MarySmith’sPlace – Cancer Diary #04

Monday September 21: I have never experienced such excruciatingly painful constipation in my life. If you are squeamish about bodily functions you should skip this and move on down the post – it does get better. I don’t know if the chemo drugs caused it or one of the other drugs I have to take at various times including steroids and anti-emetics.

I’ve been devouring liquorice – vast quantities of the stuff. While out walking yesterday – walking is an excellent way to get the bowels activated – I had to find some suitable shrubbery to squat behind leaving my son to stand guard. I crouched and strained and struggled, eventually producing something about the size of a rabbit pellet. Re-emerged, not exactly triumphant, onto the path and noted a farm pick-up further ahead, parked directly in line of sight. I was very relieved to find, when we approached, it was empty. Walked on, worrying about the damage my toxic waste would do to the environment.

Today was worse, despite the liquorice consumed. I rushed to the loo so many times full of hope only to emerge later without having accomplished much more than the painful expulsion of another rabbit pellet or two. Miss Pilates class.

Tuesday September 22: I leave a message asking the cancer specialist nurse to call and when I ask which of my cocktail of drugs is the likely culprit she tells me it is most probably the anti-emetic. “Didn’t they give you a laxative to take home?” When I say no, she asks if I need something and what have I done to manage it. I explain about the liquorice. She offers to write a prescription for a laxative for my next chemo session but I tell her I’ll add stewed dried apricots and other high fibre foods to my diet and we’re laughing and joking – then I mention Sue and am in floods of tears over the phone and feel silly, but somehow better when I say I have to go and rescue my stewed apricots.

I think about the drug they give me to stop the nausea from the chemo combination and the ensuing agony (I really can’t emphasise enough how very, very painful) of the constipation and wonder just how bad the nausea would be without the anti-emetic. Am I brave enough to try? Or should I just make sure I have huge stocks of liquorice?

I’m tired and not sleeping well.

Wednesday September 23: Try to book in at health centre for my next pre-chemo blood tests on October 07 – but the booking system can’t work so far ahead so I’ve to try again next week. For some reason, it is the little things like this I find stressful. Manage to book an appointment to have my ear syringed – having a problem with ear wax on top of lung cancer seems a bit unnecessary, doesn’t it?

I drive to Cairn Holy and my son and I walk up from the bottom car park. It’s only half a mile, but it’s uphill. Watching a red squirrel playing in the branches provides a welcome pause. We’re almost at the top when I have to ‘go’ and dive off the path to crouch amongst the trees. I thought the constipation had gone, but clearly not. It takes ages to cover the evidence as I’m teetering on a very steep slope. I take some pictures to send to Sue Vincent. I find it extraordinary we both get lung cancer at the same time.

Thursday September 24: The most difficult question to answer these days is: “How are you feeling?” If it means how are you feeling physically now you’ve had your first treatment, I can say I’m all right, a bit tired but so far so good. If the question is referring to my emotions, then I have no way to answer it. I just don’t know. There is still some kind of disconnect which allows me to function without consciously thinking about having cancer and what it means. Let’s me go off to have toxic drugs pumped into my veins without thinking of all the implications. I thought of all the implications when the tumour was first spotted but seem to have left that thinking behind for now. I guess it is some kind of defence mechanism – like humour – to blunt the edges. Until I go to bed and can’t sleep and when I do I have strange vivid dreams.  

Friday September 25: I managed to get to Pilates this morning where the instructor and class had turned out wearing kick-ass boots. Shona read out the following:
Our Pilates lasses & lads stick together
We’re flexible, strong, tough as leather
Let’s use our boots with some humour
And kick hell out of Mary’s tumour! It made me cry – in a good way. As did the packet of Liquorice Allsorts posted through the letterbox.

Son and I had a lovely walk in the afternoon on a new (to us) path from Mossdale. For the first time since this all began, I almost achieved my 10,000 steps. Once upon a time, I’d have run up and down the stairs to gain the few hundred steps needed.

