Author Archives: joda

10th Anniversary Celebration

On our March 2019 visit to the Uganda Cancer Institute, we were able to witness the new cobalt machine in action, and the second cobalt machine being installed. Now Uganda will have twice the capacity to treat patients in need of radiation therapy.

I’ll be showing pictures at our 10th anniversary celebration and fundraiser at the CARO Annual Scientific Meeting in Halifax

Where: Salty’s Bar and Grill

When: Friday, October 4th, 2019 at 12pm

To confirm your attendance, please RSVP at joda.kuk@gmail.com

 

Comments Off on 10th Anniversary Celebration

10th anniversary celebration

On our March 2019 visit to the Uganda Cancer Institute, we were able to witness the new cobalt machine in action, and the second cobalt machine being installed. Now Uganda will have twice the capacity to treat patients in need of radiation therapy.

I’ll be showing pictures at our 10th anniversary celebration and fundraiser at the CARO Annual Scientific Meeting in Halifax

Where: Salty’s Bar and Grill

When: Friday, October 4th, 2019 at 12pm

To confirm your attendance, please RSVP at joda.kuk@gmail.com

Leave a comment

Providing Hope, 4 Patients At a Time

This week, the 11th patient sponsored by Road to Care began treatment in Kenya. She will receive her external beam radiotherapy at the Aga Khan University Hospital in Nairobi, her chemotherapy at Jalaram Medical Centre across the street, and her brachytherapy treatment upon return to Kampala at the Uganda Cancer Institute. 

All three of these partners have agreed to provide their services free of charge.

Through this collaboration, we will be able to continue sending stage IB-IIB cervical cancer patients to Kenya until the new radiotherapy machine is operational in Uganda.

To house these patients, Road to Care has rented and stocked an apartment in Nairobi, housing four patients at a time. The cost of providing transportation, accommodations and food for each patient for the duration of their treatment is $900.

Every 5 weeks, we will send another group of 4 patients to Nairobi to receive curative treatment.

Please help us by making a donation. Only with your generous support can we continue this life-changing work. 

With gratitude,

Joda Kuk

Founder and Chair of Road to Care

Comments Off on Providing Hope, 4 Patients At a Time

Treating patients in Nairobi, Kenya

   On April 8th, 2016 the sole cobalt unit in Uganda broke down permanently. Installing the new radiotherapy unit will take many months.

   When I heard this news, I could not sleep. I was troubled by the thought of a 40 year old cervical cancer patient with a 70% chance of being cured not receiving chemoradiation because the world stood by and did nothing.

   I got on the phone and spoke with our director in Uganda, Ndinawe Kateera who bravely took on the task of arranging for stage IB – IIB cervical cancer patients to be treated in nearby Nairobi, Kenya.

   The first two patients are living in an apartment that Road to Care has leased, and started their chemoradiation today, on May 4th, 2016.

   They are receiving their radiotherapy at the Aga Kahn University Hospital in Nairobi, and their chemotherapy at the Jalaram Medical Centre.

   The total cost of sending one patient to be cured is $3800 CAD. To help sponsor a patient, please click here.

   Together, we CAN make a difference in people’s lives and provide real hope during this difficult crisis.

Sincerely,

Dr. Joda Kuk

Comments Off on Treating patients in Nairobi, Kenya

Radiotherapy machine breaks down

Uganda’s radiotherapy machine for cancer treatment breaks

Radiotherapy machineUCI
The radiotherapy machine, which is now broken beyond repair, was donated in 1995

Uganda’s only radiotherapy machine used for treating cancer is broken beyond repair, the country’s main cancer unit says.

This leaves thousands unable to get potentially life-saving treatment.

The capital’s Mulago Hospital is waiting for building upgrades to be made before installing a new machine.

It gets 44,000 new referrals a year from Uganda, as well as from neighbouring countries including Rwanda, Burundi and South Sudan.

Around 75% of these may require radiotherapy, the unit’s spokesperson Christine Namulindwa told the BBC on the phone from Kampala.

“It’s really, really a hard time,” she added, “[and] it’s having an impact on our patients, as the treatment is often required.”

More on this and other African news stories

Radiotherapy uses radiation to target and kill cancerous cells in a specific part of the body, and can be used for many types of cancer.

Healthy cells can recover from this damage, while cancer cells cannot.

The machine at Mulago Hospital was second hand when it was donated in 1995 and has been repaired several times in the past. 

