Cancer: Battle or Journey?

 

Photo credit: https://www.swiftyfoundation.org/cancer-is-a-journey-not-a-battle/

I asked the same question of three different free versions of AI: Meta, Copilot and Gemini:

People talk of their battle with cancer, and winning or losing the battle. What is the downside of that metaphor, and what is a better way of speaking about cancer?

They all gave very similar answers. Meta's answer was the most nuanced and 'sensitive', if one can speak of AI in that way:

The "battle" metaphor for cancer can have several downsides:

1. Guilt and shame: When someone "loses" their battle with cancer, it can imply that they didn't fight hard enough or didn't have the right attitude. This can lead to feelings of guilt and shame for the individual and their loved ones.

2. Unrealistic expectations: The battle metaphor can create unrealistic expectations about the outcome of cancer treatment. It implies that cancer is a war that can be won or lost, rather than a complex and unpredictable disease.

3. Overemphasis on individual responsibility: The battle metaphor places a strong emphasis on individual responsibility and personal strength. This can overlook the role of systemic factors, such as access to healthcare, socioeconomic status, and environmental factors, in cancer outcomes.

4. Stigma and blame: The battle metaphor can perpetuate stigma and blame around cancer. For example, someone who "loses" their battle with cancer might be seen as somehow flawed or weak.

Here is Meta AI's suggestion for better ways to talk about dealing with cancer:

A better way of speaking about cancer might be to use more nuanced and compassionate language. Here are some alternatives:

1. Journey or path: Instead of a battle, cancer can be described as a journey or path that individuals navigate with the support of their loved ones, healthcare providers, and community.

2. Living with cancer: This phrase acknowledges that cancer is a chronic condition that requires ongoing management and care.

3. Cancer experience: This term encompasses the physical, emotional, and social aspects of living with cancer, without implying a specific outcome.

4. Resilience and adaptation: Instead of focusing on "winning" or "losing," we can emphasize the resilience and adaptability of individuals living with cancer.

By using more thoughtful and compassionate language, we can work to reduce stigma, promote empathy, and support individuals affected by cancer.

Impressive as artificial intelligence might be on the subject, it doesn't hold a candle to this blog post on the topic that I found written by Patti Gustafson: Cancer is a Journey, Not a Battle. Please read it; it is about the same length as this post is to this point. You will understand why she concludes:

I would invite us to ask ourselves, what other ways we can talk about living with cancer that are loving, encouraging and invite patients to stay engaged with life and hope for the future? In this way we help give cancer patients a perspective that is beyond simply winning or losing.

So will you please join me in changing the way we speak about cancer and the people going through it? Can we agree it is a journey, not a battle or a fight? Can we agree no matter the outcome, all cancer patients deserve the best care, the best research, more funding, as well as our prayers and support?

David Remnick from The New Yorker: last interview with Leonard Cohen

This is a beautiful interview. Perhaps, not so much an interview as a testimony.

I hope this doesn't sound too glib, but I honestly believe a major strength of Leonard Cohen was his preparedness and ability to hold paradoxical contradictions in tension as, perhaps, only a poet can do: life, death; sex, love and loneliness; dark and light; brokenness and healing; guilt, melancholy and humorous self-deprecation; relentlessly seeking God, banging on God's door which for the longest time seemed to be closed; and then, at the end of his life, in his "white-knuckle" pain, relaxing into "hearing God speaking" - no longer in judgement, but compassionately: "Eat something, you're losing too much weight."

PSA Blood Test - to test or not to test?

Dr. Neil Bell

The Canadian Task Force on Preventive Health Care says measuring prostate specific antigen, or PSA, in blood is not an effective screening tool because it often produces false-positive results.  Task force member Dr. Neil Bell (family physician and Professor, Department of Family Medicine, University of Alberta)  says almost one in five men aged 55 to 69, for instance, have at least one false-positive PSA test and about 17 per cent end up with unnecessary biopsies.

Dr. S. Larry Goldenberg

Dr. S. Larry Goldenberg, who is chair of the Canadian Men’s Health Foundation, a professor of urologic sciences at the University of British Columbia, and the author of An Intelligent Patient Guide to Prostate Cancer, does not agree.

