MarySmith’sPlace – Cancer diary #02

September 13: I am still stunned – and deeply touched – by the number of messages of support and good wishes both on the blog and sent privately since I posted about my cancer diagnosis. Thank you, all.

I met the oncologist on September 07. I didn’t sleep much the previous night and couldn’t settle to anything in the morning before the afternoon appointment. I felt as I imagine a prisoner in the dock might have felt when the judge donned his black cap to pronounce the death sentence.

My friend Willow who blogs HERE, has a wonderful pair of kick-ass, confidence boosting red shoes. I don’t have red shoes but I have some black ankle boots with similar properties so I wore them and before getting out the car at the hospital I reached into my bag for some confidence-inspiring lippy. Then remembered I was about to put on my mask.

The DH came with me and we asked to record the discussion. It’s just as well we did because despite there being two of us listening and asking questions and my note-taking (which dwindled when the names of drugs I can’t spell started being bandied about) by the time we got home we’d forgotten a lot of what was said. It’s been so helpful to listen again so there’s my top tip for anyone about to have a similar discussion with a doctor – record it.

She started with a résumé of how all this began and what had been done, how I was feeling physically, how things had changed. I admitted I do feel my fitness levels are definitely dropping, mainly because the weather has been so crap and I’ve not been walking so much, never mind what’s going on in my lung.

At least the cough I’ve had since the bronchoscopy has more or less gone, thank goodness. It was one of those dry little coughs which if I’d had to listen to someone else doing it I’d have become so irritated I’d have had to leave the room. The only sour note in the entire discussion was when she said she was sorry I’d had such a traumatic experience with the bronchoscopy but other people don’t. I felt like saying that actually, it’s only because I’m so gobby I do say what it is really like for the patient.

She examined me and showed me the tumour and affected lymph nodes and went on to list my options. I can choose to do nothing, in which case I may have a few months. I don’t know at what point during those few months I would become really ill and not have much quality of life left.

The other options are chemo (again those names of drugs I couldn’t spell – pemetrexed and carboplatin) to shrink the tumour followed, if this happens, by radiotherapy. Or, I could opt for those drugs plus pemobrolizumab, which is an immunotherapy drug. There would be no radiotherapy although at some point I could stop the immunotherapy drug and have radiotherapy but couldn’t go back on the drug again.

I said I couldn’t decide there and then and needed some time to think. She agreed and suggested I take until the end of the week. She asked the cancer specialist nurse to give me a B12 injection and a prescription for folic acid and some steroids to be taken the day before, the day of and the day after the chemo and to book a slot for the end of the following week so if I decided on one of the treatment options everything would be in place. Oh, and I’ve to self-isolate as has the DH.

We didn’t discuss it that night. Even the next day, the DH and I sort of mentioned it in passing but we did talk more about it later. I’d agree to speak to the nurse on Thursday as she doesn’t work on a Friday but by Wednesday I’d made my decision and was planning to call her, because on Thursday I was meeting my friend Sue Vincent at Cairn Holy – except that Sue never left home after being told her X ray results needed further immediate investigation. She has ‘something’ in her left lung; my ‘something’ is in my right one – we’re a pair of bloody bookends!

The nurse phoned me on Thursday; I told her my decision was to go for the standard chemo followed by radiotherapy. She said she’d see if there was a slot available for the end of next week. In the meantime I should organise for bloods to be taken. On Friday, I phoned her colleague who checked and said, yes, there was a slot on Friday 18 at 11.30 and I’d need an ECG done before so could I come in earlier.

All being well, my next update should be after I’ve had my first dose of chemo; a step into the unknown. I’ve never in my life wanted to do a parachute jump – my stomach goes into freefall just thinking about it. And now I feel as though I’m about to jump out of a plane hoping that a) there really is a parachute strapped on by back and b) it actually opens.     

 

MarySmith’sPlace – Cancer Diary #01

September 06: I’ve been dithering for a while about whether or not to blog about this but decided what the hell, it’s my blog and I can write what I want. Writing helps me to process what’s happening – and a lot is happening right now, the biggest of all being a lung cancer diagnosis. I’m still trying to get my head round it.