But efforts to fix it this time have failed, Ms Namulindwa said.

The cancer unit is currently talking to the ministry of health to get more funds and speed up the building of a special bunker that is needed for a new radioactive machine.

‘Travel to Kenya’

The ministry’s director of cancer treatment, Dr Jackson Oryem, told BBC Focus on Africa radio that a new machine should be delivered within the next year.

He said the need to build the new special facilities was causing a delay.

In the meantime, patients are still able to get other treatments, such as chemotherapy and surgery, but if they need radiotherapy, and they can afford it, they will have to travel to neighbouring Kenya.

Dr Oryem said the government may be able to fund a trip abroad for some of the most urgent treatable cases.

The incidence of cancer is on the rise in Africa overall as life expectancy increases.

Leave a comment

Bringing Access to Kabale, Uganda in Feb 2016

   In February 2016, we will be partnering with Bridge to Health and KIHEFO (their Ugandan partner) to open a new referral site for Road to Care in Kabale, Uganda. This city is located in the southwestern tip of the country, where Uganda borders Rwanda and the Democratic Republic of Congo. Travelling to the capital city from this region can take over 10 hours, which poses a significant barrier to patients requiring radiotherapy which can only  be delivered in Kampala.

   This will be the third active enrolment site for Road to Care; we will keep you posted on our progress.

   Thank you all for your continued support!

Joda

Leave a comment

Outreach Visit with Hospice Africa Uganda

Day 5 in Uganda so far and each day has exceeded the previous day when it comes to experiencing the hospitality and generosity of the people here. Yesterday’s opportunity to spend time with the HAU mobile palliative care unit at a nearby community was by far one of the most touching experiences I’ve ever had.

There were 10 of us (including the hospice driver) that traveled together in a small white van from the hospice site to a nearby community where a group of about 50 or 60 patients were already waiting.  Everyone was sitting on mats and mattresses set up by local volunteers earlier in the morning.  What I came to realize was that these patients were not only there to see a clinician and to receive medication for their symptoms but that they go to spend the day together as a community and provide emotional support to each other.

Most of the patients (mostly women) were HIV positive, and many were also diagnosed with cancer.  What saddened me most was that there was also a group of children with HIV waiting to receive the same type of care. I immediately grew to love these children.  Watching the way they shared what little they had with each other, even offering to share what was likely to be their only real meal for the day to me just made me want to cry.

I can’t say enough about the strength and courage of the people of Uganda that I’ve met so far and that includes many of the hospice staff and volunteers that give so much of themselves to help the patients.  Hopefully the images will better convey what I’ve been trying express in words.

Thanks for continuing to follow us on our journey!

~melisssa

Leave a comment

2012 Radiotherapy Access Expansion

August 10, 2012

By Jennifer Hompoth

Yesterday, I spent a full hour looking for a kitten. Fluffy and grey, with a few mottled cream coloured zig zag patterns, he was a tremendous ball of energy, and as such, was noticeably absent from the gaggle of half a dozen or so other ginger tabbies resident at Dr. Anne’s home, here in Kampala. He’s particularly difficult to spot, as his tiny size, and coloured fur played perfect camouflage on the hardwood patterned floor of this house, the light coming dimly from a few sources now that the sun had set on Lake Victoria.

I found him on the seat cushion of a dining table chair, a soft purring crescent burrowed unto himself. Not wanting to disturb him, I stroked his fur gently for a moment, and let down the tablecloth to restore his secrecy, sort of.  No need for alarm—kitten found.

Sometimes, things are there obviously in front of you. And sometimes, the more accustomed one becomes at simply looking and not perceiving with full depth-the more its easy to overlook things which should shock or startle us.

Forgive the optical language—what I actually do rely on in this story is my sense of sight, of perception, of description based on my noticing. Your sights, having not been mine these past few days in Uganda, will perhaps not see what I am trying to show you. But I will insist, anyways, and thank you for the indulgence. Those of you who know me well, will know the feeling of watching me frantically look for our cat, often calling him inside from the dark doing goodness knows what, on a nighttime killing or something equally sordid and feline. So watch along with me, even if what I illustrate will at first appear a bit crazy.