Saturday September 26: The DH collected the spring bulbs I’d ordered from the garden centre – planting them will be tomorrow’s task. Will I see them in flower? I daren’t say I think so but I hope so.

Sunday September 27: I had to start taking antibiotics on Friday for the two weeks up to my next chemo. Perhaps the constipation creating anti-emetic I will take then will counteract the diarrhoea the antibiotics is causing – or maybe I’ve eaten too much liquorice.

MarySmith’sPlace – #AfghanistanAdventures54 Winter travel

Afghanistan, December 1989, Day Mirdad

The delay meant we were a long way from our destination, when darkness fell. At the next check post the mujahid guarding the chain, tried to persuade us not to continue our journey. Jon thanked him, but said we must ensure our patients reached the clinic in Day Mirdad. The mujahid played the beam of his torch into the back of the vehicle. When he spotlighted Zahir, without his turban, he jumped back hastily and waved us on. Poor Zahir, for once, we were grateful for the terrified reaction he provoked.

At the next check post Jon tried the same story. The mujahid peered into the back, saw Zahir and said calmly, ‘Oh, a leprosy patient. Never mind, we can give you a separate room for him.’ Jon requested permission to speak to the Commander who opened the window of his office a grudging few inches. We watched as Jon talked, gesticulating occasionally towards the vehicle. We saw the Commander shake his head and give a brief reply. Jon tried again – the Commander slammed the window shut. We were not going to reach Day Mirdad that night.

We were directed through a gateway into a large, bleak compound. Crunching over the frozen snow, we reached our room, unwilling guests of the Nasre Party for the night. The room was frigid, my head was hurting and we were all cold and cross. A man came in to light the bukhari around which we huddled, morosely sipping tea. We had to ask twice for food before we were eventually served a quantity of greasy, grey liquid with a few pieces of very stringy, dried up meat. Not even Zahir could find anything to laugh about.

When I awoke in the morning I discovered I’d lain on, and broken, my glasses, my head was throbbing worse than ever and, when I learned, despite the fact we’d not exactly been willing guests, we were expected to pay for our board and lodgings I was furious. Determined to tell the Commander exactly what I thought of his shabby treatment of us I headed across the compound towards his office. Rahimy talked me down – otherwise we might still be there. With bad grace I climbed into our vehicle.

At least the day was crisp and sunny, which helped lighten the mood, as we headed towards Day Mirdad. We left the snow behind us, but it would soon catch up with us again, and we would have to complete the work in Arif’s clinic as quickly as possible. For Jon, it meant examining the accounts and handing over the money required for the running of the project through the winter months. For me, it meant interviews with Arif to collect information, statistics and stories about his work, to be included in reports.

Day Mirdad is situated between Pashto and Hazara lands. Arif was Pashto. Before the Soviet invasion had forced him to abandon his studies, he’d completed two years in medical college in Kabul. Arriving in Pakistan as a refugee, he somehow heard about the leprosy centre in Karachi, and was accepted as a candidate in the training programme. Arif and Jon had been class fellows in Karachi but were not close friends. As a Pashto, Arif could never accept coming second to anyone in anything, while Jon, south-of-England-born, had a similar arrogance. Somehow or other at the end of the training, each was able to feel he had done better than the other, and honours were even.  

As we approached the clinic the landscape became more desolate and barren. Grey, naked mountains rose on every side until it seemed there was no level ground anywhere.   Everything was on a slope; the buildings, the fields – tiny handkerchief sized patches of brown – the few trees growing sparsely here and there. Houses were hidden behind very high mud walls in which heavy gates were set. Occasionally we had a glimpse, through an open gateway, of the mud built homes, constructed like fortresses. Pashto women are even more jealously guarded than Hazara women who, by comparison, are allowed tremendous freedom.  

We drove through an imposing entrance into a large compound, on three sides of which was a two storey building. Arif came bounding down the steps to meet us, arms outstretched to embrace Jon in a welcoming hug.