In an article, "Dropping PSA test for prostate cancer puts men’s health at risk" published in the Toronto Star today, Dr. Goldenberg is scathing of the Canadian Task Force whom he refers to as "non-experts in the field": 

Telling urologists not to use a simple blood test to screen for prostate cancer is like telling cardiologists not to use a stethoscope to check for heart defects. You don’t need to be an expert to know that neither makes sense. 

Yet that’s what the Canadian Task Force on Preventive Health Care, comprised entirely of non-experts in the field, did last week. By urging doctors (and patients) to stop using the prostate-specific antigen test, or PSA, to detect cancer in its early stages, the task force’s recommendation will put men’s health at risk.

Dr. Goldenberg goes on to point out, "When I began my practice in the early 1980s, before the PSA era, almost one in four men with prostate cancer had cancer spread to their bones by the time they were diagnosed. Today, it’s one in 25. Prostate cancer deaths have fallen by 40 per cent.

"Why the difference? Our treatments have improved, and so have our lifestyles. Doctors have new tools to manage complications like never before.

"But we also use the PSA test to find cancers at earlier stages. It’s the most powerful cancer marker in medicine."

I encourage you to read Dr. Goldenberg's full article here. He elaborates on the correct use of PSA testing, as done by urologists, pointing out: "Without early detection, even men whose cancer won’t kill them will see their quality of life deteriorate more quickly and more painfully than if they had been diagnosed sooner... The task force didn’t consider this data; they considered death, but not quality of life."

Movember 2nd

Accident Prevention

The picture is a bit fuzzy, but then so is the mo' at this stage.

Remember, Remember the Month of Movember

If you haven't noticed yet, this is the month of Movember. Once again the gallant Mo Stashed Hairiers are covering their upper lips for the cause of raising funds for men's health, notably prostate and testicular cancer research and men's mental health. Please go on over to the Mo Stashed Hairiers blog which also has some information on prostate and testicular cancer and some common sense, health precautions that men can take.

Here is a video we made three years ago.

Movember - Tally-ho, let's grow the mo. Let that 'stash bring in some cash.

Remember, remember the month of Movember

Fun with Mo reason

For this is the season

For lips to grow stubble

So efforts can double

That cancer gets whipped

By those hairy lipped

And their sponsors who give

To the scientists who live

For the day

When they find out the way

After all we've endured

That cancer gets cured.

MOVEMBER - Mo Stashed Hairiers

Getting Ready for Movember 2012

It's that time again. I'm starting to get ready for the month of Movember, 2012.



Since Movember last year my prostate cancer fortunes have changed as many of you may recall. Last year this time I had been living for five years with a small, slow growing cancer of the prostate that was being monitored every six months with a PSA test and with a needle biopsy every eighteen months. At the beginning of this year the biopsy showed that the cancer had gone up a notch in aggressiveness and had also spread somewhat within the prostate. It was time to stop watching and to take some action. After a couple of weeks of reading and consultation I decided, with my urologist, that the wisest course of action was to have a radical prostatectomy.

That was in April. The procedure was successful and there was no evidence of metastasis.  The first of the six-monthly PSA tests that I need to have for the rest of my life showed a count of 0 (zero!), meaning no trace or evidence of cancer. However, I do remain at higher risk which is why the testing needs to continue.

All the above leads me to continue having an interest in Movember and the cause of promoting men's health - physical and mental - through clinical research and public education. To help fund this worthy cause we will be running the Mo Stashed Hairiers again this year and I sincerely hope that friends, family and strangers will be generous with this great cause in spite of hard times.

You can find my Mo Space Home Page here. It has a "Donate" button. Donations by Canadians are tax deductible.

Note. For a blow by blow diary of my prostate cancer journey click on the "Prostate Cancer" label here or in the panel to the right of this blog.

The Thing is gone

This is just a quick update to let you know that the crisis is not only past, but that I am actually feeling better and more positive than I was a week ago before the crisis. Thanks to those of you who expressed your concern and support. It was and is greatly appreciated.

