MarySmith’sPlace ~ CancerDiary #40

It’s been almost a month since my last blog post – and what a month of highs and lows and bits in between it has been. Get the drinks and snack ready for a long post!

Soon after the meeting with my oncologist, while waiting for the requested PET scan, I was on the beautiful island of Arran where I’d been invited on a writers’ retreat. I’ve visited Arran, with the DH, several times and on most visits we’d climbed Goatfell so I was concerned I’d be depressed knowing I can no longer do such climbs, nor many of the other walks I’ve previously enjoyed. Rather than be depressed, the combination of being in such a magical place with glorious sunshine, talking writing with three wonderful women, I felt exhilarated and by the end of the week had convinced myself I could climb Goatfell. I’d have to start early as it would take me all day with the number of rests I’d have to take but I was sure I could do it. I was also sure I was getting my writing mojo back.

It’s not often I’m up on time to see a sunrise – this from my window on Arran.

We were there to write but we did have a day out around the island and visited the standing stones on Machrie Moor. I’ve put photos of them on a past blog post. Sue Vincent and I hoped we would make it there together, possibly after she came to visit Cairn Holy last April. Sadly, that was not to be. It was a warm sunny day (first time I’ve seen the Stones in sunshine) and we saw two buzzards and a red kite so we knew for sure Sue was around.

Standing Stones on Machrie Moor, Arran

My lovely GP had posted the oncologist’s report from the meeting to me. Unlike seemingly everyone on the oncology team my GP believes the patient should have access to reports and letters. And is happy to explain things I don’t understand. The report made clear if the cancer is confined to the lymph nodes in my neck the oncologist is suggesting an aggressive radical course of therapy – ensuring “the overlap (from previous treatment) was minimal and the doses to the normal structures such as the spinal cord and the brachial plexus are within acceptable limits.”  I think that makes it clear why a) it’s important for the patient to be able to read the report and b) have things explained before the next meeting.

If the cancer has spread radiotherapy isn’t an option and neither are targeted treatments, nor immunotherapy, which can cause pneumonitis. Remember the trouble I had with that!  Chemotherapy “potentially with Docetaxel and Nintedanib,” the side-effucks of which sound even more horrendous than my previous chemo drugs.

My PET scan was booked for the Monday after my return but an appointment letter was waiting for me saying I’d to be there on Tuesday, not Monday. I phoned to check and was told the date had been changed because it was a Bank Holiday in England and the fluorodeoxyglucose (FDG) they inject into the vein wouldn’t arrive on time. The DH had to change the hotel booking we’d made for the Sunday night to the Monday. Luckily, the hotel wasn’t fully booked. We checked in, booked a table in the restaurant and had a pleasant evening. In the morning I’d just come out of the shower when they phoned to say the scan had been cancelled. We drove straight home – at least I was able to have coffee and breakfast – not in the mood to linger in Edinburgh.

The next two scans were booked and postponed. Finally, it happened on September 06. We didn’t go up the night before so it wasn’t the pleasantest of mornings on what is a pretty horrible drive anyway and worse when not being able to have a coffee. I could drink water though wasn’t able to have any cough syrup or pastilles, though.

I only found out by chance about not taking cough medicine. Every pre-scan discussion which stresses the need to fast also says it’s all right to take medication as usual. I don’t know what prompted me to say I use codeine linctus but when I did I was startled by the vehemence of the response. “Oh, no, you mustn’t. Because of the sugars it contains it can cause false positives in the scan.” Well, wasn’t it good I asked! If it had been discovered I’d been swigging cough syrup the scan would have been cancelled.

Top Tip for anyone having a PET scan – when they say you can take medication as usual during the pre-scan fasting period – do check if it really is OK to take the medicine you have.

Of the various ups and downs over the month the biggest down of all with Taliban back in power in Afghanistan. A few, a very few, of my friends have got out. Most have not. Having people I love and care about begging for help I can’t provide is heart breaking and soul destroying for us all.

And, so to the last down in this post – the PET scan result. My appointment was today, though not with my oncologist who has Covid, but with one of her colleagues and it was a video conference. Not an ideal situation.

Unfortunately, it shows the cancer has not been contained in the lymph nodes in my neck but has affected lymph nodes in several places. This means radiotherapy is not an option. I was dreading making a decision about whether or not to have radiotherapy, especially when described as aggressive, knowing how much it f****d up my lungs last time. And this time it would have been risky because of the proximity to the spinal cord and the brachial plexus. Anyway, I don’t have to decide on that as it’s not going to happen.

The only possibility is a course of chemotherapy – a much more brutal combination of drugs than last time, and which might give me a few extra months to ‘live’. I include the inverted commas because spending several months feeling ill, fatigued and unable to do much does not sound like living to me – existing maybe but not living. The difference between having treatment and not having treatment in terms of ‘overall survival’ is about two and a half months. It appears the main benefits of the chemo may be that it would relieve symptoms. I don’t yet have any and don’t know what they might be. I will ask. I will have other questions, too.

I have requested to speak to a palliative treatment consultant before making any decision. Guided by my wonderful mentor at Maggie’s Centre in Edinburgh, I actually asked about this a week ago but the message was missed because my specialist nurse has been working from home and until this week had been unable to pick up messages on his work phone. I didn’t like the implication at the last meeting I had with the oncologist that if I decided to go for palliative treatment I’d be discharged by her and referred to a palliative doctor.