Many are the tales of encounters between the soldiers of the British Raj and the fiery tribes from the Frontier Province, depicting the Pashto as tall, swarthy tribal chiefs, tangled black curls escaping from beneath their turbans, dark eyes flashing in challenge. Arif is nothing like those romantic heroes. Standing at barely five foot four he is stocky, has brown eyes which don’t flash particularly challengingly (well, maybe when angered) and a fair complexion. He is restless, excitable, unable to sit still for more than five minutes, and given to generous arm gestures when talking – which he does at great length and speed.

After embracing Jon he clasped my hand warmly, grinning, ‘Welcome, sister. I have many stories to tell you, but first we will drink tea.’ We followed him upstairs to the guest room which was large and sparsely furnished – a gilim which barely covered the floor and a pile of bedding. A Kalashnikov stood in one corner of the room, and when Arif saw me eyeing it, he rushed to give an explanation, ‘For protection, sister, for protection. When I go on tour Ashraf, you know Ashraf? My field assistant. He carries the Kalash – just in case. There are many thieves about, and maybe they think Arif has a lot of money because he works for a foreign organisation.’

We had stipulated weapons should not be kept on clinic premises by staff, a rule we suspected was frequently broken, although usually they had the sense to hide the thing before we appeared. I knew Hassan kept a Kalashnikov in Sheikh Ali, despite having made a big drama once about returning it to the local Commander. Now, he ensured we didn’t see it, but occasionally forgot, as when telling a story of being attacked by a wolf, which ran away when he fired his gun. He’d suddenly stopped talking as he realised he’d given himself away – then made matters worse by trying to say that he was just taking the gun home for a friend.  

If Arif felt he needed the protection of a Kalashnikov while on tour, often on foot, I felt there was little we could say against it but I could never really see the justification in having one in the clinic itself. If thieves broke in to steal the medicines, they would surely be well armed.  There would be a bloody shoot out which would most likely result in our staff being seriously injured, or killed – and the medicines would still be stolen. In this part of the world, however, men, from when they were still young boys, carried guns. It was expected. Only it used to be an old Lee Enfield which somehow seemed less of a killing machine than an AK-47 assault rifle.

MarySmith’sPlace – Cancer Diary #03

Monday September 14: I’d to give blood for testing before the chemo. I was a bit anxious because the nurse I spoke to on Friday said Monday was too soon, though I’d originally been told by the cancer nurse specialist to have it done on Monday/Tuesday/Wednesday. I phoned and left a message but went ahead with the bloods anyway. I got a call later in the day to say it was fine to have them done today. Such a little thing but I spent the day worrying if my first chemo would have to be postponed because of a mix-up/communication breakdown.

Having made the decision about which treatment plan to go with I find myself doubting and wondering if I’ve made the wrong choice. It’s odd. Since the start of all this I’ve felt I have so little control over what’s going on with tests and scans and being told I need this done and that done. Then, when it’s decision time, I suddenly have full autonomy and the decision rests with me. It’s more scary than odd. I’ll never know if I made the right or wrong choice.

I attend Pilates class on Zoom and feel better for it, especially as I missed last week’s classes because of Monday’s meeting with the oncologist and double booking myself on Friday. When I assumed I would be lucky to see Christmas I’d started sorting out books and arranged to take them to a bookseller in Wigtown so if anyone is looking for Scottish titles you’ll find some good ones at Beltie Books. Now I think I might get past Christmas I’ll have to stop myself buying them back!

Thursday September 17: To distract me from thinking about tomorrow my son and I sign up for a bagel making workshop on Zoom, run by my friend Barb who blogs HERE. In the middle of it someone phones from the hospital to ask some questions before tomorrow’s treatment. One question is about dental work and I say I have an appointment next week and will probably be having a filling done, as the temporary filling put in previously had come out. I’m told I can’t have a filling when I’m on chemo because of the risk of infection. Had I know this sooner I could have changed my appointment. I ring Birch Valley Dental Practice, explain and ask if my dentist can call me back. She does and asks when I start chemo. “Tomorrow morning.” She asks if I can come in at 7.55pm that evening. I can and I do. She asks how I am and listens patiently while I ramble on about everything from Covid-19 to the horrors of a bronchoscopy before she checks my teeth, puts in another temporary filling and gives me a prescription for various mouth medications I may need over the course of the chemotherapy. Thank goodness I live in Dumfries & Galloway.