Today, Dr. Joseph Kigula Mugambe, the head radiation oncologist of Mulago Hospital sat with our team. He listened with wisened, bespetacled eyes, folding his hands and leaning back easily in his chair, smiles playing on his face as we tried our best to affect the tone of gravitas that 30 year olds meeting with senior physicians such as Dr. Joseph should command. Dr. Joseph is a man who laughs easily, like many Ugandans, with a generosity towards life that I can only admire. Together, we spoke of the “worse case scenario”: what might happen if the sole machine capable of providing radiotherapy to the country’s entire population might break down?

The machine is a creaky bit of work, held together by questionable adhesive-duct tape, I think. Breaking weekly, it nevertheless is in use 20 hours a day, when it is not down for repairs. Working in the midst of these conditions, I think, must be maddening—proceed as usual, treat as many patients as possible, never knowing just when the malfunction is actually a permanent death. Joseph raises this point—when would we actually know, in certainty, that the machine is really broken? Two weeks of not functioning? A month? Number of patients missed? Surely, we can set a standard, I offer, quite unhelpfully. The machine, I think, is decidedly palliative, but there is no sympathy-just the expectation of its labours until the very, very, very end. And the teams of dedicated professionals-nurses, physicians, physicists—buzzing around in their well-rehearsed maneuvering to bring patients to the waiting area to the in-between waiting space with the drawn curtain, to the planning simulator, to the radiotherapy room with the cobalt. Repeat.

I wonder to myself how those who make decisions, far from the ground of clinical practice in this hospital can possibly go about their days knowing that the one and only machine in this whole entire country is on the way to a permanent exit. That its breakage might mean several things: the unnecessary deaths of patients in the interim, while a new unit is set up, and quite possibly, the loss of the very skilled people whose labours make a Radiotherapy department, and cancer care itself—possible. Not to mention—Melissa makes mention of this—the pricey and hazardous job of arranging for the disposal of the source of the cobalt machine. Do we have a plan for the freaking nuclear waste, people? The shell below is an image of the lead container in which the hot mess was initially delivered to the Radiotherapy department. It sits casually against a wall, in the patient waiting area, to the left of the black-and-white television whose crackling image is captivating most of the hospital patrons’ attention. I have never ever noticed this shell before-and yet it is the size of a small drum. It looks like an empty time capsule. Maybe it can be taken away by the Chinese, mentions the Medical Physicist-they have offered to do it cheaply, but costs are rising yearly.

What if the machine breaks suddenly? Dr. Joseph explains, in his calm and slightly bemused demeanor, that they have begun speaking of a plan, one in which the department musters all of its resources just in case it is left to hang, and must save itself alone, without the inflated promises and watchful negligence that high-level adiministrators generally inflict on this Health Care system.

I am glad. We can be part of this plan. We commit to supporting these intrepid fighters, these cancer physicians, nurses, therapists, in a way that will allow their integrity as a department. We promise that Road to Care, and Canadians, will be part of the solution. We take a deep breath, and hope, too, that the machine’s slow fizzle out of this world won’t be too soon.

I return home tonight. The cats are gathered around the feeding bowl, a gaggle of orange and white. No sign of the grey fluffy thing. I search, this time, less frantically—I know it is a matter of time before I notice his hiding spot, and greet him once again. After about ten minutes of my best looking, I am interrupted by Alice, one of the women who works for Anne. She laughs at me, and says that the kitten is not missing, that the grey one has been given away this afternoon—to a doctor so-and-so who works at Hospice. I am startled— my expectant search won’t be fruitful this time. The kitten is not here. Sure, he’s at someone else’s home, and I have plenty of other human atrocities and injustices to ponder here in this country. But the absence of this touchstone of familiarity, the visceral comfort of the soft grey fur-the sight of grey kittens’ tumbling with his ginger sibling—is a focal point for all of the sadness which I feel. Immature as this is, I am really fucking sad that my friend, this grey ball of fur, is gone.

The remaining ginger tabby nudges and suckles the mother cat, and falls away to sleep in a huddle, his tiny body nestled in hers.

And I stretch my memory of this place, of Uganda, of the comforts I have experienced, and for the striking suffering of all I have seen, and I try to cry for the things I have missed, for the things I know are so impermanent. I am in this place for such a short time.  Am I crying for the kitten, for the women with cancer who may not find a cure, or crying for the street child, barely an infant begging daily in the roundabout in the middle of the dusty street? May I watch, sharply, such that I do not miss the things that are so easily blurred into the background of “life as usual,” the lives of people (and kittens) here. I suppose I can take some of Kara’s wisdom, and recognize the impossibility of having to “save” anyone/thing while I am here, and to share, experience, and live with an openness that recognizes our lives are intertwined with, but not in control of, the lives of others. This is an extremely difficult thing to practice, especially with fluffy kittens. Maybe even with cancer patients in developing countries.

