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2012 Benefit Dinner

We are very excited to announce that Road to Care will be hosting our first ever Benefit Dinner.  This dinner will be held during the 2012 CARO (Canadian Association of Radiation Oncology) annual meeting in Ottawa.  If you are planning on attending this year’s conference we welcome you to register; the details are provided below.  Hope to see you there!

2012 Road to Care Charity Dinner

Theme: “Improving access to radiotherapy in low-income countries”

When: September 13, 8:30pm (After the CARO Welcome Reception)

WhereSidedoor Restaurant – Contemporary Kitchen and Bar

20 York Street, Byward Market (5 minute walk from the Ottawa Convention Centre)

What’s for dinner: Gourmet meal designed by Top Chef Canada 2012 Finalist, Jonathan Korecki

Cost: No set fee! All donations will receive a tax receipt.

To register: Please visit our event page. Reservations are limited to the first 80 people.

Why we are having this event: Every $370 raised enables one patient with cervical cancer to access curative radiotherapy treatment. Your generous support will go directly towards covering the cost of transportation, accommodations, meals, investigations and treatment for patients who would otherwise be unable to access treatment. To contribute, please donate through Canada Helps. Tax receipts will be provided for all donations (Suggested min. donation of $75 for dinner attendance).

 Event sponsors:  Janssen, Amgen, and AstraZeneca

 

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Jen and Joda are in Uganda, March 15 – April 10, 2011

Jen and Joda are in Uganda, March 15 – April 10, 2011

Road to Care paved from Hoima: April 13, 2011. An email from Martin, nurse at Little Hospice Hoima

“Hi Dr. Joda! It’s a day of smiles for cancer of the cervix patients from Hoima. On Wednesday, April 13, 2011, pioneers of the Road to Care program boarded a Bus to Mulago, Kampala to benefit from Radiotherapy Jane, Juliet and their two caregivers have already gone and another two are likely to join them before this week ends as they are still organizing themselves. Thank you Dr. Joda on behalf of the patients. God bless you! we shall keep on updating you. (Attached are their photos) – Martin

Jane, Juliet and caregivers. Prepared for the journey ahead.
Patients provide their signature or thumbprint each time funds are given.
Patients are provided money for transportation, accommodations and weekly expenses.
“Life is a journey, not a destination. There are no mistakes, just chances we’ve taken. Lay down your regrets, ’cause all we have is now.” – India Arie

We’re Half way there: April 11, 2011. Amsterdam, Netherlands.

In our 11 hour stopover in the Netherlands, we make a quick trip to the Keukenhof garden, then spent the rest of the day perusing the cobblestone streets of Amsterdam.

On the way home.

It has been amazing to hear from our patients speak of the incredible care they have received through the work of our partners in Uganda – the work of Hospice, and the love of Josephine (Radiotherapy/Palliative care nurse at Mulago). A special acknowledgement goes out to all nurses and clinical officers that have taken care of Road to Care patients from beginning till now.

What a month! We have doubled our referral encatchment area by expanded Road to Care to support patients from Hoima. The first four patients from Hoima will make the journey to the capital city next week. There are now 20 new beds in the radiotherapy hostel thanks to the phenomenal response of our donors; this will ensure that these new patients have a comfortable place to rest during the course of their treatment. We met with 16 Road to Care patients to hear their stories; from their enlightening recommendations, we put mosquito nets above each hostel bed and adjusted weekly disbursements to offset rising food prices.

Thank you all for following us on this blog and for keeping us in your thoughts. Now that Road to Care is supporting twice as many patients, there is now twice the opportunity to lend your support! Every $300 raised can enable one patient get the medical treatment she needs.

From the healthcare team at Hospice, “Thank you for helping our patients!”

The incredible Hospice Mbarara Team

Hope in Hoima: April 8, 2011. Hoima, Uganda

The smell of roast pork and beer wafted through the air, permeated by the faint chemical odour of paraffin wax and formalin. We entered the narrow corridor of the medical laboratory, itself difficult to find, disguised in a square of watering holes and pork joints frequented by huddled businessmen, here for a Friday drink.

We entered the narrow corridor, and placed the box of samples down on the bench. “Hoima?! We have never had samples from Hoima!” exclaimed the lab technician, to which I replied, “From now on, you can expect to receive many more.” I dropped off the four glass containers of formalin carrying cervix biopsies and began writing this long overdue blog entry.

Dropping off specimens at the lab.

Throughout our evaluations, the Hospice nurses expressed a desire for us to extend our program to Hoima, a small rural district in the north-west with very little infrastructure. I phoned the one and only gynecologist in the district, and caught her in the middle of an operation. She was very matter-of-fact and agreed to meet us the next day. Off went to Hoima.

“Dr. Kassujja, how many patients do you have a year with stage II, or early-on stage III  cervical cancer? Two or three?” I asked.

She responded, “I performed 4 biopsies under anesthesia for Ca Cervix this morning. Would you like to meet these patients?”

She led me to the gyne ward and introduced me to Beatrice, Jane, Juliet and Proscovia. They were still drowsy from the anesthetic. I won’t go into the medical details, suffice to say that they all had potentially curable cervical cancer. Not one of these four patients could afford to get radiotherapy.

I was immobilized by the thought of the natural history of their disease were they to be left untreated; the gnawing pain of uncontrolled cancer growth, the ostracizing smell of necrotic tumor, the certainty of death.

From our conversations with previous Road to Care patients, we realized a key barrier was unfamiliarity with the capital city. Many said “I have never been to Kampala, how can I go there?” To address this barrier, we created two photobook counseling aids for Little Hospice Hoima, taught the nurses how to use the materials. Here is Nurse Sarah teaching the first 4 Road to Care patients from Hoima.

Hope in Hoima: The first 4 patients.

Hoima hospital does not have a pathology department, so biopsy specimens have to be taken to the capital city. That’s how I find myself here, dropping off these 4 glass bottles, admist the aroma of pork, beer, wax and formalin.

Beds, Beds, Beds: A Success! April 4th.

