Week 1

9th February.

Je suis arrivée

I arrive to a series of screenshots from Emma who has been tracking my flight for the last twelve hours, making sure it doesn’t go off course. I see a row of men standing with handwritten names on paper and don’t see my name amongst them. I am a little disappointed as am a fantasist and have been hoping for this moment. But then Jimmy, who I’ve been in contact with for a couple of weeks arranging a lift, spots me. Jimmy is chatty, welcoming, explains how schools work in Uganda and laughs a lot so I’ll take that over a hand written ‘EMMA’.

On our way to Jimmy’s car and for the hour drive home I become English incarnate. Not British, because that would suggest a Gaelic knowingness, but English. Blighty English. English with a heavy ING and a throaty GL. In my day to day British/English life, I see myself as more… European, kind of French really – because I lived in France for a year (nine months) 12 years ago and liked to pronounce names of medications with an Italian twist: gemcitabine became gem-chita-bineh, lansoprazole: lansoprazol-eh. I wear my heart on my sleeve, red lipstick and subscribed to Mubi for a year until I realised it no longer cost £3 a month and the only thing I’d watch was Le Weekend every couple of months. There’s a familial rumour too that we’re actually one sixteenth Italian which had been cruelly kept from me until July, probably because for many people being one sixteenth anything isn't that seminal. And finally, I go to Tesco Express in Sharrow rather than Tesco Extra on Abbeydale. I know, bohemian.

But not now. Right now I’m a poor man’s Paddington bear, starting every sentence with ‘oh gosh’, straight back and startled, dressed like a home-counties kid on their first gap year. I start interrogating Jimmy about his day, how often he does this drive, what has the weather been like, has it been raining, I make banal comments and deliver them like a revelation ‘it’s cold in England so it feels really warm here!’.

The streets are buzzing, even more so than London Road, the hour long drive is lined with cabin after cabin, there must be thousands, all little shops and businesses. There’s swell after swell after swell of music, like somebody is playing with the volume dial up for two seconds then back down, past another group of people or a bar and it swells again. Groups of people are gathered along the roadside – it’s 1am ish and there are so many people - cooking chicken on coal stoves and it dawns on me that this is street food.

My oh goshes become oh wows as I see people and furniture piled high on the back of boda bodas (small motor bikes), and start pointing at things that Jimmy will have seen every day for his whole life. The equivalent of somebody pointing out a Corsa. Women in tight patterned dresses and big earrings sit side saddle on the back of the boda bodas, so casual, so cool, such core strength. The boda bodas glide around each other and around Jimmy’s car, while I look like Mr Bean in the passenger seat.

We arrive in Makindye house at 1:30am where I’m to stay. The guard, Bosco, greets me and shows me around. He’s working the night shift and we chat briefly about the perils of trying to sleep in the day. The word ‘guard’ sounds serious and gun toting. Thankfully Bosco doesn’t appear to be either of those things. He is welcoming and knows of Sheffield from the Premier League - and knows Sheffield United might get promoted. Bosco supports Manchester United and I look forward to asking him how he feels about Ronaldo but I'll save that for other day. He shows me patiently where to go and what to do since I’ve forgotten how to function. My bed has a mosquito net on it and like an idiot I ask how I get into it (you lift is up).

The house is beautiful, high ceilinged – I love a high ceiling and regularly consider bashing the ceilings in on my two-up two-down terrace to have two really tall rooms… and nothing much else. I go to wash my face and there is no water in the bathroom. I creep round the kitchen, no water in those taps either. I clean my teeth, take two Nightol and take my sticky and stinky self to bed. With the lights out it is pitch black. I’ve forgotten what that is like. I put my hand in front of my face to test it, I see nothing.

10th February.

I think I’m gonna like it here (Annie, The Musical, 1982) - Honey I Blew up the House Plant - I think I’ve peeked too soon

I wake up at 10:30, slide on my sliders and go outside. What an outside. I meet Claire and Chris who I’m staying with. Claire is a teacher from Sussex who has been in Uganda for 30 years and Chris is a conservationist. I see Uganda in daylight for the first time. Claire points things out to me: I can barely keep up and am still trying to take in one natural wonder as she points to the next, as though she’s showing me round a bedsit rather than paradise: ‘bathroom's here, washer's here, sink's here but the hot tap is a bit temperamental’. There’s a Monstera plant as high as my house. A butterfly the size of a Chihuahua. An Ibis bird, fresh from Jurassic park, the avocado tree, the mango tree, a jackfruit tree with torso sized fruit hanging off it. The view of Entebbe from the patio alone deserves hours of quiet contemplation, like we do with the view from Meersbrook. Claire and I click immediately and chat over fruit salad and coffee. I think of all the people who thought I was brave coming here and feel a little fraudulent, especially now that the water's back on.

I am relieved that I’ve got a good amount of time to let all this wonder sink it.