The Thing is back

I am not at all pleased to tell you that the Thing is back. The "Thing". The other c-word. Not the cancer - relax and thank Goodness. The Thing; the CATHETER !! AARGH!

I had been doing extremely well with the incontinence story. Too well as it happens. Over the last few days I had been experiencing increasing difficulty voiding - that means peeing for you non-medical types. This came to a head, you could say, yesterday and I went off to the emergency room. I will spare you the details, but the short of it was that the hospital called in the surgeon and I have come back home condemned to wearing the Thing for thirty-six hours. After that we'll just have to see how it goes.

Post-surgery: Sobering but good news

On Thursday I had a follow-up appointment with the urologist who did
the surgery on my prostate to hear the pathologist's report. The
excellent news was that there was no evidence of cancer beyond the
prostate which had been removed; the margins and lymph nodes were all
clear. This means that I do not need any further treatment as a result
of the prostate cancer. In particular, I do not need any follow-up
radiation or chemo. I am so grateful.

The sobering news was that the nature of the cancer found in both
lobes of the prostate was of the more aggressive type that we thought,
from the biopsy, was only in one lobe, and that it had spread to the
outer "peel" of the prostate, getting ready, as it were, to leap into
metastasis. You could say that I had the surgery in the nick of time.

With 20/20 hindsight we now know that we made the right decision to
have a prostatectomy and to have it sooner rather than later. After
Ingrid and I left the doctor's rooms we went to celebrate together at a local
Indian restaurant that we love. He makes the most delicious Lamb
Korma.

Thank you to all my family and friends, and colleagues, for your
wonderful support. I have never felt alone throughout this experience.
I also have a lot of respect and appreciation for my urologist, Dr
Morrie Liquornik. I am aware of the privilege that is mine for living
in a First World country like Canada with such a good health-care
system.

The Thing is gone - Good riddance to the catheter

If you hang one little boy for stealing a sheep then other little boys will not steal sheep.

Once you have committed murder it becomes quite easy to steal or tell a lie.

(I came across both of those quotes many decades ago.  The first, I thought, was quoted by Winston Churchill in his autobiographical book, "My Early Life" and was a threat uttered to the young Churchill by one of the older boys or even a master, but I cannot find the quote in an Internet search. I cannot remember the author of the second quote and, again, I cannot find the quote on-line.)

On Thursday of this week past, The Catheter,  the "Thing" with which I had become obsessed as front and centre of my life, my constant and inseparable and insufferable companion, was removed. A snip of the scissors to deflate the balloon in my bladder, a few tugs of pain - a little pressure the doctor described it as before each tug - and it was out, gone, consigned to a bin next to the bed. Night and day; chalk and cheese; just like that - tug, tug, tug, plop. What sweet, perfect bliss to pee in my pants instead of through a tube and into a bag that I had been carrying around, day and night, 24-7, for 15 days exactly. Other than when lying flat on my back I'd had an almost constant, somewhat painful, sensation of having a full bladder that urgently needed to be emptied. Walking and standing were difficult, but sitting was the worst. I was so  convinced that the darn thing must be at least partially blocked that I persuaded the home nurse, bless her, to irrigate (read back-wash) the catheter on one of her visits - to no avail. "At least we know that is not the problem," she said, putting a positive spin on it.

My heart goes out to all those poor souls for whom this is a life sentence - people in hospices and elderly patients who have no hope that this thing will ever be removed, never ever.

So, now I pee my pants. Without the catheter experience to soften me up beforehand that might have been quite traumatic bearing in mind the carrot-stick socialising process to enforce conformity (the ostracism after peeing your pants as a child was like a public hanging) but now It's quite easy, really; as easy as lying or stealing after committing murder - the more so thanks to my Depends MEN GUARDS! I can do it and nobody knows my dirty secret as I walk down the street or stand up in church to sing the hymn.