Thank you to all who donated funds to provide a bed for the Radiotherapy Hostel.

Your generosity has been astounding! Within a week of our appeal to purchase beds for cancer patients, we had raised enough to purchase all fourteen beds required. Based on the overwhelming generosity of the people who offered funds, we will also be able to replace and repair about half a dozen broken beds, and provide good quality hospital mattresses for each.

We have placed our order with a reputable distributor; the beds will be delivered to the Radiotherapy hostel next week.

Our meetings with patients—patients currently receiving treatment, and patients who have already completed their treatment—have been instructive, and most of all, inspiring. The ladies who met together during the Road to Care patient evaluations identified several ways to improve the program and the space at the Radiotherapy Hostel.

Past Patients of Road to Care Gather, Share Experiences

Based on their feedback, we will also provide treated mosquito nets to prevent malaria, and also, account for the rise in food prices and fuel. While a $2 CAD increase in weekly costs may be little by Canadian standards to some, this amounts to a substantial hike. This is particularly true for the majority of the women, who survive on subsistence farming and are unable to farm or earn an income during the 8 weeks of their treatment in the capital city. We will also be looking at developing a partnership with a reputable education-based NGO to address the issue of childrens’ school fees and income generation during the months-long period in which mothers, going to seek medical treatment, lack wages.

Thank you so much for showing that you care. Admittedly, the issues are complex. We’ve been fortunate to have the well-developed partnerships here on the ground that have allowed us to provide specific assistance in ways that aim to be the most relevant. Beds are an important beginning. Thank You, from the bottom of our hearts. Sleep well!

Teddy Bears and Palliative Care: March 31st, 2011

“There are no keys, for there are no doors. Here it is—Life—not locked away from us, but all around us.” –Kahlil Gibran.

I look over, and hear Dr. Rachel and nurse Honest fumbling with a giant key ring, trying key after key to open a locked door. Keys here are almost medieval in their make, heavy things with undifferentiated shapes. Dr. Rachel is a slender blonde from the UK, here to work at Hospice for a year. She says, “there is a little girl, who is about to die. She needs a toy to go home with.” The lock clicks, and the door opens a room full of donated children’s toys. I enter, and help the two rummage through a box of plastic things, erasers, rubber balls-when I spy a small plush elephant sitting atop the armoire. “This will be perfect,” Rachel says. Honest agrees. I inquire tentatively, “Is it the little girl who was here in the waiting room?”

Rachel continues her rummaging, and replies, nonplussed, “she is four years old. She has had a kidney removed; now the tumour is back, in her other kidney.”

We proceed with the task at hand. We look for crayons; check. “We need paper, where is there a colouring book? How about bubbles? If I were bubbles, where would I be?” It is noted that this little girl may be too weak to blow bubbles. I leave the room, confused and thinking about what it means to have to choose toys for a small girl who will die.

Unlike the dedicated team of Hospice staff, unlike the overseas volunteer physicians who spend day after day here, I am unable to even comprehend the reality of caring for palliative patients. Joda and I have brought a few hand-knitted toys from the Hamilton Farmers’ Market, made by Betty, of Fleetwood Farms. I shall make sure to bring these to Hospice, tomorrow, I say. Rachel and Honest emerge proudly from the room, just the right toys picked out, in love, for this little girl under their care. Palliative care includes teddy bears.

Watch a video of our encounters with patients on Youtube!

Click here to view.

“Life is a Journey, Not a Destination…But sometimes we start from such different places.” March 30, 2011.

Names on a sheet of paper. Christine, Enid, Jane, several Alices, and even a Jennifer.

I cut a small white rose from the bush by the entrance of the Hospice. It was already bruised on its stem, I had noted, so I removed it where it was still green, and plopped it as elegantly as possible in a metal cup.

The sense of wanting to prepare the room just the right way, wanting to welcome and include the women who would make the journey to share their experiences with cancer, with Road to Care, occupied me; would they wish to sit on floor mats? Around a table on chairs?

As we readied the room to greet the first of the Road to Care patients, it occurred to me that I was frightened. What would they think of us? Would I be able to convey my sense of care? Would I be able to care enough? How would difference come between us, and how might I honour such difference?

As the women trickled in, we made introductions past lost language, through greetings: Joda and I managed to convey our greetings, our appreciation for their journey travelled. One woman, Kefeeza, indicated the sky, and said, “Canada.” She thanked me for making the journey to visit her.

More patients arrived, and, abandoning the circle of chairs, we instead prepared a corner in the room with woven mats, some quilted mattresses, and some chairs- some of these women had sojourned several hours by foot, by public bus since early morning to meet us at Hospice, and this trip from afar had been wearing.

As we waited for others to show up, Joda did the Asian tech geek thing and took out his Macbook air to show the facilitated discussion and patient testimonies taken last week in the Radiotherapy hostel of the capital city—a place with which these ladies were familiar through their own months-long process of medical treatment. Our group reached a formidable number of 10 women, 10 survivors, by the time we began.

Patients sharing their stories with us.

JB Ndinawe Kateera, Hospice clinical officer and one of our key contacts in the RTC process, facilitated the discussion in the local language. He explained that their own storytelling would be videotaped and photographed and used as teaching aids for other patients, and that we would share about the Road to Care program and its patients in Canada.

Over cups of tea, the women took turns telling their stories. In order to seek treatment in the capital city, all had left behind families, and many placed their children in the care of extended families, neighbours, or, as they described it, “persons of goodwill.” The situation of absent husbands was all too common. Even in Canada, a large proportion of partners leave women within a few years after cervical cancer treatment.  Nonetheless, these women also told stories of resourcefulness, of organizing their estates and assets, of elaborate networks amongst family and friends, taking care of childrens’ school fees and well-being as best their could to prepare for the journey to Kampala. When asked whether these things should worry potential patients, the response was a resounding and unified chorus of “No!”—that other women faced with such decision-making should seek treatment for their health in spite of the complications arising in family contexts.