In fact everything that happened today all felt a little too good. If everything that happened today happened in the space of a year I would have been pretty content.

After breakfast Claire drops me off at the hospice to meet my new colleagues. I arrive at a farewell party for Francophone clinicians who have come for a three-week palliative care course. They’ve come from French speaking African countries to study at Hospice Africa’s Palliative Care Institute.

I join the buffet and meet some clinicians. There’s a cardiologist from Benin who took the palliative care course to improve cardiology and palliative care relations at his hospital. A sociologist also from Benin who runs a charity supporting older people to live more independently with their ‘taches de la vie quotidienne’ (activities of daily living). Dianah, a Ugandan nurse and practice educator, who has been teaching herself French for the last five years in order to deliver this course to Francophone Africa. I am in the company of some tres impressive people.

This continues. I meet Heather and Stephen, a power couple from Nottingham who now live in Senegal and work with Hospice Africa and Mercy Ships. Stephen is a GP and Heather speaks French and together they support palliative care education in Francophone Africa.

We go to Dr Anne Merriman’s house to join a party being thrown for nurses who are on a palliative care degree programme, again at the institute. Dr Anne is the founder of hospice Africa, she came over in 1993 when she was in her 50s, saw a need for palliative care so established a hospice. She is now in her 80s, as passionate and as brilliant as ever. Dr Anne delivers a rousing speech about palliative care. I want to bottle it up. Every word is golden. She touches on the tension here between money and palliative care which I need to find out more about. The fear of addiction when prescribing analgesia. The challenges in establishing a hospice in Uganda when palliative care was perceived as euthanasia. She talks about people studying medicine so that they can go into government or abroad so there are very few medics here and it is therefore important to invest in the nursing workforce. The nurses vow to continue the mission to spread palliative care in their workplaces and, indeed, countries. She had me at hello.

I chat to the nurses about their work: one is a research nurse, working on rituximab trials for MCD a cancer from HIV, another nurse researches factors influencing morphine prescribing, another nurse is on the course so that she can take the teachings and influence a palliative care pathway back at her hospital, there’s an ANP who performs minor surgeries. I ask what minor surgeries are and she says things like finger amputations. Angel, that doesn’t sound so minor to me.

I don’t know if I thought I was going to be able to offer anything here, and if I did then I didn’t know exactly what. But had I come out with any ‘noble’ imperial goals to teach and preach and ‘show how it’s done’, it is at this moment that I would have had to reconsider. I do like to think I am a solid - a sturdy - nurse who has learnt palliative care from the best nurses and I will make myself useful as another pair of hands, ears and eyes.

Things become almost too much for me when it is announced that the nurses will dance to traditional music from their country. Now, if I was going to cut myself in half and bleed anything it would be:

1. that I think I’m French,

2. my love of nurses doing good things and

3. that I also identify as a dancer (I go to Dance Revolution on Thursdays).

And today I was handed all of those things. Of course I loved the dancing, I loved how there was no hesitation to get up, the nurses coolly shimmied away to music from Kenya! Malawi! Zambia! Zimbabwe! Uganda! All announced as if in the Eurovision Song Contest. The nurses from each country would start each dance for a couple of minutes and then the rest of us would join. I side stepped excitedly waiting to join them, like when a bride and groom do a first dance and beckon the guests on. It felt so happy.

The night ended with chatting to Mary, a nursing student, about the differences between nursing studies in the UK and Uganda, boda bodas and, where all my conversations tend to end up: societal pressure to get married and have children and the character traits of Aquariuses/Aquariai.

Party at Dr Anne's!

12th February.

Los Doctors Americanos

Four doctors join our (me, Chris and Claire) happy family. Two older and two younger. They are from New York. I join the older two, Randi and Howard, who are esteemed academics at Cornell and work in Prespertarian hospital, for a Chardonnay on the patio as the sun goes down. Man alive I wished I’d been able to record them. It might be because it is only through recordings that I recognise the American accent – on a TV show/movie/song/podcast – and have heard it relatively few times in real life. Or because they speak slowly and well and don’t start sentences with ‘erm’ or interject them with ‘you know’s or finish questions with ‘then’. Most likely though it is because they are interesting.

They’ll be joining me at the hospice tomorrow. They have been coming to Uganda for the past ten years to support and learn from palliative care teams here.

In their experience it is communication that is at the heart of any difference between palliative care in the USA and Uganda. In the latter, they say, it is a lack thereof between patient and clinicians and things are more paternalistic. They give examples of doctors hiding from the families of deceased patients because the families weren't expecting a death, and of nurses telling families that ‘of course they’ll pull through!’ when someone looks to be in their last hours or days of life. It remains to be seen if my experiences will attest their theory.

As a result of their observed communication disparities, Randi and Howard have developed a communication programme with Dianah – the practice educator who taught herself French – to deliver over the next couple of days.

