MarySmith’sPlace ~ Fatigue & other side effucks Cancer Diary #25

Wednesday, 24 February: It’s grey and wet here and has been for the last two days which may account for the dip in my mood. I suspect, though, more than the weather blues, it’s caused by trying to deal with the seemingly endless fatigue and lack of energy.

On Sunday, the weather was lovely following several days or torrential rain, and my sister and I met for our first socially distanced walk in – well, I don’t even know how long it’s been since we saw each other. We met at the car park at Rockcliffe, a small village on the Solway coast. I’ve written before about the circular Rockcliffe/Kippford walk when I really struggled, post-chemo, pre-radiotherapy.

We decided to walk in the other direction to Castle Point, site of an Iron Age fort. It’s not particularly strenuous and – I’m guessing here – the circular walk is only about 2.5-3 miles.

Looking across to Rough Island

I felt slightly breathless, coughed a bit when we started out. I was annoyed about the cough as I hadn’t been coughing for ages – I put it down to my lungs being in shock at meeting fresh air after days of being indoors.

Dinner time
A shell-decorated tree
Wee-sis adds her shell to the tree
Watched by Sula

It did feel good to be out in the sunshine and I felt fine when we returned to the car park.

In the evening I couldn’t keep my eyes open and was in bed before 9pm. Three miles and I was knackered. So much for my dreams of one day walking the Camino de Santiago!

I know the oncologist warned me the radiation could cause severe fatigue, which could last for weeks, even months. She warned me if the radiation caused so much inflammation in my throat I couldn’t eat I’d need a feeding tube but I escaped that and I fully expected, as six months before, I was actually pretty fit to escape the fatigue side effuck.

This is the new term for side effects listed on Abigail Johnston’s wonderful blog No Half Measures. I’ve stolen her side effuck from her Glossary of my Metastatic Breast Cancer (MBC) Experience.  After all, I reckon, breast cancer, lung cancer, ovarian cancer, whatever kind of cancer for which we’re having treatment, we all have to cope with several side effucks.

There are times when I’m reading Abigail’s blog my jaw is practically hitting the floor as she describes the discussions she has with the various members of her medical team before deciding on the treatment to choose for a particular metastasis, what she describes as a ‘pesky met’. It is oh so different in America! Patients are, of course, paying customers and they are treated with respect and time and explanations and advice. I think I’m doing well with a weekly phone call from the cancer nurse and an occasional meeting with the oncologist (the last was in mid-January). I certainly don’t have discussions with a radiation oncologist as well as a medical oncologist and various other doctors and advocates. Wow.  

The day after the walk was another lovely day. I pottered in the garden for a little while but I could not summon up the energy to walk. The fatigue side effuck had me well and truly in its grip.

I had my weekly call from the specialist nurse today and now have my appointment with the oncologist next Monday, March 01. He said to mention my lack of energy to the oncologist – wouldn’t it be lovely if she could prescribe an energy pill?

Not only am I too knackered to do much walking, it has taken me the best part of a couple of hours to write this post for heaven’s sake and my inbox is stuffed with emails awaiting replies. I used to laugh at the DH who could take half an hour to write a two-line email – because he’s a numbers person and doesn’t trust words. Now, it takes me as long and I do love and trust words – I’m just tired. And by the time the inbox is dealt with I have no time to do any writing projects and I haven’t written an Afghanistan blog post for weeks.

I’m trying to be kind of upbeat about this tiredness side effuck but there is a serious side I’ve avoided addressing but really shouldn’t ignore. In about six or seven weeks I’ll have a scan which will show what the treatment has – or hasn’t – achieved. This will give me some idea (I know it will only be a vague idea because my oncologist doesn’t have a crystal ball) of how much time I have left. When I know that, I will have some big decisions to make on how I’ll want to use that time.  

In the meantime I better start putting my list of questions together for Monday’s meeting with the oncologist. Feel free to chip in as I won’t remember all the things I need to ask.

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 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 #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.

MarySmith’sPlace ~ AfghanistanAdventures#59 Ghastly things and lovely things

Jaghoray, Afghanistan, December 1989

Mazar Bibi Clinic under construction 1989
Mazar Bibi Clinic as it is today

Hussain had taken Rahimy, Sharif and Zahir, to see something more of the area and I was writing up my tour diary when Habib, one of the translators who had defected from Qolijou, arrived at Mazar Bibi with a jeep full of patients. I explained Hussain would not be back until late afternoon. He asked if I would examine the patients. I pointed out he had more medical training than I but he begged me to at least look at the most seriously sick of the patients, a seven year old boy. 