Following our hours of discussion, we ate lunch together. A couple of patients were unwell, and could not stomach the rich meal of meat, matoke, beans, millet, rice, and greens. The work of Hospice is difficult, because not everyone will get better, but the team makes a difference in engaging with those who are suffering, relieving physical pain, but also working to help patients and families through the process of illness. Most of these women arrive at hospice, resigned to the fact that “for Ugandans, when you find out you have cancer, you dig your grave and wait.” And yet the Hospice team has been able to coordinate effectively to curative-intent treatment through Road to Care. Brava, to everyone involved. To Joda, for his tireless work and vision.

I return to the idea that we care because caring, and being cared for, make us fully human. We live with one another, learning to accept our frailties, trying our best to lessen suffering, and bring hope and healing, whatever that might mean, to the world in which we live. And that goes for not only the “givers,” including the dedicated Hospice team, but also to these patients, ones who live courageously for others, to live in order that they may care for generations in their own circle of care. In many ways, each one of these women can teach us what strength, resourcefulness, generosity, and hospitality mean. Their stories call us to attend to how a better world would divide scare resources to care for orphans and kin alike, through the sharing of all that we have. I am thankful to all of these women for sharing their time, and the lessons of their respective journeys with cancer, with us.

Two Jennifers.

In Mbarara! March 28, 2011.

Yesterday, Joda and I travelled back to Mbarara; the trip held a few surprises. First of all, the formerly pothole ridden path had been newly paved. Despite the smooth asphalt pavement, traffic flows exiting the capital city are still as killer as any; thick black smog, transport trucks, untamed boda-boda drivers zipping in and out in dizzying patterns. Once we exited into the countryside, speeding by car, and looking at the hills beyond, we were reminded of the 707 kms travelled on our trusty tandem last summer.

The road is still long…

On the Road to Mbarara: Back to Where it All Began – March 27, 2011.

Last night just before sunset, Joda and I considered the journey before us, back to Mbarara. Dusk had brought a myriad of small, elegant winged insects, with bodies like dragonflies, and wings like exclamation marks topped with quotation marks. They were more interested in flitting about the cooling grass and paved sidewalk before us, than being photographed. Wandering verbet monkeys, on the other hand, were more than delighted to show off their photogenicity. We paused to think about the pace of our week-it has been a long one, full of learning.

Verbet Monkeys are the only monkeys found outside of forested areas.

We met early in the morning with nurse Martha Rabwoni, director of Mobile Hospice Mbarara. Martha was the second nurse in Hospice in Kampala, who began her work alongside Dr. Merriman in 1994, when Hospice was still a one-bedroom operation. She, together with Dr. Anne and another nurse, understood the difference that palliative care could make for dying patients.  Aside from coordination the Health Services at MHM, and a full clinical load of patients daily, Martha uses her influence in ingenious ways; for example, her connections with the bus drivers who take the Mbarara-Kampala route has seen her sending patient supplies, on the long road, as a makeshift courier service to help patients in need. (True to her Health Services coordination job title, this process is complete with a driver ID, bus ID, driver mobile number, and a small incentive, and a scheduled pick-up person at the other end).

Martha; one of the most dedicated, loving and compassionate persons we know.

Martha enthusiastically lets us know that the Road to Care program has made a difference to patients in Mbarara. The patients who have returned from receiving their medical treatment phone her to offer their thanks. The treatment of their symptoms, including severe pain, bleeding and discharge has allowed them to return to their families, and resume a quality of life. We will have the chance to speak with these women on Tuesday, when they come to visit Hospice for a monthly follow-up.

Urgent appeal for beds: March 25, 2011 – Radiotherapy Hostel.

There are 14 beds lacking at the Radiotherapy hostel at the moment. Equipped with 16 rooms, it should have a capacity of 48 people in total. The gynecological ward currently has exactly 14 women sleeping on the floors, discharged as outpatients, who are receiving radiotherapy for cervical cancer. These patients survive on the bowl of thin porridge offered daily by the hospital, and sleep on the floors at night with no attendant nursing care.

Helen sleeps on the hospital floor each night.

Click here for full news story.

We are trying to fundraise $1820 to purchase these beds by Tuesday at the latest. If you feel moved to help these women, please do consider making a donation to RTC for the bed fund. Every $130 will go directly towards providing a patient bed for a woman with the potential of being cured, but who lacks shelter and basic necessities. All donations over $20 will be issued a tax receipt. Feel free to contact Joda or myself via email if you have any questions. Peace.

Road to Care Comes Full Circle: March 24, 2011 – Radiotherapy Hostel, Mulago Hospital.

Gratitude undeserved, but received anyways.

Overflowing gratitude greeted Joda and I as we tentatively entered the patient room in the Radiotherapy hostel. Half a dozen women greeted us, receiving us with smiles and hands clasped in welcome.

(Right) Road to Care patient, (Left) Patient’s caregiver

Charlotte, a Hospice nurse also fluent in Ankole, masterfully assessed the situation. Advising against our idea to arrive, bearing a crate of soda pop, she advised us to go empty handed, to receive their greetings, and following this, to call someone from the shop down the road to fetch the drinks for us to share.  This show of impartiality, of being received as guests, was an important lesson; we are not received based on what we offer, but on the conditions of those who choose to offer hospitality to guests who arrive empty-handed.

Road to Care patients in a discussion

Together, seated facing one another on the floor, we spoke together, gestures, and smiles punctuating Charlotte’s adept translations. She explained that Joda and I were part of the group who had helped them seek curative treatment, and that we wanted to meet those who were being supported. I suppose this was a nicer way of putting ‘participatory patient evaluation.’ Each of the women offered both hands in welcome to Joda and I; their warm greetings were a tangible outpouring of human connection. Through our hours together, we heard stories of how each patient had come to hear of the Road to Care program, of travels to the unfamiliar capital city, and about the struggles with cancer. Suggestions were presented for improvements of the hostel; treated mosquito nets, and the addition of cupboards for the storage of belongings were two that the women had to offer. Patients provided decision-making around what to do to expand the program; rather than receive more funds for their weekly upkeep, given the almost 30% increase in food prices over the last two months, the women unanimously decided it would be better to help others access treatment, and manage on the available funds.

