As I continue my ‘new normal,’ it is time to shed, or at least place in the background, the cancer layer of my identity.
My writing, and your reading and comments, helped me tremendously through the rough and not so rough patches, and hopefully, helped a number of you as well. Putting this all together in book form was also a way to try to put this behind me, and have this reference material available to those who find it useful.
While I had originally planned to continue the blog until the two-year mark, the time when the worst of the odds are over, this increasingly seems artificial as I get on with my life. In many ways, as some of you have likely noticed, I am running out of things to say about cancer and lymphoma, and my weekly update is becoming rather artificial at best, narcissistic at worst.
And I have noticed from a number of other cancer-related blogs that I follow, that others have also scaled back, reflecting their need to ‘get on with their lives’ so to speak. So while I will continue to flag some articles of interest via Twitter, and post the occasional update should the occasion warrant it, I will no longer be compiling my articles of the week and writing my weekly updates.
I will still follow some of the cancer blogs that I have found particularly helpful, and tell my story where it can help fundraising or other awareness initiatives but, as we say in government, I will largely be in a ‘responsive mode.’
My other writing project, a book related to my time in government, is progressing and requires my focus and attention.
As you know, the nature of my lymphoma and treatment means that relapse remains a possibility. Hopefully, I will not need to reactivate this blog anytime soon. But for now, I have the luxury of signing off to pursue my other interests.
To the many of you who have followed this blog or dipped in occasionally, thank you for your interest and support. For those fellow travellers on the cancer journey, may you in particular be well, active and enjoy life.
The hard things that tug at the heart and create the pain are the unbearable truths to parents that they will lose a child; to siblings that the person they’ve known their entire lives will be gone; to children that they must overcome and move on. They convey a clear and undeniable message to doctors that they must relinquish the desire to salvage, fix and prolong.
In a similar vein, a doctor recalls how sharing his loss helped a patient come to terms with the terminal illness of her husband in Sharing my loss helped a patient’s loss.
This story surprised me: Suicide rates may be higher in stem cell transplant recipients, detailing the results of a massive European study of close to 300,000 stem cell recipients (both auto and allo). Delving into the details, some of the findings are more understandable: higher suicide rates among those suffering from GvHD, and higher relapse rates among those who have attempted suicide. But the overall findings still surprise me given the awe, wonder and gratitude that most of us feel when given another chance at life.
Alors, s’il y a lieu de livrer un combat, d’accord, j’accepte, et je revendique le droit de la personne touchée par le cancer de choisir sa façon de composer avec le défi du cancer. Que chaque personne puisse vivre sa vie jusqu’au bout, comme il le souhaite. Qu’une fois rendu au bout du sursis que représente la vie, il puisse se tourner vers son miroir intérieur et se dire avec un grand sourire : « Combien de montagnes, de lac et de défis j’ai surmontés, et combien je suis heureux et fier de porter en moi la certitude d’avoir savouré la vie, ma vie, en harmonie avec mes valeurs et mes convictions. »
Jim Salwitz shares how he and other oncologists deliver bad news in How doctors give bad news, and puts it into perspective:
This takes us back the vital question asked by my friend; how does a doctor prepare emotionally to give bad news? I think the answer is that the physician prepares by getting ready to do his job well. If he does a good job delivering the bad news, than he has helped the patient and family move forward in a difficult time of their lives. Done well, this is satisfying and important work. While at times it can be sad and even tragic to work with patients who are experiencing overwhelming health events, if the doctor can guide them through such times, then some element of suffering can be avoided. The healing of suffering, giving the chance to cope and preserving hope, gives every doctor peace and solace.
Health and Wellness
Nearly 25% of nurses wouldn’t recommend their hospital reports on a survey of Canadian nurses. While the figure is alarming (somewhat attenuated that almost 90 percent think safety measures are adequate), I wonder whether if you asked nurses what alternative hospitals they would recommend if they would be able to come up with an answer (we generally know our own environment, strength and weaknesses, not other environments). It also tells me, which I already know, that nurses, like doctors, are always dissatisfied with the quality of care they can provide, a good sign as it helps prevent complacency and mistakes.
