons under control, but on that night I completely lost the plot and it is so hard for me to understand why. My only straw I can grasp at to make sense of it all, is that it may have been a result of all the stress leading up to the happy Cairns visit, my not using the diabetes medication and ignoring dietary and alcohol consumption limits may have led to an imbalance of my brain chemistry.

At the time of writing this article I still feel embarrassed and at a complete loss as to how this state of affairs slipped through my guard. I have always been, and hope to continue being an upbeat type of person. Interestingly the Queensland Cancer Council Counsellor has assured me that my emotional state at the time is not an unusual event. Cancer patients who can appear to be coping well with their diagnoses for years and years and also for some who have been cured may still fall into a black hole at some later time in their lives.

There is an answer and help available

There is an answer and help available

For those that may be experiencing similar problems, it might be well worth while re-reading my last sentence, that it is not unusual for cancer patients either in remission or cured to crash into depression many years after the event. The trick is to realise what seems to be real is only a state of mind that blocks out the sun and is false. There is help out there to provide support to those who are in need. My hope in relating these events is to show others that these thoughts can blindside us for a time, but there is better way forward.

Lee aka Popeye

12 Month Anniversary Tribute For Greg

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Greg

Greg

Dear Readers. On the 24th September, it will be the sad anniversary of the death of Greg Naylor from prostate cancer. So as a tribute to Greg I would like to do the following. I have re-published the articles “The Last Post” By his son David and also the article by Greg “I Have Never Died Before.” These are immediately below this post.

The article “I Have Never Died Before,” was Greg’s attempt at bringing everything together in a book form. It finished up a complete autobiography, not only with his fight with cancer but his personal life and spiritual beliefs throughout his time on earth. Greg’s article is his legacy to his family and the general public as a complete life story of the man himself.

It is not everyone who gets the chance to do this during their lives, but in Greg’s case I feel it was the cancer itself that gave him the opportunity to envisage and compiete this story. In many ways, it could be read and seem to be a very ordinary story with little to offer the reader. However there is much more to evaluate when looking deeper into this mans life and comparing it with ourselves.

Greg in his illness, attempted to give something back to other men diagnosed with this disease and he chose to do this through his web site. He, like myself wanted to offer a personalised account of his medical and mental trials throughout his treatment so that others, coming behind him could identify with someone who is going through the maze before them.

It has been said that each mans journey with prostate cancer is different on a medical level, but there are many similarities on a personal basis that patients can take advantage of for help and guidance when either, reading or talking to those that have been there before them. That is a recognised benefit of support groups; and this is exactly what Greg’s site offers readers.

The hidden value of Greg’s articles is that they are timeless. The information related to cancer and its effects is identifiable and just as relevant today as when he began writing about his journey with cancer in 2008. My efforts of contributing to this web page, is in hope that this site continues to satisfy a need for personal information to men diagnosed with prostate cancer and their carer’s. I would very much like to continue providing much of what Greg began in 2008 for those that follow us down the track.

The article/book, “I Have Never Died Before” is reproduced below this article and following Davids tribute with the “Last Post.” It is a lengthy book size article with a table of contents making it easier to move about. I would urge readers to investigate the chapters, as they will lead people into the private life of a good man.

I sometimes wonder if things might have been different for Greg, had he survived long enough to see the acceptance and availability in Australia of the new drug Abiraterone. (Zytiga) The question will remain unanswered unfortunately, but this drug will make a difference in the management of prostate cancer for many men from this time onward .

Greg, in my mind you stand proudly beside those men and women who I have, from time to time brought to the attention of our readers in my previous articles. Andy Ripley, Harry Pinchot, Jai and Randy Pausche and the many more ordinary folk who have managed to make a difference, and of whom I have still to discover. Thank you Greg for being there for me.

Old Mate

Old Mate

Lee aka Popeye

The Last Post

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The last chapter in Greg’s long story was completed today when he passed away peacefully at Benalla Hospital with Pauline and David by his side.

He woke early this morning with very restricted breathing and Pauline called an Ambulance to take him straight to Benalla Hospital. He arrived ‘unresponsive’ with barely any breath. He spent most of today in a peaceful sleepy state, unable to talk. He communicated a few simple ‘yes’ and ‘no’s’ along the way and a couple of kisses to Pauline.

A key moment in the day was when he asked to remove the oxygen mask for the final time. It was clear that he knew he was in the ‘home straight’ and was getting ready to pass over. He rallied at one point in the day, grabbing the overhead handle for one last struggle.

The last few hours were spent in a sleepy, snoring state as he took his last gasps. In the end his breathing simply and calmly ceased as the nurse rolled him on to his side.

In keeping with Greg’s request we felt it was important to let you all know asap. As we write this, we are all together as a family with his body at the hospital, playing a playlist of his favourite music including lots of Neil Diamond.

So many people have commented what a great legacy this blog has been for Greg to leave behind. Thanks for all your well wishes. More details will follow about the funeral service – likely to be held on Thursday or Friday.

Go in peace Greg – fly free from all your suffering.

May you open into a greater glory and may we meet again,

Lots of love from your loving and proud family,

Pauline, David, Lisa and Anthea.

Holding hands for the last time.

Written by Lee

20 September 2013 at 5:55 am

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