Alice (patient) shares her opinions.

Through this process, we’ve definitely struggled to ensure that we anticipate the problems, to plan with great care. Even as I write, I am teary thinking about how frightening it has been, at times, to embark upon the unknown, fearful of “paving the road to hell with good intentions.” Confronted, at times, with such immense human suffering, it has been a task to learn how we might partner to support those in need, separating our own compulsions from solutions that might best help others. The company of these brave ladies reminded me that we needn’t fear making mistakes, if we attend to the voices of those most affected; Road to Care is not about us, but about these women. If only the world was run by groups of grandmothers, it would be a kinder, more humane one indeed.

Current RTC patients and caregivers.

A visit from the Japanese Ambassador: March 22, 2011 – Hospice Africa Uganda.

Today, Joda and I were tasked with entertaining the Japanese Ambassador at a large fanfare in celebration of Japan’s Development Aid contributions to Hospice Africa Uganda. There have been a lot of changes here at Hospice since we first visited in 2006. Hospice started as a one-room operation in someone’s home, and a staff team of 3 with about 3 months of available funds. Today, they have grown into an outpatient Hospice with sites in three different parts of the country, and are undergoing accreditation as an institute of Higher Learning (the equivalent to a University or College), with a goal of training health care workers in Palliative Care for the whole of Africa. The small pharmacy is also the country’s primary supplier of liquid morphine for pain control in a population where 57% of people never visit a medical professional.

I see that this place has been built, brick by brick, with love.  And made to grow with some money, coming from institutions or individuals and used ever so carefully by Hospice to care for people living with HIV/AIDS and cancer patients.

One such funder is the government of Japan. Admirably, despite their attempts to rebuild and cope with natural disaster-affected parts of the country, they have vowed to maintain foreign aid commitments supporting initiatives such as Hospice.  Early in the morning, after an introduction between ourselves, the Irish Ambassadorial representative, the Japanese Ambassador, and a translator, the Ambassador politely asked, “Are you Japanese? Chinese?” Hearing Joda’s response, the Japanese Ambassador switched to Mandarin Chinese, without missing a beat.  Its interesting being able to only haltingly explain that we are Canadian, of Cantonese (and Hungarian) heritage, and that English, embarrassingly, is our primary language. The Irish representative offered her regrets for Japan’s loss and struggle. I can only imagine how difficult it might be to constantly be the recipients of public expressions of grief and apology, over and over again. It has happened to us on occasion, mistakenly-I am never sure how to respond. A grey tabby kitten, naughtily swatting at our pens and wandering on the meeting table became the source of bonding in the midst of lost words.

There was definitely a recognition, in the words of the Ambassador, of the importance of providing support to health care in contexts where people suffer much as a result of structural inequalities and poverty. Which to me was a nice way to frame things, given the media penchant to sensationalize the ‘disaster’ aspect of things, rendering invisible the effects of poverty wrought by social inequality, unfair trade policies, avoidable environmental degradation. I could go on. One hospice nurse explained, “It is too bad that we cannot help [the Japanese]. But we offer our prayers.” After the wreckage, people rebuild, slowly.  With the support and solidarity of others.

But what happens if the actual building, the construction of a country, its policies, its institutions, its relationships with the rest of the world is so broken, that it is difficult to know how to build, how to do good in a world of contradictions, appearances?

I struggle between being thoroughly disgusted with the State, and a deeply entrenched sense of what it must do, from basic perspective of social justice and human rights. And yet even this language fails me at times.  Its like the Orwellian insight, pronounced by the pig: all animals are equal. But some are more equal than others.

Tomorrow, Joda and I will head to the radiotherapy hostel, where women sponsored by the Road to Care program stay for the duration of their treatment. We hope to see if anything has changed in the context of their “safe space”-past visitors have said that the hostel, originally intended for gynaecological patients, has been quite filling up with patients of both genders. In a place where human chaos and illness seeks balm and cure, I suppose it is difficult to maintain a tidy plot of well-kempt, well-fed patients, while there are so many people who lack shelter, beds, food, and basic provisions and who sleep on the hospital grounds and on the floor of the wards. Joda is already hatching a plan to try to expand the Road to Care program to patients in need from other districts. We’re always learning…

(*If interested in this topic, I can send along a copy of another rant too long for this blog, entitled, On African Dance, Kenny Rogers, Private Hospitals, and Faking Japanese)

An evening of collaboration: March 19, 2011 – Kampala, Uganda

You could call it serendipity. But that would be to overlook the wellspring of energy, vision, and spirited leadership that is Dr. Anne Merriman. Move over, Kevin Bacon-Anne Merriman is connected to just about everyone. In her sparing free moments (in a car ride, over a very early breakfast, late at night in the hallway), Anne has always taken the opportunity to speak to us about how to advance the work of Road to Care, dropping names of like-minded collaborators more quickly that our tired brains could catch. Last night, she so very thoughtfully invited us to meet with some members of the Ugandan Women’s Health Initiative (see photo below). These folks, based out of the University College London, have formed a collaboration with Makerere University, a key research institution in Uganda, to carry out important Women’s Health Projects in the country.

