MarySmith’sPlace – When roads become rivers – back in Afghanistan

I thought I’d provide some random snapshots from my second tour of the clinics in Afghanistan, in particular some of the problems we faced while travelling. We left on May 01, 1990 in two vehicles. I was in the Mobile Team vehicle along with Dr Epco, a doctor from Holland who was going to spend several months in the clinic in Lal, Jon and Jawad, the driver from Hussain’s clinic. In the other vehicle, Moosa from the field hospital in Jaghoray was returning after finding an organisation willing to sponsor the hospital.

We’d only reached the border town of Badani when we had to hire a replacement jeep and driver because without four wheel drive, the journey would be impossible. Delays waiting for a new driver – who came highly recommended because as a former highway robbery he could guarantee our safety – coupled with a series of punctures and a leaking water tank meant it took almost four days to reach the Mazar Bibi clinic. The hole in the water tank was temporarily but effectively fixed by melting a plastic water jug to use as a sealer. When darkness fell the first night we discovered the second driver had no lights on his vehicle. In the bazaar of Shahjoi, there was no room in any of the hotels – the driver went home, Moosa slept in one jeep, Jawad and I in the other and the rest of the group under a tree. Around 2 am I was awakened by a persistent tapping on the window – two armed mujahideen were demanding car park fees. Jawad paid them and we went back to sleep.

Although travelling could be wearisome the constantly changing landscape makes up for it – from flat, scrub covered desert to rugged mountains to white rockscapes wind-carved into fantastic shapes. Large tortoises, recently awakened from hibernation lumbered across the road – ponderous but determined. The weather was glorious making memories of last year’s battles in the snow fade.

The snow, however, hadn’t finished causing problems for us – or, rather snow-melt, which had turned tiny trickling streams into raging torrents. The road to Malestan was closed so we had to go over the high pass on foot, helped by donkeys, one to carry our belongings and one for us to take turns to ride.

On the return journey, as we went through a village, Epco was riding the donkey. It suddenly put on a great burst of speed and galloped directly into a house. Epco is over six feet tall, extremely thin and at that moment, totally without control of his donkey, lacked any trace of the dignity expected from a foreign doctor.

From Mazar Bibi we headed off, north to Lal-sar-Jangal. In Naoor, where we had to spend a night sleeping outside it was still freezing, despite being the middle of May. We heard conflicting reports about the road conditions, with some people feeling we wouldn’t be able to cross the swollen rivers. We decided to try. At the first river, running high and fast, Jon waded through first to check the depth and solidity of the bottom, decided it was doable and we did it.

This checking the depth was something we all had to take turns to do. The water was freezing. One of my flip flops floated away, watched by a gang of kids who did nothing to rescue it. I threw its partner out the window later.

On one occasion, the road seemed to be quite good – until the first river crossing where it was obvious we couldn’t go through. Back in the bazaar Jon negotiated the hire of a truck on which to load our vehicle. This created great entertainment value for the local people but it worked and we were able to carry on.

In Bonshai (not sure of spelling) even the trucks couldn’t ford the river. Everything coming from the south had to be unloaded – wheat, rice, sugar – and carried across a narrow, ramshackle bridge to the waiting trucks on the other side. Jon measured the bridge, decided there were about four inches on either side of the vehicle and charge across before anyone tried to stop him.

It took seven days to reach Lal and just before we arrived at the clinic, we got stuck in mud. Qurban and Ibrahim came charging down on horseback like a miniature cavalry and lots of people turned out to help. They attached ropes to the front of the vehicle and hauled it out of the mud. We still had the river to ford and a line of men formed up in the water to mark the way for Jon to drive through. The final obstacle was a steep climb up the bank on the far side and again, the ropes were attached, the tug-of-war teams took their places and with much revving of the engine and churning mud and pulling on ropes we were safely up the bank.

The last few yards drive had something of a triumphal entry as everyone jammed into the vehicle or hung onto the sides as we drove – very slowly – to the clinic.

MarySmith’sPlace ~ Cancer Diary #14 Scan results and what’s next?

Monday, December 07: From last Monday to this, the side effects continued to linger – nothing specific just a general mixture of ‘meh-ness’ and fatigue.  Unfortunately, the breathlessness became worse. We did one of my favourite circular walks between Rockcliffe and Kippford – an area known as The Scottish Riviera. Last April, I blogged about it, calling it a short walk of 3.5 miles. You can read the post and see the pics here.

Last week, on a lovely bright day, I could have cried with frustration at how difficult I found this same walk. I’d have said it was mostly level and yet it suddenly seemed to have grown hills I didn’t even remember. I had to stop to catch my breath and did wonder if I’d have to stay in Kippford while the DH walked back to Rockcliffe for the car. However, I made it.

A couple of days later, we visited Neilson’s Monument on top of Barstobrick Hill near Ringford.