I was whipped into hospital on July 06 with extreme breathlessness, which my GP suspected was caused by pulmonary emboli (blood clots in my lungs). Blood tests and CT scan very quickly showed he was correct. I was put on Dalteparin injections to dissolve the clots.

Then a consultant appeared to tell me during the scan a ‘mass’ was seen in my right lung, which would need further investigations. I asked if it was perhaps an old shadow from when I had TB many years ago. She shook her head. I said: “You think it’s cancer, don’t you?”

“Well,” she said, “as you have introduced the word to the conversation, yes, there is a distinct possibility it is cancer. However, we won’t know until we do more tests. We’ll do another scan tomorrow to check there is no involvement in other areas such as pelvis or liver. The next step will be a PET scan in Edinburgh.”  

With no visitors allowed I could only talk to the DH on the phone. Neither of us really knew what to say or think. We say goodnight. I find myself in tears. I don’t want to have cancer. I don’t have time. I have more books I want to write. Will I have time to even get one finished? How am I going to tell my son? He’s coming home for my birthday soon – first time we’ve seen each other since before lockdown.

The nurse I’ve mentally named Miss Hostility-and-full-make up goes by the window and turns away pretending not to notice I’m upset. That stops my tears. Later, when she comes to do the final observations I ask if it would be possible to have two paracetamol. “I’ll see what I can find,” she replies.

I do not say. “This is a fucking hospital – there must be headache pills available.”

The second scan doesn’t show up anything lurking in my liver. Felt ridiculously pleased about that.

July 29: I had the PET scan (Positron Emission Tomography). A radioactive glucose tracer is injected which is attracted to any ‘hot spots’ in the body.

August 04: The consultant phones me to tell me the lesion and some lymph nodes in the chest are positive, as expected. She says tiny lymph glands above my collarbones also show signs of uptake.

August 12: This day will never be forgotten! I’m getting ready to head to the hospital, after a sleepless night worrying about the bronchoscopy when someone phones to say the bronchoscopy has to be cancelled. It can’t be done unless the patient has had a negative Covid-19 test within the last 48 hours. There’s nothing to say so on the appointment letter. Another consultant phones and tells me to come into the hospital and he’ll arrange the Covid test. While waiting for the technician Dr X shows me the slides from the PET scan. The tumour is enormous, taking up a huge amount of space. It is, he tells me 7cm. He answers my questions, explains about targeted treatments, radical treatments and mentions something suspicious on my spine.

After my Covid test is done I go outside to wait for the result. I feel healthier than I have done in ages. I can breathe. I’ve stopped coughing, the sun is shining. I wish I could’ve stopped time just there, just then.

The radiologist who had hoped to do an ultrasound biopsy of the tiny lymph nodes said they lymph nodes were smaller than his smallest biopsy needle and he was not going to attempt a biopsy.

Next came the bronchoscopy to take tissue from the tumour in my lung to enable them to determine what kind of cancer I have and to work out the specific mutation to enable targeted treatment.

It was sheer hell. They put water in your lungs. I thought of Suffragettes being force fed, of prisoners being water-boarded. I thought if having cancer was going to involve more of this kind of thing then it was time to revise my position on legalising euthanasia – something I’ve always been against.

I didn’t sleep that night. It was the hottest night of the year and I was frozen. I replayed the horrors of the bronchoscopy over and over and over.

August 19: Dr X phoned to tell me my cancer is Adenocarcinoma. The genetic makeup hadn’t yet come through. He says he’s a bit worried about there not being enough tissue. I tell him I’m not having another bronchoscopy. They can put me to sleep and harvest everything they need while I’m under general anaesthetic. He will talk to the surgeon in Glasgow. He wants me to have an MRI scan on my spine and another CT scan to check there’s nothing on my brain.

August 25: I have the MRI and two CT scans – one for the brain and one to see if the collarbone lymph nodes are any bigger. I was lucky to get cancellations because the appointment letter was for September 11.

August 28: Dr X phones – no cancer in my brain or my spine. Yay! The tiny lymph nodes are no bigger. Unfortunately the tumour in my lung has doubled in size and has now collapsed the top part of my lung. Also, they can’t work out the mutation of the cancer cells because enough tissue had not been taken. There is no more talk of targeted treatment or radical therapy. Dr X tells me the oncologist will now consider standard treatment of chemo followed by radiotherapy. I’m stunned by the implications of all this. September 04: The oncologist’s secretary phones this afternoon to offer me an appointment on Monday 07 – a full two months after the tumour was found; a tumour which is growing at a terrifying rate.

