My friend Lynn emailed the following to me. I don’t know where the points originated so can’t credit who wrote the original but thought they were well worth stealing and passing on. We need a wee smile at the end of this particularly crappy year, don’t we?
10 Points to Ponder as 2020 draws to a close …
1. The dumbest thing I ever bought was a 2020 planner.
2. 2019: Stay away from negative people. 2020: Stay away from positive people.
3. The world has turned upside down. Old folks are sneaking out of the house & their kids are yelling at them to stay indoors!
4. This morning I saw a neighbour talking to her cat. It was obvious she thought her cat understood her. I came to my house & told my dog…. We had a good laugh.
5. Every few days try your jeans on just to make sure they fit. Pyjamas will have you believe all is well in the kingdom.
6. Does anyone know if we can take showers yet or should we just keep washing our hands?
7. I never thought the comment, “I wouldn’t touch him/her with a 6-foot pole” would become a national policy, but here we are!
8. I need to practice social-distancing ….from the refrigerator.
9. I hope the weather is good tomorrow for my trip out to the bins!
10. Never in a million years could I have imagined I would go into a bank with a mask on and ask for money.
Monday, December 28: I’m about to pack my case for the next trip to the Edinburgh Cancer Centre tomorrow (actually, that’s rubbish I’ll be throwing things in the case at the last minute tomorrow morning!). Now I’ve had four treatments and know what to expect I’m less nervous than I was last week. Although, after five days of stuffing my face with Christmas fare. I’m a bit concerned my mask won’t fit me anymore.
I seem to be the only person worried about the amount of weight I’ve gained – and am still gaining – since my diagnosis. Everyone else tells me it’s good because my body needs the calories to repair itself from the radiotherapy – plus, I may yet become unable to eat because of a very sore throat. My walk from hotel to hospital and back isn’t really going to do much for weight loss, nor is the food in the hotel. It is pub grub: burgers (which don’t come singly but in a ‘stack’ of two, chicken wings, wraps, fries – thin fries, lattice fries, sweet potato fries (are they less fattening?) and all in large portions. I chose a ‘super salad’ one night and it was enormous packed with quinoa, peas, broccoli, avocado and goodness knows what else.
I’ve only two nights there this week but after New Year I’ll be staying for five nights a week for two weeks. I have to do something or I’ll be the size of a bus. The receptionist did say the kitchen staff would be very accommodating if I wanted to request something different. A bowl of homemade soup would be welcome.
I know some of you already know about radiotherapy, having experienced it, but for those who aren’t sure what happens there’s an explanation on the Macmillan website here. I asked if I could take a photo of the machine. I have to stop myself from using expressions like sci-fi because, of course, this isn’t science fiction but science fact.
My mask waiting for on the table under the radiotherapy machine. The black objects on the mask are the screws.
Once I lie down, with my little bit of kitchen towel to protect my modesty, the radiographers fit my mask and fasten me into place – this sometimes takes a bit of faffing around to get it right but it doesn’t feel so bad now. The table I’m lying on is then raised. By then I have my eyes shut. And my mouth, though they assure me I can open my mouth. I haven’t tried it yet though on the last treatment my lips did twitch slightly in a smile. This was because, although I know there isn’t one, the machine makes a noise, which in my imagination sounds like a little robot on tiny metal feet scurrying from one side of the table, behind me to the other side to direct the next beam of radiation before scurrying back again. In fact the machine rotates.
They put the light out so I could capture the infrared beams which criss cross me – but I failed. Did get a close up of those screws!
Two YouTube videos show exactly how it works. The first one is short; the second one is longer and shows how different kinds of cancer are treated. Both give you the idea of how the machine works – though the second one is my favourite with its dramatic soundtrack. You only need to see the first couple of minutes to get the idea.
I also took a photo of my tumour – or, at least, the area which is being treated – reflected from inside the head of the machine on the floor.
The area they treat reflected on the floor. And you can see one of the infrared beams.
