Catching up...varanasi

After agra we got on another train to varanasi...which turned into 20hrs on the train! ! :p but we had a lovely quiet guest houae booked with a great little courtyard garden space. It's amazing how a little green can make such a huge difference when you dont have it for so long.
Varanasi is a smallish city along the banks of the holy river Ganga.  Im not sure how many people know already, but the Ganga has actually been proven to have a microbial uniqueness with higher than normal oxygen levels which actually maintains a "cleanliness" to it....despite the obvious uncleaniness it is subjected to every day. Not only is the water severely littered with the usual garbage, but it is also the place to bathe and perform morning puja, the final resting place of the cremated bodies, the bath for the cows, a toilet, and a swimming pool. Truthfully, its not the most inviting water, despite knowing the science.
However.... the morning and evening pujas to shiva (creator god) are colourful and somewhat inspiring. The candles and flowers in the water are even pretty. I tried to imagine what the opposite banks would be like during the MASSIVE holy festival, where tens of thousands of pilgrims cram into a very small looking place for a chance to dunk in the river. But I know my imagination doesn't even come close.
We took both a sunrise and evening boat ride along the river...watching the activities along the ghats.
This is a city of steps. The whole river front is one set of stairs after another (ghats). We spent hours wandering up and down the ghats...watching children play cricket or badminton, holy men in bright orange wraps heading to or from temples (of which there are tons as well), laundry being washed and laid out to dry, and people just plain loitering.
Then there are the burning ghats. The place where a persons body is brought to the river, placed on a wood pyre and after holy ceremony, is burned. The ashes are then carried down to the water and washed into the river. Cremation is of course a very natural form of body disposal. And I have to say im glad most indians dont waste precious amounts of land in the overcrowded country. One of my first observations however, was how matter of fact the final process is/was. There was a part of me that like that. The person is no longer there and they are disposing of the earthly body. But there didnt seem to be much in the way of emotion....either celebrating or grieving. That makes me think that sort of thing has already happened elsewhere. There were also never any women in these families. It is something I need to learn more about because we only saw the outside. There were a few graphic moments here and in the river that took a little processing...but im not going into details here. If you're interested in the stories please just let me know and I would be happy to discuss further.

This city by far had the most cow poop in the steets out of any one we were in, and it got old fast to constantly be sidestepping it. (The rain one day didnt help either)
The one contradiction I couldn't get my head around was for such a holy city and reverence for the river etc...there seemed to be zero attempt at keeping the place remotely clean.
Which is so sad to me because it is such a cool little place. It really was an unforgettable experience.....

Agra photos 2

Agra photos

Agra

After a fairly uneventful flight and a train ride that was actually on time, we arrived in agra. Home of the famour Taj Mahal.  Our guest house had a distant view of it from the rooftop, although the smog and haze blurred the lines of the beautiful white building. That night and into the morning we were welcomed with thunderstorms and rain. Thankfully it let off by mid morning and we were able to spend the day wandering UNESCO sites.
Turns out the taj is closed on fridays but we saw the outside of it from just about every angle. Including a lovely garden on the opposite side of the river that was built in 1520 with the intention of being the site for the black taj...which never happened.
We wandered thru the agra fort which has seen many a battle over its control. There were grand marble buildings, sweeping courtyards, hidden stairs, and ornately carved archways.

The town itself is tired and filthy (despite actually spotting a recycling bin program). There are all kinds of rules and government signs to appear like they are trying to clean up these cities but practice and reality are very different. (In fact the hospital in Hyderabad didnt even have an incinerator for bio waste.)

However, our guesthouse was pleasant and we enjoyed our stay.

So long Hyderabad

We are saying goodbye to Hyderabad tomorrow. This is an insanely busy, crowded, loud city with some cool people who work their little butts off to make it a better place.

We played "holi" festival of colours with the staff one morning, caking everyone in powdered colours. (Some of which didn't come off rosemary' s face for about 3 days! !) This is now my favourite festival for obvious reasons.

We visited the golconda fort amd tombs. (Which of course we paid 10 times the amount...just for being a foreigner) Large beautiful mausoleums to sit on muslim graves and ancient walled forts that have seen many battles over its control.

We saw a huge white marble temple and many brightly coloured temples scattered all over the city. My favourite is ganesh who gives good karma to new beginnings.  (Again, for obvious reasons)

We wondered thru some of the parks ....if we could ever find the entrance. And of course we would be gawked at and even leered at, so never really stayed long.