This takes me back to my Grade 2 year in school. We called it Class 2 in Natal back then. The boys' toilets were being repaired so we all had to use the girls' toilets. One little boy asked to "be excused." He was allowed to go to the toilet. I thought it would be a good idea to see the girls toilets so I also asked if I could be excused. The teacher said, "You don't really need to go. You just want to see the girls toilets." Well, now. I was crushed and felt put down. How did she know whether I really needed to go or not? True, I did not need to go, but I could go, and I would show her that she was wrong. I peed my pants at my desk in the front row of the classroom. I still remember the warmth and the wet and the smell and the thrill and then the embarrassment when the little girl at the next desk told the teacher that I had wet my pants and it was all over the floor under my desk and was still dripping down. Well, she couldn't say anymore that I had not needed to go, could she. I still relish the look of exasperation on her face. I never really got into trouble for that. She wrote a letter informing my parents what had happened. They scolded my mildly but I think they all gave me the benefit of the doubt.

A Bad Catheter Day Gets Worse

Be warned. The catheter doesn't make for a good story even considering the nice flexible hoses that they use today compared to the bronze artifacts of the ancient Egyptians, Greeks & Romans. Through culpable carelessness I managed to make a bad day worse than it threatened to be.

It started last night, actually. I managed to aggravate something while trying to be diligent about the twice daily catheter hygiene that the nurse had given me strict and detailed instructions about. My poor thing became quite swollen. Thank the Lord for painkillers which enabled me to sleep most of the night. It wasn't as bad this morning but I still felt like I had gone *backward* a few days and was not up to walking around outside as I had done the previous day, really enjoying the glorious weather even with a catheter bag strapped to my calf.

After lunch the serviceman came from Rogers Cable to fix our Internet which has been out of action the last three days. After nearly two hours he worked out that the whole street was out and it won't be fixed until the day after tomorrow. By the time that he left I needed to do a bit of *tending* to myself which involved standing in the bath. As I stepped out of the bath with catheter bag still strapped to one leg I managed to snare the other foot in the tubing while stepping down... As my son, Stephen, pointed out when I told him, I now have a new baseline for 10 on my personal pain scale. Fortunately the worst of the pain was fleeting and the catheter is still draining the bladder with no obvious evidence of bleeding. ...and thank goodness for pain killers.

So, if you are coming up for prostate surgery, be sure to put this high on your list of no-no's to avoid at all costs.
Sent from my BlackBerry

In grateful memory of the first catheter patients

Sometime in your day after reading this blog please observe a minute's silence in grateful memory of those first patients who constituted the human trials for the first catheters. Suddenly the catheter occupies more of my attention than anything else in my day. I read that the Egyptions documented the use of catheters 3000 BC(E). I am grateful to be living in a First World country in 2012.
Sent from my BlackBerry

The Picture of Health (Almost)

I had my pre-op medical exam with my GP today. He tells me that, apart from a touch of cancer, I'm in perfect health with nothing to worry about. Great!

Goodbye Prostate. Goodbye Old Friend.

Many of you who have previously read my Movember blogs or my post on Global Warming and My Prostate will know that my urologist and I have been actively, vigilantly and diligently watching a tiny, slow-growing cancer in my prostate for the last 5 years, and suspecting the existence of one for 2 years before that.

The time for mere vigilance is over.

I am scheduled to have a radical prostatectomy early  next month.

In theory this should remove all the cancer but we will only know that with reasonable certainty after the urologist gets the follow up pathology report which should confirm the grade of cancerous cells in the prostate and whether any cancer has spread to the surrounding lymph nodes - very unlikely but worth checking.

I expect to be in hospital for 2 days after surgery. Initial recovery time is 4 to 6 weeks. I am not supposed to do heavy lifting or vigorous exercise for 3 months. (I believe that includes mowing the lawn and washing the dishes.) For both medical and insurance reasons I should not attempt to drive a car for a full month after surgery.

The most significant side effects for me, which are supposed to be temporary, are incontinence and erectile dysfunction. In my case I'm not going to worry too much about infertility...

