GREG'S LEGACY

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

Archive for the ‘Health’ Category

Losing and Regaining the Plot

with 5 comments


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

My Cancer Voyage……How’s it Going?????

with 5 comments


The Journey

The Journey

I have deliberately delayed updating my health condition for the past few months due to conflicting symptoms I have experienced and the tests needed to resolve the reasons for these symptoms. I needed truthful answers to present here in this post rather than jumping to conclusions

What follows here is not a self-pitying diatribe but an example of what a cancer patient might experience following diagnosis, then primary treatment followed by regular monitoring. Every cancer patient has a heightened awareness of any changes that may indicate a return, or an advancement of the cancer. A cancer patient has a mental fear of any advancement of their disease and it is easy for their mind to go to dark places with every increase of side effects or any new symptoms that appear.

The mental stress that is felt must be dealt with in a positive way and answers to any new health aspects must be dealt with in a practical and sensible fashion. This will involve visits to the doctor and/or specialists followed by any blood tests and scans that may be indicated. It is only when these have been completed that true answers may become available.

I have been experiencing periods of extreme fatigue for a couple of weeks followed by a period of a few days of feeling normal and reasonably energetic. I have been having real problems stabilising my body temperature over the past five weeks with numerous hot and cold flushes throughout the day and night. However the real worry for me during this time has been the increasing pains and stiffness I am experiencing from the upper leg area through to the pelvic area and the lower back.

The past five weeks has seen me with unsettled sleep as I fight imaginary demons and temperature inversions.Some nights insomnia due to the aches and pains drives me out of bed in the wee small hours. My nightly visits to the loo have increased over this time and I am now up and down about four times a night attending to urination duties.

Soooo…. Off to the doctors and specialists I went, time and again during the past month. I have had a multitude of blood tests and scans. The results of all this investigation is as follows.

Since completion of my radiation treatment I have remained on ADT medication and my PSA has stabilised at 0.03, the latest result was in July so this indicates the cancer is under control (Good news).

I have been diagnosed as having another mild attack of prostatitis and I have been prescribed antibiotics for this (Crappy news).

I have now been diagnosed as a type II diabetic and I am now on medication for this, plus modifying my diet and daily monitoring of my blood sugar levels. I have also been prescribed a statin for lowering my cholesterol which is high ( Crappy crappy news).

Bone density scans have confirmed I now have a condition known as osteopenia a prelude to osteoporosis. This is a known side effect from the ADT treatment and I have to up my calcium intake and monitor my density more closely (More crappy news).

My liver function tests were through the roof (this was a real worry as I was thinking mets.) However further blood tests and scans revealed a diagnosis  of an enlarged fatty liver. Now this problem can be serious and is mostly caused by the chronic use of alcohol. It can also be caused by a genetic condition known as haemochromatosis, which is an excess of iron in the body. As it happened my iron levels are very high and may indicate this condition, however the genetic test for haemochromatosis is only available through Medibank after two consecutive high iron readings (Crappy, crappy, crappy news).

I have been known to enjoy an alcoholic drink from time to time and so the doctor has advised me to abstain from drinking alcohol to rescue my liver. This advice was given because even if Haemochromatosis is evident the alcohol combined with this condition is not a good habit to continue with.

Right now I feel like I am sitting on the dock of the bay……..watching the tide roll away. Eighteen months ago I was a happy-go-lucky beer drinking reasonably healthy human being with no prescription drugs.

Today eighteen months down the track my cancer journey has caused me to retire from my profession and become a pensioner. It has taken away my ability and desire for a satisfying sexual life. It has given me fatigue that comes and goes, a muddled brain from time to time, aches and pains along with stiffness. It has given me temperature inversions that drive me insane at all hours of the day and night. I now have to adjust my diet leaving behind some of the foods I have enjoyed all my life and to cease enjoying a beer or glass of wine. I am now required to prick my fingers several times a day to monitor my sugar levels and record them in a diary. I have some minor incontinence and an intimate knowledge of toiletry requirements and hygiene. I now have a handful of medication pills to administer daily and four monthly injections of my ADT medication to look forward to. I now have the risk of bone breakage without warning and finally, I also live in dread of the cancer returning to finish what it started.

