Archive for the ‘social comment’ Category
I feel compelled to write this article to summarise all the major medical events that have led me to where I stand today. I write exposing my experiences with this disease and the medical to-ing and fro-ing from the medical side of my disease management. I feel that some of these medical decisions and procedures I have personally experienced have left me puzzled. Perhaps my story may be of assistance or support to those who may be experiencing the same issues or for those who may yet come down the same paths. Before I begin I would like to state the following:
“I am not a doctor and the views I present here are purely personal and are private opinions only”.
I have deliberately refrained from specifically mentioning doctors names in this or any of my past articles to maintain anonymity for those medical professionals I have encountered. Medical personnel, be they doctors, specialists, nurses or assistants are human just like everyone else. There are many stages of competence within the profession. Sometimes mistakes are made and sometimes an inspired insight may provide a miraculous cure. In almost all of these professionals there is a desire to be as good as they can be. However natural abilities will vary enormously just as in any other profession. The trick for patients to learn is being able to recognise the variations in those treating the illness.
I remember, way back in 1993 I had an operation on my back and while recuperating I received one of those spooky insights that happen from time to time. It was in the form of a remark from a disgruntled fellow patient in the bed opposite me and was spoken to me as I was about to leave the hospital. He called me over and said the following: ” Just remember lad, when you get back home that they don’t call a doctor’s office a medical practice for no reason”. He motioned me closer to him then said “the emphasis is on the word practice“. In a way I guess you could say his remark supports the cliché of getting a second opinion on medical matters.
I live in the regional area of Mackay Queensland Australia, Ah! such a beautiful area. It seems like such a long time ago in March 2012 when I was diagnosed with prostate cancer. My PSA at the time of diagnosis was only 6.5 having risen from 4.4 a couple of months previously. The pathology identified a Gleason 9 (4+5) in all 18 core samples with tumour volume of between 80% and 100% , the grading was a T3a. That diagnosis led to two alternatives. The first urologist advised surgery and a second opinion from a different urologist advised it was inoperable and this was supported by opinions from two further specialists in Brisbane. These specialists all recommended Androgen Deprivation Therapy plus HD brachytherapy followed by external beam radiation. I then accepted this advice as the way I should choose.
The urologist then referred me to the two specialists in Brisbane to begin the brachytherapy in May. When I finally consulted with these specialists they were annoyed as they had not been advised that I was symptomatic with urinary problems (the reason my cancer was discovered in the first place was because I had urinary symptoms.) They sent me straight back to Mackay to get this sorted out prior to having further treatment. I underwent a TURP procedure in May where the urologist removed a third of my prostate tissue during the rebore to alleviate my symptoms. After my discharge from hospital I contracted an infection that took months to resolve.
Finally in September my urologist referred me back to the specialists in Brisbane to undergo the HD brachytherapy. It was at this meeting in Brisbane that I discovered that because I had undergone the TURP procedure with so much tissue removed I was no longer a candidate for HD brachytherapy. I was then offered a full course of external beam IMRT radiation with the continuation of the ADT medication.
I eventually received a full course of IMRT at the Sunshine Coast in Queensland, 38 days of radiation for a total of 78 Gy. My PSA dropped to a nadir of 0.02 over the ensuing months and I also continued my ADT medication. In March 2014 I had been diagnosed for two years and as my PSA had remained stable I was given the OK to stop the ADT medication. My latest PSA result in June 2014 remains at 0.02.
Back in March 2013 My urologist and I had a disagreement when he offered to perform an orchidectomy procedure (surgical castration) prior to me leaving the private health system. As a result I discontinued our medical relationship. In August 2013 I began having visible minor bleeding in the urine from time to time. This steadily became more frequent and was identified in pathology when I presented to my GP with this issue.
I eventually had a cystoscopy as a public patient that was performed by the original urologist I consulted way back on diagnosis day. He also undertook consultation work at the Mackay public hospital. After the procedure he diagnosed radiation cystitis to the bladder wall and referred me to the radiation oncologist based in Townsville. The radiation oncologist then referred me to the hyperbaric medical unit in Townsville general hospital where I underwent treatment (This has been outlined in detail in a previous post.)