I'll have a catheter for about 2 weeks. The benefit of that is that I won't have to get up at night, even if I drink a couple of beers before going to bed, as the bag takes 2 litres. After the catheter comes out I'll be peeing my pants for a few months whenever I cough, sneeze, flatulate or otherwise exert myself. I've already started my Kegel exercises to speed up recovery but I guess I'll be relying on ultimate masculine hygiene pads for men for a while.

The ED is another story. The bad news is that this takes a lot longer to restore than the pee-control. The good news is that I am eligible for nerve-sparing surgery which gives me a better chance of recovering the ability for spontaneous erections or, more likely, erections with help from little pills like Viagra. Getting up in the morning will never be the same again, I'm afraid.

Why now, so quickly?

By doing it now I can have the nerve-sparing surgery. If the cancer is allowed to spread or become more aggressive then that window of opportunity will close.

If it were done when 'tis done, then 'twere well it were done quickly. - Macbeth

How do I feel about it?

...not very thrilled, as you can imagine, and somewhat disappointed that I could not continue the active vigilance stage a while longer. As Pooh Bear said of Eeyore and his tail, I'm very fond of it and definitely attached to it. (E.E. Milne. Winnie the Pooh, Chapter 4.) I know I will miss it. But it helps to keep things in perspective and remember that this is happening not because of the surgery but because of the cancer. All these side effects, and worse, will happen to me anyway, permanently, if I leave the cancer untreated.

Many thousands of men have been through this before me. I need to be grateful: my prognosis is excellent because we have been watching it so closely all this time. To the men among you let me say that if you are over 40 and have not had a baseline PSA test yet, please ask your doctor to order this test for you. In Canada 1 in 7 men gets prostate cancer and it is the most common cause of cancer death among men in Canada. Yet it is highly treatable if caught early enough.

To the women among you: if your man is over forty and has not had his baseline PSA test, get him to read this post. This is one area where a woman is allowed to nag. It is a known fact that a large number of men finally get their prostates checked just to stop their wives and partners from nagging. It's all good!

Movember comes to an end

Movember has come to an end. I am very pleased and proud at how our team, the Mo Stashed Hairiers, came through at the end. Of course this was impossible without the support and generosity of all our sponsors. Please go on over and have a look at the moustaches, the men (Mo Bros) behind the mo's and the supporters behind the team (Look for the Sponsors On A Roll.)

Also note how other teams with past associations with us helped us raise combined donations of over $10,000. Click on the link to see how Movember closes with a BANG.

Movember Has Begun. Time for the Mo Grow

With the start of Movember most of my blogging efforts this month will go into my Movember blog site,The Mo Stashed Hairiers. Please head on over there and follow our fortunes. I have also added two pages of information on prostate cancer and on men's health issues which I urge you to read. Women, if you have a significant man in your life I recommend you read it as well. Quite a large proportion of men finally get to see their doctor because their wives are persistent about the need for them to do so.

To the men I say, with Nike, Just do it! You can do it! Get your checkup!

Asbestos, Kyoto, the Alberta Tar Sands: the Judgement of History?

There are many good things that Stephen Harper and the Conservative Party have done since coming to power in 2006, and especially since attaining majority government in May of this year, unfettered by the lefty Liberals and the anti-capitalist, proletariat pumping NDP; I know it intuitively but I just cannot think of anything right now. There must have been something.

However, as the future decades roll by I have little doubt that the legacy for which Stephen Harper and this Conservative Government will be most remembered  will be these three things:  Asbestos,  Kyoto, the Alberta Tar Sands.  Further, I do not expect the judgement of history to be kind or to be swayed by the argument that these policies are in the best interests of the economy, especially when it is shown that, short or long term, they are NOT economical, neither for Canada nor globally,  when full-cost accounting is employed and the dollars and cents impact on health-care (especially cancer and cardio-pulmonary disease), drinking water, agricultural land and global warming mitigation is calculated, not to mention the incalculable cost of environmental and associated species loss.

One other thought. How much money does the Harper Government spend each year on promoting Canada's image, trying to counter all the (deserved) negative publicity?  Maybe we should run a competition something like this one sent to me by a friend in Australia (thanks MOM) which attempts to help the town of Asbestos in Quebec.