Now it would be easy for me to get lost in a pessimistic haze over all this, rant, rave and shake my fists at the heavens for sending me this plague of locusts and boils. However I think of those wonderful inspirational people I have found who have given me new insights that enable me to be optimistic and give me hope. Andy Ripley was one who I wrote about some time back and my previous post introduced Harry Pinchot to you all who has shown me that having cancer can offer many opportunities.

Adversities like cancer, the other mixed bag stuff I am dealing with plus many other dire plagues of boils and locusts I have yet to experience have strengthened my character and soul. These things have allowed me to re-evaluate my self, my loved ones, my spirituality, the world in which I live and the rest of humanity. In summary, I am finding out much more about me as a person and where I fit in the scheme of things called life than I would have otherwise.

Voyage of Discovery

Voyage of Discovery

Such is life said Ned Kelly…………..and so it is………….I can still manage a smile………just takes a while……….just takes a while……and I still choose life over the alternative………….what an adventure.

Lee aka Popeye

2013 and here I am

with 3 comments


Hullo to everyone and best wishes for the year ahead . My apologies for being late in posting news on this site but the truth is I am feeling a little jaded and have been, since the beginning of January.

This will scare the kids

This will scare the kids

I have included a terrible photo of my head and nose that should explain why news of my treatments, ( Yes it is now treatments plural) have been slow in being published. To put it simply “I am feeling pretty lousy lately” and I do not expect it to become any better for a few more weeks.I completed the radiation therapy for the prostate cancer on the 20th December and was due to report back with news and advice to this site as soon as I was able. However while I was being treated I was also referred to a dermatologist here at the Sunshine Coast in regard to my many unresolved skin cancers. The dermatologist removed almost twenty of them but my nose was a problem. I have had several previous surgery procedures over many years on my nose, the most recent surgery and skin graft in June 2011. This surgery has been unsuccessful and my nose it seems is one huge BCC. My options had been narrowed to complete amputation followed by a prosthetic nose or radiation therapy. Guess what I chose?????

I begun radiation treatment on my nose at the beginning of January just two weeks after completing radiation treatment on my prostate cancer. At this time of writing I am half way through the 30 sessions needed and I am feeling pretty ordinary. I will finish treatment on the 19th February which means I have spent almost 4 months away from home receiving radiation treatment at the Sunshine Coast Queensland. My time here has been great, the area is a sub tropical paradise with much to see and do. The accommodation has been first class with a two bedroom two bathroom apartment overlooking the Maroochydore River and Beach. However I have had enough and want to go home.

I had a PSA blood test done today, which is the first since July last year and should be a marker for me on how the IMRT stuff has gone as it is over a month since I completed the prostate treatment. I will be publishing the second part of radiation treatment for anyone interested in due time as soon as I have the PSA results and when I am feeling OK.

For those that may be interested, the treatment for the BCC on the nose has caused the following effects.

The whole nose, cheek and eye areas are inflamed and swollen.

The cancerous areas have been revealed and are clearly visible as crater like sores with scabs that keep lifting.

The nose is bleeding from time to time, both on the outside and inside.

The eyes are swollen, painful and itchy. I am trying to treat them with special drops. Keeping them open in any sort of glare is nigh impossible. They cement shut each night and need to be sliced open each morning.

I have special bedding sheets and pillow slips that need to be serviced daily.

Otherwise everything else is just fine and dandy, If anyone would like specific information on the radiation treatment for faces and noses let me know and I will be happy to pass on my experiences to them.

The radiation people here in Nambour have assured me that my nose will turn out OK and I will be suprised at how well it should look. I can only look forward to that.

Cheers

Lee aka Popeye

Written by Lee

30 January 2013 at 6:00 am

Food for Thought: Antibiotics V Probiotics

with one comment


Those of us with cancer usually have a weakened immune system due to the treatment we are receiving.  A weakened immune system leaves us more susceptible to infection.

In my case, this led to getting double pneumonia and pleurisy back in March from which I almost died.  When it became complicated with a blocked small bowel, I was not expected to survive more than a couple of days.  Somehow, I did … but at a cost!