I try to ask questions that make me sound informed, like: ‘are palliative care services well integrated at your hospital?’* ‘To what extent do you find pain is linked to expectation and do you think there is a sociological element to pain?**’ and feel quietly chuffed when they validate my questions with answers rather than ‘sorry what?’. I also want to ask less smart questions like ‘do you live near Carrie Bradshaw, then?’ and say things like ‘NEW YORK! Tell me EVERYTHING’. I note that they pronounce Uganda like: Y’-gorn-da, whereas I pronounce it like: You-gan-da. I keep this in my head because we are not in Love Actually.

*not great in transplant, a bit better in surgical, a bit better but still not great in oncology and the best in paeds and medical

**they think it is

We talk about our respective palliative care teams and the integral role of the Chaplaincy and I tell them that my experience of the USA was when I worked in a posh sandwich shop in Nantucket 11 years ago. I was bloated, red, covered in mosquito bites and wearing a baseball cap while streams of perfect perfect people told me which sandwiches they needed. They say this is not real America.

I believe this scene resembles something on a veranda – in a movie of course – in the Deep South. The sunset, their drawl, the cicadas. As I say, I live in my head.

13th February.

It was my Birthday yesterday (today)

I had my breakfast on the patio where I bumped into Larry, one of the young NYC docs. He tells me that his partner is from Huddersfield and his housemate is from Hull - a real Sheffield sandwich - and we talk about And Just Like That and how Larry has just missed out on seeing them filming by minutes.

Larry goes and Howard strolls around the corner:

‘Good morning. You know, good morning in Lugandan means ‘did you sleep well?’ So, ‘did you sleep well?’

Straight out of a movie.

I walk to my first day at work with St Luke’s tote bags full of stoma bags and bandages. It’s nice and early so the boda bodas aren’t out yet and it feels quite peaceful. There are a group of people doing exercise alongside the grass verge along the road and my shadow is bright and long along the red ground and it’s a good moment.

The day starts with everyone praying outside and singing a hymn and then I have a tour around the hospice, sign a NDA, meet the entire team then sit in on a leisurely nursing and social work handover. The meeting takes an hour and goes into depth about the patients the team saw the previous day. I look at the paper work that the nurses complete on admissions and note how similar it is to our own, albeit with a more culturally appropriate pain scoring system.

Then I go to Randi and Howard’s teaching session along with a group of nurses. When they were last in Uganda they had a documentary maker following them around filming their work with patients. Where’s my documentarian?, I wonder. They have since turned some of the footage into shorter videos showing difficult conversations and breaking bad news. The clip I see shows a man asking Randi who has spinal cord compression if he’ll ever be healed and if he’ll ever walk again.

The conversation that follows discusses the merits of a direct approach – avoiding euphemism and using words like ‘death’ and ‘cancer’ is appropriate, ‘I wish’ and ‘I worry’.

After lunch: big vats of rice, bananas, ground nut sauce, beef stew, avocados slices, I have a meeting with Dianah. We discuss how I might spend my time here and she invites me to participate in a report she’s doing: questionnaires about advance care directives have been sent out to clinicians around Africa and she’d like me to help analyse the returned questionnaires. Of course I agree.

Dianah also tells me that I should slow down. In Uganda, Dianah explains that there is a much slower pace. People here walk more slowly, and talk more slowly. I am not slow. I’m an unfair combination of frantic, often late and inefficient. Dianah said when somebody saw me bounding into the hospice this morning they thought something was the matter, such was my pace. I will be so happy to try and slow down.

In the evening I go to a party held for Mary, Molly (two of Dr Anne’s family) and me as it is all of our birthdays. WHAT have I done to deserve this? We have a beautiful cake with our names on and sing happy birthday and oh my gosh I have never been so humbled by the kindness I’m experiencing. Dr Anne’s house is wonderful. It is full of animals: she had 11.5 dogs on Friday, on Monday this is now 10.5, but tomorrow it will be 11.5 again with an expected new addition. There are cats, I don’t know how many. Dr Anne lives with her big family and has visitors coming and going constantly. A GP from Amsterdam has swung by for a night and Hannah, Dr Anne’s niece, has just arrived from Hackney.

I get very reflective around the time of my birthday and think too much about where I should be in life and what I should be doing and how much I have or haven’t achieved. On this birthday I am not like this. I feel … today. Not because I’ve been in a different country for all of two days and am a changed woman, no. I’m bad but not that bad. But because I don’t know what tomorrow will look like, or what the weekend will look like, or what Kampala looks like, or what I’ll be doing or seeing over the next 7 weeks before I’m home. I’ve got a lot to get through experience before I can allow myself the luxury of spiralling and planning and justifying or cursing my life choices in a café Nero.

I don’t know what I thought my 34th birthday would have looked like on my 33rd, or ten years ago on my 24th. If I had thought about it I definitely don’t think I’d have expected it to look like this. But I feel very very happy that it does.

The Walk to the Hospice

Another Party

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