"Thank you, we are still trying"

“Our understanding of breast cancer continues to grow; if the pace of advance seems at times bewildering, remember that for some of our patients it will never be fast enough”

Umberto Veronesi

Former Scientific Director and
Minister of Health of Italy

European Institute of Oncology

Milan, Italy

[Forward to Breast Cancer: A Practical Guide; Elsevier Science 2000]

In 1998 I was doing my PhD in breast cancer genetics with Professor Roger Blamey in Nottingham, was a year into my thesis work and pretty much completely all at sea.  The experiments weren’t running, the field seemed to be progressing faster just about everywhere else but in my lab, and everything that I thought would be a good idea to start work on was about to be presented at some upcoming meeting – it seemed that everyone had a jump on me.  It was then that I first met Professor Veronesi who was delivering the keynote opening address at the Annual Breast Meeting that year. 

The Nottingham meeting is not the typical breast cancer symposium and most of us were proud of it.  The lack of the usual six star luxury hotels and convention centres meant that some world leaders in breast cancer research were decking it out like the rest of us in post graduate digs; in those days Nottingham did not have its present monorail system and I think I drove the head of the Netherlands Cancer Institute back to his bed and breakfast in a borrowed Fiat Uno.  the informal setting allowed for a frank exchange of ideas  over beer in jeans and anoraks (it always pays to have raingear in the midlands) and the relaxed air was the perfect antidote to a conference season with too many stuffed shirts and stuffed egos.  In short, I was in clinical research fellow’s heaven. 

I had got to the Nottingham unit on the recommendation of a former colleague of Prof Blamey’s who had told him that “this boy has the irritating habit of asking questions – please see what you can do with him”.  The likes of Blamey and Veronesi were not called clinician – scientists then, but that describes them perfectly.   After my short time with them I came to understand how just doing the clinical service was not ever going to be enough for me.  There were daily encounters with patients who deserved better answers than the ones we could offer.  I would explain the diagnosis of breast cancer, the treatment options and answer the immediate questions – how much would it cost, how would a breast conservation breast look like,  what were the side effects, what the survival likelihood; and then that pause as it all sank in. followed usually in a softer voice as she hopes you’re not going to take this the wrong way, “ So are those the only options?” “Why is it cancer when I’ve been doing my mammograms?” “ Are my daughters safe?”  “How long has the cancer been there?” “Is it something I ate?” And at this clinic when I first tell them their worst fears are now a reality, before the peace that comes with time and friends and caring husbands and excellent nurses, at this first clinic that look they give – “can’t you make it go away?”

In the National University Breast Unit we see patients with different breast issues at different clinics.  The “counselling clinic” is the term for that first clinic when we tell these women their cancer result in the presence of the breast care nurses.   The reason is apparently organisational – so that the partnership of surgeon and nurse comes at regular hours each week.  But in truth I think there is another reason: when Veronesi gave his keynote address in Nottingham he did not quite use the closing words as printed in the forward quoted at the start of this blog. Instead of “patients” he used, “mothers, sisters, wives and daughters”.  That started the change. And makes Counselling Clinics so hard that we find it easier to face at an appointed time each week.  And why we need to challenge convention and ask questions.  

Ganiyari

A few years ago I spent some time in an obscure village in India called Ganiyari. Ganiyari was like most Indian villages, small and unremarkable in most ways; except one. Sometime in the year 2000 a diverse group of highly trained doctors, all from what is considered the Parnassus of training institutions in India, the All India Institute of Medical Sciences, had at the end of a long and gruelling emotional, philosophical and geographical journey finally set up shop in Ganiyari. The four men, a paediatric oncologist, an internist, a paediatric surgeon, and a microbiologist were not quite your average, run of the mill doctors. Besides distinguishing themselves academically they went a step further reflecting on medical practice and the state of health in India (natural you may think, but in fact unusual in their context) and gave up what could have been highly lucrative practices in any metropolis for a life in rural India, a place they felt ‘they were actually needed’.

JSS Village Program - Ganiyari in the lower right corner

Coincidence and possibly some foresight had it so that they each married medical professionals too. Add to this already impressive mix another internist, another paediatrician, an obstetrician-gynaecologist and an ENT surgeon. This rather opportune of combinations led them after much scouting to Ganiyari, situated in one of the poorest and underdeveloped states in India, Chhattisgarh. Here they managed to rent out an old, abandoned public utilities building and the small piece of land attached to it. After much restoration to the crumbling edifice, they set up a 15 bed ward, outpatient clinics, a delivery room, an operation theatre, and even basic laboratory services thanks to the microbiologist, who also ensured asepsis. They also had outreach clinics once a week in nearby villages. They called it Jan Swasthya Sahyog (JSS),

The Jaanchkaksh or Laboratory

loosely translated as People’s Health Collaborative. Ganiyari was close enough to a small town, Bilaspur where they were able to stay with their families and commute daily to the hospital, one or the other being on overnight call. The intention initially was to stay on the premises, but I hear the wives objected and with persuasive arguments about the children’s schooling convinced the men to hunker down in Bilaspur. 