The bagels are a huge success – huge being the operative word. No wonder I’m piling on the pounds since my son re-joined our household.

Friday September 18: I don’t sleep well. I’m glad the DH is driving me to the hospital or I might just have driven past and come home again without calling in – even though I’m wearing the kick ass ankle boots. I’m on time, I give my name to the receptionist, take a seat. Then it kind of goes downhill because when I’m taken to the ECG department I hear voices of muttering that “it can be done but she’ll have to wait.” The receptionist says there’s no record of my appointment being made. The nurse says she brought the form herself last week. “Yes,” the receptionist agrees, “I remember putting a note on it.” Since then the form, the note and my appointment have vanished. No one actually tells me this so I wait and eventually I’m called. They are short staffed – two sitting a test, one called to critical care unit – but my ECG is done.

Those kick ass boots make tumours tremble

Back in the oncology department, I’m weighed (heavier than last time) and height measured. This causes some excitement and calls for someone else to verify it – I am exactly the same height I was on September 07. Apparently this never happens. Things begin to acquire a surreal quality, heightened when I’m led into the room where it happens. Four people are already hooked up to drips – and they’ve bagged all the good reclining chairs! There’s a radio playing down one end, television at the other end. I choose a chair sort of midway, facing the long – very long – nurses’ desk. In time I realise it’s a mistake because from the television, which I can’t see, comes a constant burbling, which is annoying. Can anyone actually watch and hear the television?

They tell me they are waiting for the pharmacy to send down the chemo. In the meantime they put warm pads on my hand and wrist to make the vein come up. I wait. I read. They bring me lunch. I eat. I wait. Finally, the stuff arrives and I get hooked up and toxic drugs start dripping into my body. They give me pills to prevent nausea. Drip bags are changed – flush, medicine, flush. The nurse changing the bag tells me when this flush is through there will be one more chemo. A different nurse comes over when the flush is done and tells me I’m finished. I’m confused. Really? I thought I’d to have one more. I say her colleagues are trying to tell her something and she looks round and realises her mistake. She makes a comment that a proper handover after breaks would be useful. I agree. Finally, about 3 pm it’s all over and I leave armed with booklets and instructions and medicines and lists of other medicines to get from the GP.

As I get in the car, I realise I still can’t get my head round the fact I have cancer and I have started chemotherapy treatment. I wonder if it will ever feel real.

Saturday September 19: I slept well and feel fine. People who have been down this road before me have said the first cycle is the easiest to cope with; the side effects are worse after several cycles. I decide to make the most of this being the first and do some emails and writing in the morning and some work in the garden in the afternoon.

Sunday September 20: I didn’t sleep last night. I don’t know why. I’m knackered for most of the day (the steroids are finished for now which may be a factor) but I seem to wake up later and enjoy a two-mile walk. Hope I sleep tonight. There’s definitely going to be a nightcap before bed.

MarySmith’sPlace – #AfghanistanAdventures53 Foreign(Non)Diplomacy

Afghanistan, December 1989: Bamiyan, Sheikh Ali & onwards to Wardak Province

We’d enjoyed our day of playing tourists with very hospitable and friendly mujahideen

We returned to the French clinic to find Ghulam Ali, huddled under his patou, looking more miserable than usual. The room we’d been allocated was like a fridge, the promised stove had not materialised. Ghulam Ali was bored and cold and thoroughly fed up. Jon went off in search of someone to help, and soon a bukhari was installed and we huddled in a circle around it drinking tea, waiting for the temperature to rise. 