MarySmith’sPlace – Afghanistanadventures#39 – Learning who’s who at the Lal clinic

Lal October 1989

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After the excitement of arriving in Lal I experienced a sense of desolation when Khudadad left next day. Although we’d been travelling companions for barely two weeks, not only had I come to depend on him for so much – from ensuring I was well fed to finding a bed for the night – but I’d truly enjoyed his company. As the truck pulled away I stood forlornly clutching the huge melon he had given me as a farewell gift, waving until he was out of sight.

Stocktaking and updating the record cards of leprosy patients seemed such mundane chores compared to the excitement of travelling, never quite knowing what might happen or where we would end up. Having to begin all over again getting to know a new group of people none of whom, apart from Qurban, I had ever met before was daunting.

The clinic was a depressing place with dark, poky little rooms whose tiny windows allowed in hardly any light – a common design feature in houses throughout the area, to insulate them from the bitter chill in winter, when temperatures drop to -40C. Qurban had done his best to improve the appearance of my room, which was the size of a cupboard, by lining the crumbling walls with orange cloth. When I was in bed, a colony of mice staged athletics events behind the cloth, occasionally venturing out to scamper across the pillow. Qurban was negotiating over the price of a piece of land on which to build a new clinic, something I hoped he could accomplish quickly.

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Entrance to the clinic

I began to sort out who was who amongst the staff. Ibrahim was in charge of the dressings and injection room where he did the soaking, trimming and dressing of leprosy patients’ ulcers, as well as attending to other wounds and injuries. As two of his nephews had both been my English students in Karachi where they were trainee leprosy technicians, I happily accepted Ibrahim’s invitation to visit his home in Waras sometime, as I had promised the boys I would try to deliver their letters personally to their families.

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Qurban, his brother Bashir and a patient (name has escaped me)

I’d already been invited by Qurban to visit his family’s village and Haboly, the general medical assistant, was insistent that I must also visit his. Invitations quickly followed from Aziz and Rahimy and my social calendar was soon completely filled for all foreseeable weekends.

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Ibrahim on the camel on the right. Camels were rarely seen so far north

Rahimy had been a mujahid but retired from their service, cheerfully returning his Kalashnikov, to work in the clinic as a field assistant where he was paid a regular salary and was less likely to be shot at. Wounded in a skirmish, the injury had left him with a permanent disability in one hand. He was such a quiet, gentle person, demonstrating a genuine concern for the patients, it was difficult to visualise him in his former role of gun toting freedom fighter. Rahimy was to come with us to Pakistan to attend a laboratory technician course over the winter. The second field assistant, Juma, would then, the following summer, begin his training in Karachi as a leprosy technician.

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Patient on right and some of his family

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Me being maternal with a baby securely parcelled up so it didn’t wriggle

Every morning patients gathered early outside the gates of the compound. Many travelled for hours by foot, or by donkey – by horse, if they were better off. Some took two days or more to make the journey from remote villages and, most days, around fifty patients arrived to consult Qurban and Haboly. They arrived well prepared for a long wait, bringing with them kettles and dry tea and nan, along with fodder for the horses and donkeys. Children found new playmates with whom to pass the time, chasing each other amongst the groups of adults and around the tethered animals. The scene resembled a country fair and in fact, in the days following the clinic’s initial opening, one enterprising man had opened a temporary chaikhana to cater for the crowds.

 

In addition to these “general” patients Qurban had a case load of around two hundred leprosy patients scattered across his extensive control area. He had an almost equal number of registered tuberculosis cases. It was too much for one leprosy technician to cope with so Qurban was keen for Juma to start his training as soon as possible to lighten the load.

Tuberculosis patients caused the greatest concern because of the rate of absenteeism, and lack of personnel to follow up missing patients. The effectiveness of the tuberculosis drugs in some ways works against controlling the disease in Afghanistan – and other developing countries – because soon after a patient begins his treatment he feels well. Believing he is cured, he discontinues the medication. If he is being prescribed drugs by a private doctor the cost for the full course of treatment is prohibitively expensive and, understandably, the impoverished patient has other uses for his money. The biggest danger, when a patient stops taking his medicine before all the bacteria has been destroyed, is the remaining bacteria mutate into a new strain, resistant to those particular drugs.