The monument was erected by his son in 1883, in memory of James Beaumont Neilson who invented the hot-blast furnace in 1828, which revolutionised the practice of smelting iron. I’ve always enjoyed the walk there as, though the hill is not high, the views are wonderful on a clear day.

I had to stop a couple of times to get my breath back – I mean I do always puff when climbing any hill but I never used to have to stop on the way to the monument. Although I skipped back down the hill with no problems I came home feeling pretty miserable.

Walking is a huge part of my life – with a walking group (in pre-Covid days), with my sister and her dog, with the DH, on my own – and to feel this is being taken away from me is devastating.

By the weekend, the prospect of today’s meeting with the oncologist to hear the scan result and decide on next steps looming large I was in no mood to attempt a walk. I hardly slept last night and when I did it was to dream of conversations with the oncologist.

I told her I was extremely anxious about the scan result so she agreed to discuss that first – last time we had a medical examination and lots of questions about how I’d been, when all the time I just wanted to know the result. This time, we got to that bit first – and – cheers all round – the tumour has indeed shrunk. Unfortunately they said it was difficult to measure so I don’t know by how much it has shrunk – but the juggernaut has stopped and gone into reverse.

The summary of the report says: “Interval reduction in the volume of the right upper lobe tumour with re-expansion of apical segment of the right upper lobe. Lymphadenopathy is stable. No new lung lesions. Abdominal scan is unremarkable.”

Don’t put away your kick ass boots yet, though, as there’s four weeks of radiotherapy to be gone through try to continue the shrinking process.

The oncologist repeated what she said at the beginning of this horrible journey, she is not expecting the treatment to be curative and, though she said it bring a cure for 1 in 8 patients, it seems clear I’m in the 7 in 8 category who can hope for some extended time. She says at least a year or two.

I’m not sure how I feel – very happy the chemo has done something to shrink the tumour a bit. I’d have been utterly squashed if shoving toxic chemicals into my body with the resulting horrible side effects had done nothing. Very nervous about what’s coming next. Very worried the radiotherapy side effects will make me feel worse than I do now. I guess they have to spell out the worst-case scenarios but really – throat so sore when I swallow I’ll need morphine strength painkillers or even a feeding tube; permanent scarring on my lung causing breathlessness.

As you can imagine, it’s a lot to take in and process. We recorded the discussion and have already listened to parts of it again. Tomorrow – Tuesday – I go to Edinburgh for the planning scan, which does not sound fun – lying completely still with my arms above my head for twenty minutes – and wearing a mask. Not the kind of mask we’re all wearing these days but something over my entire face and neck. I wonder if I’ll have the courage to ask someone to take a photo for the blog.

Please, keep those kick ass boots at the ready. Mine are!

MarySmith’sPlace ~ Pregnant in Pakistan#03 #Finale

The next few months were busy. As always reports were needed and funding bids – I laboured over one from WHO which, from diary entries seemed to take forever to complete (all those objectives, outputs and activities) –meetings and travelling. Quetta weather was becoming colder and wetter. It rained solidly for five days, ending with a terrific thunderstorm (and several leaks in our roof) then it became colder and the pipes froze so we had no water and the gas pressure was so low there was scarcely any heat from the fires. The staff was fetching water from the nearby mosque but even after leaving the buckets to sit for hours it was still dirty looking. A trip to Karachi let me soak up some much needed sunshine.

We had meetings in Peshawar in North West Frontier Province where we were woken on our last night by an earthquake. We’d become accustomed to earth tremors in Quetta but this one shook the bed, rattled the windows and made a terrifying noise. We learned a few days later around 1,000 people were killed across the border in Afghanistan and flooding afterwards caused further deaths.

Oh, and the First Gulf War, when Saddam Hussein invaded Kuwait began. Quetta was suddenly emptied of expat workers. We were provided with two armed policemen at night – not quite sure what anyone thought was going to happen. Anyway, they enjoyed dinner with us and on the only occasion the dog barked, they sent young Sultan out to check what was going on. I think they must have been sorry when their bosses told them they were no longer required to protect us.

Jon had brought Sughra back with him from Jaghoray. We’d offered to send her to school in Quetta and, in exchange, she would help me with the baby. The school was closed when she arrived and she wanted to be with me all day, standing beside my desk watching me type. Poor girls was probably horribly homesick. Once she started school she loved it and was an extremely cheerful presence in our lives.

I needed that. One diary entry reads: “I’m scared. I’m scared about the baby, about the hospital, about who will do the delivery, about the baby not being healthy – and I’m terrified about the future and my ability to look after a baby.”

I was still visiting the anti-natal clinic. We upset her by saying we didn’t feel happy about having the baby in Civil Hospital, especially as she’d said Jon could not be with me. We chose, instead, a small private hospital. Dr Shahnaz pointed out the private hospital did not have all the hi-tech equipment available at Civil Hospital. I think she was insulted – she is in charge of Civil – but I saw no point in having access to special equipment when the walls are growing fungus.