Then, I took one directly up into the head of the machine and got this image. The radiographer explained lead leaves fit round the treatment area and can move when the machine moves around me, shaping the beam of radiation to the tumour. It means the cancer cells in the tumour receive a high dose and normal healthy cells nearby receive a much lower dose. I think that was the explanation. I was so excited at the image I’d captured I’m not sure if I took in all she was telling me. The wonderful thing about the radiographers is they will explain it to me again and answer any other questions even though they must have answered them all countless times.
Isn’t that incredible? How can something so beautiful be trying to kill me?
It’s strange to think it will be 2021 when I write my next update. A few months ago, I wasn’t sure I’d see Christmas this year and now I’m looking forward to spring (hope I’m not tempting fate) and seeing the bulbs I planted in bloom and meeting Sue in April and Barb and welcoming a great niece into the world.
Wishing everyone all the best for 2021 – we all so much deserve a better year.
Who doesn’t love finding some new books under the Christmas tree? This year I gave my book wish list to my son – then the latest Covid restrictions meant we couldn’t meet up after all so I’ll have to wait until – well who knows when?
For some reason, thoughts about the books I’m looking forward to receiving triggered memories of books I loved as a child.
Amongst my favourites was What Katy Did by Susan Coolidge. I also loved What Katy Did at School – remember the game of rivers in the schoolroom? – though What Katy Did Next didn’t capture my imagination in the same way. I remember once snapping shut What Katy Did saying, “Thank goodness, I’ve finished.”
My mother asked if I hadn’t enjoyed it. And when I assured her I had, asked, “So why are you pleased you’ve finished it?”
“So I can read it again,” I said. And I did, many times. The number 23 resonates but I couldn’t have read it 23 times, could I?
What was the allure of What Katy Did and what she did at school? I decided to find out by re-reading. It was like bumping into an old, much-loved friend. As soon as I began I remembered everything, could almost recite parts of it. While there are some things with which my adult self takes issue – the message that disabled people should be good and kind and sweet-natured – I understand why as a child I loved Katy so much. She was real. She tried to be good but, like most children, she usually failed. She wrote stories, she and her brothers and sisters played daft games and wreaked havoc.
And the narrator took Katy’s side most of the time, which I suspect was unusual in those days. When Katy disobeyed Aunt Lizzie and used the swing in the barn the narrator points out although she was wrong to ignore her aunt, it was also wrong of the aunt to expect unquestioning obedience. I must have relished a grown up person (as the narrator is) taking the child’s side – perhaps that when my need for explanations was born!
I was a voracious reader throughout my childhood – unlike my younger sister who, having read a Hardy Boys novel declared it was the best book she’d ever read and refused to read another book for several years because, she insisted, “It won’t be as good as that one.” I’m pleased to say she did return to reading and enjoyed many other books just as much.
Johanna Spyri’s Heidi was a great favourite; though I have a feeling re-reading it now would probably tarnish my glowing memory of it – another of those ‘disabled people are good and sweet’ books. And I now know from experience I do not like goat’s milk.
Found my copy in the attic.
I’m sure I’m not alone in listing Enid Blyton’s The Secret Seven series and The Famous Five as well-loved, often-read books. More and more memories of happy reading flooded back: the Malory Towers series by Enid Blyton or The Chalet School series by Elinor Brent-Dyer let me enter a different world of boarding school, tuck boxes and midnight feasts in the dorm. The nearest I came to a midnight feast was when my friend who was visiting her grandparents next door agreed to meet in my garden shed at midnight. We climbed out of our respective windows but when she cut her finger trying to open a tin of corned beef she ran home, blood dripping down her granny’s nightdress.
The Pullein-Thompson sisters allowed me to live in a world of ponies and I loved Pat Smythe’s Three Jays series.
When I was older, and still pony less (my parents said we couldn’t afford one as they cost a lot to feed – although Dad was always complaining about having to cut the grass) my absolute heroine was Pat Smythe. I was so shocked when I learned Pat’s horses were chosen for the Olympics but she wasn’t allowed to ride them because women weren’t allowed to compete against men until 1956 (I was only two then. I read about it later). For a while, I became a horse, jumping clear rounds at White City: a series of homemade jumps around the garden. Played havoc with Dad’s grass cutting.