When news spread a foreign doctor had arrived the numbers of patients, especially women, increased. Despite Qurban’s cajoling I refused to play at being a doctor. ‘In my country a person would be sent to jail if caught pretending to be a doctor. It’s too easy to make a wrong diagnosis or prescribe the wrong drugs. I’m happy to check female leprosy patients and talk to mothers about nutrition and family planning but I’m not going to pretend I can do anything more than that.’

Qurban laughed, ‘You are not in your country now. The people here are desperate for medical care. Anyway, everyone in this clinic is a doctor, even the cook!’ I’d heard the cook being called Dr Aziz but had assumed it was simply a term of respect. I hadn’t considered the possibility that he might actually prescribe medicines for people and was only slightly reassured to discover he confined his prescribing to aspirin and vitamins.

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‘Dr’ Aziz, the cook

We finally agreed I would do the stock taking, write my reports and carry out leprosy examinations on female patients. I’d be available to talk to women about nutrition for their children and for themselves in pregnancy, to explain how contraceptive pills should be taken or to teach a woman how to work out her fertile days. The dwindling number of female patients soon made it clear the women were not interested in hearing a foreigner talk about mashed potatoes and greens for their children, and had no magic drugs to make their babies strong and healthy.

 

MarySmith’sPlace – Afghan Adventures#31 Women’s health, women’s work, women’s place in the scheme of things

Next day, I spent the morning in the women’s clinic with Zohra. I was embarrassed at finding it difficult to understand the women who fired questions at me, making me feel my command of the language was still pitiful. In my defence, their accent was very different from that of Jaghoray.

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Besides those patients with diarrhoea or throat or eye infections, several women had come for ante-natal check-ups. Two had vaginal infections, one, a prolapse of the uterus; four wanted contraceptive pills while another desperately wanted to become pregnant. Most of Hussain’s female patients complained of a mixture of infections of eyes, throat or chest. Apart from the occasional woman who complained of burning urine, he rarely had any patients with gynaecological problems. Afghan women simply cannot discuss such intimate problems with a male health worker, never mind allowing a physical examination. A great many women suffer appalling health problems in silence.

Islam teaches that women should be modest in dress and behaviour but, somewhere along the line, this has been reinterpreted in such a way that modesty has given way to women feeling a terrible sense of shame women regarding their bodies and reproductive systems. The Prophet Mohammed (PBUH), in his teachings, surely never intended women be denied medical help, nor be allowed to die before exposing the most private parts of their anatomy to a male doctor?

As long as the words of the Prophet continue to be interpreted, in the rural areas in particular, by illiterate misogynists, women will always be denied rights – and the west will continue to misunderstand the teachings of Islam.

The nearest hospital which could provide obstetric services was in Kabul, a journey which could take two or more days depending on road and transport conditions and whether there was fighting along the way. A woman needed a male escort but going to Kabul was a dangerous mission for young men who risked being press ganged into the Afghan Army.

In the afternoon Zohra introduced me to her neighbours, Gul Chaman and Fatima, who lived below Zohra and Hassan’s house. Since their husband, despite the protests of Gul Chaman, had taken Fatima as his second wife ten years previously, the two women had not spoken to each other. Gul Chaman, with her children, occupied one room of the house, Fatima and her brood, the other. A strict rota system had been instituted for conjugal visits – and for the use of the tandoor in which each wife baked the bread for her own family. Hostilities between the mothers did not extend to the two sets of children who played together, receiving comforting cuddles for scraped knees and bloodied noses from whichever mother happened to be nearer at the time.

Making bread

Bread straight from the tandoor. On the left fresh pasta called ‘ash’ I should maybe say this and the next photos are not from Sheikh Ali but from a different place on my travels.

When it was her turn for the tandoor, Gul Chaman showed me how she baked bread. As the heat inside the oven was tremendous she wore a long, very thick leather gauntlet on her arm.  She would reach right into the furnace to slap the prepared rounds of dough on the walls. When done, she hooked them out with a metal rod. The smell of bread fresh from the oven is one of the most delicious things in life.

