Year 1, Week 7: All too familiar continued, Joseph Anton

1:7

I have been observing some of the procedures and ways of providing chemo in Switzerland. While much is familiar, some differences are interesting, some more perplexing, and some just irritating (I suspect someone coming from the other perspective would have similar characterization of the Canadian system). Some of these observations may reflect the particular practices at the individual hospital, which is more of a ’boutique’ hospital than the larger public hospital affiliated with the university. Some may reflect the practice of the presiding oncologist.

On the of note side:

  • Chemo protocols and complementary meds are familiar and standard (some of the names are different but the base compounds are the same);
  • Face masks are not freely available – one has to request them;
  • While nurses where protective gloves when handling chemo, they do not wear face masks and gowns, the normal practice in Ottawa; and,
  • The ‘plumbing’ appears more complex and black tubing is used for some medication rather than the clear plastic tubing used in Canada (which allows bubbles to be seen more easily).

On the more substantive side, and irritating from the perspective of patients and caregivers:

  • No or very limited progress on electronic health records. Everything seems to be paper-based. Patients carry their record of treatment in a small patient book that they have to bring to every appointment, rather than the doctors just being able to look this up on a computer or iPad screen; and,
  • The post-care med instructions are presented in an unclear manner, with no precision in terms of exactly how long many medications should be taken. A sharp contrast to Ottawa, where a clear table, listing the meds, the dosage, frequency, and end date makes it easy to follow (or easier). I was so frustrated that I prepared a table to help guide my mother-in-law (the oncologist was impressed!).

On the positive side, as noted last week, physio is prescribed from day 1 as part of treatment, 3 days a week, rather than later on.

Of course, as this photo shows, patient amenities are far superior, but I really find it disturbing that some of the basics to make patient life easier – doctor having electronic access to health information, good post-treatment information and medical instruction sheets – are missing. However, on the positive side, my experience helps fill in the gaps, helping my mother-in-law’s recovery.

While I have not been able to maintain my biking routine here, we have been able to go for some nice walks and, given Geneva has hills unlike Ottawa, I am able to push myself a bit more. And as the apartment we are staying in is on the fourth floor, I walk up the stairs rather than take the elevator. Every bit helps, even if I am out of breath a bit.

I am enjoying Joseph Anton, Salman Rushdie’s memoir, immensely and am about half-way through. It is a pretty unvarnished self-examination, with all the messiness and turbulence of his personal life, while capturing the political and religious aspects of the fatwa and its aftermath, and the loneliness, isolation and security requirements imposed upon him.

Part of the book is settling scores, but just as he is unforgiving of politicians, religious leaders, fellow writers, senior officials and journalists who did not understand or appreciate the principles at stake, he is equally, if not more so, generous of those who did support him, particularly in the early days, and the close circle of friends who helped keep him sane. Sometimes he tends to go on a bit too much for my taste, but overall it underlines the message of the loyalty and importance of friends.

Some of his score settling is bitingly funny, whether in the form of one sentence dismissals, using the self-implicating words of the individuals themselves, some in the form of draft letters that were not sent at the time (e.g., his letter to the UK Chief Rabbi).

It also helped me understand The Satanic Verses better, as the third in the series of self-exploration: Midnight’s Children for his Indian background, Shame for the influence of Pakistan, and The Satanic Verses for his identity as a migrant. One of his insights, similar but further developed than Neil Bissoondath’s Selling Illusions, is the power of mixed or layered identities:

He was a Bombay boy who had made his life in London among the English, but often he felt cursed by a double unbelonging. The root of language, at least remained, but he began to appreciate how deeply he felt the loss of the other roots, and how confused he felt about what he had become. In the age of migration the world’s millions of migrated selves faced colossal problems, problems of homelessness, hunger, unemployment, disease, persecution, alienation, fear. He was one of the luckier ones, but one great problem remained: that of authenticity. The migrated self became, inevitably, heterogeneous instead of homogeneous, belonging to more than one place, multiple rather than singular, responding to more than one way of being, more than averagely mixed up. Was it possible to be – to become good at being – not rootless, but multiply rooted? Not to suffer from a loss of roots but to benefit from an excess of them? The different roots would have to be of equal or near-equal strength, and he worried that his Indian connection had weakened. He needed to make an act of reclamation of the Indian identity he had lost, or felt he was in danger of losing. The self was both its origins and its journey.