A more useful survey is CBC rates 10 hospitals best in Canada, as it provides hospital ratings. Of course, the rating system used can bias the results, but transparency does focus the mind on where improvements may be required. I checked out the ratings for The Ottawa Hospital (where I received my care) and it received a B. I would rate it higher for the cancer care I received; interestingly, it received highest ratings for being patient friendly.
My Name is Roger, and I’m an alcoholicis about Roger Ebert’s experience with AA and how it helped him (and others) with his alcoholism, and a reminder of just how powerful support groups can be.
Lastly, Getting a Brain Boost Through Exercise reminds us of the importance of exercise to reducing memory loss and improve cognitive function, ideally through a mix of aerobics and strength training.
Other
A two-minute video of earth from space from a variety of perspectives.
I have featured earlier some of Christian Wyman’s reflections on religion and Christianity (see HERE), and Andrew Sullivan’s take on Wyman’s book On Christian Wiman’s “My Bright Abyss”captures the questioning better than some of the more secular reviews:
In short, Wiman’s book is the beginning of a conversation we very much need to have, and he clears away so much of the accumulated ridiculousness that has grown-up around discussions of religion in this country. He clarifies the questions we should be asking more than he offers “solutions.” Please read this book – for now, I only can urge that you approach this elegant, difficult testimony to what faith – always mingled with doubt, and always seeking to connect with lived experience – can mean in the modern world with honesty and an open heart. It truly is an essential book for our times.
Not sure whether I will read the book now, but one on my list.
A nice take on happiness in Happiness, Beyond the Databy Gary Cutting, in which he postulates four factors as being key to happiness: good luck, fulfilling work, the ‘proper pursuit’ of pleasure, and human love.
Funny how the drive back seemed longer than the drive down, leaving the palm trees behind and arriving back to early spring. Still a few snow patches left in Ottawa, but much less than when we left. We seemed to coming back with many of the regular ‘snowbirds’ (for non-Canadians, refers to retirees who escape the Canadian winter for 3-4 months), given the number of Canadian plates on the road.
But we made it back, getting back to our regular routine, with the usual list of things to get done as we prepare for the eventual real spring (only in May), thankful for the break that we had.
Have been having fun writing out different versions of my story for the Ottawa Hospital Foundation fundraiser mentioned earlier. Writing to the 5 minute mark (some 600 words) is a challenge; I have become too comfortable with the free-form of blog entries and too removed from the previous discipline of government briefing notes and decks! However, have sent in two versions for feedback, one organized conventionally (chronologically), one organized more thematically. Curious to see which one works better, and then can do the final revisions.
Finally got around to watching Touch of Evil, the infamous Orson Welles film that the studio so butchered the editing, that he wrote a 58-page memo outlining the needed changes. The studio ignored him but many years later, Walter Murch re-edited the film using Orson Welles’ memo as the basis (the movie came to my attention about a year ago when reading Michael Ondaatje and Walter Murch’s The Conversations: Walter Murch and the Art of Editing Film).
Not at the level of Citizen Kane, but still the work of a master, as the film noir tale of police corruption in a border town with Mexico unfolds. Welles himself plays the creepy and corrupt police chief Quinn all to well, Charles Heston plays Vargas, the honest Mexican drug official who brings Quinn down, and Janet Leigh plays Vargas’ wife, terrorized at Quinn’s doing, with a number of other strong members of the cast. While the complexity of the plot is sometimes hard to follow, some scenes are brilliant (the tension of the opening car bomb scene), and the film angles and lighting are wonderfully dramatic.
Next week will be catching up with some former colleagues as well as some serious work on my next writing project, more details to come when it is further advanced.
TIME’s “How To Cure Cancer” cover – worst of the year? reminds us the number of times ‘cure’ has been used and over promised, and that the complexities of cancers mean that while treatments will continue to improve and become more effective, curing all cancers is not in the cards any time soon.
Novartis loses landmark India patent case on cancer drugis another illustration over the ongoing intellectual property disputes over drugs, and the difficult balance between incentives for innovation and public health and budgets.
And among the worst news for any cancer patient apart from faulty diagnosis is misapplication of chemo doses as happened to 990 patients treated or being treated in four Ontario hospitals (fortunately not mine) in Ontario cancer patients given incorrect drug doses.