The child was carried into my room, deathly white, gasping for breath, barely conscious. Handing me a stethoscope Habib explained, ‘First he complained of a sore throat then he started coughing and now he has breathing problems. His father brought him to us this morning but we are not sure what to do for him and hoped Hussain could help.’ The child was seriously ill. When I looked in his mouth, I could see a kind of grey membrane covering in this throat. Diphtheria?

I turned to Habib, ‘You must take him to Rosanna at Qolijou.’ 

He looked at me, miserably, ‘Can you not give him medicine?  I can’t go to Qolijou because Moosa and the others will laugh at us and say we are useless doctors who cannot manage on our own.’   

I was incredulous that his izzat, his pride, would prevent him from doing all he could for the sick child. I knew Moosa and his colleagues might not know what to do either – Rosanna was the one I was counting on. ‘He’s desperately ill. We have to get him to Rosanna.’ Habib suggested I take his jeep and go myself with the boy. We piled into the jeep; the driver, a woman, another man, two more children and the boy’s father, who had wrapped his son in a blanket and was cradling him, as gently as he could, in his arms.  

Before we were halfway to the hospital, the father tugged at my sleeve. He gestured helplessly, wordlessly, towards his son, and I yelled at the driver to stop. The boy had stopped breathing. I wanted to try artificial respiration but as I knelt down beside the boy, his father shook his head. His son had gone; there was nothing more to be done.

Someone spread a patou on the stony ground and laid the child on it. His father gently closed his eyes, weighting them with two small stones, and tied his big toes together. Feeling totally helpless, and angry at the unfairness of it all, I broke down and wept, walking hurriedly away from the little, dry-eyed group gathered now in prayer around the child. I returned to the jeep wanting to continue to Qolijou – desperate for some reassurance from Rosanna that there was nothing I could have done – but the father wanted only to go home to bury his child. We returned silently to Mazar Bibi. 

When I saw Habib, and tried to tell him what happened, I felt the tears overflow and run down my face. I hurried off to hide in my room. A few minutes later Habib entered saying, ‘It is not your fault. No one could have saved him. Now, will you please come and check the other patients, so that these people can go home?’

I checked the two children, who both had high respiratory rates and prescribed antibiotic syrups begging Habib to get them to Qolijou as soon as possible so Rosanna could examine them.

The woman came in and lay down. Grabbing my hand she guided it to where I could feel a large swelling, about the size of my fist, in her abdomen. She told me that, of the six children she’d had, only one, born four months earlier, was alive. Again, I could only urge her to consult Rosanna. Along with my feelings of helplessness, was an overwhelming anger that so many people should suffer so needlessly. The war against the Soviets followed by a civil war had never seemed so utterly pointless.

Fortunately, there were happier times to enjoy back in Jaghoray. Jawad’s brother got married and Jon and I were invited along with Hussain and Rosanna.

The bridegroom (Jawad’s brother)
Rosanna between me and Jon at the wedding. We were all given beautiful embroidered handkerchiefs as remembrances
A young Jawad

One day, Baqul’s wife, Fatima, from Sangsuragh where our temporary clinic had been, came along with other friends to visit me. It was lovely to see them again. I took them to my room, where they insisted on coffee, in preference to tea, before settling to tell me all that had been happening in the village since I left. 

Latifa was now engaged to be married, her mother had recovered from the injuries received when her house had been hit by rockets, Hazrat had been released, unharmed, after Hisb-i-Islami kidnapped him and several women had had babies. It was a lovely afternoon and I was touched they felt the bond of friendship strongly enough to face a three hour walk – each way – to see me. They complimented me on the progress I’d made in learning Dari and our conversation flowed more smoothly than when we first met. 