On March 20, the night before the Afghan New Year, Jon, Sughra and I went shopping. It’s customary to have new clothes for the New Year and we thought as well as treating Sughra we should buy some clothes for the baby, due in about ten days. Poor thing only had a couple of little jackets sent by its grandmother.

When I got up to pee in that night, I noticed there was some blood-streaked mucous. I went back to bed but when I woke in the morning there was more blood. Jon phoned Dr Shahnaz who told us to come to Civil Hospital immediately. I’d had a few contractions but nothing much. I didn’t pack anything as I assumed I’d be told there was plenty of time, we’d come home and pack and head for the private clinic.

Dr Shahnaz examined me then sent me to another room for a foetal heart monitor. The machine had no plug, just bare wires which the nurse stuck into the socket. I wondered if my baby was going to be electrocuted. To my relief, the machine didn’t work. Dr Shahnaz found the heart beat with a stethoscope. She said labour had started, but the head was not engaged and she wanted me to stay in the hospital until 7pm to be monitored – just in case. ‘You may need a Caesarean. I will discuss with your husband.’

Before I could say any such discussion would be with me, she noticed the pad I’d just changed. ‘What’s this?’ she demanded.

I peered at the brownish/greenish stains. ‘Um, meconium, I think.’

‘And what does this mean?’

I shook my head, feeling like a medical student about to fail an exam.

‘Baby is in distress. No time to wait – we need to do a Caesarean.’

I burst into tears. ‘I want to have a normal delivery.’

The doctor tut-tutted at me. ‘I promise, you will be having a delivery and a baby.’

Still wearing the clothes I’d arrived in, I walked into the operating theatre and climbed on the table, being careful not to let my dirty feet touch the catheter lying ready at the end of it. Jon, of course, was left outside. Two anaesthetists were present. I handed one of them my glasses.

The next thing I remember was being wheeled on a trolley somewhere outside. I could feel rain on my face and it was cold. I was taken inside again and transferred to a bed. The porter, wanting me to look neat and tidy, pulled on my ankles to straighten my legs. The pain where I’d been sliced open was excruciating and I pulled my knees up. He pulled my legs straight again. ‘Leaving my fucking legs alone,’ I hissed. He may not have understood the exact words but he understood the message.

Jon came to my rescue, persuaded the porter he should leave – and told me we had a son. He was asleep in a cot beside my bed. He opened his eyes and looked at me and I was lost.

In the hospital

We were given exclusive use of what was a four-bed ward and Jon was able to stay with us, which was a relief and he was able to take over my care. I’d panicked a bit when I saw air bubbles in the syringe the nurse was wielding. They also had a habit of cracking open glass phials and leaving the shards of glass on the floor. Most days, either the blood pressure set or thermometer had gone missing. As a thank you for the all they’d done we bought some blood pressure sets which fastened to the wall.

We had the cradle made in Quetta. The joiner was horrified we wanted it to wide. He said the baby would move around!

The moment Jon left the room, other patients and nurses swarmed in to look at the little white baby – usually waking him up after I’d just got him to sleep. I was so thankful when, after ten days, I was discharged and could go home. To a very different life!

Sughra and baby David
Jawad’s daughter, Shahnaz
It’s a hard life!
Jon & David
An early picnic with Nauroz, Sughra, Ibrahim and baby in his carry cot.
We soon got used to David being ‘kidnapped’ wherever we went.

MarySmith’sPlace ~ Cancer Diary #13

Monday, November 30: It’s now ten days since my last chemo and the side effects this time have lingered. It’s the gift that keeps on giving. If I knew I was facing another two cycles I’d be in despair. At one point this time I said, “If this is as bad as it gets – and it lifts, then I can cope. If this is as good as it gets – and it doesn’t lift, then it’s enough.”

Yes, I know some people go through many more cycles of chemo. I’m in awe of them. I don’t know how they do it. I really don’t think I could. I know some people have far worse side effects than I’ve had – but that doesn’t make me feel any better about the days I spend feeling like death warmed up. I can’t find a better way of describing what it feels like. It is certainly not living.

It’s not like after the chemo and the anti-nausea pills and steroids, I can just let the drugs do their thing and gradually leave my system. Oh, no, there’s the joy of five days of Filgrastim injections. These are to decrease the chance of infection in people having chemotherapy that decreases the number of neutrophils required to fight infection. They also help increase the number of white blood cells. They cause terrible back pain, right across my lower back. The first time I had the pain, I put it down to bad posture and lack of exercise – but when it disappeared only to return when taking the next course of the injections I’m pretty sure it’s the Filgrastim causing it.