Susan Gubar has a wonderful piece this week, Living With Cancer: Truthiness, where she writes about the delicate dance we often have with our medical teams about our condition, treatment, prospects and the like, and the preferences we have in terms of how much information we want. Closing quote:
Perhaps with certain (albeit different) subjects, we all end up not asking. Probably about certain (albeit different) worries, our oncologists simply cannot tell. Why not skip lurid coming attractions that cannot possibly be fathomed? With respect to cancer, maybe we all have to endure in the conditional tense of truthiness.
We will not use mobile apps that add to the time we spend caring for ourselves;
We do not respond well to nagging (I would nuance this to say that ‘nagging’ has to find the right balance between helping us be mindful without being irritating – hard to achieve but Fitbit seems to have found the balance); and,
We favor apps that are linked to (or associated with) our clinician (in an ideal world, yes, but secondary in my opinion).
An interesting commentary on communication styles in Marriage and medicine: Both are not exact sciences, noting how the doctor-patient relationship benefits from a more nuanced approach to decision-making than simply laying down absolutes, just as in marriage.
On the practical vein, Sodium, Hiding in Plain Sight, notes that 80 percent of the salt consumed comes from factory and restaurant foods, and offers some practical ways to reduce consumption, pending concerted industry-wide action or government regulation (as other countries like Finland have done but Canada unfortunately not given the usual nanny-state ideological concerns).
As always, Jim Salwitz captures the patient-doctor relationship well in Trust: Data verses Doctor, showing how in the era of Dr. Google, patients can become better informed and complement the experience and expertise of their doctor:
So, how does the data revolution affect the doctor-patient relationship and does it change responsibility? If both parties are open to opportunity, having a patient prepare in this way can improve the quality of discussion. Even if the patient’s Internet prep is not quite focused on the particular medical problem, it at least makes the patient familiar with the broad issues and language, which helps the doctor, with the limited time available, more clearly communicate. With this being the goal, both patient and doctor need to bend, a little. The doctor needs to welcome the data and the better basic education that online investigation gives the patient, and the patient needs to be aware that the doctor’s decades of experience cannot be replaced by a Google search. By finding a balance, better health is possible.
Who is responsible for the quality of medical care? I would suggest both the doctor and the patient and I do not believe this changed at all. Both must demand full commitment and responsibility from themselves, as well as the other. The data revolution underlines, more than ever, that medical care is a team sport. Only together, do we heal.
As someone who loves movies, need to note the passing about of film critic Roger Ebert. Lot’s of good articles out there by the best one I ran across is RIP, Roger Ebert: The Beloved Critic on Writing, Life, and Mortality, as it includes many of his own words (see also Macleans Brian Johnson’s Roger Ebert: An Appreciation for a good summary of his style and impact, andRoger Ebert Talks Movingly About Losing and Re-Finding His Voice (TED 2011), one of the better TED talks and a powerful demonstration of his power of storytelling, as well as how technology has made all the difference to keeping him a full and active participant – thanks Victoria for bringing this to my attention). His comment on blogging, although written from his perspective as a movie critic, captures something more universal:
My blog became my voice, my outlet, my ‘social media’ in a way I couldn’t have dreamed of. Into it I poured my regrets, desires, and memories. Some days I became possessed. The comments were a form of feedback I’d never had before, and I gained a better and deeper understanding of my readers. I made ‘online friends,’ a concept I’d scoffed at. Most people choose to write a blog. I needed to. I didn’t intend for it to drift into autobiography, but in blogging there is a tidal drift that pushes you that way. … the Internet encourages first-person writing, and I’ve always written that way. How can a movie review be written in the third person, as if it were an account of facts? If it isn’t subjective, there’s something false about it.
Not much to write about this week. Enjoying the warmth, walking, biking and swimming, and occasionally checking the weather back in Ottawa to remind us of just how lucky we are to get away.