Of course they all wanted to consult the doctor while they were at the clinic, but only if I stayed with them and personally supervised any examinations Hussain wanted to do. We trooped over to the consulting room where I was astounded by the change that came over them. In the privacy of my room they had been totally free and at ease, allowing their chaddars to slip off, breast feeding babies without bothering to do up their buttons afterwards. In front of Hussain, they once more shrouded themselves completely, and from conversing and laughing together at an ear splitting decibel level their voices were reduced to a barely audible whisper. Gul Bibi even refused to open her mouth to allow Hussain to examine her teeth yet, whenever he turned away, she would catch my eye, directing seductive looks at Hussain’s turned away back, eyes rolling, lips pouting. At the explosions of mirth from the other women, Hussain would whirl around, by which time Gul Bibi would have once more disappeared into the all-encompassing folds of her chaddar. The more irritated Hussain became, the more the women enjoyed their fun, but I was thankful when at last, consultations over, I could escape before Hussain’s anger erupted.

After my last post a couple of Hazaras left comments, including a YouTube link to a video of Sangi Masha bazaar and the bridge which some years ago replaced the scary one. I was fascinated by how different the bazaar looks and completely amazed at the new bridge so much so I sent the link to Jawad to confirm it was the same place. He replied to let me know the person who made the video, Mehdi Ahmadi, ‘is a cousin of my children’. Worth watching – it’s under twenty minutes, the bridge is about ten minutes in. ‘Meeting’ young Hazaras who are finding and enjoying my Afghanistan Adventures and sharing their own memories in the comments brings me so much joy and makes me feel I am still very much connected to Afghanistan and its people.

Mazar Bibi Clinic in winter – such a glorious blue sky

MarySmith’sPlace ~ AfghanistanAdventures#58 ~ Skulduggery and spies

Jaghoray, December 1989

Nothing to do with Jaghoray – this is Jawad, one time driver, now programme co-ordinator, taken between Lal and Waras on a recent tour

Hussain had sent messages from Jaghoray, warning us against going there, because the translators at Qolijou were making kidnap threats. Mubarak said two of the translators, accompanied by several mujahideen had been to Malestan asking about our expected arrival date and future travel plans. There were rumours the hospital had been handed over to Nasre, who wanted increased funding for the hospital and our Toyota. We spent the morning in endless discussions and pointless conjecture.

Mujahidden

Finally, I suggested I go alone to see Hussain, who had a tendency to dramatise any situation, and meet the translators, and Rosanna, in Qolijou. If Rosanna believed the situation to be dangerous she and I would come to Malestan together and leave from there for Pakistan. If it was nothing more than the usual over-reaction I’d send word Jon should come to Jaghoray. Rahimy insisted he come with me. Zahir and Sharif promptly volunteered to accompany us. Mubarak arranged the hire of his brother’s jeep.

As Jon and Mubarak waved us off next morning, I felt like a spy being sent behind enemy lines on an intelligence gathering mission. A glance at my three companions – one fourteen year old youth who looked about twelve, one extremely nervous ex-mujahid, and one very deformed leprosy patient, who at least succeeded in assuming a suitably sinister appearance with his turban tail drawn tightly across his face – and I decided we more resembled actors in a farcical spoof. We hadn’t even a Kalashnikov or pistol, between us.

It was still warm in Jaghoray, the sun shining in a brilliant blue sky with barely a hint of winter’s approach. As we were ushered into the staff room in the Mazar Bibi clinic, only Hussain, with much rolling of the eyes and warning finger to his lips, indicated that anything was amiss. The others welcome me back with warming enthusiasm. Soon, though, Hussain signalled from the doorway I should follow him. He explained the translators knew we were withdrawing financial support and were planning to steal the vehicle and kidnap Jon until we agreed to fund their hospital. He was horrified when I said was going next day to Qolijou to meet Rosanna. 

Jaghoray’s jagged mountain peaks

The bush telegraph worked fast. Before the end of the day I received visits from the renegade translators who had recently opened their clinic in Angoori. They insisted Jon, Rosanna and I were in the greatest danger. Khudadad, my erstwhile travelling companion, still with the Qolijou team, arrived to assure me I was his sister, Jon his brother, and, of course, we were in no danger.

The bridge which terrified me

Next day, an unwilling Hussain took me to Qolijou where Rosanna was bursting to tell me all the news. When the defectors left to open their new clinic, there had been resentment on the part of Moosa and the others, but no open hostility until Dr Pfau’s visit. At a meeting with the remaining translators, she’d been asked about future financial assistance and said we couldn’t finance the hospital. She also told Zaman that the others, in Angoori, liked him and he was welcome to join them there, told Khadeem that he hadn’t enough knowledge for medical work, was too stupid to learn and should go home. To round things off she informed Moosa that he was a thoroughly bad and dishonest person, who did not deserve any help at all. Then she blithely left for Pakistan, leaving Rosanna trying to smooth ruffled feathers. The disgruntled translators had run to the Nasre political party saying we were closing the hospital.