(Left to right) Anne Merriman (HAU Founder), Ian Jacobs (UWHI Founder), Joda, Jen, Shahina Mohamed, Anthony Silverstone

Call it serendipity. At the terminus of the first part of the patient’s Road to Care journey, from Mbarara to Kampala is a radiotherapy hostel; conceived as a safe space for women receiving treatment for gynaecological cancers at the Mulago Regional Referral Hospital. This bricks and mortar building was made possible through the leadership of Professor Ian Jacobs and the Ugandan Women’s Health Initiative.  Given the long duration of treatment (often 8 weeks), the hostel is instrumental in enabling women who come from outside the capital city to receive radiation treatment. Through our discussions, it was clear that our thinking converged in important ways. The Ugandan Women’s Health Initiative has identified cervical cancer as a priority for the next five years. There will be efforts to provide country-wide screening for women. As we know, when you look for something a little closer, you’re bound to find something. This “something,” will translate to earlier cases of cervical cancer and pre-cancer, which will need treatment. This would contrast with the current reality, where a preponderance of cervical cancer patients, eighty per cent, present when their disease is quite advanced (this means, quite bad, and harder to treat with curative intent). While Road to Care has been a small initiative, the folks from the Ugandan Women’s Health Initiative were able to conceive broadly of our role as connected to how patients in outside regions are connected to services, and what factors might enable women needing treatment access to care in the capital city.  All of this is encouraging, and a challenge.

In addition to these serendipitous meetings with such partners, we are going to visit the radiotherapy hostel, and hopefully speak to some of the patients currently receiving treatment through the Road to Care program. We’d like to see how the process is functioning, still, and, with the help of a Hospice nurse and translator, to gather some input from patients’ everyday experiences. I am brushing up on my greetings in the Ankole language, and am currently thinking hard about issues of translation, gender, race, and observer-participant power in such exchanges.  Onwards!

St. Patrick’s day in Uganda: March 17, 2011 – Kampala, Uganda.

I awoke to a nauseous, vomiting, jet-lagged Jen; crossing over 8 time zones always leaves our bodies confused and tired. By 9am, we were off to our first meeting with the finance department at HAU in Kampala. Our visit was timely, as currently, HAU is experiencing a changeover in staff; we met with the previous and new managers of finance. We’re grateful for their diligent work in keeping the numbers in check. Here’s a picture of us with the HAU finance department below:

Left to right: (Back) Joda, Rebecca, Idah, (Front) Godfrey, Jen, Christine

It’s St. Patrick’s day; that’s a BIG deal because of the surprisingly large population of Irish expats here in Uganda. Although the closest thing to Irish on me was a green tie I had packed, we were nevertheless invited to be guests with Dr. Anne Merriman, the founder of Hospice, to a St. Patrick’s Day party at the Irish ambassador’s home. Posh, you betcha. But also a curious gathering of folks missing a sense of home-we had never witnessed such teary renditions of “Oh, Danny Boy.” Ever. Over live Irish music, dance, food and drink (read: Guinness cheddar with Guinness beer), we met two young, bright souls, Alice and Phillip, who I think may be new life-long friends.

Friday has been a rainy day spent at Dr. Anne’s home thinking through and carefully planning the potential expansion of the program and scope of Road to Care. There are a lot more women, coming from places other than Mbarara, who experience barriers to accessing medical treatment for their cancer. We’re trying to be thoughtful in coming up with solutions, and also in framing the problems. We have a lot of meetings coming up with people involved in this process-physicians, nurses, palliative care experts, women’s health groups, and patients themselves.  After a long day of discussions, back and forth between Jen and I, I think we’re prepared. More on this soon!

We left, We arrived: March 15-16, 2011 – Entebbe, Uganda.

Before leaving Hamilton, we stopped by the Hamilton Farmers’ Market, to pick up empanadas for the flight, and a pound of Julia Serna’s Colombian Coffee; the thought of being able to have a cup of coffee in the morning is actually viscerally comforting. Some people would refer to that as addiction or dependance i guess.

After a delicious supper at “Sweet Palace” in Brampton (by the way, I highly recommend their amazing butter chicken!), we caught our flight to Amsterdam, and connected to Entebbe rather uneventfully – aside from leaving my cellphone on the first plane and having it returned to me at the lost and found.

We don’t have a TV in Hamilton, so we rather enjoyed catching up on the TV shows and movies of the last year; not to mention, 16 hours of pampering economy class Dutch hospitality.

The humid, 25 degree celsius air greeted us as we entered the customs building. It’s funny how places smell different. Here, there is the familiar smell of burnt charcoal in the air. Jen says it’s balmy. We are staying at Sophie’s Motel tonight, a nearby airport hotel in Entebbe; we are instantly reminded of the Ugandan hospitality, gentleness and kindness that we’ve experienced on our previous trips here.

One messy room.

We are updating this blog as we finish off our Farmers’ Market treats (Thank you Jason for the Mufalata sandwiches). Thank you to everyone for being excited for us; if you want to keep up with our blog, just click on the “subscribe to this blog” link on the left of the webpage!

Goodnight for now =)

Matoke, Posho, Ground nuts: March 7, 2011 – Hamilton, Canada.

It has been fifteen months since our taste buds have encountered these three foods. Today, as Jen and I were preparing for this third trip to Uganda, I recalled these familiar flavors, which form the staples of the country’s traditional diet. The subtle sourness of Matoke, mashed and cooked in leaves over a coal fire, and the plainness of posho with the accent of finely mealed groundnut sauce—peanuts, in more familiar terms.

From March 15-April 10, Jen and I will be travelling to Kampala and Mbarara to meet with patients who have been through the Road to Care process and our partners: Hospice, the radiotherapy department in Mulago and gynecologists in Mbarara.

We will be keeping a field diary (aka. A blog); stay tuned for more stories!


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Riding Notes: Jen and Joda’s musings on the 600 km road

Riding Notes: Jen and Joda’s musings on the 600 km road

Day 1: Windsor to Comber (51km)

There is something about firsts that are a bit nerve-wracking; the lack of familiarity, the uneasiness, and uncertain outcomes always throw me a bit off. Today, however, demonstrated that beginnings can be tremendous successes. We awoke in my grandparents’ home to a hearty lumberjacks’ breakfast of eggs, bread, cheese, hungarian peppers straight from the garden, and a heaping pile of bacon lovingly prepared by my dad and nagypapa (grandfather). Following this, we headed to the Windsor Regional Cancer Center where Joda would be giving noon rounds-the first of many stops along our route. Our sweet, sweet ride, the trusty Cannondale tandem, came with us as a teaching aid. The talk was well-attended, and well publicized thanks to the efforts of Melissa, Road to Care’s unofficial PR representative. We took turns giving interviews to the junior reporter from the Windsor Star and posed dutifully for the videographer in our nifty new Road to Care cycling jerseys (thanks, Karen, for making the jerseys!) We made the trip from Windsor to Comber with only the minor inconvenience of a completely missing bridge along Tecumseh Road (see photo).