Not to be outdone, Fatima gave a display of weaving the brightly coloured gilims and laughingly persuaded me to try my hand. I soon realised this was not a skill I could master – my inexperienced fingers proved to be all thumbs, and totally uncoordinated. It was slow, tedious work and even with three or four women working together at the long frame it could take a month or more to complete one gilim.

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Working on carpets

After clinic was over for the day, Zohra often had friends visit for tea and chat, but she admitted in the last year she had been out of the compound only twice, once to offer condolences when someone died and once to attend a wedding. I was unhappy when I realised I was expected to behave within the prevailing standards set by Hassan. When I mentioned going to see the bazaar the suggestion was swiftly vetoed, ‘There’s nothing to see in the bazaar, this is a poor village. If you need anything I can get it for you.’  It was the same whenever I enquired about Khudadad. ‘Don’t worry. He’s fine. He’s happy.’ Whenever I asked Hassan about transport he would tell me not to worry. Then he would embarrass me by asking if I was not happy in his home, was I not being looked after properly and was there anything I needed to make my stay more comfortable?

I was happy to spend time with Zohra listening to her stories about the work she did to improve the women’s health but there was really no work for me here and I was anxious to reach Lal.

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Spinning wool

Choosing a time after lunch, when I assumed Hassan had left on one of his undisclosed outings, I slipped into the guest room. Khudadad gave me a huge grin. ‘Where have you been?  When are we leaving?  I am very bored here!’  We managed about three minutes of conversation, centring mainly on the fact that Hassan seemed not to be trying to find transport to Lal and did not want Khudadad to wander about the village by himself before Hassan’s soft voice made me jump.

‘Is anything wrong?’ he asked, from just inside the door.

‘No, nothing. I just wanted to talk to Khudadad. I haven’t seen him since we arrived.’ Hassan sat down and I understood that he was not going to allow me to sit alone with Khudadad. As his guest I felt I could not make an issue of my freedom being so curtailed. Conversation rather dried up and, after a few moments, I rose to return to the family section of the house. I wondered if Hassan thought that, if left alone together, Khudadad and I would immediately fall on each other in an ecstasy of unbridled passion. What did he think happened when we slept in roadside hotels without a third person to guard our morality?

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Washing sheep’s fleece before spinning. 

One day, a beaming Hassan informed me he had arranged for a jeep to take us to Bamiyan, the following day. We were to be ready to leave at the usual setting out time in Afghanistan – four o’clock in the morning. It seemed a bit excessive. Bamiyan was only a three hour drive from Sheikh Ali – as did Zohra’s contribution of hard boiled eggs, chicken and dried fruits and nuts.

The driver never showed up. We ate the hard boiled eggs for breakfast and had the chicken for lunch and Hassan was very apologetic about it all and promised to look for another driver.

 

MarySmith’sPlace – Afghan adventures #22 with fighting and kidnappings

Now we were living on the building site work on the new clinic was speeding up and patients seemed unconcerned about the makeshift consulting room. I still spent part of the day writing out case notes and prescriptions. It was good practice for my language skills and could listen to the gossip – even if I did still need Hussain to translate much of it.

Much of the talk was about the fighting which had recently taken place. From what people were saying it had been more than the usual inter-party skirmish and several days of heavy fighting had resulted in casualties, both dead and injured, on both sides.

We decided to visit the Qolijou hospital.

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Qolijou Hospital from the mountain behind. Built at a time Soviet air strikes were a possibility, it’s well camouflaged

The grounds were swarming with mujahideen and a weary Rosanna was in the outpatient department.

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A group of mujahideen posing for their photo – they don’t usually point their guns at each other!

She and the translators had been kept busy patching up the wounded. The stranger with her introduced himself as the “prisoner doctor”. He was an Egyptian surgeon, brought to the hospital to operate on one of Nasre’s men, critically injured in the fighting. I had heard of four foreigners who the Nasre Party had kidnapped a year earlier. They had been sent by an Islamic Arabic organisation to work on a programme it was funding in a Pushtoon area.