How to sell Asbestos, Canada | The Gruen Transfer

Blatchford could have learnt from Jack Layton

It's fitting his death is a public spectacle - National Post today.


What a pathetic, ill-timed, inappropriate, vainglorious piece of journalistic spectacle expectorated by Christie Blatchford. As I listened to the news today somebody was quoted as saying, "She has the right to write it, I have the right to trash it."  I couldn't agree more.

As someone who has cancer myself I have to ask what or where is the journalistic ethic of pitting one cancer sufferer against others? Or of comparing one grieving family against others? Her behaviour in writing this "piece" is common and completely lacking in the common touch - something she could certainly have learnt from Jack Layton. Stephen Harper himself could teach her a lot about largesse and a spirit of generosity - and regular readers of this blog will know that I am not a fan of his.

This sort of "journalism" is fit only for the garbage.

It's OK if it's not illegal? News of the World. Canadian Asbestos.

"I knew what we did pushed the limits ethically. But, at the time, I didn't understand that I had broken the law at all."

Glenn Mulcaire, Private Investigator, in his statement of  apology released to The Guardian newspaper in connection with the News of the World phone-hacking scandal in the U.K..

The Spirit and the Letter

The company I work for requires me and all its employees to sign, annually, a document called "The Spirit and the Letter." It makes clear that as employees of that company we undertake to comply not only with the letter of the laws and regulations in all the countries where GE operates, but that we will also keep "the Spirit" of those laws, by which is meant the intent of the law and its ethical components.  Mr. Mulcaire's apology makes it quite clear  that he and his employers knew that they were in violation of the 'Spirit'  of the law but that he thought this was okay so long as they did not break the letter of the law.

The Letter, but not the Spirit

I have just a little data to back up my next sentence but I really do think the statement is true based on impressions and recollections for which I do not have the time to go back digging into archives. This attitude of something being okay so long as no law is actually broken is becoming increasingly prevalent in the West and seems to me to be displayed increasingly by political leaders.

Here are just a few recent examples in Canada.

Example 1.

Interim auditor general John Wiersema reported that  the Conservatives passed off a $50 million G8 Legacy fund as part of an $83 million investment to reduce border congestion when they sought Parliament’s approval for funding. (The Star.)  Further, Wiersema said auditors were unable to locate any paper trail for the selection of G8 legacy projects — a “troubling” finding that he said was unprecedented in his 33 years in auditing.  In response, Foreign Affairs Minister John Baird, who had signed off on the G8 legacy projects in his earlier role in charge of infrastructure spending, said the Conservatives had not done anything illegal. He noted the auditors’ own conclusion that they weren't “aware of any specific law that was violated.”

Example 2.

In March, Parliamentary Speaker  Peter Milliken ruled that  Bev  Oda's responses to MPs when she was asked about a funding decision related to a third-party foreign aid group caused "confusion" and, as a result, he believed this constituted a breach or breaking of Parliament's rules. (Canoe.ca.) In a second ruling, Milliken  found that the government broke Parliament's rules when it failed to provide information requested by MPs on the costs of its crime legislation.  History was made when  the government as a whole and International Development Minister Bev Oda specifically were found in contempt of Parliament.

 In response Stephen Harper said, "We have debates in Parliament all the time. You win some you lose some. We thought we had provided enough information. We'll go back and see what additional information we can provide." He said the  rulings are all part of the democratic system.  "But our focus can't be on parliamentary procedure. Our focus has to be on the big interests of Canadians and in my judgment, that is the economy,"

"Parliamentary procedure" are the laws that govern how we make laws and which ensure that we remain a Parliamentary democracy!

Example 3.

It is illegal to use asbestos for building in Canada because, as a known carcinogen, it is considered a health hazard. In April of this year Stephen Harper campaigned in Asbestos, Quebec and stated proudly, "The only party that defends the chrysotile industry is our party; the Conservative party."

The justification?

"Canada is one of a number of exporters of chrysotile and there are many countries in which it is legal who are buyers. This government will not put Canadian industry in a position where it is discriminated against in a market where sale is permitted."

The letter, but not the spirit of the law.