Departing from Windsor Regional Cancer Centre
When life throws you a missing bridge…

We would like to dedicate this portion of the journey to my Aunt Helen and her family; as a patient who has lived with ovarian cancer for eight years, she has made the trip back and forth from her home in Leamington to the Windsor Regional Cancer Centre, and to the London Regional Cancer Centre countless times. Seeing her tenacity and strength in the midst of such difficult times reminds us that it is the patients who are the unsung heroes of the fight against Cancer everywhere. Now for a good night’s rest; peace!

Day 2: Comber to Delaware Nation at Moraviantown (85km)

What an incredible day of riding! We had the eastward wind at our back all the way to Chatham where we stopped for lunch. At the restaurant, we were spotted by Brian, an avid biker who asked us if he could join us for the ride. For the last 10 km of the ride, the clouds above noticeably became darker; at first it was just a few specks of rain. I thought, “How refreshing!” And then it began to pour, so we took shelter at a gas station. Eventually, the rain subsided and we carried on with our ride. Riding through the after-rain mist was surreal. I just love the smell of rain.

Refreshing rains along the way (= torrential downpour)

We were greeted by Eunice, owner of the Log Home B&B, and had a warm shower, hot meal and rested our worn bodies. Tomorrow’s a shorter day, only 77km.

Day 3: Moraviantown to London (77km)

We learned our lesson from the previous day of riding and checked the London weather report which read, “Thunderstorms in the evening.”  Thus, we planned our day to arrive at our destination before the rain would hit.

Today was a day where we truly experienced a tremendous amount of hospitality. Eunice and Rienus, owners of the B&B had made sure our shoes were dry and water bottles full. In Glencoe, we stopped at a family run diner where the whole Sousa family welcomed us, asked us about the reason for our ride, and served us a healthy lunch. To Nadia Sousa, thank you so much for your generous dontation. And to little 7 year old Christian who advised us to ride safe, “Thanks! We made it to London!” When we arrived at Juliana’s house (Jen’s childhood friend who is putting us up for the night) we were greeted with hugs,words of encouragement, and a superb meal.

After 3 days of biking, more than just our tootsies are tender!

We would not be able to do this ride without the help of everyone. A big thank you goes out to the co-trustees of Road to Care, Crystal, Lynn and Melissa for all their help organizing this ride. Lawrence and Karen, thank you for the riding shirts. Thank you Catherine and Vel for helping us edit our media releases. Thank you to Dad for bringing us to Windsor, and for greeting us in London. To Steph who put countless hours into making the banner for our bike, “It looks great!” And a big thank you to all of our hosts in each city.

Good thing we made it before the rain; as I write at this desk in the comfort of this home, I hear the thunder roaring outside!

Day 4: London to Woodstock (61km)

The best thing about traveling by bike is what you get to see along the way.

Who doesn’t love ponies?

The Thames river is beautiful.

Hooray! We're a third of the way there!

I am So thankful to Eugenia, who let us stay in her home, and for her chicken in a crock pot. We’ll update this blog more tomorrow! Good night.

Eugenia is the sweetest woman in the world.

Day 5: Woodstock to Kitchener (65km)

Sometimes, the unexpected happens. The children of the lovely family with whom we were supposed to billet in Kitchener unfortunately contracted a dreaded and contagious case of ‘Pink Eye,’ leaving us to find other accommodations. We are truly grateful to Catherine for her dedication in calling all of her family friends in Kitchener. We will be staying with the Reese’s tonight. Thank you to Jim and Adrienne for taking us in; such hospitality is too much for words.

I use to think that Ontario was pretty flat. Note to any bike riders who want to ride this route in the future – there are many rolling hills between Woodstock and Kitchener. Good thing we packed some peanut butter jelly sandwiches to give us energy along the way. Today, we enjoyed the best of rural Ontario – picturesque fields of corn with blue skies above.

Multitasking at it’s best.
Doesn’t get much better than this!

Day 6: Kitchener to Hamilton (74km)

We decided to take the scenic route, heading east from Kitchener, through a town called Hespeler. I never knew there was a waterfall there; it’s truly a beautiful sight.

Hespeler’s best kept secret

We stopped in the local coffee shop for a breather. We were drawn into conversation with the fresh-faced barrista, Ryan, who had himself travelled to Haiti and Nicaragua. With sincerity, he posed difficult and poignant questions about the efficacy and ultimate goals of international development work in a world so marked with injustice. Ryan has planned to convene local round-table discussions on these sorts of topics to further explore the ambiguities and tensions of global issues. Reflecting on this, it has meant so much to us to share conversations with people along the way. We said our farewells, and left with a hefty slab of Dutch applecake to save as reserve food stores for the last 35 km of the trip.

As we made our way into the city, the most unlikely thought occured: Hamilton is stunning. The sun was setting over the York Blvd bridge as we were arriving; it was one of the most beautiful sights ever. It is so good to be home.

Homecoming

Day 7: Hamilton to Mississauga (57km)

This morning brought us the comforts of home; we awoke in our own bed, trudged through our own messy bathroom, and drank from our own favorite coffee/tea mugs. Catherine gifted us with a hand-delivered (well, bike-delivered) breakfast consisting of market-fresh fruit, raspberry buttermilk cake, and aged raspberry farmhouse cheddar cheese. Amazing. The mounting neglect of my stretching regime had caught up a bit, and Steph was quick to “encourage” me to exercize properly. I have now developed three ways of holding handlebars, to mitigate the effects of riding’s wear and tear.