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The ward in the hospital

En route they, three doctors and a teacher had been taken hostage. No one seemed to say with certainty what Nasre hoped to gain by this, nor even if negotiations were taking place. Some said Nasre wanted money, others believed the Party was demanding the organisation should build and supply a hospital for Nasre in Hazara Jat. Until meeting the Egyptian doctor I’d never known whether to believe the story or not.

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What can happen if picking up a landmine. This lad lost his sight and a hand.

We went to the staff room for tea and he was allowed to speak with us in English (there were enough Nasre spies amongst the Translators to report back if any attempt was made to pass on messages to the outside world). ‘Mostly our days are spent in a mountain cave, hobbled by leg chains so we don’t try to escape,’ he told us. ‘They took our watches and radios. Otherwise, we are well enough treated.’

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A bit luckier, only part of his hand gone after playing with a bomb

I’d hear one of the men had tried to escape and been shot but didn’t like to ask. The hostages had no idea if negotiations were taking place or what their fate might be, and that, along with their enforced inactivity, was the most difficult thing to bear. ‘We would be happy to use our skills but are not allowed. Only when mujahideen were in need of treatment are we asked for our medical knowledge.’

Following this last battle one seriously injured mujahid was brought to the surgeon who explained he could do nothing in the cave, the man required urgent surgery. Nasre commanders decided to bring patient and doctor, along with what looked like half their fighting force to guard the prisoner, to Qolijou where the necessary operation had been carried out. The surgeon was being allowed to remain twenty four hours in the hospital to care for the patient during the intensive, post- operative phase, and then he was to be returned to his mountain prison. ‘I hope,’ he added, ‘they will bring me back after ten days to reverse the colostomy. In the meantime, I shall try to convince Nasre to allow me, and my colleagues, to work here more often. We could do many surgical procedures, and teach the translators how to carry out the more simple operations. So much could be done for the people.’

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The hospital pharmacy

Unfortunately, the patient died less than a week later so, sadly, the “prisoner doctor” never returned to Qolijou. The hostages were, I heard, finally released, after about two years in captivity.

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The X ray room

I wish I’d known the outcome sooner. It may have had me less anxious when my husband, Jon, the programme co-ordinator was kidnapped in Jaghoray a couple of years later. I was six months pregnant in Quetta, Pakistan when I received the news. As I was thirty-six and considered rather old to be having a first baby – elderly primagravida, as they put it – it had been agreed (reluctantly in my case) I shouldn’t accompany him on a tour of the clinics in case anything happened. As it was I had no idea if they would demand money, keep him for months or years, or shoot him. He did get back to Pakistan before the birth of our son – but that’s a story for another time.

MarySmith’sPlace – #RussianJeep #Leprosy #AfghanAdventures 16

As the clinic was soon to have a vehicle, a driver, Jawad, was appointed. When, through his network of cousins and uncles he heard of a jeep coming on the market in Angoori bazaar he and Hussain went off one morning to check it out.

The noise of an engine signalled their return late in the afternoon and we rushed out to greet the arrival of a beaming Hussain and his magnificent ‘Model Konah’ Russian jeep. On the threshold I stopped, stunned into silence at the sheer frightfulness of the vehicle.

The windscreen was so adorned by garlands of plastic flowers and other shrubbery, the driver’s visibility was reduced to almost nil. The floral theme was continued by chintzy curtains at the side windows while, suspended from the front bumper, was a collection of chains and medallions, chiming and chinking in the breeze. When Jawad put the vehicle into reverse a female voice with an American twang proceeded to warn, ‘Attention Please, this car is backing up. Attention Please this car is backing up.’

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The jeep which became Hussain’s pride and joy

The enthusiastic spectators who had gathered welcomed the jeep, as they would a bride to her new home, by bombarding it with sweets.

Hussain so loved the chintzy curtains he at first refused to remove the side windows – they did not open, having to be completely removed – but when his passengers all became faint and nauseous from the terrific heat inside he did reluctantly allow the windows to be taken out.

Now he had transport, Hussain was eager to try to find a leprosy patient he’d received news of. By now he had registered two, previously untreated, patients who had come to the clinic but this man apparently lived in a village some distance away. We set off one morning to find him, with only the vaguest of addresses and directions.