James Myshalyk, in his book, Six Months in Sudan, muses on his own writing, and the readers and people “back home” who followed his blog during his time as a student intern with MSF. He writes “because people are hungry to be brought closer to the world, even its hard parts…I believe that which separates action from inaction is the same thing that separates my friends from Sudan. It is not indifference. It is distance. May it fall away.”

May distance fall away. But may I also know what I must hold life’s lessons at arms’ reach, gently, allowing shape and form and substance to approach me, and shake me when I am too dull or when all I see is what I have crafted in my own minds’ eye. May that which I see up close be sharpened, vivid, and most importantly, may my need for familiarity not dull the incredibly rich human portrait of all that I see and experience here in Uganda. May we share this journey with you. Whoever you are-thanks for reading. Post a comment and say hello sometime!

Jen

 

August 8, 2012: Outreach Visit with Hospice Africa Uganda

By Melissa Sung

Day 5 in Uganda so far and each day has exceeded the previous day when it comes to experiencing the hospitality and generosity of the people here. Yesterday’s opportunity to spend time with the HAU mobile palliative care unit at a nearby community was by far one of the most touching experiences I’ve ever had.

There were 10 of us (including the hospice driver) that traveled together in a small white van from the hospice site to a nearby community where a group of about 50 or 60 patients were already waiting.  Everyone was sitting on mats and mattresses set up by local volunteers earlier in the morning.  What I came to realize was that these patients were not only there to see a clinician and to receive medication for their symptoms but that they go to spend the day together as a community and provide emotional support to each other.

Most of the patients (mostly women) were HIV positive, and many were also diagnosed with cancer.  What saddened me most was that there was also a group of children with HIV waiting to receive the same type of care. I immediately grew to love these children.  Watching the way they shared what little they had with each other, even offering to share what was likely to be their only real meal for the day to me just made me want to cry.

I can’t say enough about the strength and courage of the people of Uganda that I’ve met so far and that includes many of the hospice staff and volunteers that give so much of themselves to help the patients.  Hopefully the images will better convey what I’ve been trying express in words.

Thanks for continuing to follow us on our journey!

~melisssa

Dispensing ibuprofen at the pharmacy station.

Food rations provided by hospice.

Children helping each other wash their hands before lunch.

Lunch being served by volunteers.

A young boy helping to clean up after the outreach.

Patients heading home after the clinic visit.

August 7, 2012: A dream come true

by Kara Schnarr.

Here I am doing the “Ebola Handshake” with Josephine, one of the nurses that works with the Road To Care patients.

First let me introduce myself. I am the newest member of the RTC board, and am so honoured to be a part of this amazing group.   My road to Road To Care, started back in 2005 when I was a graduate student.  I had attended ASTRO (American Society of Therapeutic Radiology Oncology) and at the time was not feeling completely at peace with my current path towards research.  I had begun to dream about doing work abroad, experiencing and embracing new cultures … but wasn’t sure how to go about it.  At this conference, Paul Farmer (of Partners in Health) was the guest speaker and gave a talk to encourage the world of Radiation Oncology to push towards improving access to Oncology care around the world.  He told stories of his experiences in Rwanda, Haiti and Lesotho – and I was so inspired.  I had tossed around the idea of entering medicine to become a radiation oncologist, but wasn’t sure if this was a field that would be compatible with international experience.  After hearing Paul Farmer speak on his experiences improving access to care and encouraging community-based care, I felt truly inspired.  I decided to pursue medicine, with the goal to become a Radiation Oncologist then set out to do as Paul Farmer said. So I did it – I finished my PhD, and then went to medical school at age 28.  I now have quite substantial medical school loans and more than a few grey hairs. However, I am a second year Radiation Oncology resident at McMaster University – and now living out my dream here in Uganda with the opportunity to work with Road To Care.

With only 2 days in, I have already had so many amazing experiences.  Today we went to the see the women in the Road To Care program staying at the Woman’s Hostel.  They greeted us with the most amazing performance.  They sang about their struggles with cancer and how thankful they are with assistance that RTC has provided.

Click Here to watch The Radiotherapy Hostel Greeting YouTube Video

These women would have otherwise not been able to afford treatment and would have no choice but to let their cancer advance and eventually end their life. Seeing them sing and dance with such emotion – I was brought to tears. I am here.  I am living my dream.