Hussain – taken earlier in the year

Moosa assured me there was no kidnap plan but they did want to talk about the future of the hospital – a reasonable enough request, I felt, so I sent a message with the clinic driver to tell Jon to come to Jaghoray. I didn’t know Hussain had sent a contradictory message. Bewildered by the conflicting advice, Jon decided on a long detour, which would bring him to Mazar Bibi, without having to enter Sangi Masha bazaar.

Usually a two day journey, because of snow on the passes, and having to wait for someone to bring chains for the vehicle, it took four days. During one of his overnight stops, my camera and ten rolls of exposed film were stolen from the Toyota – something over which I still grieve and about which I remind Jon whenever he shows any inclination to play cloak and dagger games or doubt my judgement of a situation.

Out for a walk

While waiting for Jon’s arrival I attempted to calm Hussain’s mounting panic. He’d convinced himself that, if the translators found themselves without financial support, they would with Nasre’s help steal his clinic’s medicines and money. The building work was finished. The new clinic was very well run, and kept immaculately clean by Ismail, who was also responsible for the beautifully kept stock in the storeroom. Around twenty five patients attended clinic each day, and Hussain now had eighty leprosy patients on his case load. If the Qolijou problem could be solved, I would feel reasonably content with the work achieved in Jaghoray.

A meeting was called, attended by Commander Irfani of Nasre, Hajji Bostan, one of the party’s leading lights, the Qolijou staff with Jon, Rosanna and me. Moosa provided us with an excellent dinner during which nothing controversial was discussed and, only when the tea arrived, did the real talking began. Jon explained our initial support had been given, on a temporary footing when the French organisation left, on the understanding the translators looked for another organisation which could provide long term assistance. Leprosy work, which the staff at Qolijou did not wish to do, must remain our priority, and we already faced problems in finding sufficient funds for our work.

In reply, Hajji Bostan, ignoring all Jon had said, gave a long rambling speech recounting the history of Qolijou – which everyone already knew – and spent a full twenty minutes on giving flowery thanks for all that we had done. I squirmed at the hypocrisy of the man who, because we insisted on remaining independent, refusing to be under his Party’s control detested our organisation. He asked Jon to give a reply. He, in turn, added the necessary bit of soft soap by referring to the warm relationship which existed between us and the workers of Qolijou, how much they had done to meet the health needs of the people, how he hoped their fine work would continue – with the aid of an organisation better able to support them than we were.

I thought, soft soap and flannel having been lavished on both sides, we could move on to the business of discussing how they were to find such an organisation. Hajji Bostan took the floor and began to repeat all he had already said. As all the speeches were being translated I feared the proceedings would take all night. Noticing that Commander Irfani, who hadn’t said a word, was actually nodding off to sleep, I asked if I might say something.  

Commander Irfani opened his eyes. I said that, although we were aware of the struggles the translators had faced in the past and that our inability to continue funding presented yet another obstacle, this meeting was to discuss the future, not the past. I suggested we use the time to start making proposals to present to aid organisations, and talk about the ways in which we might be able to help the translators secure future funding. As Moosa translated, Commander Irfani straightened up, looking relieved that the tedious speechifying had at last ended.

Hussain and I enjoying dinner

I volunteered to help write up project proposals if the translators would give me the information required on the kind of work they were planning. After further discussions, made lengthier than necessary by Hajji Bostan’s continued interference, the translators agreed they would start a trial tuberculosis control programme. When I was back in Pakistan I would write up the proposal, one of the translators would bring completed budget figures and would be steered in the direction of as many likely organisations as possible. Commander Irfani seemed to accept the points Jon made about our inability to continue to finance the hospital and appeared satisfied with the outcome of the meeting. Only Hajji Bostan was far from pleased – he relished making trouble.