At a fork in the road, Jawad stopped. The road on the right curved around the side of a mountain.  ‘That’s the road to take,’ said Ismail. ‘It’s a short cut which joins this road again on the other side of the mountain.’

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The road round the mountain.

‘Are you sure?’ asked Jawad. ‘It doesn’t look very wide.’

‘Oh, yes, even big trucks use that road,’ Ismail replied with great authority so Jawad turned onto the mountain track. Half an hour later, increasingly concerned at how narrow the road had become, he stopped, insisting Ismail accompany him on foot to investigate further ahead.

A shame faced Ismail re-appeared to break the news the track simply disappeared about a quarter of a mile further on. There was nothing for it but to go back the way we’d come.  Except the road was already too narrow to allow Jawad to turn the vehicle so we had an agonizing thirty minutes of American accented ‘Attention please, this car is backing up’. My suggestion of pulling out a wire produced such a look of horror on Hussain’s face the idea was quickly dropped. I nursed a slight hope the mechanism might self-destruct under the strain of overuse but the nasal tones rang out with what seemed to be an increasingly persistent warning. Finally Jawad decided that it might be better to risk falling down the mountain in the middle of a three point (well, probably six) turn, rather than witness his passengers have nervous breakdowns.

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Ismail assured us the road was wide enough for big trucks

Hussain asked everyone we met on the road, and in a village shop but no one knew of our patient. One man thought he knew of a person with leprosy and gave directions to a farm. The way was obstructed by a small river whose muddy banks were too soft to bear the weight of the jeep so Hussain and Ismail continued on foot to the farm, returning after almost an hour looking thoroughly fed up. Eventually Hussain had to admit defeat and abandon the fruitless search.

A whole day wasted, leaving us tired and with a guilty niggle that perhaps we had not done enough to find the missing patient. Perhaps he was afraid his neighbours would ostracise him if it was known he had leprosy and he didn’t want to be found. To cheer everyone up I introduced the game of ‘I Went to Market and Bought’ which, played in English, soon had everyone laughing as they struggled to remember the ever lengthening alphabetical shopping list.

A second outing, to the home of one of the newly registered leprosy patients was more successful. The family were obviously very poor and the room in which we sat, although spotlessly clean, had nothing more than one threadbare gilim on the floor and a bright red geranium in a pot on the windowsill. The patient, Moosa, had been referred to Hussain by a doctor in Angoori bazaar – one of the few doctors in Afghanistan who knew anything about leprosy. Moosa had long been suspicious the tell-tale anaesthetic patches indicated the dreaded disease. Like many others, he had tried to hide the signs, afraid once it was known he had leprosy, he would be forced by the community to live as a social outcast. The doctor assured him the disease could be cured and sent him to Hussain.

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The jeep in all its glory!

At the clinic Hussain had explained how easy it was to cure the disease if Moosa took his medication regularly, and promised if he followed advice he need never suffer from the deformities which have made leprosy a disease feared throughout history. During the house visit Ismail began to teach the patient how to protect and care for his feet, showing him how to rub off the hard skin with a stone, how to soak and oil his feet each day to prevent cracks in the skin which, if left untended could cause ulcers.

While all this was going on I examined the women and girls in the family. This caused great hilarity, especially when one little girl ran away, screaming hysterically, convinced I was about to give her an injection. She was brought back and tearfully submitted to the examination after which she joined in the general laughter.

The family invited us to stay for lunch. None of us felt we should burden this poor family with the cost of feeding us but Moosa was insistent. Hussain whispered to me we should accept in case he thought we were refusing to eat with him because he had leprosy. There were many apologies for the humbleness of the meal but, served with simple dignity, the large bowl of yoghurt, crisp spring onions, fresh, warm bread and salt became a banquet.

MarySmith’sPlace – Afghan adventures (8)

The morning of the clinic opening Ali Baba had to lock the door to prevent eager patients from disrupting breakfast.

Too nervous to eat, Hussain checked for the hundredth time that all was ready. He’d asked me to sit with him in the clinic, write the prescriptions and make notes of things which needed to be changed. It would also be a good way to improve my Dari.

Hussain gave the signal for Ali Baba to open the door. Immediately, half a dozen men pushed and shoved each other into the consulting room, all talking at once. Using some pretty persuasive shoving himself Ali Baba eventually succeeded in evicting five of them and the victorious winner sat on the floor, beaming happily.