Shortly after seven o’clock the cook appeared to inform us dinner was ready and, indicating Jon and me, told us to go to the house. I pointed to our fellow travellers and asked, ‘What about them?’ The cook explained food would be brought to the room for the Rahimy, Zahir and Ghulam Ali, but Jon and I were expected to eat with the kharijee – foreigners.

He trotted out. Minutes later he returned and said, this time, in English, ‘Dinner is ready. You go to house.’

I shook my head, ‘No, we all eat together, here.’

The great Buddha of Bamiyan

Looking ruffled, he departed and we sat in an uncomfortable silence. I didn’t know what the other three were thinking about their exclusion from the invitation. Rahimy broke the silence to say, ‘If you want to eat in the house, it’s all right. We don’t mind.’ His hurt expression belied his words.

Before I could reply, the cook shuffled in bearing a tray with three plates of food. Setting it down, he was about to leave, when I remarked, ‘We are five people – there are only three dishes here.’

‘Your dinner is in the house with the foreigners. They have meat.’ He was sounding agitated by our steadfast refusal to go to the house, unsure if we simply did not understand his English, or were being deliberately obstructive. I sat down and began to eat from one of the dishes and the cook went out, slamming the door. He soon returned, with another two dishes, which he dumped unceremoniously on the floor before, shaking his head at the crazy behaviour of foreigners, he departed. We had no meat on our plates.

No Afghan host would invite people to stay the night, and then expect to eat with only a chosen few. I tried to apologise, explaining that in some organisations the expatriates and the local people tended to live separately, but Rahimy’s only comment was, ‘Foreigners are not all the same then, are they?’ I agreed this was true.

By this time Zahir was gasping and wheezing. At first, we were afraid he was having an asthma attack but he shook his head at our concern. Finding the ridiculous situation quite farcical he was giggling helplessly. Once reassured the dreadful sound was laughter, the tension in the room eased instantly and soon we were all laughing together.

Later, the foreign doctor appeared. ‘We wondered if you would like to join us for a drink?’ His eyes slid over the Afghans, coming to rest on Jon. The invitation was, once again, only for us. I indicated our friends.

The doctor shrugged, ‘You can leave them on their own for an hour, can’t you?  We don’t let our Afghans use the house.’ We explained we travelled together as a team, sharing everything, and, even before the doctor had left the room, Zahir, deciding the peculiar hospitality of foreigners was too funny for words, dissolved once more into giggles.

Next morning, Rahimy went to beg, buy or steal fodder for the sheep and leaving Ghulam Ali with the doctors, who were happy to operate on his toe, if not to allow him in their home we departed for Sheikh Ali. We made it in three hours.

We climbed up the steep path to the house, the sheep bounding ahead, none the worse for its journey. Hassan and Zohra were in the midst of preparations to go on leave; their first holiday for three years. The sheep, while a welcome gift, had to be rehomed until their return. Zohra and I had little time to talk but I asked about baby Sadiq, whose life had still hung so much in the balance when I last saw him. ‘Oh, he grew. He’s at home now, and his twin brother also survived. Even the grandmother finally began to accept my strange ways were sometimes right.’

We said our goodbyes in the evening as the family were leaving at four am. My cold which had started in Bamiyan was much worse so I was grateful our departure would be at the more civilized time of eight. I crawled into my sleeping bag feeling utterly wretched, awaking in the night, feverish, my head and face gripped in a band of excruciating pain. Jon dosed me with painkillers which allowed me to doze again but I slept fitfully and in the morning was no better. Jon, diagnosing a sinus infection, gave me antibiotics and postponed our departure. I spent the day swaddled in my sleeping bag, obediently swallowing medicines and innumerable cups of tea, feeling much too ill to enjoy the luxury of a day in bed. 

Next morning, although my sinuses were still painful and my teeth and jaws ached – even my hair hurt – I decided I was fit to travel. After breakfast we set off for Arif’s clinic in Day Mirdad in Wardak Province, expecting to arrive by late afternoon.

