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.
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.
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.
All for this week.
Some good movies this week.
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.
Another good week. Winter definitely feels on its way out, it is gradually getting warmer and the days longer.
I made it to my monthly lymphoma support group. I am starting to wonder whether the first hour format really works as well as it should. The introductions – ‘Hi, my name is X, and I was diagnosed with ______’ becomes repetitive for most of the regulars, and typically takes 20-30 minutes for the 20 or so people there (some provide more detail on their treatment than others ….). We will have a discussion at the June meeting of next year’s program of meetings, and I may raise my wish for shorter introductions (name plus diagnosis and year of diagnosis – that allows people to have the essentials and link up with people who share their diagnosis, and allow time for more discussion on topics of interest). If any of you readers out there have some suggestions, either based on your own support groups or otherwise, this would be appreciated.
The second part was a presentation on some of the most recent studies and trials presented at the American Society of Hematology conference last December by one of our hematologists. Apart from the details on the various results provided, she made a number of interesting comments:
In other news, no tears for Hugo Chávez (but sympathy to his family), even if I recognize his symbolic importance to the poor in Venezuela, as he gets my cancer denialism award of the year. Not sure whether it reflects his dictatorial tendencies, general male trait not wishing to show vulnerability, or ‘machismo’ but I think most of us with a ‘touch of cancer’ knew this was coming a year or more ago.
No movies this week but we have been watching season 1 of Downton Abbey which we had missed. As with all first seasons, more fresh than subsequent ones and more tightly written, even if some of the plot twists and turns are not credible. However, it is helpful to have the back story now, as well as appreciating just how impressive the weaving of stories and characters is, and the mapping that must have taken place to make it all fit together, even if in the end is basically high brow soap opera.
A quiet week. The hernia is all but in the past, and I continue to ramp up my activity levels. I restarted yoga, and apart from a few stretches, rarely felt any sharp pain. And thanks to some more winter weather, I was able to gradually – and gently – shovelling some snow. Another form of physio!
I also attended a ‘non-fundraising fundraiser’ (i.e., no pledge forms but strong messaging about how well funds are used) at The Ottawa Hospital. Really well-organized, and they have their messaging and story down pat (the mantra ‘Compassionate People, World-Class Care’) is matched by their emphasis, in highlighting success stories, on ‘talent, technology and research’.
More leading-edge work done here than I expected, although I had some confirmation while getting my second opinion from Toronto’s Princess Margaret Hospital, Canada’s leading cancer centre, of just how respected the Blood and Marrow Transplant team here is. The other message, always relevant, is how low fundraising administration costs are (20-25 percent, compared to most large cancer charities, which are in the 40 percent range), which is always something I look at.
A nice touch was being seated beside one of my nurses from 5 West (the hematology ward). Nice to catch up and, as she said, the nurses are always happy to see how patients are doing well after they have left their care.
The dinner even included a nice shout-out to my book!
We watched Wes Anderson’s Moonrise Kingdom. A quirky movie (like all of his movies), about two kids who find it difficult to fit in, one a boy scout in a camp, the other a girl from a dysfunctional family, who run away together. Never really comes together, even if it is well-filmed (the colour has a sepia tone which gives it an unusual warmth).
I continue to wade through my mafia book (The Sixth Family: The Collapse of the New York Mafia and the Rise of Vito Rizzuto). It is heavy going, and I think unfortunately, the storyline suffers through the endless details of meetings, killings, drug busts, court cases (successful and unsuccessful) and the like. I admire the authors’ detailed research but a shorter book would be more engaging.
Life continues to be good.
It has largely been a recovery week, although a fairly easy one. While still somewhat painful, psychologically easier to deal with than the pre-operation discomfort, as I know I am on the healing track and do not have to worry about it getting worse. No major restrictions in terms of walking and mild stretches but no yoga or sports until later this week.