MarySmith’sPlace – Cancer diary #07

Cancer diary #07

Monday, October 19: The beginning of this week was horrible; horrible enough for me to absolutely dread the next round of chemotherapy. Apart from the heartburn (and thank you everyone for your suggestions – it has gone – for now) I had a cough, my stomach hurt, my scalp hurt, my mouth was sore (the poor cat has been quite distraught because she enjoys sharing my usual bedtime snack of baked cheese and onion crisps and I couldn’t bear to eat them), and I had diarrhoea (a change, though not a particularly welcome one, from constipation). On top of those side effects was the dreadful tiredness which dragged me down into a trough of despondency and apathy. And temper. Oh, good grief was I bad tempered!

I couldn’t see any point in going through this, for what might only be an extra year – not least because with all that is going on with Covid-19 cases rising and lockdowns all over the place the prospect of my current self-isolation continuing for what be the rest of my life didn’t bear thinking about.

And, with the worry of my kidneys not functioning as they should I was glugging down my two and a half litres of fluid every day so my tummy felt bloated and I was constantly nipping to the loo – including several times during the night.

In the beginning, I talked with doctors about wanting to have quality of life for whatever amount of time I had left – this wasn’t what I mean by quality.

Also, I had a painful foot. Come on, guys, lung cancer is quite enough, without throwing other minor problems at me. And did I mention I was bad-tempered?

I kept looking back to the days following the first chemo and thinking, well I was fine by Tuesday so maybe tomorrow I’ll be all right again. Tomorrow arrived and I wasn’t all right. Aware countless people have gone through chemotherapy with much worse side effects made me feel I was being a complete wimp.

On Friday evening, a full week after chemo, it was as though someone had flipped a switch and I was back to being me. Just like that. Extraordinary! Life was sweet again. On Saturday my brain was functioning enough for me to do my Afghanistan blog and reply to some of the many outstanding emails. The DH and I had a grand day out on Sunday, visiting the White Cairn burial chamber followed by hot chocolate at the Glentrool Visitor Centre – just an ordinary, normal outing, which a few days earlier I couldn’t have imagined being able to do again.

White Cairn burial chamber, Glentrool, Dumfries & Galloway

Something which really gave me a huge psychological boost and kept me going was a private message from someone who had read my cancer diary. She’d been prompted to have a lump in her breast – which she’d been ignoring, hoping it would disappear – checked out. She does have cancer but will have surgery soon, followed by radiotherapy and probably won’t need chemo. I’ve worried about my cancer diary being a bit self-indulgent but this has made me feel it really is worth doing.

Another nice thing was a phone call from the cancer specialist nurse to say my bloods show my kidney function is improving – yay! Huge relief – though it does mean having to continue getting those litres of fluid into me. But, now I know it’s working, it’s a small price to pay.

And, Kim Ayres sent through the photos he took last week. One I deleted immediately as it showed up all the wrinkles – and my goodness, there are many – on my face and neck. The DH and I can’t decide which we like best – the one to frame and put on the mantelpiece – the one which says, “This is us”. 

Which do you think?

Finally, this week of huge downs and sweeping ups ended with having CT scans today to see if the tumour is shrinking – or spread anywhere else. I won’t know until next Monday when I have an appointment with the oncologist. If the tumour is shrinking – and my kidneys are up to it (the particular drugs I’m on apparently can cause kidney damage, something which is in the six pages of side effects but hadn’t sunk in) – I’ll continue with the chemo. If it’s still growing, then we need to have a whole different discussion. It’s going to be a long week, but at least I’m feeling well and able to do things to take my mind off worrying about it. I might even get some writing done!  

MarySmith’sPlace – AfghanAdventures#56 – caught in a bombing raid

To de-stress after completing Arif’s accounts we went shopping in Tezak bazaar, where I’d spent the first night on the road, when travelling north with Khudadad almost six months ago.

The teahouse gossip concerned a recent bombing raid on the bazaar. The Kabul Government suspected mujahideen base camps were close to Tezak. I was puzzled there was so little evidence of bombing raids and was told since the mujahideen had acquired anti-aircraft guns, bombers could no longer fly in so low. The pilots were forced to drop the bombs from a much higher height, sacrificing accuracy for safety.

I wondered how I’d feel if I were ever caught in a bombing raid. Apart from here in Tezak, where the men assured us there would be no bombing for some weeks yet (how could they be sure?), our travels never took us near places of any significance in the war. However, on my second time in Afghanistan the following spring, I found out.