By the time I joined them, a good 7 years later, they had expanded to a ‘theatre complex’ with two large, bright theatres, (right above which I was given a room), had x-ray and ultrasound facilities; bed numbers remained the same though patients would put their heads down wherever there was place (and you had to be careful not to trip on them when called at night), and clinics at ‘nearby villages’ had grown into a health worker program with outreach clinics as far as a 100km away, scenically situated on the top of a mountain amidst dense forest, and which was a nightmare to get to on the dirt tracks. They also had a few ‘junior doctors’ like me willing to slave away for a while early in their careers, hungry and eager to learn. And most important was a new and much improved ‘International School’ in Bilaspur for the children. JSS had grown in popularity, largely due to an archaic and nearly extinct public health system which often if not always failed to provide adequate care, but also due to the competence, range of services and high standard of care at incredibly low prices. Outpatient clinic cost Rs 7 for the first visit and Rs 5 (10 Singapore cents) for subsequent ones. Costs were kept low by meagre salaries, generic drugs, many low cost innovations (including the substitution of a junior doctor for neonatal ICU services) and some small donations. 

An 'Easy Read' thermometer for the health workers with
abnormal temperatures marked in red

My time here was to put it mildly, phenomenal. I could write pages on the medicine I learnt, the cases I saw, the real life versions of textbook medical problems that we had been lulled into believing were a thing of the past. My first ever case of exomphalos woke me up at 2:30 am. My groggy first glance almost caused me to yelp out loud as I saw this 800 g baby, barely breathing, almost as cold as ice, lying in a basket because the parents were too scared they would harm her if they tried to touch her. She had been born the night before; the parents had set out at break of dawn and travelled all day and almost all night to get here because of the miraculous doctor they had heard about (our paediatric surgeon), but she hadn’t been fed a thing. We operated, and she survived, giving me another nightmarish night as I waited and waited (and waited and waited) for the first few drops of urine to form. She was lucky; many others I saw in very similar circumstances didn’t fare so well. It was very common practice for patients to turn up at our doors this late at night. They often came from very far away, and would travel many, many kilometres through the day, a large part on foot, before they reached us in the middle of the night, giving us juniors the kind of night calls we’d never experienced as interns. 

Health Worker Pamphlet on identifying poisonous snakes in the area

I learnt a lot, to say the least. I saw all sorts of cases, connective tissue disorders, rheumatic heart diseases, valvular disease, cancers of all sorts (once again too many cervical cancers than there should have been, we diagnosed them by nose; by the smell of so badly a fungating and infected growth that they had finally been forced to seek health care. We could smell them as they sat waiting patiently on their benches, the OBGYN would simply look up, sniff, point and they would be ushered straight into the examining room ahead of everyone else), a lot of sickle cell anaemias, some thalassemias, poisoning, animal bites, the insidious nutritional anaemias, skinny diabetics (so many that I almost thought the rah rah about obesity a joke), cleft lips and palates, hernias, hydrocoeles, you name it we saw it and if I could, operated on it. 

A typical Phulwari (Day care centre) - Sarees hung from the beams served as swings by day and cradles for the little  ones to sleep in the afternoon

What left a lasting impression on me though was not as I may have implied the knowledge I acquired or the medicine I learnt, but the people I met, and the stories they told me. Why it was that the smelly woman with cervical cancer had come to us so late, why it was that the fifteen year old boy had caught falciparum malaria (the first death I ever certified) in the middle of winter and not the monsoon as was believed to be common, about the siblings with severe rickets, about families full of XDR TB. How when food was scarce and money even more so I was always given tea, lunch and biscuits in every village I visited. I loved to listen and watch as young fathers proudly held their new born daughters and told their neighbours that boys were useless these days, girls would always take care of you.