Some of you may recall that I bought a fitness tracker a few months ago (Fitbit). While I have always been reasonably active, I find that it does bring a further degree of mindfulness on the need to be active, particularly important during recovery.
One of my ‘mates’ at the Shouldice ‘camp’ was the champion walker – we almost never saw him sit down apart from meals – and his daughter had also bought him a Fitbit a month or so before his operation. We discussed the effect that it had on his level activity, given that he was clearly also a very active guy. He noted that it provided an extra push; rather than take the elevator up 5 floors to visit his mother, he would walk up the stairs, and a number of other examples. And even the ‘silly’ psychological tricks (e.g., messages you are close to your daily goal, badges for different levels of achievement) worked at the margin to make one more active. My experience is similar, kind of funny how sometimes the mind works, and how such automatically generated encouragement can actually be effective. I have been managing well-over the (default) goal of 10,000 steps and 10 flights of stairs daily, so things are going well.
As it was university reading week, good to have the kids home for part of the week and catch up with their news and plans.
My daughter gave me a book about the mafia The Sixth Family: The Collapse of the New York Mafia and the Rise of Vito Rizzuto by Lee Lamothe and Adrian Humphreys. Funny to be reading this as the Charbonneau Commission into corruption in the construction industry in Quebec is taking place, with a number of suspected Mafia figures ‘testifying’ like ‘Mr. Sidewalk’ about wads of cash in stuffed in socks (you can’t make this up….). More detailed than I would normally want, but it does give a sense of just how painstaking police work has to be to figure out all the connections, relationships and money flows. More a book for the cognoscenti than the general reader but it is keeping my attention.
We did, of course, watch the season finale of Downton Abbey, and, like many, became too vested in the characters and were angry about the tragic ending. However, as Julian Fellowes explains here, the only way to deal with the end of actor’s contract, particularly for family members, is to kill them off. So first Sybil, then Matthew (doubt that this is real spoiler alert at this stage). A cruel business, creating fantasy worlds!
As part of the pre-Oscar preparations in seeing most of the nominated movies, we saw Les Misérables the other day. While I liked the musical on the stage (some 25 years ago!), the screen adaptation was misérable. Not sure exactly what it was, perhaps the excessive close face-shots, the jiggly (and annoying) camera work), the lack of passion or spark in the actors, and, this may reflect changing tastes, the flatness of the music. A stage production allows one some distance, as some reviewers have noticed, this film version is in your face, and too much so (see NYT review here), with its final comments on director Tim Hooper (who also directed the wonderful The King’s Speech):
But his inability to leave any lily ungilded — to direct a scene without tilting or hurtling or throwing the camera around — is bludgeoning and deadly. By the grand finale, when tout le monde is waving the French tricolor in victory, you may instead be raising the white flag in exhausted defeat.
Looking forward to the annual shlock that is the Academy Awards tonight – always fun, even if I suspect I may disagree with some of the winners.
Well, the hernia is done, and the overall experience at the Shouldice a good one. It really is a well-oiled machine:
Overall, a much better experience than standard hospitals. A few other observations:
I finally managed to read Jan Wong’s Red China Blues, her account as a student during the last days of the Cultural Revolution, and subsequent stint as Globe and Mail correspondent during the Tiananmen uprising and massacre. Much of her story is that of her personal growth and coming to terms with the reality of China and the Chinese government; starting off as an idealistic Maoist and ending as a disillusioned cynic of the corruption and inequality in contemporary China. A very good and interesting read, and helpful in understanding contemporary China, what has changed, and what has not.
Today, we drive back to Ottawa. Fortunately, the timing dovetails with reading week, so we will have the kids with us in the car, more good family time.
Although without medical significance, have now passed the year and a half mark, so still something to celebrate.
This week, I had been fighting, unsuccessfully, a cold. Never fully developed, but had a slight fever, so had to cancel most of my planned activities, as I cannot afford to be unwell for next week’s hernia operation. In pre-cancer days, I would have soldiered through, post-cancer, I know my limits better and behave accordingly. Was a bit stir crazy through most of the week, but am largely through it now and back to walks (and shovelling snow this weekend!).