In hospital, they had me on an intravenous infusion of antibiotics followed by a course of antibiotic tablets.  Between March and June, I was on antibiotic treatment for more than a total of eight weeks.

Antibiotics

Antibiotics, by design, kill bacteria … all bacteria … not just the pneumonia but also the good bacteria – or flora – needed to digest food.  As a result, I lost about five kilos in weight.  I thought it was the wasting away disease we see in people just before they die.  However, it was because my food was not being properly digested.  The District Nurse came to the rescue and educated me about probiotics.

Probiotics

Probiotics are live microorganisms – such as bacteria, yeasts and fungi – which in adequate amounts may have health benefits. Studies have shown they can improve digestion, help protect against disease and enhance immune function.

  • Strains of lactobacillus and bifidobacterium bacteria are the most commonly used probiotics as they can survive the passage to the gut.
  • Probiotics are most widely available as dietary supplements in tablet, capsule and powder forms or as a component in yoghurts and fermented dairy drinks (Yakult).
  • Prebiotics are non-digestible food ingredients that can increase the activity of select “good” bacteria. Prebiotics naturally occur in bananas, asparagus, leeks, onions, garlic, chicory and wholegrains like wheat, rye, dark chocolate, barley and oats. Savvy marketers are spruiking their benefit in foods from breads to infant formulas

For healthy people, probiotics aren’t necessary, but eating probiotic foods like yoghurt aren’t going to hurt and are generally well tolerated.  Probiotics are not advised for people with severe illnesses or who are immunocompromised.

Popular opinion

When CHOICE asked people about probiotic use, positive messages abounded: “Yakult, every day. No ill effects. Actually think they are part of me beating Crohns”. Another said he used kefir (an eastern European probiotic drink) and “never had any ill effects, just the opposite in fact!”. One fan of Inner Health Plus wrote: “It helps my partner who suffers with MS and often has problems with candida (a yeast) overload in his throat and a bloated tum”, while another commented: “I also have an irritable bowel and a bloated tummy at the best of times… It helps but has not solved the problem completely”.

Immune System

I know I harp on about looking after my immune system but that is all I have to help my cause.  With a depleted ‘good bacteria count’, that is going to be all the harder to improve.  Whilst I use Lactoferrin as an immune booster, using probiotics is hoped to make things easier.  They say it takes at least a month before you can determine if they are helping.  So, here’s hoping!

Written by Greg Naylor

15 August 2012 at 12:00 am

An update on my recovery from the TURP procedure

with 3 comments


I thought I would update my recovery progress from the TURP procedure I had in May 2012 the story of which appeared in my post on the 14/05/12 and titled “A  T.U.R.P Experience for anyone interested”.

In that post I summarised that I was glad I had the procedure. It has been five weeks now since I had that surgery and I am not so sure that my initial confidence still holds true with me. While most men who have the procedure appear to respond favourably there are a few who experience ongoing problems and I am begining to fear I might be one of them for the following reasons.

While it is true that my flow has increased tremendously I am still experiencing incontinence problems and rely on small pads to take up the slack. I suffer leakage at times when I bend over, cough, sneeze, pass wind etc etc. My nocturnal habits are the same as prior to the procedure and I am up several times throughout the evening. I have urinary urgency more often than before and I have had a few accidental moments.

By far my biggest concern is the pain associated with urination throughout the day. The flow generally starts fine then before the bladder is completely emptied the flow suddenly stops and pain begins in the pubic region spreads to the pelvic area and builds in intensity for approx 30 seconds before a feeling of backflow occurs and the pain subsides. This issue does not happen throughout the evening in my nocturnal visits to the toilet.

I figured that the reason I was experiencing these painful episodes throughout the day and not throughout the evening was because of the following. I am only five weeks out from the procedure and during the day I am more active which may be inflaming something in my pelvic area constricting the urethra through inflamation and swelling. In the evening during sleep and low activity this inflamation settles down.