Then, just before the course of injections is finished, it’s on to a fortnight of prophylactic antibiotics called Ciprofloxacin. Having looked up the side effects I’m a bit alarmed to see they shouldn’t be taken with blood thinners, which I’ve been on since those blood clots were found dancing about in my lungs. I take them based on the fact the doctor who prescribes them also prescribes the blood thinners. The antibiotics cause diarrhoea, which makes a change from constipation, but I do wonder if the oral medication is actually in my system long enough to be absorbed.

I’m sort of feeling OK today. I’m not as tired. The sore mouth has gone and there’s seems to be saliva enough. Out walking yesterday, the DH commented on how well I was doing. I didn’t slap him. But, I was not ‘doing well’. I had to pause to catch my breath on a walk which normally would be thought of as a wee stroll. Is this really as good as it gets?

Brambles in November – not that you could eat them as the Devil spits on them after September.
Castle Point, near Rockcliffe
The beach below Castle Point

I have my scan booked on Wednesday, December 02. The cancer specialist nurse rang on Thursday to say I’ll see the oncologist on Monday, December 07 though she didn’t know what time I’ve to meet the doctor. And, an appointment has been made in in Edinburgh the following day for the radiotherapy ‘planning meeting.’ No idea what time that appointment is either. It’s a two hour drive from here so it would be handy to know when we have to be there as if it’s an early morning appointment we’ll need to go up the night before. We are very fortunate that we can do this – what happens if it’s someone without a partner to drive them? Cancer patients have broken down immune systems so public transport isn’t an option. What about those who can’t afford overnight accommodation?

Of course, I suppose if the scan results aren’t what the oncologist is hoping for (a shrinking tumour), the appointment in Edinburgh won’t be necessary. Instead, there will be a whole different discussion on Monday. I’m getting my list of questions ready.

To end on something exciting – I’ve changed my car. My poor Toyota Corolla has done sterling service for 18 years but would never get through its next MOT. I’ve been dithering for ages about getting another car – how could I justify the expense when I don’t know for how long I will be around to drive it? Then, I decided, that was irrelevant. I’m still here and I need a trustworthy car so I’m now the proud owner of a new-to-me Clio.

Isn’t she lovely?

The day I’d to pick up the Clio and take the Corolla to the garage, it refused to start. That car never refused to start! I’m convinced its heart was broken.

MarySmith’sPlace – Pregnant in Pakistan#02

I’m sorry I left you for so long wondering if Jon got out of his Afghan jail before our baby arrived in the world.

It was the shock when reading my diary at how very miserable I was stuck in Quetta waiting for news. Over the years I’ve succeeded in turning the story of Jon’s kidnap while I was pregnant into an amusing dinner party anecdote. If anyone had asked me how I felt being pregnant in Pakistan I’d have said it was absolutely fine – sailed through it.

In fact, I was an emotional, blubbering wreck who cried a lot and raged in my diary. I suspect it was writing my thoughts and fears every day which saved my sanity – and allowed me to put on a brave face in front of other people.

This was earlier in the year – loading supplies for the clinics in Afghanistan

I spent a lot of time in discussions with other aid agencies as the most powerful negotiating tool we had was if they let it be known they would stop supplies going in unless Jon was freed. I also had to carry on with my work although it wasn’t easy to focus on preparing budget applications when I was worrying about Jon.

One entry read: “His mother has sent his birthday card. Will he be back on time? I’m not going to tell her yet – she’d be worried sick and can do nothing. I just can’t imagine in what conditions he is living, how he is coping, how he is feeling – you’d think we’d be emotionally close enough for telepathy to work. Finding it too difficult now. I’m afraid I can’t cope for much longer and I’m becoming more and more afraid he will not come back.”

On November 22, I wrote: “Just heard on the BBC Thatcher has resigned. That stopped me thinking about Jon for all of 30 seconds.”

In competition to see who could carry the heaviest load

It was the day I received further news Jon was still in jail. I write: “Everyone is depressed.  Moosa [the office chowkidar] was so happy because he received a letter from his brother – first time he’s had news from home for ages. I wish I’d taken a photo of his happiness – such a smile. The family sent him almonds, which he brought to share with me. Lovely he wanted to share his gift and his joy but because we are all miserable because of Jon’s situation Moosa’s happiness is dimmed.”  

I was not alone – lots of people were around me providing support: Hamid Shah who was in charge of the Quetta leprosy programme would visit, sometimes sweeping me up to take me home for meals with him and his wife, Shanaz. Evelin, a German midwife who was working here was a good friend, frequent visitor and huge support and Linda, a health visitor who worked for a different NGO was always there at the end of the phone (when the damn things were working) keeping me calm. Nick and Debbie visited or invited me to their home. “It is good to know,” I wrote, “we have such good friends who really care. The only problem is – they weaken me – my stiff upper lip trembles at their kindness and I risk dissolving into tears.”