I’ve missed out so many: The Secret Garden – and a very odd book called The Nabob’s Garden – The Borrowers, my list of well-remembered and much loved books could be endless!
Little Women – who didn’t want Jo March for a best friend?
Monday, December 21: The day after my last post, I received a call from someone – I think a nurse – saying the oncologist had asked her to let me know she had decided to go ahead with the original radiotherapy. I started to protest about having had eight days of wondering and worrying but realised there was no point in shooting the messenger. She also asked if I’ll like a room booked at the hotel – yes please. And would I like a taxi to take me to and back from the hospital – no thanks. It’s a fifteen minute walk.
On Friday, the oncologist called to say she had changed the schedule! I was less reticent about the chopping and changing. She explained it was because she was concerned about the fact I was having double doses of radiation on three of the days and felt there was a safety issue and it could increase the side effects. Understanding the reasoning behind the changes made such a difference to how I felt.
I won’t be having double doses and will have two Saturday sessions and a final one which will mean coming up and returning home on the same day. She said she’d booked the hotel room and made the arrangements for the extra Friday nights. When the DH checked, the hotel hadn’t had any NHS bookings but the very helpful receptionist said she’d contact the booking person. She called back to say it was sorted. I dread to think how I’d have reacted if we arrived to find no room at the inn.
While I had the oncologist on the phone, I used the opportunity to express some of my concerns, not least that there seemed to be no channel of communication between patient and the consultant. I totally understand we can’t have a direct phone number – consultants would never get their work done with patients calling all day with queries. But, I did want to know there was a way of getting any questions to her. She said I could always pass a message via the specialist nurse.
I said I wouldn’t trust her to pass on a message. There was a pause at the other end so I asked her if she ever received the research papers I’d sent. Another silence then, “No, I didn’t.” This, despite the fact the nurse had told me she’d pass them to the oncologist.
“That’s when trust broke down,” I explained, “and it’s not possible to repair things.” I didn’t tell her about the little power games she plays, like withholding my blood results until I ask, and finally, insist on knowing them. I think perhaps I did mention her voice, which oozes sympathy, but no empathy.
“Well,” she said when I finally shut up, “if it’s any consolation to you, she’s leaving after next week. I think her replacement is excellent.”
Though she probably won’t ever call me again – our conversation took as long as our last face to face consultation – I felt quite buoyed up by the time the call ended. Explanations to make sense of things, communications are wonderful things.
As the day of my first radiotherapy approached, I found it difficult to sleep. Even when I told myself it would be fine, thousands of people have radiotherapy without major problems, friends have shared their stories to reassure me – but my subconscious clearly was not listening. The main worry is that my throat will be so sore I will first need morphine and when that doesn’t work a feeding tube. My oncologist has told me about these side effects so often they are seared into my brain. I told her if I needed a feeding tube it would have to be a peg tube in my stomach as there was no way anyone could get a tube up my nose. Then, I started worrying about how I could have a tube (down my throat) while wearing that mask.
The DH drove me to Edinburgh. I checked into the hotel. We went to the Cancer Centre. Someone took off for a chat about everything – when I expressed my fears about feeding tubes she said it was not likely I’d need it – I would have a sore throat but they could do something about it before it reached the stage of needing a feeding tube. As for the mask – apparently they cut a hole in it for the tube – so I know it is sometimes necessary, but am trying not to dwell on it. She said I’d be fine for the first week and would be able to eat Christmas dinner without a problem.
Finally, I was called into the room where it all happens. I can’t tell you much because the moment the mask goes over my face my eyes are shut, so although she had explained the bits of machinery moving around she said I’d see, I didn’t. A few minutes of wrestling with the mask, which as tighter even than the last time (is my face getting fatter?), and the radiographers leave the room and there’s just me and the machines.
The actual treatment took only two or three minutes.
It’s the winter solstice and the days will start to lengthen, even if we aren’t aware of the change immediately, so I hope it’s an auspicious day to start the radiotherapy – one down, 19 to go.