Kara.

 

August 6, 2012: A Return to Hospice Africa Uganda

“Welcome home!” exclaims Dr. Eddie, a clinical officer at Hospice Africa Uganda (HAU).

It’s been a year since we were last here in Uganda. This time, our team’s goal is to find out how Road to Care can support the expansion of the radiotherapy department at Mulago Hospital.

The sole cobalt radiotherapy machine in Uganda

Why expand?

For years now, physicians at Mulago Hospital, along with the Ugandan news media have highlighted the need to replace the country’s sole radiotherapy unit at Mulago Hospital. This cobalt radiotherapy machine has been operational since 1995. It is used to treat over a thousand patients each year. Currently, it is in use over 20 hours each day to accommodate the vast number of cancer patients requiring treatment. The waiting list to get onto treatment can be weeks.

When I was in Uganda in 2009, the machine had a break down each week. Patients with cancer had days of delay because the machine required repair.

Shipping a used, decade-old cobalt machine from Canada is problematic, impractical and exorbitantly expensive. Physicists and radiation safety officers whom I have spoken to have all advised against this idea.

Installing and commissioning a new cobalt machine takes months. If we simply removed the current machine, and put in a new one, there would be hundreds of patients during that period who would be unable to access desperately needed treatment.

That’s why Road to Care supports the current plans to expand the radiotherapy department at Mulago Hospital. We will meet with hospital administrator and government officials to strategize our contribution.

Hopefully, the current machine will last until the new one is installed.

So that’s why we’re here; to meet with those who will be most involved and most affected by this project. Follow along with us! We’ll be here, blogging from now until August 20.

We've arrived!

(Left to Right) Kara Schnarr (Treasurer), Joda Kuk (Chair), Jennifer Hompoth (Policy Advisor), Melissa Sung (Secretary).

Tomorrow, we’re off to the radiotherapy department at Mulago Hospital!

Cheers,

Joda

Leave a comment

2012 Radiotherapy Bunker Building Project

August 6, 2012: A Return to Hospice Africa Uganda

“Welcome home!” exclaims Dr. Eddie, a clinical officer at Hospice Africa Uganda (HAU).

It’s been a year since we were last here in Uganda. This time, our mission is to find out how Road to Care can support the construction of a second radiotherapy bunker. For this project, our longtime partner, Hospice Africa Uganda will be managing the finances; we spent today meeting our good friends at Hospice.

Why a second bunker?

For years now, physicians at Mulago Hospital, along with the Ugandan news media have highlighted the need to replace the country’s sole radiotherapy unit at Mulago Hospital. This cobalt radiotherapy machine has been operational since 1995. It is used to treat over a thousand patients each year. Currently, it is in use over 20 hours each day to accommodate the vast number of cancer patients requiring treatment. The waiting list to get onto treatment can be weeks.

When I was in Uganda in 2009, the machine had a break down each week. Patients with cancer had days of delay because the machine required repair. Waitlists have become increasingly longer. When we returned in 2011, I saw the machine on its last leg; it is now malfunctioning on a daily basis.

Shipping a used, decade-old cobalt machine from Canada is problematic, impractical and exorbitantly expensive. Physicists/radiation safety officers whom I have spoken to have all advised against this idea.

Installing and commissioning a new cobalt machine takes months. If we simply removed the current machine, and put in a new one, there would be hundreds of patients during that period who would be unable to access desperately needed treatment.

That’s why Road to Care is fundraising for a new radiotherapy bunker to be built beside the current radiotherapy department. We hope to have the bunker construction completed in 2013-2014, and have the new cobalt unit installed shortly thereafter. Hopefully, the current machine will last until the new one is installed.

To build this bunker, we need to raise $250,000 Canadian dollars. Please consider giving generously!

So that’s why we’re here; to meet with those who will be most involved and most affected by this project. Follow along with us! We’ll be here, blogging from Aug 5 – 20.

We've arrived!

(Left to Right) Kara Schnarr (Treasurer), Joda Kuk (Chair), Jennifer Hompoth (Policy Advisor), Melissa Sung (Secretary).

Tomorrow, we head to Mulago Hospital. Goodnight!

Leave a comment

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!

6 Comments
Contact The ChairContact The Chair
Contact

You can contact Joda Kuk: the chair of RTC directly by filling out this form.

* required
Send Message