Office manager, Inayatullah hands a smiling Arif the key to his vehicle. Moosa third from the left.

And the baby? It seemed to be doing fine. I attended the ante-natal clinic regularly seeing Dr Shahnaz who assured me the baby was growing well. Although, one time she was concerned about my blood pressure being exceptionally high – at which point I burst into tears and explained the situation. She told me not to worry. “If your husband does not come back, I will be there for you. You will not be alone. I will even get into bed beside you when you are in labour.” I thought this a slightly over the top – as was the prescription she gave me for phenabarbitone. I threw it away. Usually used in the treatment of epilepsy, I knew it would cross the placental barrier. I played a lot of Eric Clapton instead.

Rahimy on the left and Jawad – on a picnic somewhere near Quetta.

One evening I received a message to go immediately to the French Bakery, a Hazara run bakery which was a bit of a Quetta institution. When I arrived the boss put a chair in the middle of the shop and handed me a sealed letter. I read it about three times before bursting into tears – of joy. Jon was free. I rushed round to Hamid Shah’s to tell him and Evelin so more hugs and tears all round.

My 2 am diary entry was full of waffle about the note, Jon’s possible arrival date and my gratitude for always having someone to keep me going through the nightmare. “Now, I feel really guilty about how little work I’ve achieved – I should get busy immediately.” Maybe not at two in the morning!

Jon arrived back on December 01 – fit and healthy and looking in much better condition than I felt. He’d been reasonably well treated, had patients brought to him and was allowed out to play football every day. The worst part had been when they’d originally arrested/kidnapped him and accused him of spying. Unfortunately, Jon didn’t recognise the word for spy so had no idea of what he was being accused. They were hauling him into position to hang upside down to be beaten when someone higher up came into the room and told them to cut him down. It soon transpired it was money they were after, not a conviction in court.

And that’s when my euphoria at having him back safely rather evaporated. “How did you manage to get free?” I asked.

“I paid the ransom. I sent a note to Hussain asking him to bring whatever he had left in his budget.”

I was furious! All the running about, the meetings with WHO and other NGOs to apply pressure by warning no further supplies would be sent to the area, had been for nothing. They would think this was a very nice little earner – no one would be safe if they thought the ransom demand would always be met.

Jon was unrepentant. “I was afraid I wouldn’t get back before our baby was born.”  

I calmed down – not good for the baby to get so worked up. And now, Dr Shahnaz wouldn’t have to get into bed with me when I went into labour and I could look relax and enjoy the last few months of my pregnancy.

I should have known better.

Jawad and Rahimy on a picnic at Hanna Lake, Quetta.

MarySmith’sPlace ~ Cancer Diary 12

Monday, November 23: Last week was what I think of as my ‘medical’ week, starting with the pre-chemo blood check, followed by the pre-chemo assessment and, finally, the chemotherapy session itself on Friday. It’s a sleepless week of worrying about something going wrong to prevent me from allowing them to drip toxins into my body.

This was the last of my prescribed four cycles of chemo. I was asked if I wanted to ‘ring the bell’ but declined. I’m not tempting fate. I did have a happy, school’s out feeling when I came home – which lasted all the way through to Sunday. I should have written my second blog post about being pregnant in Pakistan when the DH was arrested in Afghanistan but couldn’t concentrate.

This is the first time the ‘meh-ness’ has hit so soon, and so hard, after the chemo. Maybe having my flu vaccine this morning hasn’t helped. I don’t think I’ve felt this level of tiredness before. I apologise for not being able to keep up with the blogs I follow at the moment, and not being able to reply to letters and emails. I’ll be back on form before long. I will respond to comments here, though maybe not quite as speedily as usual.

It’s not all doom and gloom and feeling crap. I did manage a couple of walks last week – just as well because since starting treatment I have gained about a stone in weight and feel disgustingly fat and frumpy. With and undiminished appetite, lack of exercise is definitely to blame – and maybe a few more treats than usual. And, today, I’m too tired for Pilates class – when I really need it!

Sandy Hills, Dumfries & Galloway

I have the date for my next scan – Wednesday, December 02 – though as yet have no idea when the results will come through and when I’ll next meet the oncologist to discuss what’s next.  

Some of you may remember back at the start of this, when I was in my ‘I’m-not-going-to-see-Christmas phase, I started blitzing the house, sorting and clearing out photos, letters, books. I’ve calmed down a bit since then. I sold some of my Scottish books to Andrew Wilson at Beltie Books (great coffee and fabulous home-baking as well as books) in Wigtown. Last week he sent me a poem he’s written about me and my books. It’s lovely and made me cry – I still can’t read it aloud all the way through without my voice breaking. I feel so touched by his friendship and his words, which I will treasure, and the knowledge my books will be cherished.