We headed up to the Juravinski Cancer Centre for Joda’s noontime presentation; it was our first time riding up the access called the Jollycut. The incline felt unusually difficult, but after a 15 minute warm-up, we were on our way and feeling good about the ride.  Following the presentation and a quick stop at home to reattach our paniers, we headed into the heart of downtown to convene with our farewell send-off at Centenary United Church. The photo below, showing a merry gathering of Centenary folks, was taken by a stained-glass restoration repairman who had climbed to the top of the church to remove the Legacy windows slated for much-needed repairs:

A warm welcome at Centenary

Together with Ian, Ralph, and Steph, we made our way from Hamilton to the Burlington grounds of the Royal Botanical Gardens, stopping to pick up Willis at the Dundurn Castle, and then at Easterbrooks for a picnic snack before the group resumed their trek homewards. (NB-Joda ate a foot-long hot-dog and an entire cheeseburger).

There is something incredibly soul-stirring about the ability to share this trip with so many people, in so many different capacities-some riding alongside us, some offering stories lives touched by cancer. There are just so many stories….

We rode uneventfully through the Southern Ontario-farm-belt-quickly-becoming-suburbia, through Oakville, Milton, to Missisauga. I found this pear tree on the side of an old farming lot, up for sale as a site for a redevelopment as new homes, and thought I’d share some of its bounty. I should have remembered two things: first, it is not yet pear season. Second, I have an allergic sensitivity to pears. It tasted great anyway.

Pendulous Pears Peering Past Private Property…Pilfered.

Day 8: Mississauga to Windsor: Looking back at the Road to Care

This entry is dedicated to the Hompoth-Scott family; we send our love and share your sorrows.

As we write this post, we are headed Westwards towards Windsor. Gathered in our family van together with my father and brother, everything looks a bit different from this vantage point.

This is how the road before appears right now. Joda ceased trying to photograph a proper realistic shot, and came up with this distorted image:

Hwy 401 West at night, from the backseat of the van.

Having traveled this past week by bicycle through Southern Ontario, Joda and I have learned to feel the subtle slope of the hill, to notice the graveled edges of the paved roads beneath us, and to relish the fleeting gift of the wind at our backs.

At times, the small victories and everyday preparations of cycling preoccupy us, and we have little time to remember the spirit of our ride. But the events of this evening hit home hard, and we were forced to acknowledge the realities of losing a family member to cancer.

Tonight, my Aunt Helen passed away after a long, hard battle against the disease. The first portion of our journey, from Windsor to London, was dedicated to her—a fact which cheered her in those last days, we have been assured.

Throughout this journey, this thought has remained with me: the life of one woman, whether in Canada, is the same as the life of one woman in Africa. I say “Africa,” because sometimes the suffering “over there” is sometimes portrayed as natural, inevitable, just too bad….

But it isn’t. The human suffering at the end of life, due to cancer unabated, the grief of family and community at the loss of a mother, sister, friend…is the same. This compels me to believe that something can be done, however small, to make a difference.

Through our travels to each and every cancer center, we have met dedicated professionals who give their very best to care for their patients. In Uganda, the dedication is the same, yet few resources exist to support those who are most in need, particularly issues related to women’s health care.  And so we ride on.

Thank you to all who have cheered us on our journey, who have given generously to support these brave patients. And thank you for writing to encourage us on our way.

PS-thank you to Melissa and Brandon for your care of us today throughout the moments of crisis, and to Wassie and Lucy for your tremendous hospitality. Our next Blog post will be on Sunday night after we bike from Mississauga to Toronto. Until then.

Day 9: Mississauga to Toronto (40km)

Bleary-eyed from the sleepless night prior, we were gladdened to spend our day of rest in the company of Melissa and Brandon, and this evening, with Shail and Gobi. There is something to treasure about friendships that flow with ease, where both conversation and silence is comfortable, and hospitality extends to allowing us to simply be our exhausted selves. We rode light today, (save for the Dosa lunch in our bellies), having loaded our packs into Melissa’s Toronto-bound vehicle. The lakeshore trail gifted us with beautiful scenery and open skies along the route, and the weather was perfect. I counted only cumulus clouds, I think 🙂

Waterfront Trail Bridge

Joda and I gave ourselves permission to veer down little paths and to explore the little lakefront parks and waterway bridges. Despite the fact that we both have lived in the GTA our entire lives, most of this trail was new to us. NB-the Missisauga-Toronto Lakeshore route is gorgeous, and if you have not yet had the chance to walk or cycle along it—-do make the trip. There were sandy beaches, families gathered for barbecques, and bird and butterfly sanctuaries dotting the way. The towering skyline of Toronto seemed so far in the distance, amidst the green and blue shore. We stopped in at Cafe Du Lac, where we were greeted warmly by Katherine, and ate about a pound of sausage purchased from a local Polish deli before heading in to the downtown core.

Toronto, just around the bend

We made it downtown at Shail and Gobi’s place, happy to have arrived in the city. Miles, their new Shi-Tzu Poodle pup, licked away the exhaustion and shared his ample doggy love with us as soon as we came through the door. Tomorrow, Joda will give his presentation at at Princess Margaret Hospital, which is one of the top cancer centres in the world. Wish us luck!

Day 10: Princess Margaret Hospital to Sunnybrook (10km)

After today’s presentation at PMH, we had the chance to speak with Dr. Rosen; he is a gynecologic oncologist who taught surgery for cervical cancer in Eldoret, Kenya. I was encouraged by his shared enthusiasm and heartfelt vision for a better future for women with this disease.

Biking in Toronto from Downtown to Midtown is challenging with the traffic. We took extra care and arrived safely. We also realized a while ago that our route is far longer than the 600 km originally accounted for, since we are straying from the original “by car” routes provided by googlemaps. So we’ve biked 520kms so far, and will likely go over the 700 km mark!

We spent the evening with good friends whom we met while studying at McMaster University. Thank you to Shail, Gobi and puppy Miles, as well as the Strathy family for hosting us in Toronto. Off to Oshawa tomorrow!

The dog’s name is Miles.