The one event that I did make was a ceremony at my hospital to mark the 100th stem cell courier run by the Bruce Denniston Bone Marrow Society (one of their key activities is providing volunteers to act as couriers for time sensitive and fragile stem cell donations – my stem cell transplant was but one example). Many couriers were there (a large number former police officers given that Bruce Denniston was a Mountie who died of leukaemia). Apart from all the tributes and speeches, nice to see so many of the people that make the system work there to receive this thanks in person.
I also had a chance to catch up with many members of my medical team. My book came up. While most had not read it yet (one doctor is saving it up for the long flight to Australia in a few months!), the hematologist who first welcomed me into the ward way back in summer 2009 had read it. Starting off by saying he normally didn’t like patient accounts, he found mine balanced and helpful in his teaching of the next generation. He also mentioned the graphics as particularly useful; not only was I relieved that I had captured the process and details correctly, it was satisfying to watch him call it up on his iPad and show me how he was using it..
Over the past week, have been reading Gilles Paquet’s Moderato cantabile (moderately and melodiously): Toward principle governance for Canada’s immigration regime. Much is familiar terrain as per my earlier comments on Deep Cultural Diversity: A Governance Challenge.
Unfortunately, the polemical and ideological language distracts from the valid policy discussion on immigration levels, absorptive capacity, the balance between facilitating citizenship and making it meaningful, and equally the balance between integration and accommodation in multiculturalism (or ‘rules of hospitality’ and ‘fair play’ in his terms).
I am always surprised when sophisticated thinkers like Paquet resort to polemic language, as it tends to ‘preach to the converted’ rather than making more dispassionate – and likely more effective – arguments. And attacking other views as ‘ideological’ can only invite similar charges.
A more interesting approach would be a more open discussion of what citizenship means in today’s more globalized world, where travel is cheap, communications free, ethnic programming universal, and whether ’moral contract’ approaches can be meaningful, implementable, and apply to all groups, established and newcomer, historic and new faith communities, Canadians living in Canada or living abroad, and Canadian expatriates, whether born in Canada or not. We can’t turn the clock back on globalization and how it is easier for people to cross time and space and thus all governments struggle to find balance between making citizenship more meaningful in such a world, while accommodating the realities of a more mobile citizenry, and more complex and layered identities.
On a lighter note, I have been reading Jian Gomeshi’s (well-known Canadian radio host and wonderful interviewer for non-Canadian readers) 1982, his memoirs as a teenager in a suburb of Toronto. While he is a wonderful radio host, as a writer, not so. Maybe he was trying to write as a teenager. Maybe he really is as obsessed over his teenage years. Maybe he thinks this period was really interesting and were his ‘glory days’. Maybe each discovery of a new rock or new wave group was unique and amazing. Maybe his Adidas bag was truly iconic. Maybe he dictated his book rather than writing more thoughtfully. And maybe he had nothing more profound to say. And maybe he likes to write in short sentences like this. I really don’t know.
And to use one of his stylistic ‘gimmicks’, here is a list I made about things I didn’t like about 1982:
Maybe he didn’t have a good editor, maybe I just don’t find teenage angst all that interesting, or maybe I just don’t get it!
In terms of movies this week, we saw the documentary about Ai Weiwei: Never Sorry, the Chinese installation artist and political activist. His international profile protects him somewhat, and he has an interesting combination of determination and humour as he goes about ‘bugging’ the authorities. And while I am not a great fan of installation art, some of his work is brilliant, my favourite being the use of backpacks in a German show to commemorate the children who lost their lives during the 2008 Sichuan earthquake due to faulty school construction.