And always fun, as Canadians, to be in the States, observing the differences between Canada and the US, even if some of these may be more particular to Florida:
Everything is bigger. The roads, the stores, the food portions, and the people;
Class and racial differences are obvious. Whether at restaurants, shops, cultural centres or car washes, the people with the money are largely – but not exclusively – white, the service workers largely – but again not exclusively – black or latino;
Things are cheaper. We did our bit helping the American (or at least Chinese) economy at the outlets, but this applies elsewhere (but not healthcare);
The extent of Central and South American tourism in South Florida, most evident at one of the mega outlets, where Spanish and Portuguese were the main languages, with many shoppers buying suitcases to take their purchases home;
Designed for the car except for the designated ‘downtowns’ (either real or recreated). Even some of the nice paths near the water are not busy (in contrast to the malls ….);
Gated communities and security ‘theatre.’ The place we are staying has three separate gates to get in and special pass codes to access our floor. And it is a mid-range unit;
The backwardness of the US banking and credit card system, which still requires signatures rather than use of a PIN (as has been common in Canada and Europe for the last few years);
People are an interesting mix of both more open and chatty and curt and business-like;
And given that it is Florida, an overall older population, as we are here post-Spring break (makes me feel younger!).
I have been reading Through the Detox Prism: Exploring Organizational Failures and Design Responses, by Gilles Paquet and Tim Ragan, looking at five elements of organizational failures: management/labour, lack of clear accountabilities, not internalizing externalities, hijacking by outside groups, and lack of social and moral context. Some of the short case studies mentioned are not as convincing as they could be, in particular, the accountabilities section overly focuses on supply chain issues where I think the greater challenge is horizontal co-ordination and governance within organizations, whether private or public.
However, the book’s mention of the social and moral context is more than valid, as these are foundations upon which our institutions, laws, and codes reside, although I do not share the author’s caricature of modernism and relativism – the implied ‘good old days’ were not so good after all (Woody Allen’s brilliant characterization of nostalgia in Midnight in Paris reminds us of how we tend to see the past in rose-tinted glasses).
Best wishes to those of you celebrating Easter or Passover.
Ezekiel Emanuel’s A Plan to Fix Cancer Care, focuses on five changes: shift from fee-for-service to bundled payments, insurers to give doctors cost information and better data, rigorous quality monitoring, ‘high touch’ oncology services to reduce ER visits and allow for end-of-life planning, and better incentives for research.
Improved ways for giving long-term follow-up care;
Long-term data should be gathered from adult cancer survivors;
Use of electronic health records and other technologies to monitor and enhance survivors’ care; and,
Better palliative care.
Health and Wellness
Burgers, Fries and Lies comments on the fast-food industry complaints about the cost of healthcare coverage in the US, and how the industry may be getting off lightly given the long-term health cost implications of their products.
I have been following a discussion thread on patient engagement on LinkedIn (here) and one of the participants highlighted an orientation video for patients and their parents at the BC Children’s Hospital that benefited from parental input into what they need to know which is very well done (New BC Childen’s Hospital Cardiology Video-Thank You Partners in Pajamas- 6 minutes)
While written for health professionals, these presentation tips apply to all of us (7 tips to improve your patient presentations). I have seen some horror stories by those not following these; while being an empowered patient means learning some of the jargon and PFS (progression free survival) charts, slides done for medical students should not be used for patients!
While I had a good university experience, The Extreme (Existential) Makeoverdetails one person’s effort to redo their less satisfactory experience. Some of the general observations about makeovers are interesting.
David Brooks, in Forecasting Fox, outlines some approaches to improve forecasting and reduce confirmation and other biases (as per Kahneman). The study, by Penn and Berkeley, involved comparing the results of teams that used different approaches. Teams that engaged in probabilistic thinking performed best, where the inside view (knowing all the details of a particular situation) was less effective than the outside view (knowing about the probabilities in comparable situations). Closing quote:
If I were President Obama or John Kerry, I’d want the Penn/Berkeley predictions on my desk. The intelligence communities may hate it. High-status old vets have nothing to gain and much to lose by having their analysis measured against a bunch of outsiders. But this sort of work could probably help policy makers better anticipate what’s around the corner. It might induce them to think more probabilistically. It might make them better foxes.
I am enjoying the extracts by Evgeny Morozov in the NYT immensely. Imprisoned by Innovation reminds us that technology can be a force for conservatism, not innovation. My favourite quote:
By offloading the responsibility for problem solving from governments to citizens, self-tracking can get us to optimize our behavior within the constraints of an existing system. What we need is a chance to reform the system itself — perhaps by dismantling those constraints. Ambitious reforms like regulating the food industry and building the infrastructure needed to get good food to hungry people shouldn’t lose their relevance in the era of universal self-tracking.