I didn’t get round to putting up a post on Saturday because I was so gutted when the latest Covid restrictions came in which means I won’t be able to see my son at all over Christmas.
I thought today, instead, I’d post some photos of Mazar-i-Sharif but when I went searching through my picture and scan files I couldn’t find what I wanted. I know they are there, somewhere (usually spotted when looking for something else entirely) – a reminder I really must organise my filing system.
Oh, well, I thought, if I don’t up a post it’s not a problem – the world will still keep on turning, besides I still have to pack for the next few days in Edinburgh. As part of those preparations, I’m about to stock my Kindle. It suddenly occurred to me that perhaps some people out there might want to put one of my books on their own Kindle – so I offer a blog post which is a bit of shameless advertising!
Those of you who have enjoyed my posts about my first trip to Afghanistan may also enjoy Drunk Chickens and Burnt Macaroni: Real Stories of Afghan Women, a memoir which covers my later years in Afghanistan.
Blurb: This is a unique portrayal of the lives of ordinary Afghan women before and after the Taliban regime. The reader is caught up in their day-to-day lives sharing their problems, dramas, the tears and the laughter: whether gossiping over tea or learning how to deliver babies safely.
As well as the opportunity to enjoy meeting the women, Drunk Chickens and Burnt Macaroni takes the reader on a journey through some of the most stunning and dramatic landscapes in the world And if you want to know why the chickens were drunk and the macaroni burnt – you’ll have to read the book! Only £2.99. Find it on Amazon: http://smarturl.it/dcbm
For those who prefer fiction, No More Mulberries is a novel, also set in Afghanistan.
Blurb: Scottish-born midwife, Miriam loves her work at a health clinic in rural Afghanistan and the warmth and humour of her women friends in the village, but she can no longer ignore the cracks appearing in her marriage. Her doctor husband has changed from the loving, easy-going man she married and she fears he regrets taking on a widow with a young son, who seems determined to remain distant from his stepfather.
When Miriam acts as translator at a medical teaching camp she hopes time apart might help her understand the cause of their problems. Instead, she must focus on helping women desperate for medical care and has little time to think about her failing marriage. When an old friend appears, urging her to visit the village where once she and her first husband had been so happy, Miriam finds herself travelling on a journey into her past, searching for answers to why her marriage is going so horribly wrong.
Her husband, too, must deal with issues from his own past – from being shunned by childhood friends when he contracted leprosy to the loss of his first love. £2.32 Find it on Amazon: http://smarturl.it/nmm
For lovers of short stories, I suggest Donkey Boy and Other Stories
Blurb: Shot through with flashes of humour the stories here will entertain, amuse, and make you think. Mary Smith’s debut collection of short stories is a real treat, introducing the reader to a diverse range of characters in a wide range of locations. A donkey boy in Pakistan dreams of buying luxuries for his mother; a mouth artist in rural Scotland longs to leave the circus; a visually impaired man has a problem with his socks; and a woman tries to come to terms with a frightening gift – or curse. Only 99p (Paperback £4.99) Find it on Amazon: http://smarturl.it/dbaos
Several illustrated local history books are available in both ebook and hard copy. More details of those are on my Amazon page here.
And finally, the most recent publication, to which I contributed along with 21 other writers, is Writedown: Lockdown in the Galloway Glens at the Time of Covid.
Blurb: Writedown provides a unique record of life in Galloway, south west Scotland during lockdown through the work of 22 writers in a collection of lyrical poetry, desperate rants, humour and quiet endurance. They tell the story of how a community dealt with unprecedented times. eBook £1.99 Find it on Amazon: http://smarturl.it/writedown
Hope you might find something that takes your interest.
Monday, December 14: When I met with the oncologist last Monday, I’d already received from the Edinburgh Cancer Centre my appoint for the planning scan (08 December) and the verification scan (16 December) and a complete schedule for radiotherapy treatments, starting on 21 December.
The oncologist said she was thinking about making some changes to the schedule, perhaps delaying the start date. A week later I still haven’t heard what’s happening. As the accommodation previously provided for patients who have to travel a long distance has been closed – and I really do not want stay on a ward – the DH had booked a hotel room for me from the 21 December. He mentioned this to the oncologist as we need to know when to cancel it.