Day 11: Toronto to Oshawa (57km)

Sunnybrook hospital was a tremendous experience today. The lecture hall, in full attendance, was abuzz with such a positive energy.  The real honour was the generous and incisive introduction provided by Dr. Gillian Thomas; she underlined many of the systemic issues underlying women’s access to cervical cancer treatment, and challenged the audience to think about the privileges and responsibilities that come with living in a country with access to food, shelter, and high quality medical care. Despite the fact that the problems may seem immense, Dr. Thomas emphasized the fact that small parts of the issues can be approached, that each person can do something. Several people approached Joda and I, before and after the presentation, with their comments. These were encouraging reminders.

The actual ride today was difficult, as it entailed getting out of the city of Toronto proper, and to Oshawa. Our route took us behind TTC busses, random traffic obstructions, and was generally high-stress. When I (Jen) saw the first field populated with cows, I breathed a sigh of relief, and continued the rest of the ride to Oshawa with relative ease.

Oshawa welcomes us!

One of the issues we’ve encountered cycling is the need to constantly crane our necks around to evaluate the oncoming traffic. I always joke that I communicate visually with every passing driver; that way, should something happen (knock on wood), the last thing they will see is my haunting gaze. Kidding aside, we’ve had an extreme learning curve with regards to safety during this trip. We’ve received much wisdom from cyclists along the way. Joanne and Doug Barlowe, with whom we are staying tonight in Oshawa, are two such people; we have benefitted from their 25 years+ tandem cycling experience in innumerable ways. They even  offered me a hand-crafted cycling helmet mirror to address the neck-craning-while-driving problem, taking it off of Joanne’s very own helmet. This way, we will be able to see oncoming traffic better. Amazing!

Objects in the mirror may be closer than they appear.

Note: I would post Joanne’s blueberry sauce and blueberry muffin recipe, but am trying not to turn this into a food blog! Tomorrow: Presentation at R.S. McLaughlin Cancer Centre, 12:00 pm, then off to Newmarket on a tandem ride with Doug and Joanne!

Day 12: Oshawa to Newmarket (79km)

Below is a photo of Gerry, a sprightly 81-year-old cyclist, and founder of the Oshawa Cycling Club:

Gerald: Founder of Oshawa Cycling Club – Biker Extraordinaire

When we met, Gerry was out on his bike for his morning ride (while we were still snug in our pyjamas), and was persuaded by an insistent Doug to come in from the rain for a cup of coffee. In his own matter-of-fact way, eyes twinkling and bemused, he told us of the many illnesses and breaks he had managed to conquer. Each year, he rides the kilometers corresponding to his age. Now, if there is anything that reminds me to not complain about my aches and bumps, it is the image of this inspiring octogenarian cyclist!

Our presentation in Oshawa was held at the Cancer Centre, located on the estate grounds of automotive magnate R.S. McLaughlin of General Motors. His 1920s digs were decked with the fineries befitting a tycoon of such stature-indoor wooden bowling alley, a marble swimming pool, indoors and out, a carriage house for storing Buicks, and a manicured grounds complete with a bevvy of water fountains. Joda’s presentation was well-received by the enthusiastic Radiation department staff. It is nice to know that following each presentation, people are able to take away a sense of their capacity to be involved-as practitioners in cancer care, and as members of an international community able to advocate for systemic change. NB-since we have not been keeping track of attendees, it’d really help us out if you could send us a note if you do wish to remain in contact, or have an idea to share. Email us at joda.kuk@gmail.com!

Doug and Joanne Barlow: Our Tandem Cycling Mentors

Braving the Hills between Oshawa and Uxbridge with the Barlows was not too difficult, since they graciously offered to carry our packs on their tandem for the trip. Alas, such small kindnesses will not be forgot! We parted ways there, and headed on the road to Newmarket. Some sections were so steep that bridge crossings might have been more appropriate:

Ontario is flat… when you’re in a car.

And finally, we made it to Newmarket! We’ve ridden a total of 656km thus far, and anticipate that by the time we reach Barrie, we will have ridden well over 700 kms. Our life on the road has been kind, each day driven by a new sense of purpose and anticipation. This has certainly been a rewarding adventure, and we hardly want it to end! I (Jen) have been only half-kidding when I suggest that we should ride our bikes home, Westwards, from Barrie just to make Riding the Road to Care a nice, round 1000 kms! We’re confident, however, that this trip on the back of a tandem bicycle is only the beginning.

Day 13: Newmarket to Barrie (51km)

The final leg of our journey was memorable, not without surprises. Who knew that Bathurst Street is completely unpaved in parts?!

Bathurst Street: Sometimes the Road to Care is unpaved.

Quite fittingly, the broken trail reminded us of the rural roads in Uganda and the women who need to travel those roads to seek treatment.

As we cycled along the shores of Lake Simcoe, we were overwhelmed by the beauty of the scenery and by the the feeling of having accomplished this crazy adventure. Jen’s eyes welled up with tears when we finally stopped in Barrie; we surveyed the serene water before us, and it became real: we had arrived.

Is that it?

It’s hard to believe that this riding expedition has come to an end after 707 km along sideroads, suburban streets, rural highways and at times, muddy paths. We will always remember the tremendous hospitality of our billets along the route; thank you for feeding our empty bellies and sheltering our tired bodies. This odyssey would not have been possible without your help. Through this ride, we hope to have shared the story of the countless Ugandan women who brave the trek to the capital city, in hopes to seek treatment, taking nothing for granted-the provision of food for the journey, clothing and bedding, and shelter. Our telling of their stories is partial, but we hope to have offered something to offer testimony to their lives and to their struggle.

Thank you for following our riding blog and verifying nightly that we had indeed arrived at each destination. We unabashedly ask that you consider sponsoring a woman to pursue curative medical treatment for cervical cancer by clickingwww.roadtocare.com/donate. And do write to let us know that you’ve been reading. Every life is precious.

(We will update this weekend with a report from Barrie, and links to newspaper stories covering our ride. A grand total may also be forthcoming! ‘Till then!)

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