Sadness of second hand books
we had never seen their like before
these books,
they were so wonderful.
she said she could tell us a story
about each book
these ones she was selling;

but each book was itself
a story, of Scotland
no dates and battles, kings and queens
but the story of our people
Blind Harry, Irvine Welsh, Wendy Wood
McDiarmaid, McIlvannie, McCaig

Neil Gunn, every author
that should be known and loved,
and grace the shelves
of every writer on Scotland,
it was a Bard’s collection
yet they filled me with sadness.

they were from a writer
one who penned verses
on Galloway’s Gaelic places
*inflexible tongues could not say them
and memory forgot their meaning
but the Bard remembered

the Bard told their story
and now she was handing the baton
on to me, with her books;
her own battle with cancer
ahead of her, but her books…
her books would carry our story forward.
                                                                        Andrew Wilson

* words from Mary Smith’s poem “Lost in Translation”

MarySmith’sPlace ~ Cancer Diary 11 – Uncertainties

Monday, November 16: I had a wonderful week in the hut although on the Tuesday I was more tired than I’ve been for a while. I suppose the rushing around on Monday, packing and sorting out food supplies, writing the blog – and the sudden exposure to sea air – did for me. And, maybe I was tired because of cancer and having chemo, though I tend to look for other causes first for some reason.

Tuesday, then was a day of doing not very much – that is what holidays are about, isn’t it? I rallied when the weather brightened in the afternoon and went out for a walk. In fact, there was only one day I didn’t get out. I also spent vast amounts of time sitting in the veranda, supposedly reading, but simply gazing out and the endlessly changing vista, watching the waves.

I’m back at home – no more sounds of the sea to send me to sleep. And it’s chemo week. Well, I hope it is chemo week – there’s always the uncertainty something might be wrong with the bloods and the treatment be postponed.

The uncertainty of it all is starting to get to me. If the bloods are all right, then I’ll have my fourth chemo cycle on Friday. After that I have no idea what’s happening. I should have a CT scan to see what effect the chemo has had on the tumour and lymph nodes and to check it hasn’t spread to other organs. I haven’t yet received an appointment for the scan, nor for a consultation with the oncologist.

Before radiotherapy – five days a week for four weeks – can be started – if it’s going ahead, another uncertainty – I have to have a 4d scan to have the places marked where the radiotherapy will be focussed. I have no idea when this will happen, nor how long after it the process can start.

I’m feeling totally in limbo right now. I have no idea what is going on with the tumour – is it shrinking, staying the same or growing? Spreading? Is my case being discussed at the weekly meeting? I won’t say am I being discussed because I realised to the oncology medics we are not really people, we are cases. Why does no one feel any need to let me know what they are planning next and when?

I am so very glad I had such a good break at the hut last week because if I’d been here – checking the post for appointment letters which don’t arrive – I’d have been in a far more worried state than I am now.

The last scan showed the tumour was stable – hadn’t grown and hadn’t spread. The prospect of the possibility of extra time was still being talked about. But, I don’t know of there will be extra time, nor how long it will be – neither, it seems does the oncologist so the uncertainty is all encompassing.

I have things to do, places to go and people to see. If my time is going to be very limited I’ll break all the Covid rules to which I’ve so steadfastly adhered and go ahead and get on with things I want to do while I’m still able.

I hope I will have had the toxic drugs and know a bit more about that’s next when I next write.

MarySmith’sPlace ~ Pregnant in Pakistan

I’ll have to do this story over a couple of instalments.

Despite my delight at returning to Quetta, it didn’t long for me to miss being in Afghanistan.

By Beluchistan – Baluchistan, CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=54411683

I wrote in my diary a week after our return: ‘I wish I was back in Afghanistan. I have mixed emotions about my role there and I remember my despair and desperation in Lal (though by the end I did feel I was beginning to be able to do something).

Unlike in Afghanistan, we have electricity here – which goes off frequently for hours at a time. Here, we have flush loos – which get blocked and stop working. Telephones – usually out of order. The bazaars are full of consumer goods which make me feel an urge to buy stuff I don’t need for the sake of spending money. The traffic, which is nightmarish, with noise assaulting my eardrums, induces fear and diminishes dignity as I scuttle across roads. I feel frustrated and irritated at having to bargain in shops for everything, knowing prices are increased because foreigners have more money and can afford to line the pockets of already rich businessmen. Despite the problems in Afghanistan, I felt alive there.’

Quetta was never my favourite place in Pakistan. It is the provincial capital and largest city of the Province of Baluchistan. In 1935 it was largely destroyed in an earthquake, which killed around 40,000 people. When we lived there frequent tremors gave new meaning to ‘Did the earth move for you, too, darling?’ It’s a frontier town, not particularly pretty although it has lots of orchards around it which we visited sometimes to see the blossom.

I had work to do – reports to write, statistics to compile, funding applications to prepare and submit and endless meetings with other agencies. We moved into a house next door to the office, which gave us some privacy. I settled down for the winter.