The sky was grey and heavy with snow as we began climbing the pass leading out of the valley. We were soon driving through a snowy landscape, and progress became ever slower as we carefully followed in the tracks of the trucks, which had preceded us. Near the summit, we caught up with the tail of the convoy, inching its way upwards on the treacherous road.

The snow had come sooner than expected, catching the drivers unprepared. They had not yet fitted the huge, heavy chains which allow them to grip the road in snow and ice and several trucks had already stuck fast in the snow and mud. 

Jon and Rahimy went to provide some extra muscle power to dig out the trucks. I persuaded Zahir to stay with me in the jeep, afraid the bitterly cold air might start off his asthma, and thankful women were not expected to shovel snow.

We gazed out at a forlorn and mournful landscape in which, apart from ourselves, there was no sign of life.

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 – AfghanistanAdventures#52 legends, dragons & Genghis Khan

Bamiyan, Afghanistan, December 1989

Once on the main road, Jon tilted the passenger seat and dozed until I woke him to inform him I’d achieved fourth gear on the reasonably smooth road and the giddy-making speed of forty miles per hour.

We passed the turning to the Valley of the Dragon, named after the dragon-slaying feat of Hazrat Ali. It had been terrorizing the citizens of the area, wreaking havoc and devouring everything until the king made a deal with him. Providing the dragon was given sufficient sustenance each day, including, amongst other fodder, two camels and a virgin, he wouldn’t bother anyone.

Valley of the Dragon, near Bamiyan. Pic from Wikipedia

Understandably, many families were still upset by the way their daughters kept disappearing.  Given the task of destroying the dragon, Hazrat Ali, split it in two with his sword, Zulfiqar, leaving its dead body blocking the entrance to the valley. Blood and tears poured from its body and head. The illusion is retained by mineral springs trickling from the giant beast’s head, and the groans of the dragon can be heard at the place where Ali’s sword sliced the dragon.

It was late evening, and bitterly cold when we reached Bamiyan. At the hotel we were given a small back room to ourselves. Rahimy took the sheep for a short stroll down the street but couldn’t find fodder for it. It was singularly unimpressed by the dry nan it was offered and so went to bed hungry.

Shahr-i-Gholghola also known as City of Screams

There was a strong smell of sheep clinging to our bedding, but by then I was coming down with a heavy cold and was spared the worst of it. We huddled close together, under assorted layers of blankets and sleeping bags while we ate our kebabs. I was shivering when I snuggled into my sleeping bag, feeling wretched. Everyone else was equally cold and miserable, but in the morning we cheered up, after the hotel’s breakfast speciality. 

Our first task, before becoming tourists, was to find the clinic run by a French medical organisation. We hoped their doctors could operate on Ghulam Ali, thus sparing him the hardship of the long journey to Pakistan. There were two French doctors, one male, one female, on duty, and they invited us for coffee. A warm sun had banished the previous night’s cold and we sat in the garden admiring the late roses in bloom. A table was laden with goodies: breakfast cereals, jam, biscuits and drinking chocolate. Our hosts looked surprised when the three Afghans ignored the pot of tea, clearly brought for their benefit, and helped themselves to the instant coffee. 

On the summit of Shahr-i-Gholghola looking over the Bamiyan Valley

The doctors said they could perform the minor surgery on Ghulam Ali the following day which would allow him to return to his home before the road was closed by snow. When they heard we were staying in a hotel they invited us to spend the night in the clinic buildings. There was an empty room if we didn’t mind sharing it. We accepted gratefully, hoping it would be warmer than our room at the hotel. As Ghulam Ali was unable to walk far we left him sitting in the sunshine outside the room.

Rahimy let the sheep out for some exercise and fresh air. Finding food for her was still proving difficult but a man, who seemed remarkably unsurprised at the sight of a sheep being driven around in a Toyota by foreigners, kindly shared the fodder he’d just bought for his own five sheep. 

The first visitor attraction on our itinerary was the giant Buddha. I’ve already written about the visit HERE.