During my hyperbaric treatment I experienced severe bleeding and urinary retention on two separate occasions requiring admission to the hospital emergency department in the middle of the night. The emergency department personnel were great, admitting me immediately and were able to catheterise me on both occasions, however my time there was painful and distressing. (A full coverage of this can be read on my two previous posts.) The only treatment I received, was the bladder irrigation via the catheter and at no time was it suggested to me, that they might try a further investigation to confirm the cause of the bleeding, nor carry out any cauterisation. I managed to see the medical registrar on four occasions for a total time of approx 4 minutes but never saw a urologist. Both times I was discharged when the urine finally cleared of blood.
interestingly I recently received copies of blood tests that were done when I was receiving treatment at the hospital and all my blood counts were below normal. I now wonder if these low blood counts were serious enough at the time to have warranted further treatment.
It was during my hospitalisation that I was approached by a fellow patient with similar issues. He recommended I see his personal urologist in Townsville who he valued highly for an opinion. I was able to organised a referral and saw the urologist as a private patient and was immediately impressed. This has also been covered in a previous post but it is worth repeating here. He performed a cystoscopy and found the following (This is from his report):
There was a small submeatal stenosis which was passable ( a stricture–narrowing of the opening of the urethra ( this can be caused by catheter use) The prostatic fossa (the prostate capsule or prostate bed) was quite open and there were quite a lot of radiation affected vessels which were very friable. These were diathermied (cauterised) Both uretic orifices were normal and there were no calculi (stones) There was no radiation cystitis in the bladder or any papillary lesions. Sooooo there you go, a different diagnosis from a second opinion. Seems like the bleeding was from the remains of the prostate gland and not the bladder.
It has taken me quite a few weeks to get over this procedure and I am still battling with urinary issues including pain and incontinence. It is steadily improving and I am hopeful that I will return to normal at some stage. The important thing is that the bleeding has settled down. I did have some slight bleeding from time to time and I did pass a few clots but the incidence of this is fading fast as the weeks go by. I am scheduled to have a tele conference with the urologist in two weeks where I will get a chance to ask him further questions on my prognosis with the bleeding.
Here then is my summary of discord:
While I know that I had no alternative but to have the TURP procedure and I am grateful to the urologist that it resolved my urinary problems. However, I am left wondering how he was unaware it would rule me out for the brachytherapy treatment before he shunted me to Brisbane. Later, his offer to perform the orchidectomy was put to me in a way that offended me and as far as I could see had no basis of offering me any cure.
The first diagnosis of radiation cystitis in the bladder wall is at odds with my second cystoscopy diagnoses. I still wonder, why???
I have searched for information regarding the issue of bleeding from the prostate gland after radiation with little results. If this is indeed a possible side effect as it appears to be with me, would it have been advisable to have had the prostate surgically removed in the first place??
During my hospitalisation, should the hospital have carried out further investigative measures, particularly when I turned up two weeks after the first visit for the second admission???
I have now been treated both as a private and a public patient and it offends me that private patients are given general anaesthetic for procedures such as a biopsy or a cystoscopy, but not if you are a public patient. Both these procedures are distressing to endure without general anaesthetic. In the public system you will receive an anaesthetic gel which is next to useless.
The medical management road for patients with chronic illness is a mine field of pitfalls with choices offered by medical opinions. Patients should endeavour to research and learn as much as they can about their condition. Please be aware however, that knowledge is a two edge sword and being able to rationally dissect the good from the bad and remain as objective as you can is the best advice I can offer. I keep copies of all my medical records and I try to keep a diary. Lastly never be afraid to seek a second, third or fourth opinion. After two and a half years of my illness I am still seeking information and knowledge regarding my prognosis.
Lee aka Popeye
Written by Lee
17 August 2014 at 11:24 pm
Posted in brachytherapy, external beam, Health, hormone therapy, hospital, humour, incontinence, information, Lee's Page, MEDICAL, my fight, oncology, PERSONAL, PROSTATE CANCER, psa, quality of life, radiation, radical prostatectomy, robotic prostatectomy, social comment, surgery, TREATMENTS, TURP, Urology, watchful waiting
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.”
“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! “
Thank you God
Lee aka Popeye
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.
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.”
Lee aka Popeye.
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.
Lee aka Popeye
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)
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.
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.
Lee aka Popeye
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.
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.
“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
Written by Lee
1 December 2013 at 10:30 pm
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.
“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