The following spring (1990) we returned to Afghanistan for a two-month tour of the clinics. I may write something about the difficulties of travelling when snowmelt flooded the roads as I have found some photos of the Toyota having to be loaded onto a truck to be taken across the flood.

Later, that year Jon and I went home on leave – the first for two years. We returned to Pakistan married and pregnant.

One event which really took the shine from our time visiting family and friends and getting married was receiving the news of the murder of Moh’d Ali, the office cook. He was a lovely guy and he and our dog, George, were very fond of each other. He took on responsibility for feeding the dog and at night took him back to our house to stay with him. We never found out what exactly happened but in the morning, he was found dead with George lying guard over him. The most likely thing was that it was a robbery, which went wrong. The only things missing were two ashtrays; a little onyx one from Sr. Jeanine and a pottery one with a Pendle witch on the bottom, a gift from the Clitheroe Oxfam group. The dog would certainly have tried to defend his friend and territory and apparently wouldn’t eat for five days afterwards.

The police decided to arrest poor Abdul Hamid as being, being a stranger, the most likely suspect but had to let him go. First he was caught in a bombing raid, then found cockroaches in his dinner and then was wrongfully arrested.

We were by now preparing for the tour in Afghanistan. Medicines and medical supplies had to be purchased and packed and the budget for the winter months prepared. I was just under three months pregnant, tired and crabby much of the time, and desperate to be back across the border to the fresh clean air of Afghanistan.

It was not to be – various ex-pat medical workers started making worried faces about the trip – the road conditions, my age (36 – considered old in those days to be having a first baby), the lack of medical facilities if anything went wrong. Finally, Dr Pfau advised against the trip. “Plenty of work for you to be doing in Quetta,” she said. And so, Jon went off without me on October 22.

The beached whale – look at that double chin! This was later in the pregnancy. George trying to hide under the desk

On November 08 I received a long, newsy letter from him, which he’d written on October 28, telling me everything was going well. A postal service didn’t exist – letters were handed to someone, hopefully trustworthy, travelling to Pakistan.

On November 15, I heard he had been arrested/kidnapped by Nasre, the day after he had written to me.

Diary entry November 17: ‘I’m exhausted. Easily become tearful, especially if someone is kind. I feel so superstitious. I had planned to make Jon a picture collage to welcome him back but now feel I shouldn’t – it would be tempting fate, like writing Christmas cards from us both.

So stupid. Unfortunately the crazy Party which has him in jail is even more stupid. We know the only sensible thing is to release him but these people don’t use reason. OK, what can they do? They can shoot him, they can hold him for months or years – as they did with the Egyptian doctors – or they can release him.’

MarySmith’sPlace ~ Writing under lockdown

I’m excited to be a contributor in a new anthology which provides a unique record of life in my Galloway, my own wee part of Scotland, during the first 12 weeks of lockdown.

Writedown: Lockdown in the Galloway Glens at the Time of Covid brings together the work of 22 writers, each with a Galloway connection. It is a collection of prose and poetry, hopefulness, hopelessness, anger, humour and quiet endurance in which the writers tell the story of a community dealing with life in unprecedented times.

The idea behind the project came from author Margaret Elphinstone, when her writing classes could no longer meet. Inspired by the Mass Observation project which encouraged ordinary people to keep wartime diaries, she invited anyone interested to contribute – 22 of us did.

Margaret said: “In times of trouble people want to be together but with lockdown people had to isolate, sometimes living alone. Writing met their need to communicate. Through our writing we entertained and supported each other, sharing fears and unexpected joys and daring to hope for a better future.

“None of our writers was on the ‘front line’ and most were aware life in Galloway was better than in many places. But there was mounting anxiety for absent friends and family, and for what would happen to our communities.”

Now, with the book in my hands, looking back to my early contributions, I’m astonished at how hopeful I felt. Not only would this lockdown bring the virus under control, stopping the cases – and the deaths – from rising – it would surely lead to a fundamental shift in how politicians worldwide treated the environment. There was a feeling of all of us pulling together, accepting the restrictions for the good of everyone. Dominic Cummings put paid to that, didn’t he?

At the beginning of lockdown, I thought I would use this huge bonus of ‘me’ time to tackle my own outstanding writing projects – starting tomorrow. Always starting tomorrow! I am so pleased I signed up to take part in Writedown because it was almost the only writing I did do over those 12 weeks.

The writers never – and still haven’t – met as a group. They come from diverse backgrounds and many were strangers to each other at the start of the project, but they shared their writing week-by-week and bonds and friendships were forged. It was to the group I turned late one night when an Afghan friend messaged me about a brutal terrorist attack on the Kabul maternity hospital in which her sister worked.