Now that I am back home I have backed off as much activity throughout the day as I possibly can, stopped having a beer or two, coffee and tea and generally behaving myself trying to see if this may correct my problem. At the time of writing this there is no change. My next appointment with the urologist is on 6th July and I am hoping to see some improvement otherwise I will have to declare this to him. I am really dreading having to have some other procedure done down below to fix up whatever may be amiss.

There are many things this could turn out to be and include bladder issues, scarring, strictures, blockages so I will keep updating in my posts as new information becomes available.

On a slightly different issue regarding my original T.U.R.P the surgeon removed 14 gm of prostate material and this was sent to the pathologist. The results confirmed the original biopsy results in March of gleason score of 4+5=9 with 80% of the prostate material cancerous tumour.

I took a holiday from my cancer

with one comment


Flat Creek Station Camp

Flat Creek Station Camp

For anyone wondering where I have been over the past three weeks, here is the explanation. For the past two years pre my diagnosis, my son Matthew, my wife Lynette and I had planned a camping trip gold detecting to Queenslands northern goldfields based around Georgetown in the gulf region.

There is a cattle property just southwest of Georgetown whose owner is a conservationist and allows limited camping on the property. It is a lovely property that just happens to include the historic site of MacDonaldtown a roaring gold town in the 1880’s. The property is also home to rare and endangered bird species such as the gouldian finch.

After my diagnosis my son made it number one on the bucket list for us to carry out our previous plan before I drop off the perch, How could I have refused? So off we went with my wife and son carrying out all the preparations and making me promise I would take it easy. Two of my wifes sisters joined us from Cairns for a week and brought along a large telescope fitted with a sun filter to capture the transit of venus during their stay.

The camp was set up superbly, the transit of venus was observed to the delight of other campers nearby and my son found two small nuggets during our stay. We spent most nights around the campfire telling yarns and having the odd drink or two and listening to the dingo’s howling in the distance. Days were spent walking through the magnificent bush listening for the telltale tone of the detector where every hit was met with anticipation and usually ended up being a piece of wire a horsehoe or a spent bullet.

Transit of venus set up

transit of venus set up

The Nugget

Now my reason for posting this delightful travelogue does have a meaning and is related to my prostate cancer in the following way. It wasn’t until we were travelling home that talk slowly started back to the subject of my cancer (next Dr’s appointment etc etc) The closer we got to home the more we talked about the bloody thing and I suddenly realised that for the past two weeks we had not discussed the issue at all. I had just put up with the urinary problems and never gave it much further thought. I participated as I could and rested when I needed to . Butttttt !!!!! the big thing was, for that TWO BEAUTIFUL, WONDERFUL WEEKS I CEASED TO HAVE CANCER AND I WILL ALWAYS BE GRATEFUL FOR THAT.

If I can manage another trip I will be taking it using what long service leave I have left.

Lee aka Popeye

Written by Lee

17 June 2012 at 11:25 pm

Best health system in the world?

with 2 comments



Yes, that’s me laying on the radiation machine at the Peter Mac Cancer Centre just about to be nuked from both above and below.

The green laser beams are aligned with inked tatoos that they put on you so that they can relocate you exactly each time you receive the treatment.  The alignment procedure takes about five minutes and the actual radiation is about five seconds top and bottom.  There is no feeling associated with the treatment – all you hear is the buzz of the monster machine.

After the top has been done, the whole machine pivots on the wall and can be directed throughout the full 360 degrees to get to the area to be treated. (see next photo)

This is one of six machines at the clinic that are in full use every day.  They have more machines at Box Hill, Monash and elsewhere that are kept just as busy.

And, you know, this treatment costs you nothing – as does the daily transport to and from the clinic by ambulance – or the accommodation required for your stay in the city.

Show me another country where terminal or chronic illness is treated by the government’s national health scheme without out-of-pocket costs to the patient.  A friend, who spent many years living in the US was telling me today that she was rushed to hospital with a suspected heart attack.  After an overnight stay and being told it was a false alarm, she was sent home with a bill for some thousands of dollars.

Written by Greg Naylor

25 October 2011 at 11:25 pm

Follow

Get every new post delivered to your Inbox.

Join 113 other followers