But most of all we enjoyed working with this team. Last week I taught several sessions of palliative symptom management to a new class taking the one month palliative course. Rosemary cleaned and organized/inventoried the home care vans after we bought them some drawers etc. We created symptom management protocols, new assessment forms and a new protocol for sharps disposal (which was non existent).

And overall, we are astounded at the care, compassion and pure will this staff has to do this job! Well done everyone! I am looking forward to coming back!

The work.

We have been working here for about 2 weeks now...mostly with the home care teams. They have 3 teams that are based out of the MNJ cancer hospital, with 3 vans. The vans are driven by a driver, and the team consists of a social worker and a nurse (ideally).
Each day the social worker does the case management and decides who needs to be seen that day based on priority or who phoned the night before. The driver helps decide according to geographic area. This city is huge and CROWDED. These teams cover anyone within 40kms of the hospital, and 30kms in this city will take 1-1.5hrs to drive! Because of this, seeing 3-4 patients is a full day often. Sometimes only 2 and sometimes if they're close...5.
Last year they had a total of about 90 patients for 3 teams. They now have 120. And since he conference and the advertising that came with it, there has been a HUGE influx of new referrals that want morphine for pain control. You might think this is drug seeking but its not. Most of these patients have cancer and cannot get morphine anywhere else. Pharmacies do not carry any opioid and they must come to MNJ in order to get any. (Which has only been avail for 7-8yrs now). Doctors are scared or don't have the knowledge to order morphine (indian laws could land you in jail on the suspicion of misuse...without evidence). The cancers we see are often late stage and obviously painful.

This has now led to these teams and the palliative clinic and the hospice to be overwhelmed and inundated with patients. But to hear where they came  from 8yrs ago is amazing. The growth has been exponential.

The teams are very knowledgeable of palliative symptom management and the care for these people is astounding.  They work 6 days a week from 0930-1730 (ish...in true indian form) often working well past that. Sunday is their only day off (except holidays) and they are paid a modest monthly salary. (No overtime for those late days). On top of that the counselor and nurse carry an after hours phone for 15 days each and answer phone calls 24 hrs a day. So even if they get called during the night, they come to work in the am. There are no evening or night visits however....as women are not safe out after dark.

The nurses will do just about anything in the homes from injections to ascities taps. The counselors do amazing work with pyschosocial issues as well as communicating medications and procedures and end of life processes. (They are incredible people). One cultural issue that I am having trouble with is that most patients are not told their diagnosis let alone prognosis! The norm seems to be all information is communicated to a family member.  Therefore, the team must ask/seek permission from the family before discussing this with the patient. And if the family says no, the team (including doctor) must find ways to support the patient without saying anything about the real problem! This has made me so grateful for our culture of autonomy as being paramount.

The nice part is that if a family come to MNJ for morphine and cant afford any medicine, they can get it for free. If the family have money, they will pay for their medicine. The teams are also carrying small amounts of medications that they can give inital doses to the patient/family until they can get to the hospital to pick up more.

In India, chewing tobacco and/or beetlenut is a common practice, and we see a lot of head and neck cancers, with wounds like we rarely see in Canada.  The other problem is that most people present for diagnosis very late in the disease process and often have little chance of cure. The team does a lot of teaching of proper wound care but see a lot of problems like infections and maggots related to poor care and poor living conditions. Many people we see live in very simple and poor conditions with little to no education. It proves difficult for teaching families and seeing compliance with care or med administration.  And even with good teaching, access to medications and home support, we see patients in pain, not receiving good care. These teams find this very distressing and disheartening.  And with the huge growing numbers of patients, they also feel spread very thin.

We have tried to support the teams with education, encouragement, friendship, action, and supplies to try to make work more efficient. A major barrier is lack of resources. The hospital does not even have a proper incinerator to safely dispose of waste (aka. Needles and sharps etc). So the staff had let that compliance slide because there was no facility support. We are trying (as a whole) to be creative in finding solutions to solve some of these basic problems that are within the reality of practice here. For example: our best practice is to never recap a needle to avoid risk of sticks by the needle. However, here, a lot of garbage ends up being rummaged through, often by children. (Cause the hospital doesn't have proper disposal) so the team decided to use 'safer' recapping so that at least the needles that end up in the garbage would be capped and not stick someone! (Thankfully the hospice now pays for safe and proper disposal of wastes. So at least the palliative team is doing it right!)