Most of the stories were sad, of a young 23 yr old woman who fell off a tree plucking mangoes for her little children and died after three days of agony, of a young farmer consuming cans of pesticide in an attempt to escape the trials of this life, of a mother insisting her dead son was still alive because when she held his hand he was still warm to the touch. Some were amusing like women who had had so many children that they often gave birth while at work in the fields or jungles, fed the child and then just carried on working brining the little tyke home at dusk. Some were ironic, like the time I was invited, big city girl that I was, to bathe in the river with the local women and then told that this was one of the last few times they would be bathing here since the government had seized the land their village had stood on for generations in the name of conservation, or of the cholera epidemic that converted our little hospital to a war zone punctuated with gallons of ORS in which we proudly claimed we had not a single fatality except for the two abrupt miscarriages. In the midst of all this strife the stoic resilience of the people never failed to amaze me, the determination that life must somehow go on, that we must continue to provide for the children we have left, the parents we owe everything to, and give them a better life than we could ever imagine. It’s these kinds of people that Philip and Mikael will meet as they travel through similar places. It’s these kinds of stories that they will hear and I hope will be able to tell, of despair, and hopelessness, of resignation and sufferance, of the depth and strength of care and love, of the undying will to keep going on. Because no matter what their story and how it ended, with a chuckle or a tear, it was worth listening to, worth retelling.

"The gladdest moments of human life"

“Of the gladdest moments in human life, me thinks, is the departure upon a distant journey into unknown lands. Shaking off with one mighty effort the fetters of Habit, the leader weight of Routine, the cloak of many Cares and the slavery of Home, one feels happier. The blood flows with the fast circulation of childhood. A journey, in fact, appeals to Imagination, to Memory, to Hope – the three sister graces of our moral being.” ~ Sir Richard Francis Burton

I first saw his portrait hanging above the entrance of the Ondaatje lecture theatre in the Royal Geographical Society Building in Kensington Gore last year.  I was there for the very rewarding London Trauma Conference but to me the building itself was reason enough to go.  This place was an Aladdin’s Cave of unpublished pictures, maps, and journals of generations of explorers.  On the walls were the names and pictures of great journeymen, the stuff of childhood heroes:  Cook, Livingstone, Falcon Scott, Shakleton, Hillary.  This one portrait seemed out of place.  The face and the style of painting was western but the setting hardly one of glorious accomplishment. The figure wore a tattered cloak similar to the ones I had seen among the beggars of Mumbai and was hunched in a corner of a dilapidated indian hovel.  His face was one that seemed to have a hard life stamped on it by a rather large boot. Slightly asymmetrical and a lower cheek bone on the left, thin, straggly black hair and a huge scar below the left eye that I learned later was from a Somali bandit’s javelin.  Most noticeable were the eyes.  Not the eyes of the down – and – out; these were fully engaged, interested, watching, wary.  So this was Richard Francis Burton.

He seemed to have lived several lives.  It was not a cushioned existence. He had been thrown out of Oxford, the army, various expeditions into India, Arabia and Africa.  He was the first westerner to see Mecca.  He spoke over twenty languages and managed to pass off as an Arab among Arabs for years, enabling him access to the lives of locals that can only come with having lived among them.  He was a prolific writer, romantic, poet, explorer and cartographer, and probable spy.  His experience among these peoples led to his publication of Arabian Nights and, later more infamously, the English translations of Perfumed Garden and the Karma Sutra.  His life seemed illustrative of Bilbo Baggins’ warning: “it’s a dangerous thing, Frodo, going out your front door. You step onto the road, and if you don’t keep your feet, there’s no knowing where you might be swept off to.”

One of the aims of the Long Ride from Singapore to Sweden (hereafter the LRSS) is to give singaporeans especially a taste of this sense of adventure.  We want as many people on board as possible to see and feel some of the things we pass through. Some of it will be breast cancer related, a lot of it will not.  But it will be an adventure – a journey of no predetermined outcomes and unknown experiences.  How to do this?  Well we’ve spoken to seasoned documentary writers from the major  television channel, who are thinking of coming on board.  It’s all about two main ingredients – the message – which is what you’re trying to convey – and the narrative – the means of keeping the story going. In our case the obvious narrative is two mad men on bikes.  And this week we’ll be having our third meeting with a prominent international foundation. They have an agenda of trying to broaden the horizons of singaporeans and also to make them realize a quality I’ve just learned about called CQ – cultural sensitivity.  Something we will have to put into practice every moment from the time we leave our own shores.  The notion that others may be given to consider adventures of their own from our little outing is actually quite exciting.

The Art of Communication

Leonie Hill No Road

Getting into a cab I say, “Leonie Hill, no road”. The cabby smiles and says, “Yes, yes, very confusing lah”. It so happens I live in a city where there is a Leonie Hill and a Leonie Hill Road. The city planners are probably still smiling at their wisdom. Anyway, having lived here for a while it has become completely natural to refer to my address as ‘no road’.