On a lighter note, our favourite Louis de Funès movie, La grande vadrouille, his World War II escape picture, with all his trademark gags and slapstick. While the dialogue is not as clever as the Marx Brothers, some of the gags and scenes are incredibly funny. We used to watch his films with our kids when they we in primary school, as there is something about the timeless comic classics (Keaton, Chaplin, Marx Brothers and de Funès) that appeal to the child in all of us.
For my Chinese readers, best wishes for the Year of the Snake, with happiness, health and prosperity for the coming year.
Next week we are off to Toronto for my hernia operation. Not sure whether I will be up to my ‘articles of the week’ post but will likely have some observations on yet another healthcare experience, my first with a private hospital (but paid by medicare).
I had my usual quarterly clinic visit this week. Another sign that I am on the routine track was being examined by one of the new fellows. It started off amusingly enough, when he walked in and said he had heard a lot about me as I was ‘unique’. When I made a bit of a face, he quickly clarified that there are few mantle cell lymphoma patients who have undergone allo stem cell transplants and, by implication, that are as doing as well as I am. So ‘unique’ in a good sense.
We had the usual discussion of next steps, both separately and with one of the senior hematologists. In essence, I am in the ‘watch and wait’ mode. No need to do any scans or other tests; as they indicated, should my mantle cell lymphoma come back I will know and no test will provide any significant heads-up.
On some of my particular issues:
What is also striking is the overall tone of my appointments, not only with the members of the medical team that I have grown to know and appreciate over the past few years, but also the newer members of the team. Part of it the nature and intensity of the experience together, part of it is their genuine pride that they have helped me come through the ‘other end’ relatively well, and part is the excitement that I have taken the time to write a book about my cancer journey. Not quite family, but the connection is there.
We went to a session on vitamins, minerals and herbs for cancer care, organized by the Ottawa Integrative Cancer Centre, featuring pharmacist Heather Boon and naturapath and head of the OICC, Dugald Seely. The first part focussed on the regulatory system for health products (dietary supplements in USA). More regulated than I expected, in terms of quality control and accurate labelling, with safety data, including side effects and interactions, having to be provided to Health Canada. Health products can either be labelled as having scientific evidence for effectiveness (clinical trials) or with a traditional use claim. Australia apparently has a similar regulatory approach (approval prior to being available for sale), the US, not surprisingly, has a more free market approach allowing for products to be sold, with false claims and safety issued being resolved through the courts.
While the presentations and discussion did not get at the more practical (‘what should I do’) as I would have liked, some good general advice:
Both in the presentations, as well as some chatting with the presenters, confirmed that the greatest benefit comes from the basics: not smoking, eating healthily, and exercise. As Dr. Boon said, ‘While I would love there to be a miracle pill or formula, we simply don’t have enough evidence.’ But with lifestyle we do, so focus on that.
I have been doing some further ‘tweaking’ of my blog, primarily the side bar to improve navigation and reduce duplication. One of the challenges with blog maintenance and refreshing is that one no longer sees certain issues; fortunately, one of our friends has started a blog and helping her with some of the settings has forced me to review mine. Let me know what your think.
Not surprisingly, some people prefer the former approach of daily article summaries; others prefer the current approach of weekly ones. While the latter provides some minor time savings to me, it is harder to choose and fit the articles together, which is good mental exercise for me.
We saw A Late Quartet, a story about a New York-based quartet, where the simmering tensions between the various members emerge when the senior member discovers he is in the early stages of Parkinsons. Very well acted (Christopher Walken, Philip Seymour Hoffman, Mark Ivanir, Catherine Keener) with credible characters, a lovely musical score, and some very powerful teaching scenes that provide a connected yet distant narrative on music. And underscoring it all (pun intended), the dynamic of passion versus control, in both the musical and personal aspects.
Next week, is relatively busy week. A pulmonary function test (PFT), my Lymphoma Support Group (with a presentation on chemo brain), and a celebration by the Blood and Marrow Transplant Team of the volunteer stem cell courier program, a good chance to catch up with the various members of my medical team, apart from catching up with a number of people.