Its humbling to work with these amazing people and inspiring to brainstorm ways to improve, build, support. This entire program runs on an NGO support because the government doesn't see palliative care as part of basic health care services.
Huge shout out to the Pain relief and Palliative care Society  (www.palliativecarepartners.in)
And Two Worlds Cancer Collaboration (www.twoworldscancer.ca)

Please support them if you feel so moved to do so.

The life....

So yesterday we were invited to a college's house "for a small dinner". So after a long day at work, we grab an autorickshaw, and head to her house.
[Side note: there are no actual addresses around here.... a few streets have names but houses are tucked back into mazes or lanes and alleys with no names. So addresses literally have landmarks such as "across from the sai bubba temple". So we had to get off at the bus stand and wait for her to come and lead us to her house. ]

We arrive at her house, being introduced to all her siblings and mom and their children...had a cup of chai and were entertained by the children with song and dance.
Then we were told to go upstairs to the rooftop where we walked straight into a home church service...in Telugu.  Thankfully the brother who was preaching, only put the spotlight on us for a few mins. After the service we were ushered downstairs again to eat with the children, while the adults all sat kn the rooftop and ate. Huh.
Then as we were leaving to find another auto (which we told our college about 4 times).... there were two young men with motorcycles that she told us to go with. We thought they were just taking us to the main street to find an auto, but nope.....they were driving us all the way back to the hotel. So we got the authentic indian experince of riding on the back of a motorcycle, weaving through crazy night time traffic. I enjoyed myself. ...rosa was hanging on for dear life, but was a good sport about it! Hah!

Ps: yesterday I saw a sign on the highway that stated Hyderabad was the worlds #2 tourist place. Votes?

Pps: to add to my previous post....
I like eating with my hand.
I REALLY REALLY dont like all the garbage. This is a serious problem in so many countries I visit .... im starting to feel a serious need to change things. 

The good, the bad and the funny

I'm starting to see a few sides to India and naturally, there are things I like and don't like. And there are the things I find hilarious!

I love the tiny cups of piping hot chai. I love the sparkling bright colours everywhere. I love the head waggle (and im getting pretty good at it!). I have even come to love the conversation of horns in the street. If you really listen, you can hear what they're saying to each other. "Im right here" - "excuse me, I'd like to pass" - "GET OUT OF THE WAY! !!" - "would you like a taxi? " - "move over!" .....
I love biriyani rice and palak paneer.

I don't much like the leering stares, that swivel heads 360 degrees as they stumble into traffic,  but if its purely curiosity, I've started waving and saying hello. That usually makes it stop. ;) I dont much like the constant and utter chaos in the streets All. Day. Long....but again...I've come to sort of enjoy the ebb and flow and pecking order that are the streets, and have gotten pretty good at weaving through it all too! I don't much like that there are indian prices...and then there are foreign prices.

And then there are things that crack me up!  Like an auto rickshaw full of coconuts, or two camels being walked across a bridge. Or a cow dressed up with a floral halo being walked thru busy traffic on a main st in mumbai. Or a family of five on a motorcycle; toddler usually fast asleep on the gas tank, dad driving, kid sandwiched between dad and mom who is riding side saddle holding and infant. A man reading the newspaper on the back of a motorcycle.  A man carrying a dresser on a motorcycle.  Carrying just about anything or everything frankly. Like a huge bunch of balloons or a huge piece of glass.

This is a land of contradictions.  Of tastes and smells and sounds and colours that all delight and don't.  But all in all...I think we're getting along pretty good so far.

Conference

Our first weekend in Hyderabad was spent attending the International Indian Palliative care Conference. We spent 3 days meeting leaders in palliative care from all over the world, working so hard to bring good palliative care to everyone. The theme was innovate, integrate, and influence. We heard about a lot of new studies, both in evidence for new practice and in where and why the palliative care is most needed. One of the big focuses this year was on new indian legislation, improving the access to opioids (which at this point is mainly morphine). There is still a long way to go and a lot of people fighting for the human right to access of palliative care and pain control. I heard about about pediatric palliative care and its limitations. And why we need early screening and intervention ; cultural barriers here in india . We heard about alternative therapies like yoga and blowing bubbles ;) how to incorporate into critical care and emergency medicine; support for caregivers; symptom management ideas; spirituality(which is hugely important here); palliative care in non malignant diseases....
All in all, it was an excellent gathering of some of the top people in palliative care around the world with poignant things to say, and the most inspiring women!!! A surprising amount of female doctors and other inspiring women making a huge difference in this world!
I feel honoured to have met so many amazing people.