We weren’t supposed to be in Sia Huq the day it was bombed. A broken leaf spring, which refused to be held together any longer with bits of wire and string, forced us to make the detour. Sia Haq, once a tiny village barely two hours from Kabul, had become a major transport depot held by the mujahideen

The repair job meant an overnight stay, yet another unscheduled delay on our journey from the leprosy clinic in Lal sar Jangal to Jaghoray, en route for Pakistan. We decided to kill time shopping for our evening meal. After weeks in Lal, which has no vegetables, except turnip, nor fruit the sight of mangoes had Jon, Mubarak and I, who’d lived in Pakistan and knew the delights of mangoes, whooping with glee. Juma and Abdul Hamid, neither of whom had ever been out of Lal, were unimpressed. 

Our enterprising landlord, whose rooms were full of truck drivers, had erected a tent on his flat roof for our use and there we dined on spring onions, tomatoes, yoghurt and fresh, hot nan washed down with tea. 

Mubarak and I in our rooftop tent

In the morning, Juma and Abdul Hamid were doing some last-minute shopping, Jon had gone to collect the repaired Toyota and Mubarak and I were chatting idly in our roof-top eyrie. We are talking, strangely enough, about how many airports there had been in Afghanistan before the war, when we heard the first hum of a plane, high overhead.  Not used to such sounds I commented, rather obviously, ‘That’s a plane.’

‘Yes,’ replied Mubarak, ‘It’s a jet.’  We sat looking at each other for a few seconds and then heard a whump and a bang.

‘Was that a bomb?’ I asked.

‘Yes.’

Looking towards the transport depot

And what did we do?  Did we get off that exposed rooftop, run for shelter? No, we moved to the edge of the roof for a better view, seeing people running here and there, yelling, and screaming. A great cloud of dust spiralled skywards, indicating where the bomb had landed. ‘No damage done,’ murmured Mubarak, ‘it only hit the mountain. Still, maybe we should move, in case there’s more.’

Where the first bomb dropped

We were gathering together bits and pieces, with what I thought of as admirable calm, when Jon’s head appeared on a level with the rooftop. ‘What the fuck are you two doing here? Get down! Now! There’s a shelter behind the hotel. Get going.’ So, we “got going”. The planes came back time and time again, always flying too high to be reached by the anti-aircraft guns, which soon fell silent. Of course, the higher the plane, the less chance there was of the bomb scoring a direct hit on the transport depot full of trucks and fuel supplies: which meant – not a reassuring thought – the bombs could land anywhere.

The shelter, cut into the side of the mountain was full to overflowing.  Although the men offered me a place I decided to take my chances out in the open, hugging myself close to the rock. Mubarak on one side of me was murmuring over and over, ‘What a country, what a country’, while Jon on the other, was still nagging me for not running for shelter at the first sound of the jet. 

Emerging from the bomb shelter as the sound of the planes died away
Heading back into the shelter as the jets returned

During a lull, we decided to head further up the bazaar towards the depot, with the intention of moving the Toyota to a safer place. The brain must have some kind of pre-programming, because although I’d never been bombed before, as another plane flew over, I was suddenly face down on the ground, practically kissing the dirt. You do it by instinct. Like in war films!  I felt strangely embarrassed when I rose to my feet along with everyone else in the street. Fear is so undignified.

We met a man being pulled along on a handcart. Blood poured from a smashed elbow and we could see bits of bone, gleaming white amongst the crimson. Taking him into an empty tea-house, Jon sent me to fetch the first aid kit from the Toyota. As I ran along the almost deserted street, chaddar flying, a man tried to stop me, shouting at me that it was dangerous. When I kept going he, assuming I hadn’t understood him, ran in front of me, arms outstretched, making aeroplane droning noises, going BOOM at intervals, repeating the words khaternak, khaternak – dangerous. With no time to discuss the situation I threw out the words injured and doctor. Satisfied, he nodded and let me go.

Approaching the depot I understood what he meant about dangerous. The place was an inferno. Trucks and barrels of fuel were blazing everywhere; great chunks of metal were flying in all directions. No-one was about. Spotting the Toyota, mercifully not burnt to a cinder, I suddenly pulled up short. I’d forgotten the keys. Stupid, stupid, stupid, I scolded myself as I moved swiftly towards it, wondering if Jon would think smashing a window was justified. Luckily, the blast had neatly taken out the front passenger windscreen and I was able to climb in and grab the first aid kit.

