For those interested, an article about my journey (old history now!):
An article on my forthcoming book, Resetting Citizenship and Multiculturalism.
As part of my book “Resetting Citizenship and Multiculturalism”, I have created a new blog to help me manage information and articles.
I have also created a related Facebook page, link below:
Part of my journey beyond my cancer identity
My patient testimonial to help raise funds for the Ottawa Hospital.
Each of the stories was very powerful in its own way, reminding how fortunate we are to have such good medical care in our community.
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.
In The simple act of truth in the face of incurable cancer, Elaine Waples speaks powerfully of what is important when faced with knowing that one will die. It all comes down to the people one loves. Quote:
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.
Hard to believe, but More Than a Quarter of Melanoma Survivors Skip Sunscreen, Study Finds. While the experts try to find excuses (more education needed, perhaps tanning is addictive), I am more drawn to a simpler explanation: human stupidity.
A good overview of progress in cancer research and treatment by Dr. Len Lichtenfeld of the American Cancer Society, more optimistic than usual, in Is Cancer Research and Treatment Moving From Evolution To Revolution?
A good piece in Le Devoir by Marika Audet-Lapointe, Libre-opinion – Cancer: abandonnons les métaphores guerrières:
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.
Experts blast Health Canada’s approach to sodium reduction points out that voluntary guidelines without transparency and monitoring are likely to be little more than symbolic with little effectiveness. Another critique of government policy comes from André Picard in Tories deliver a hollow boast on health-care spending, noting how federal health policy has weakened a national healthcare consistency and delivery.
My Name is Roger, and I’m an alcoholic is 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.
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 Data by 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 drug is 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.
Man captures wife’s heartbreaking cancer battle with photo blog outlines one family’s struggle with cancer and how they shared this experience to increase awareness.
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.
A good post on health apps. What patients want from mobile apps boils it down to three things:
- 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.
The Science of How Your Mind-Wandering Is Robbing You of Happiness provides a convincing demonstration of just how important living in the moment, being in the now, can be to happiness, from the Track Your Happiness project of Matt Killingsworth.
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, and Roger 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.
His terse comment on mortality is a classic:
We’re all dying in increments.
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.
A ‘re-run’ of my Organizing your medical file piece in Cancerwise.