And within this frame, there is a wonderful discussion of his creative processes, how each of his books emerged, and how he picks up and uses different experiences to help set part of one book or another. While I have read many of his books, this helped me appreciate and understand them more, as well as the different narrative styles. For example, the structure of The Satanic Verses was inspired by the meandering approach of the traditional Indian storytellers and players that would go from village to village (featured later in Shalimar the Clown).

At times, the account of his hidden life becomes tedious, reflecting the tedium of his existence and then, in a wonderful turn of tone, in the chapter ‘Been Down So Long, It Looks Like Up to Me’, when he realizes his role is to fight the fatwa, the intolerance it represents, not only on his behalf but of other authors, particularly those in Islamic countries, who were similarly threatened and in some cases killed.

He was learning that to win a fight like this, it was not enough to know what one was fighting against. That was easy. He was fighting against the view that people could be killed for their ideas, and against the ability of any religion to place a limiting point on thought. But he needed, now, to be clear of what he was fighting for. Freedom of speech, freedom of the imagination, freedom from fear, and the beautiful, ancient art of which he was privileged to be a practitioner. Also skepticism, irreverence, doubt, satire, comedy, and unholy glee. He would never again flinch from the defence of these things. He had asked himself the question: As you are fighting a battle that may cost you your life, is the thing for which you are fighting worth losing your life for? And he had found if possible to answer: yes. He was prepared to die, if dying became necessary, for what Carmen Callil had called ‘a bloody book.’

And then gradually, he starts, with heavy security instructions, to come out of the shadows and have a public life again, but that of advocate, not of writer.

For those interested in the short version, Rushdie wrote a good short piece in The New Yorker, Life After the Fatwa. For some related commentary, and linkage to the current protests over the deliberately provocative video in some Islamic countries, a good piece by Bill Keller of the New York Times The Satanic Video and another, on the role that blasphemy has played in history with respect to our freedoms, see Robert Fulford in the National Post In Praise of Blasphemy. Rushdie’s metaphor of blackbirds as the forces against freedom of thought and expression, whether against serious literature or scurrilous provocation, is a powerful one.

Enough of the book review.

With respect to my book, Living with Cancer, it will be released late October when I am back in Canada, as some of the organizations I am partnering with stressed the importance of being available for promotion. All texts are done, which is a good feeling.

Expect a fairly quiet week but hope to continue to get out for good walks.

Advertisements

4 thoughts on “Year 1, Week 7: All too familiar continued, Joseph Anton

  1. Very interesting. Yes, it seems that protocols and medications are pretty much the same everywhere. I was talking to an Irish nurse the other day and when I said “taxotere” she instantly recognized it. For France I can attest to the fact that electronic record keeping here also has a ways to go – at the hospital my data is in an information system but I am still required to carry around a black binder with all my scans, test results, and the like. On the other hand, thanks to the Plan Cancer, information for patients is much much better. I have an excellent book about chemotherapy that was given to me at the start of my treatment, I also have a little book that tracks chemo appointments and side effects and before each chemo I’ve received a one page factsheet listing the possible side effects and what to do about them (and when to call). Very nice.

    And thank you for the words about Rushdie’s memoir. I’m about to begin Imaginary Homelands which just became available here for kindle. This will be the very first book of his I’ve ever read and I have high hopes for a good read.

    • Thanks Victoria for sharing your observations. Sounds like your care in France has some of those nice patient touches as in Ottawa that help us sort through all the things we need to learn, know, and keep track of.

      I haven’t read Imaginary Homelands so look forward to your thoughts.

  2. Hi Andrew,
    I have been following your blog for some time now. My husband was supposed to do an auto-STC but his lymphoma could not be resolved at that time. It was decided to try for an allo-STC. After many, many months, he began the process today. Your blog has given us insight and helped to calm some nerves, as well as guide us with questions to ask. Thank you for sharing your journey. We know we have a long road ahead but we are very grateful that he is able to receive this chance.

    • Hi Beth,

      Thanks for sharing and best wishes to you both as you start the allo SCT journey. It is a marathon but I will always remain grateful for having this chance. I assume you also use the LLS community forum as it is also a good place to ask questions and get support. Best regards, Andrew

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s