From there we drove through what had been Bamiyan’s ‘new’ city, built in pre-revolution times. The Government offices, hospital and tourist hotel, all of which must have been incredibly ugly edifices of concrete, had been bombed out of existence. We gazed up at the summit of Shahr-i-Gholghola, the ancient mountain citadel of Bamiyan. A mujahid yelled an invitation for us to climb up.  

Defending the city

We followed a well-defined path which twisted and turned as it rose steeply towards the top.  Just off the path some areas were roped off, like valuable exhibits in a stately house and, thinking one of them looked suitable to be used as a loo, well hidden from view, I was about to step off the path over the rope when Rahimy gave a shout of alarm. “Those are mined areas,” he explained. I decided to wait.

Three mujahideen welcomed us, as we rounded the final bend and, delighted in their role of tour guides, proceeded to show us around. We scrambled about on the earthworks, in between and over sandbags, all the while being given a detailed account of the battle which had forced the Russian troops to flee. Apart from the path up which we had climbed there was no other route to the summit, and seeing the awesome, sheer drop it was easy to imagine that whoever held that position must have felt reasonably safe.

Earthworks and foxholes, all part of the defence system

We stood drinking in the tremendous view of the fertile Bamiyan valley below us, until our guides led us to inspect the rubbish tip which was full of empty tin cans left by the Russian soldiers. The mujahideen spoke with such dismay and disgust about this environmental vandalism he gave the impression he thought the invaders should have had the decency to take their rubbish with them, or at least bury it deep in the mountain. 

Over tea, Mukhtar, the self-appointed spokesman, told us tales of another invader of long, ago: Genghis Khan. He and his army had surrounded the citadel of Bamiyan but the besieged inhabitants, despite dwindling food supplies, refused to surrender. The wife of the ruler, however, realising defeat was an eventual certainty and, not wishing to share the fate of her husband and his people when it happened, decided to negotiate with Genghis Khan.            

Slipping out of the palace one night, she secretly met with the Mongolian warlord, telling him of a secret water supply to the citadel and where its flow could be stopped. Once the water supply had been cut Bamiyan soon fell. Genghis, who was always hardest on those who withstood his forces for longest, ordered that every man, woman and child be slaughtered.  The king’s wife was suitably rewarded by Genghis – he had her publicly executed for her treacherous behaviour towards her own people.

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 – Travels with a sheep – AfghanistanAdventures #51

From Lal-sar-Jangal to Band-i-Amir, December 1989

Looking across the water to the shrine

We were almost in Yakolang before anyone remembered the sheep. When Jon unlocked the door, his gasp of horror made me fear the poor animal had expired. I peered in. It was still alive – bleating its protests at this unorthodox way of travelling. It lay flattened under a huge pile of bedding and a large box, its legs sticking out like a cartoon character. Jon shifted the bundles, and the sheep struggled to an upright position.

In the bazaar, Rahimy went off to buy fruit and other supplies, while the rest of us paid our respects to the Commanders at the Paygar. As it was in Yakolang the mujahideen had threatened to shoot Khudadad for using a torch, I was less than enthusiastic about the visit.  The Commander gave Jon the usual bear-hug embrace. As a foreign female I was granted a cursory nod.

One of the lakes at Band-i-Amir

The Commander next turned to Zahir and his face froze in horror, his outstretched hand falling limply to his side. Not even his lifelong conditioning on showing respect and hospitality towards guests could overcome his revulsion at the idea of shaking hands with a leprosy patient. My heart went out to Zahir who, standing in the middle of the floor, politely continued the litany of greetings. The Commander finally indicated that we should be seated, and offered tea.

We refused, of course. It’s customary to wait until tea is offered a third time before accepting, with protestations about not wishing to cause the host any unnecessary bother. On this occasion, not even a second offer was forthcoming. The Commander didn’t want us to linger. Although I knew many people feared leprosy, because I spent the majority of my time with people who worked with leprosy patients, I had never before witnessed such a terrified reaction.