Hussain urged him to sit on the folding metal chair provided for patients. He, himself, was ensconced in a chair more appropriate to his exalted position.  It was a monstrous wooden armchair of peculiar design and proportions, “crafted” by the village carpenter to Hussain’s specifications. In fact, he very quickly realised it was totally out of place in the clinic and swapped it for a folding chair, which must have been less intimidating for patients.

The examining couch was of equally generous size, and so high that patients required the help of a chair to enable them to reach it. It became a useful diagnostic aid and Hussain often had to hide a smile as a patient who had been complaining of dreadful, incapacitating pains and weakness all over his body would suddenly leap with remarkable agility onto the examining couch.

An average of between forty and fifty patients arrived each day during the first week. This left little time for other work – accounts, reports, supervising the building work at the new clinic. As yet Hussain did not have any leprosy patients on his register but that would soon change.  He would inherit all patients living in Jaghoray who, until now, had been receiving treatment from the leprosy clinic in neighbouring Malestan.

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Hussain at work in his clinic

Many of the patients who came in the first weeks came mostly out of curiosity, wanting to see the foreign “doctor”. I tried in vain to persuade people to stop calling me doctor. Others came because, at last, they had a health service on their doorstep – one which dispensed free medicine. The clinic’s primary aim was to control leprosy in the area but because of the stigma attached to the disease we knew the people would not be happy about a clinic opening only for leprosy patients. We needed to keep people on our side if we were to be able to trace and treat everyone who had leprosy and could do that by prescribing medication they needed.

One major problem was that many of the patients, who showed up in the early weeks, had an obsession for medicines.  Injections were number one on the list of preferred treatments, considered to be the most effective (if it hurts it must be doing some good?), next in favour were syrups followed by multi-coloured capsules. Antibiotics in the form of plain white tablets such as Penicillin V were not thought to be of much use and aspirin or paracetamol were not even considered to be medicinal.

Hussain valiantly resisted prescribing unnecessary medicines but he was going to have to fight hard to win that battle. His entire reputation as a “good” doctor rested, not on effective health care, but on the amount of drugs he prescribed. In such a close-knit community, holding on to such principles in the face of plummeting popularity was going to be tough – especially for someone like Hussain, whose ego needed constant boosting. Occasionally patients became angry and abusive if not given a prescription, as though Hussain was denying them something that was rightfully theirs.

The days slid by quickly. I no longer reached automatically reaching for a light switch when dusk fell. I’d stopped trying to flush the latrine. I did wish it was possible to flush if only to hide my embarrassing pink poo. Some months before, while working in Karachi, I contracted tuberculosis and had been taking treatment (including Rifampicin, responsible for the pretty poo) ever since. I kind of knew that after nine months of regular treatment – and I was very good at “eating my medicine” every day – it was safe for me to stop. However, I also knew I should wait until I could have bloods checked in a laboratory so I was waiting until that could happen.

Unfortunately, I’d found I was sharing my room with things that went bite in the night. These proved to be tiny mites which lived in the mud walls. Ali Baba sprayed my room thoroughly with an insecticide lethal to all insects – and, presumably mankind, as it had long been banned in the west. Even by bedtime fumes still lingered but I did get a good night’s sleep. After two nights, though, the invaders returned in force to feast on foreign flesh and only if the room was sprayed every other day did we prevent the little horrors from enjoying me for their midnight snacks.

A constant battle also had to be fought against the horrendous flies which swarmed in the moment a window was opened. Baqul would organise fly eviction crusades. Everyone used their patou – the large shawl worn or carried by all the men, required for keeping warm, carrying shopping, wiping noses and a hundred other uses including fly evictions. Each member of staff charged around the room flapping their patou wildly at the flies until, unsettled and giddy, the flies would eventually find their way out of the windows.

The alternative, rather gruesome, method was to add some black Baygon powder to a saucer of water.  The flies found this concoction delicious and would swoop down to gorge, only to be seen moments later struggling in their final death throes. A saucer full of a couple of dozen dead or dying flies floating in black slime was a revolting, but horribly fascinating, sight.

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Threshing wheat – a timeless image and much nicer than flies in their death throes!