On the way to the transport depot

Back at the tea-house Jon was gently cleaning the injured man’s arm. He dressed the wound, gave him painkillers and his friends set off to take him to the clinic on the edge of town. We knew the arm would have to be amputated. The raid was over and people were beginning to return to their shops and businesses.

Jon went off to see about the Toyota and Mubarak and I returned to our tent. Juma was there, wide-eyed and in shock, but of Abdul Hamid, there was no sign. Jon returned saying we could leave in about an hour. We spilt up and searched the bazaar for Hamid.

A Commander came to see us. ‘Five people have been killed. We know four of them but the fifth we can’t identify. It might be your man. Can someone come and look?’

Jon went, returning white-faced. ‘The man they don’t know has no head. Can you remember what colour of shoes Abdul Hamid was wearing?’

‘Brown and white,’ I replied promptly. I’d thought the two-toned brogues were hideous.

‘OK. This man has black shoes. Had.’

It was another two hours before we spotted Abdul Hamid, wandering through the bazaar, totally disorientated. We never learned where he’d been – all he could remember was the first bomb dropping and then running, running, along with everyone else. 

At the depot

We piled into the Toyota to leave Sia Huq, travelling in silence as we each came to terms in our own way with had had happened.  After a few miles, Mubarak’s soft voice asked, ‘Did anyone remember to bring the mangoes?’ 

We stayed overnight near Tezak. None of us slept well. Knowing how frequently Tezak had been bombed in the past, it was not the most reassuring of places to be. When the sound of an aircraft was heard above us, I asked hopefully, ‘That’s a commercial plane, isn’t it?’ 

‘No,’ I was told tersely, ‘but they don’t usually bomb us at night. It is too dark.’ I decided that under no circumstances was I going to go out to the loo with a torch in my hand. Just to keep us on our toes, after the plane had vanished into the night, two mujahideen from different Parties, posted at the Paygar next door to our hotel, had a disagreement. They attempted to resolve it with a shoot-out, until the Commanders stepped in to reprimand them.

Two days later we heard the Government had bombed Sia Haq again – this time, almost totally destroying the bazaar. It was in retaliation for the mujahideen hanging two Government spied in their midst.

Jon looking a bit bloodied – but not his blood.

Poor Abdul Hamid, who had never been further than Bamiyan, took a long time to recover and remained nervous until we reached the Pakistan border. He was fated to be an unlucky traveller:  his first meal in Pakistan contained a large, well cooked, but decidedly off putting, cockroach. In Quetta, the office cook, house-sitting our house while we were on leave was murdered and being a stranger, Abdul Hamid was arrested and held in jail for two weeks. On his return journey to Lal, the vehicle in which he was travelling was stopped by bandits who stole all his money. He vowed never to leave home again.

MarySmith’sPlace – AfghanistanAdventures#55 – Pesky commanders, dentistry & an inside loo

l to r: Ashraf, Arif’s Field Assistant , Arif, and important people

Afghanistan, December 1989

When I requested a tour of the premises Arif led me up and down staircases and along passages and in and out of so many rooms I lost all sense of direction. From the guest room there were two exits, one leading through the kitchen down a flight of stairs to the storerooms below, one of which was filled with a supply of wood for winter heating. The second exit from the guest room took us along a short passage to the consulting room and the pharmacy. I was astonished to think this had been built as an average family home. Arif rented the premises from the owner who lived in Kabul with his family. He did say the landlord was a wealthy man, so perhaps his home was more splendid than average. I haven’t found any photos so I guess I didn’t take any – have included random pics for you to enjoy.

I particularly liked one of the upstairs rooms, which was empty and unused; a beautiful room with fret worked wooden designs decorating the walls and ceiling, arched alcoves in the walls. Sunlight streamed through two large windows which gave onto a view of the sloping hillside below us. ‘Why don’t you use this room? It is lovely,’ I asked.  

Arif agreed, ‘Yes it is a nice room but there is no heating and it is too cold. If we were going to stay here I would install a bukhari but as you know we are going to build a new clinic in Saydabad.’

The decision to move the clinic had been taken earlier in the summer. Arif was not from Day Mirdad and had faced difficulties in being accepted by the people who were suspicious of strangers. These problems had been made worse by the animosity between Pashtun and Hazara, both of whom came daily to the clinic. Frequent disputes arose as they waited in the compound to consult Arif. The Pashtun people did not trust Arif because he worked with Hazaras, and often went touring in Hazara areas to treat leprosy patients. The Hazaras were equally suspicious of him because he was Pashtun. There were no leprosy patients amongst the Pashtun in the surrounding district and they resented the clinic being closed when Arif went to his monthly tour programme to treat Hazara leprosy patients.