“Why aren’t you booking it through me?” she asked. “We take some rooms at that hotel and it wouldn’t cost you anything.” Behind out masks we gaped at her – this was the first we’d heard of accommodation being provided for me. We said we were very grateful. She said she couldn’t guarantee there would be a room available. Now, I don’t know when I start radiotherapy (I’ve been holding off writing this in case there was a letter in the post or a phone call today) or if I will have accommodation (other than in a ward). If I do start as originally scheduled I get to see my son as he will come through from Glasgow one day – if it’s later then I won’t see him at all over Christmas. Once again, we play the waiting game.
I know she is trying to extend the time I have to live but at the risk of sounding bloody ungrateful I am mightily ticked off about always being left in limbo waiting for other people to make decisions which affect my life, waiting for answers to my questions, having no direct access to my oncologist, not being able to make any plans.
And it isn’t just me. Sue is in the same position. It’s as if because we have cancer we won’t be doing anything that’s of any importance. The literature we are given talks about the stress of having cancer and the worry of how the treatment will affect us and if it will work. That’s fine. That’s expected. I can’t find anything, though (surely someone has done some research into this?), which talks about the stress and anxiety stemming from being left in the dark, questions unanswered – not to mention the feeling that my oncologist is far too busy to be contacted. Yes, I know that’s what the Cancer Specialist Nurse is for (apart from protecting her boss from patients) but she won’t have the answer to my question so I’ll still be left waiting until she contacts the oncologist to find out and gets back to me.
The day after meeting the oncologist the DH drove us to Edinburgh to the Cancer Centre at the Western General for the planning scan, preceded by the mask fitting. A very nice person talked me through the process and showed me a sample of a mask, and what it looks like before being moulded to fit the patient.
The plastic mesh before being softened
It went in a water bath to be softened, then was fitted over my face, neck and shoulders and screwed onto the table on which I was lying. I’d to wait until it dried terrified I’d need to cough before having it removed. Afterwards, I asked what to do if I did have to cough. “Just cough,” she said. I’m still wondering how. Swallowing felt difficult enough. I dressed, moved next door to the room with the scanner and undressed again. They gave me a ‘modesty cloth’ – a piece of paper about the size of two squares of kitchen roll. Fortunately, despite putting on so much weight since my cancer diagnosis I’m not a big girl and don’t have much to cover up. The mask was re-fitted, now feeling much tighter as it had cooled further, and it and I were screwed down again.
My mask
As always when undergoing scans, I close my eyes and wait until it’s over. This is a newer version of the CT scanner in Dumfries and while there was the sound of an aircraft preparing to take off – and land at the end – there were other sounds I’d not heard before – bells ringing, for one – and a feeling of a bright light washing over me. I’ll ask next time.
Made to measure – never realised what a big nose I have
For some more pictures of how the mask is made, take a look here. The really good thing about having to wear the mask is that I don’t have to keep my arms raised above my head, but can rest them at my side. And I can take it away with me as a souvenir when the treatment is finished.
While waiting for the DH to return for me, I went into the Maggie’s Centre across the road. Oh, my, what a find! I’ve known about the centres and the work they do in providing cancer support and information through support specialists, psychologists and benefits advisors. I live in Dumfries & Galloway, home to Maggie Keswick Jencks who founded the centres but I’d only read about them. I had no appointment but was met by friendly, welcoming staff who introduced themselves, provided coffee, chatted to us (the DH arrived mid-coffee), gave me all sorts of tips, a contact email address and – best of all – for the first time since my diagnosis I felt I was being seen as a person, not a patient. It was a glorious feeling.
When I’m in Edinburgh for my radiotherapy treatments, I’ll certainly be visiting again. And lobbying for one to open in Dumfries!
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.
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!
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 DavidJawad’s daughter, ShahnazIt’s a hard life!Jon & DavidAn early picnic with Nauroz, Sughra, Ibrahim and baby in his carry cot.We soon got used to David being ‘kidnapped’ wherever we went.
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