Barbara Fredrickson reminds us of the importance of face time, not screen time, to improving relationships, emotional intelligence, and indeed overall health in Your Phone vs. Your Heart:
So the next time you see a friend, or a child, spending too much of their day facing a screen, extend a hand and invite him back to the world of real social encounters. You’ll not only build up his health and empathic skills, but yours as well. Friends don’t let friends lose their capacity for humanity.
Good timing to go South, as winter and snow continue in Ottawa….
Strange that the feeling of liberation from coats, hats, gloves (and shovelling!) is matched by the awareness that I have to get back to my summer ‘protective gear.’ While last year, I was just happy to be alive and walking, this year I feel a bit irritated that I have to cover up so much with SPF clothing and sunscreen, feel overdressed in the land of T-shirts and shorts, and be careful to avoid the mid-day sun. Not rational at all, but a reminder of how our expectations and irritations change as major problems diminish but emotionally there is a sense of loss nonetheless. Perhaps to complain is human!
That I complain about the necessary precautions to minimize sun exposure is a mark of just how little I have to complain about! Enjoy what we have, is a better approach.
None of this has prevented me from walking more, biking again, and for the first time in a number of years, swimming. My muscles feel it at the end of each day, but a good feeling, reminding me just of what I can do.
Even the drive down made me realize that I can do long drives again; while tiring, it was not exhausting, and was enjoyable seeing the slow transition from snow and temperate to green and sub-tropical, an awareness of the scale of our world that one does not appreciate from above.
Not much new but Is the war on cancer an ‘utter failure’?: A sobering look at how billions in research money is spent provides a sobering look on cancer research and treatment, noting that most of the improvement has come from prevention (anti-smoking campaigns), with marginal improvements in most other outcomes. I do not think it is quite as bleak as all that; given the complexity of cancers, both at the individual and common levels, it was naive to expect early ‘cures.’ Managing cancer as a chronic disease does have real benefits to people such as myself. And the latest approach to cancer research, Cancer Dream Teams: Road to a Cure?, outlines how interdisciplinary teams, comprising researchers from a range of disciplines, recognize the complexity of cancers and will hopefully lead to promising results. Not sure how much is ‘repackaging’ of what was likely common practice already.
Much has been written about the links between environmental factors and cancer.Cancer Cluster or Chance?goes behind the science and uncertainty of accounts like Toms River: A Story of Science and Salvation, underlining the difference between correlation and causation, the wish to see patterns where they may be none, and how the politics plays itself out. I would still take a more ‘precautionary principle’ approach that the author, as I think the cumulative effects of our exposure to various chemicals and the like is not without impact, but important to understand the limits of what we know and don’t know. For the review of the book, more sympathetic than this piece, see Books: On the Trail of Cancer: A Review of ‘Toms River’ by Dan Fagin.
James Salwitz on The fine balance between hope and cope in cancer patients, reminds doctors and patients of the need for honesty in discussing the prognosis and usefulness or not of treatment. The rush to treatment, in some cases, can prevent a patient from doing more important things and enjoying life. In a related post, Oncologists vs Hospice, he comments on the need for oncologists to have earlier end-of-life discussions with patients to avoid unnecessary treatment and suffering. And Suleika Jaouad reminds us that not all of us make it through our journey, in A Friendship, Interrupted, about one of her friends who she met in the cancer ward.
The Semantics of Cancer, by Karin Diamond, is another in a series of reflections on the terminology of cancer, and the risk of insensitive comments. Some good examples of what not to say, could be strengthened by a stronger sense of grace and recognition that people, despite their best intentions, will sometimes say the wrong things, and one has to appreciate, in many cases, the intent behind the comment. But her closing remarks were spot-on:
Let’s turn up the love and respect and turn down the need to pounce with our own solutions to problems that may not even exist. The choices someone makes may be drastically different from how you’d approach a situation, but there is no single right way to survive and thrive in this wild and beautiful life. Let’s give each other the space and freedom to do that however we must, minus all the pressure and expectations.
And a reminder in Cancer patients who are positive in the face of terrible adversity that positive thinking doesn’t improve outcomes or survival. However, the article fails to acknowledge the importance that positive thinking can make to getting through cancer treatments, both for the patient and those close to them, and that it may help the patient be more active in their treatment, helping recovery time.