This was taken some years after my first visit, when people were once again visiting Band-i-Amir

We collected Rahimy and headed for the lakes of Band-i-Amir for a picnic lunch. After following a rough track for a short distance, a sudden glimpse of the most vivid blue imaginable confirmed we were on the right road. We spent an enjoyable hour or so scrambling on the paths between the various lakes, rewarded for our efforts by stunning views. Each lake was a different shade. In some places the water, with barely a ripple to mar its mirror like surface, was of the deepest blue, in others, it was an equally brilliant emerald green, viewed from yet another angle, it was turquoise. 

At the foot of the cliffs was a shrine built to Hazrat Ali, son-in-law of the prophet Muhammad (PBUH). Here, Rahimy, Zahir and Ghulam Ali spent some time in prayer. It was to this huge stretch of water (two miles long and five hundred yards wide) with its supposed miraculous healing properties, to which Qurban’s father had brought the small boy, hoping to cure his leprosy. We left a donation with the caretaker, and shared some of our picnic with his grandchildren who had acted as our guides, leading the way along the paths.  

An overview of part of the lake complex

Choosing a sheltered picnic spot by the side of the main stretch of water, we tucked into cold chicken and nan, thoughtfully provided by Aziz. To round off the meal, I shared out some chocolate. The taste and texture of it came as a surprise to Zahir and Ghulam Ali who had never tried it before. I noticed the latter slipping his piece surreptitiously into his pocket, either to enjoy later or, I suspected, to dispose of discreetly.

In the deep silence around us our chatter, and the clatter of thermoses and cups, sounded intrusive although I knew that, before the Soviet invasion, Band-i-Amir was one of the major tourist attractions in Afghanistan. Every summer, it was visited by thousands of Afghans and foreigners. They had trekked over the paths, admired the stupendous views, swum in the lake beside which we now sat (presumably warmer in the summer months) and enjoyed coffee and honey cakes in Aziz’s father’s coffee shop.

Tourists coming back to one of their favourite places

Aziz had often talked about the summers he spent in Band-i-Amir, helping his father.  He’d enjoyed meeting foreigners from many different countries, picking up a few phrases in several languages. I wondered who’d taught him his most frequently quoted expression of “No money, no honey.” After the tourist season ended all the traders dismantled their tea shops and restaurants, leaving Band-i-Amir as unspoilt as when Hazrat Ali had miraculously created the series of lakes.

According to legend, a young man, whose wife and children had been imprisoned by the cruel Barbar, a king who ruled over the Hindu Kush, appealed to Hazrat Ali for help. The plan they made was for Ali, without revealing who he was, to be offered for sale to the king.   Before he would agree to purchase this new slave, the king set him three tasks. One was to build a dam which the king needed; and in fact had 1000 slaves working fruitlessly to do just that. He also demanded a fearsome dragon be slain and, finally, that Ali be brought before him, in chains.

Jawad enjoying the view

These tasks were no problem to Hazrat Ali. From the top of the mountain he threw down enormous chunks of rocks which created the Band-i-Haibat (Dam of Awe); with his sword he hacked off another slice of mountain to form the Band-i-Zulfiqar. Ali’s groom helped to create a third dam, and the 1000 slaves, motivated by such awe-inspiring activities, managed to complete their own dam, the Band-i-Ghulaman. Two other lakes, or dams, were formed – the Band-i-Panir and the Band-i-Pudina. 

Ghulam Ali, Rahimy and Zahir were talking volubly amongst themselves about the lakes and the wonders of Hazrat Ali when I slid behind the wheel and started the engine.  When I put the vehicle in gear there was a sudden silence in the back and, glancing in the mirror, I saw, with the exception of Ghulam Ali, the faces of the other two registered a mixture of absolute astonishment and terror. I said, “Don’t worry. I’ve seen it done. I’m sure I can learn quite quickly.” They quickly assured me they were not afraid, but it was some time before they relaxed enough to resume their conversation.