Cabbies seem know exactly what I mean and it never fails to get me back home.  This is one of many Singlish solutions to my everyday conversations. The local version of English or Singlish takes a bit getting used to since it mixes Chinese, Malay and some Tamil, preferably with a Mandarin sentence structure all combined into one. Here’s an interesting explanation of it I found on the web http://www.youtube.com/watch?v=jG5Gr-rjEWY&feature=related. As the video says Singlish has become the topic of many an argument in this small island nation. Some see it as an impediment to progress and others hold onto the vernacular as a matter of national pride. I, personally, have come to love Singlish for the purely Singaporean uniqueness about it. It has, thanks to human stubbornness, resiliently outlived the government’s every attempt to eradicate it and it is to me that which makes Singaporeans and Singapore less of a foreign country and rather more warm and quirky, and much more to my liking. 

Having lived and worked in quite a few countries I have come to appreciate the need to adapt expressions to local context, and the need to communicate using whatever means available as much as they might stretch conventional literary boundaries.

My first move from Sweden was to the US in the mid 80’s. After high school I moved to California for undergraduate studies. Four years in San Francisco were fantastic: the city, the people, culture, closeness to both sea and mountains made me feel right at home. Leaving Sweden with reasonable spoken English skills and an actual dictionary in English slang I thought I was well prepared. Once I got there I kept getting asked by all those I walked by, “what’s up?” This now ubiquitous phrase didn’t make any sense to me and I am a bit embarrassed to say, yes, I did look up a few times in the beginning. Of course I quickly picked up on the fact that this was the US version of asking about the weather; a general greeting to acknowledge you with little deeper meaning. I now ask my teenage children with absolute equanimity as they walk in the door, “What’s up?” (falling ever so short of appending “Dude” at the end).

Are you dizzy, madam?

After my undergraduate years in San Francisco I moved back to Stockholm to study medicine. Starting out as an intern with limited pay, small children and a new house I decided to do a bit of moonlighting as a general practitioner in the north of Norway. Norway and Sweden are in many ways similar in terms of culture, people and language as well as recognizing each others medical licenses. Norway is more or less just as large a country as Sweden but with only half the population resulting in a very dispersed rural environment especially up north. I found a six week job in Hammerfest, the world’s northernmost town with a population of 10,000 people and boasting one forest of 10 trees. This is basically tundra region right on the shores of the Barents Sea.

Medical practice in Norwegian did pose some difficulties now and then but on average I felt I was doing fine. Also my wife being Norwegian, I did have some practice over the years. For example there seemed to be some confusion with patients who had neurological or cardiovascular symptoms every time I asked them if they felt dizzy. But I soon got used to the blank looks, attributed it to my strange accent and since they did eventually answer me, moved on with my examination. A few months later, back in Stockholm I mentioned to my father-in-law the odd looks I received when taking history about being dizzy. He just looked at me and cracked up laughing, tears running down his face. What did I say?? I asked. Well, he said, ‘dizzy’ (the Swedish word I used) in Norwegian means horny. I still blush when I think of all the elderly ladies who came to see me for vertigo whom I casually asked if they were horny. No, I did not have my license revoked and surprisingly no major complaints.

35 drains to go

Presently working as a clinician here in Singapore, I am a bit hampered by not being able to speak Mandarin or Malay. However I do have wonderful support from our nurses who help out whenever patients are not able to communicate in English. Sometime ago I was counseling a patient, Mdm C, for a complicated procedure that would involve 2 other surgeons all performing different tasks at the same time. I wanted to make sure Mdm C was clear on what was planned and also what the postoperative recovery would be like since it involved among other things, tending to several plastic tubes or drains to remove excess fluid from the surgical site. The day before the operation, our nurse contacted me to say that Mdm C is well prepared but that the patient is a little concerned about the 35 drains she will have to look after. Thirty five!?! I ask. Yes, thirty five, says the nurse sounding a bit confused herself. I back track and go through the information I gave her and tell the nurse that I did mention drains but only 3 to 5. Needless to say I saw a big sigh of relief when Mdm C’s misunderstanding was corrected. The procedure went well and all (only 3) drains were removed with no problems.

Multi-cutural Medicine, as I have taught myself to practice does come with its fair share of lighter moments. Singapore, I admit has given me more than just the fair share both in and outside the hospital as I quickly realized, without Singlish, cannot lah.