Even the editorial team met on Zoom, both as a group and in pairs as we worked on our allotted chapters. It was an interesting experience as we discovered each other’s pet hates and particular foibles. I hate the word ‘that’, others don’t mind, some even really like it. Some love commas, others don’t. Exclamation works made some shudder while others didn’t notice them. Everyone, however, was working towards the collective aim of making the book as good as it could be.

The paperback edition came out first and is available locally in many outlets. Readers from further afield will be pleased to know the ebook is now available on Amazon. Here is the universal link for anyone outside the UK : http://smarturl.it/writedown

Writedown is available for members of Rosie Amber’s fabulous review team. If you are a reader who would be interested in becoming part of Rosie’s team and sharing your reviews, all the details are here.

And here is the flyer for the paperback (I think UK sales only) if you would like the paperback:

I’ll finish with thoughts from some of the other contributors to Writedown. Cath Monk remembers how positive we all felt in the beginning, something which changed over the weeks. “All the sad stories started coming out. It’s not easy to stay upbeat. We were all missing the contacts and the hugs. At least we knew, ‘it’s not just me.'”

Leonie Ewing said: “We were united by the project – it gave us focus. We brought different life experiences and points of view. It gave us a finger on the pulse of Galloway as the pandemic took hold so we could encourage each other and uplifted.”

MarySmith’sPlace ~ Cancer Diary #10

Monday, November 09: Each round of chemotherapy seems to bring a new addition to the range of side effects. There’s always tiredness and feeling generally horrible. Constipation. Heartburn. Not sleeping well is a regular side-effect – whether from the chemo or just because when you have a stonking great tumour in your lung you tend to be a bit anxious about what’s going to happen.

I’ve been lucky in not developing peripheral neuropathy as a side-effect and hope it stays that way – the tingling and pain in the fingers and feet sound very unpleasant. And, I haven’t lost my hair, though it has become thinner. In fact, since my last haircut I don’t think it has grown at all – may even be shrinking. At least it takes no time to dry nowadays and from what I’ve heard from others it will thicken up again once the chemo is over.

Last time I had a sore mouth. When the nurse phoned to do the pre-chemo assessment and ran through her list of possible problems, I told her. “Oh, did you use the mouthwash, we gave you? It really does help.” I admitted it hadn’t used the tub of sodium bicarbonate they’d given me to make up a mouthwash – I didn’t admit I’d used it make Irish soda bread. It’s a big tub so there’s plenty left to use as a mouthwash.

Of course, this time, I didn’t have the sore mouth – instead I had a really dry mouth with very little saliva. Fortunately, my lovely dentist had already supplied me with artificial saliva in the form of pastilles, gel and spray.  

I know I had a bit of a whinge last week but looking back, the week after round two of chemo was far worse emotionally, if not physically, than round three. I’ve been thinking about this and why it might be so. I wonder if after the first chemo cycle, we’re so glad treatment has finally started and are feeling positive about its effect on the tumour. The side effects are not as bad as we feared and we feel we can cope.

By the time we go through it a second time, we’re perhaps not quite so positive. More side- effects appear which are harder to deal with and we have absolutely no idea if this toxic mix we allow to be dripped into our bodies is doing what it’s supposed to be doing. We feel crap and begin to wonder why we are putting ourselves through this hell. For me, one of the worst aspects of cancer and its treatment is the never really knowing what’s going on. The endless waiting to find out is also pretty tough. No wonder we get so bad-tempered and don’t sleep well.

I am astonished, when the side-effects wear off to find I feel perfectly well. How can this be when a malignant tumour is inside my lung, hell bent on killing me?

I think this time round – third – I kept reminding myself I would feel better after a few days. It took a bit longer this time – but I don’t think I was as bad-tempered as before – though you might have to ask the DH for his opinion on that statement.

Realising I can’t influence the action of the chemo I’m trying to block thoughts about whether the tumour is shrinking, growing or remaining stable. It’s pointless worrying about it. I said to my friends Sue and Lynn, “You can remind me of this, when I’m suffering from ‘scanxiety’ after the final dose and am waiting for the next scan results.”

We’ve had a few dry, bright days so I’ve been able to get out for walks – both along a beach and in the countryside. That’s when it feels the healing is happening.

The coast walk – dry but chilly
Near Rockcliffe
The countryside walk
These placid cows, met on the walk, are specially for Beetley Pete
I love this walk – we have moorland, woodland and the loch
And who lives here?

And with only one medical appointment this week – a Vitamin B12 injection this morning – I threw clothes into black plastic bags and am now installed in a hut on Carrick shore for the rest of this week. This is why I’m so late putting up this post. I arrived here mid-afternoon full of good intentions to get cracking on the blog after a quick wander along the shore, but then was seduced by watching and listening to the tide come in, sea birds calling, the sun setting, the light fading and the stars appearing. It may not shrink the tumour, but it makes me glad to be alive and still able to savour such times.