But to me, life isn’t about creating checklists to check off; to me, it’s about experiencing what you have, where you are, and who you’re with. …. Life’s a journey not a to-do list.
Health and Wellness
While I understand the need for ‘scripting’ in service and call centres, Scripting with patients is a silly gamecaptures some of the absurdity in a healthcare setting.
A good reminder of Questions to ask before your CT scan, given the amount of radiation involved in CT (and PET) scans and how to minimize this over the long-term.
How a Healthy Heart Can Lower Risk of Cancer reminds us that healthy living, whether to reduce the risk of heart disease or cancer, comes down to the same general things: exercise, nutrition, avoid smoking.
The ultimate in online doctoring in The Doctor is In (Well, Logged In) strikes me more as hucksterism than quality medical care but others may disagree.
Mark Bittman, on Banning the Big Gulp Ban, provides his assessment of the court decision striking down the Bloomberg ban of large-size soda drinks. Good piece.
Other
Bruce Feiler’sThe Stories That Bind Us details how family histories and stories, through their ups and downs, provide a solid grounding that life has its good and bad moments, and in telling these stories, we can increase resilience in kids.
And more from Evgeny Morozov, Open and Closed, on how online transparency may not be so transparent and helpful as thought. I particularly liked this comment (which applies in many countries):
Likewise, “open government” — a term once reserved for discussing accountability — today is used mostly to describe how easy it is to access, manipulate and “remix” chunks of government information. “Openness” here doesn’t measure whether such data increase accountability, only how many apps can be built on top of it, even if those apps pursue trivial goals. This ambiguity of “openness” allows British Prime Minister David Cameron to champion open government while also complaining that freedom of information laws are “furring up the arteries of government.”
First, I finally saw Amour by Michael Haneke, the winner of the Best Foreign Film at the Oscars (and far, far better and more profound than Argo ….). Not a cheery movie, about old age, and how the relationship changes when Anne, the wife, suffers a mild stroke and following an unsuccessful operation, gets weaker and more vulnerable quickly, and how her husband, Georges, who cares for her warmly and with patience, but in the end is worn down and can no longer cope. Brilliantly acted (Emanuelle Riva, Jean-Louis Trintignant, with Elizabeth Huppert as the stressed daughter), taking place within the increasing confines of their apartment, and with a pacing that captures the slowing down of old age and infirmity.
Well-worth seeing, even if the subject matter and treatment is uncomfortable, just like old age and infirmity. See this take The Brutal Truth of ‘Amour’ – NYTimes.com.
Another uneasy movie, Poulet aux prunes (Chicken with Plums) is the second movie of Marjane Satrapi, the author and director of Persepolis. Much darker, without the wry sense of humour of Persepolis, about a famous violinist, Nasser Ali (played by Mathieu Amalric, his loveless marriage and incapacity as a father, and his longing for Irane, his first and everlasting love, a love forbidden by her father, but one that transformed him from a good to great musician, able to catch ‘the sigh.’
A bit of magic realism, messages of love, loss, and art, playful in parts, not completely successful, but yet deeply moving. Not as ‘réusssi’ as Persepolis, but an interesting film nonetheless.
From ploughing through the details of the mafia in The Sixth Family, a much more enjoyable read in The Emperor of Paris by CS Richardson. In many ways, as I love Paris, an easy tale to fall for, how various characters – bakers, watchmakers, couturiers, restorers, booksellers – weave in and out of each others lives, and how finally the two protagonists come together and find one another. But somehow, the elegance of the writing and the richness of the language, come at the expense of the depth of the characters and interest in the plot. The first half of the book I spent marvelling at the writing but wondering what was the story; the pace quickened in the second half. Overall, I enjoyed it, and his narrative, telling it backwards and elliptically, makes for an interesting style.
In other news, I have been discussing with the Ottawa Hospital Foundation how I can help with their fundraising efforts and have to find a way to tell my story in 5 minutes or less! A good writing and communications challenge.
We are off for a driving trip to Florida over the next few weeks. Given that winter appears to be stubborn this year (snow this past week and a cold wind today), will be nice to get away and have an early taste of summer.