Rules to Ride by

“You see things vacationing on a motorcycle in a way that is completely different from any other.  In a car you’re always in a compartment, and because you’re used to it you don’t realize that through a car window everything you see is just more TV. You’re a passive observer and it is all moving by you boringly in a frame.

On a cycle that frame is gone. You’re completely in contact with it all. You’re in the scene, not just watching it anymore, and the sense of presence is overwhelming. That concrete whizzing by five inches below your foot is the real thing, the same stuff you walk on, it’s right there, so blurred you can’t focus on it, yet you can put your foot down and touch it anytime, and the whole thing, the whole experience, is never removed from the immediate consciousness.”

-       Robert Pirsig, “Zen and the Art of Motorcycle Maintenance pp14”

Couldn’t have put it better than Mr Pirsig has.  In my mind what distinguishes an overland bike ride from any other means of travel is its intimacy.  The lack of any shell besides the clothes you have on to shield you from the elements puts you in intimate contact with the surroundings.  If it rains you get wet, in the tropical sun you burn, and when that 6 tonne bus overtakes you at 100 miles an hour you literally counter steer to not get sucked in to his backwash. Get caught in the rain and remember you are working at a 60 mile an hour wind chill factor all the time and the only way not to end up cramped frigid is to be on Mike’s BMW with its fancy wind deflectors.

Riding is also immediate in that what can happen can happen very quickly. Up the Malaysian peninsula the picture can be deadly monotonous on these well made, perfectly surfaced highways.  The problem is that such road conditions are not conducive to riding slower.  A proton saga pulling out without checking, a cow pulling out without checking, a sudden pothole – and innumerable other unexpected things can change the situation immediately.

Be sure of this – its not the proton, or the cow or the pothole that blottos the rider. It’s his reaction.  What appears to distinguish the good rider is that he or she manages to make the correct quick response to the change in the situation while keeping form. No mad grab for the front brake, no full lock change in direction, no wandering off at high speed off the road map. Staying on the bike is a matter of the rapid yet calm response. 

In view of the number of things that can go wrong in our little expedition, I thought of putting down on paper some “Rules to Ride By” in the hope that clear minded consistency will minimize the need for rapid calm responses.  We haven't had a good start. We’ve already broken the first most important rule that all experienced riders seem to agree on –

1)  BRING THE SAME MODEL BIKE.  

There are lots of reasons for this – same performance means more likely to stay together, parts interchangeability means less parts to bring, having both bikes from Suzuki would have made sponsorship a cinch.  As it is Mike has a BMW GSA1200 and I have a Suzuki Vstrom 1000.  They have similar weight and power and according to the wife they’re both just as ugly but that’s about where the similarities end.  So having done with that let’s hope we can keep the rest of the rules

2)  NO RIDING AT NIGHT.  

We took our time coming back in the last leg of this trip and eventually left Segamat just about 1700 to get home. It stormed and on unlit trunk roads with slick slippery oil coated tarmac and the wife on the back rule #2 has been made. Its hard to see where the road ends and where wildlife begins, and hard to see the dividing line from traffic in the opposite direction.  The wind chill was freezing and it did not help to realize this time there was no sunshine to look forward to that could dry us out. 

3) ALL RIDING DAYS ARE EARLY DAYS.

The Long Ride has been organized so that we cover about five riding days a week, usually with at the most two days’ stop except in some exceptional places like Darjeeling, Agra, Kashgar or Samarkand.  The truth is that there will be some places that are very difficult to leave at any time of the day.  The Old Smokehouse in Camerons is one of those places, but it’ll probably always be just a few hours away, unlike some of the places we’ll go to where there is just no likelihood that we will ever see again.

No matter how hard it seems we should get on the road as soon as daylight permits and get on our way.  Late starts tend to get us later and later, riders are less alert after lunchtime, and too much coffee tends to lead to the quick but un – calm response.  Be done with most of the day’s riding by lunch and start looking for a place to hunker down.

4) BE OPEN TO LOCAL KNOWLEDGE

George is the gardener who is partly responsible for the very gardens that made it a difficult place to leave!  We should allow for the serendipitous moment that is the distinctive of all adventures.

While most dates and distances have been studied as part of trip preparations, they should not be fully locked in.  we had initially intended to take the Gua Musang Road from Camerons to the Karak highway and then to Kuantan, but a late start (see rule #3) meant we needed to look for a shorter way to the east coast.  A quick chat and our very helpful hotel staff recommend a newly minted road from Ringlet direct to Kuala Lipis, cutting the distance by about half. (Thank you George and Vivien from the Smokehouse!)