I spotted a staircase leading further upwards. ‘What’s up there? More empty rooms?’  

Arif replied, ‘The bathroom and toilet.’ Eager to see an inside loo and greatly intrigued as to what kind of plumbing system was used, I went upstairs. It was a hole in the floor, but the room had been constructed to jut out from the rest of the house so the waste dropped down a three storey lift shaft to a deep pit below. I’ve seen such arrangements in old Scottish castles.

Next morning Rahimy, bored with having no work to do, offered to help in the clinic. Jon frowned forbiddingly over Arif’s accounts. From time to time, Arif would take a break from his patients to come and see how things were going. As he became more manic, the more silent Jon became. The building estimates for the new clinic were too high, and Arif had already overspent on the work done. The difficulty in finding money from donors was explained and when I suggested he could perhaps manage with fewer rooms; perhaps an office and two guest rooms were not entirely necessary, he seemed agreeable to the suggested cut backs.

I was silently congratulating myself on how easy it had been, when he took the wind out of my sails. ‘Now it is winter the builders will not be able to work until next spring. You can go back to Pakistan and write your reports for the donors – I shall tell you many stories, sister, stories they will like – and get the rest of the money we need for the building to continue in spring.’

I repeated all the arguments and finally, the budget was reduced to an amount more or less acceptable to both parties, though I suspected we’d have the same arguments the following spring.

In the meantime, I was happy to hear Arif’s stories. Each month he travelled to one or other of the treatment points, established to allow patients from further afield to come for medicines. Once, on the way, he was kidnapped by a Party commander and imprisoned in a mountain cave. The commander and his men spent several days joy riding around in Arif’s jeep, almost wrecking it in the process. When Arif did not arrive at the expected time at the treatment point, the people began to worry about him, and when his jeep, mujahideen spilling over the sides, was spotted, they guessed what had happened. The villagers marched, en masse, to see the commander, demanding Arif’s release. The commander tried to persuade them it was in Arif’s interests for his clinic, medicines, equipment and money to come under the control of the commander and his Party – so they could ‘look after it’. The people insisted the clinic, the jeep and everything else belonged, not to the Party but to them. Sweeping aside the commander and his men, they released Arif from his mountain jail and carried him, shoulder high, back to the village.

Despite a tendency to tell stories which dwelt rather lovingly on his superior medical knowledge and his excellent public relations successes Arif was also able to tell stories against himself – such as his first tooth extraction. Not having any dental equipment other than local anaesthetic and dental cartridges, Arif sent his assistant to the carpenter to procure a pair of pliers. In the meantime, he prepared the anaesthetic. His patient, despite the pain his rotten tooth was causing, became slightly anxious.

‘Sister, it was dreadful. I forgot how hard gums are. When I tried to inject my patient the needle bent, just like this.’  He crooked his finger to demonstrate before continuing, ‘Most of the anaesthetic dribbled out of his mouth, so his lips went numb more than his gum. Ashraf brought the pliers and I tried to pull the tooth out. You know, Sister, I am a very small person – and that tooth was deeply rooted. It was a struggle. By this time, my patient wanted to leave, and tried to get out of the chair but I put my knee on his chest and pulled really hard. The tooth came out. There was a lot of blood, though, and the patient was not happy with me.  I did not charge him any fees for this service.’ Having been a lifelong coward in the dentist’s chair I could feel my toes curl as Arif told his story.

A butcher’s shop

Another commander objected to Arif working amongst the Hazaras and was trying to push him out of the area. When Arif was visiting a village on tour, he was asked to go to the home of an old woman who needed medical treatment. The woman had an eye infection which had caused her pain and distress for some time but it was easily treated. It turned out she was the commander’s mother. When Arif returned to check on the progress of her eyes, the woman asked if there was anything she could do for him. He explained the problems he was facing because her son did not want him to work there. She assured Arif he would have no more trouble and indeed, a few days later, the commander himself arrived at the clinic – bringing a gift of a chicken from his mother, and assurances that Arif could come and go and work freely in his area.

Bazaar scene

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.