When today I asked for the PET scan report, which of course hadn’t been sent to me, this is what I was given! I had my eyes tested last week and the optician said they hadn’t change since the last test but I couldn’t read this report without a magnifying glass – or scanning it and zooming in.

Anyway, that’s where I’m at – the cancer is back, is not going to go away. I have decisions to make – should I plant more spring bulbs? – but for now I’m mostly looking forward to a holiday with Wee-sis on Islay next month.

A surprise gift of sunshine from a friend continues to brighten my days

MarySmith’sPlace ~ Cancer Diary#33 – a bit of a blip

Well, it’s been a couple of weeks since I posted a cancer diary update. I was feeling a lot better thanks to the steroids and the weather was good (bright and sunny, if still cold) so I was able to go out most days for walks.

The walks became longer until I was managing two to three miles on the level and my step count, adding in time working in the garden, was reaching 10,000 a day. I even managed a couple of walks round Doach Woods which is a bit steeper. Yes, I was out of breath on anything steeper than flat but my pulse rate soon dropped down again, I was hardly coughing and really thought the pneumonitis was on its way out.   

On Monday, with Covid-19 restrictions finally beginning to lift a friend came to visit from Glasgow and we had a lovely time walking and talking. On Tuesday, my son and his partner arrived and again we walked and talked and talked and talked. I did feel I was becoming slightly more breathless but dismissed it as I really did talk an awful lot more than usual over the two days. When the DH and I go walking together we don’t talk to each other much – we can do that round the kitchen table.

By Wednesday evening I was feeling pretty flat – my visitors gone and although we hope to meet again soon who knows these days what might happen. There could be another lockdown just around the corner. I’ve been becoming more breathless and coughing more and feeling tired in a way I haven’t for weeks.

The DH thinks it’s probably just a blip after doing a bit too much walking and talking and a couple of days rest will put things right again. Or, it could be my body decided the last weekly drop in my steroid dose was too much? I really don’t want to start taking a higher dose again.

Of course, it’s a Bank Holiday weekend so no specialist nurse or GP to ask. I really have rested today – step count under 2,000! – and I’ll do the same tomorrow and Monday (the weather forecast is pretty rubbish, anyway) and see how things are on Tuesday.

In the meantime I’ll try to keep thinking it is just a “too-much-talking” blip and not start imaging worst case scenarios – is the tumour starting to grow again now the radiation has finished working? This I can’t know until the last week (possibly the last day) of this month and I don’t want to cope with almost a month of scanxiety.

Positive thinking – altogether now: ‘It’s just a blip – don’t talk so much!’

MarySmith’sPlace – Cancer Diary#32 #earring #lost&found

Sunday, 18 April: I recently told the world how devastated I was when I lost one of a pair of earrings gifted by my friend Sue Vincent. As always, the response was overwhelming with many people sharing heart-warming stories of treasures lost and found, hopes, wishes, prayers and practical tips for finding the earring.

One friend, jeweller Amanda Hunter, said she’d try to make a replacement for me if I sent her the remaining earring and another, retired farmer (they never actually do retire, though!) John Nelson said he’d bring his metal detector round.

Around 4.30pm on Friday John appeared with the metal detector. Until I lost a tiny earring I’ve always thought of my garden as being small but it suddenly looked dauntingly enormous.

I showed John where I’d been mainly working the day the earring was lost and I’d even kept two black sacks of grubbed up things instead of putting it all in the compost bin. I was convinced if the earring was going to be found it would be in one of those black sacks. It wasn’t.

It wasn’t to be found on the lawn though there were lots of bleeps but much further down than the earring would have got.

It was much later when John said he’d do one last sweep along a gravel path. I couldn’t believe it when he said: “There it is.” And there it was, just lying on top of the gravel. I’d walked over the path several times since I lost the earring and I’d sat on the tree stump (old apple tree that had honey fungus), scarcely a foot from where John found it, drinking my coffee and didn’t spot it.

The tree stump which provides a sunny seat for late morning coffee – hardly a foot from where the earring lay

In normal circumstances, I’d have hugged him – in pandemic mode I could only repeat my thanks over and over while remaining socially distanced. Something like this really brings home how strange the world in which we live has become.

So tiny – so much of a miracle it has been found. I still tear up.

Both earrings are sitting on my desk as I type this. I can still hardly believe the lost one is back again. What were the odds of finding it? I really have no idea. I think it was pretty miraculous (but don’t want John to get big-headed!).

Was Sue up to mischievous tricks as some blog followers (who knew her well) suggested? I don’t know but the red kite which has been appearing over my garden every evening around 6pm for several days failed to put in an appearance on Friday.  

I know it’s a bit soon for another cancer diary update but I’m fairly sure everyone would want to share in the fantastic news about my earring.

MarySmith’sPlace ~ CancerDiary#30 #thinking aloud

Wednesday 07, April:  A week and a day since my last update and it has been a strange week of ups and downs and mixed emotions. Missing Sue terribly yet sometimes forgetting she’s not still here. I find myself thinking, “Oh, I must tell Sue …” and then remember. I read her posts being re-blogged on franceandvincent and laugh and cry and relish the sheer joy she felt exploring her native Yorkshire moors.

And today, I’m devastated because while in the garden I lost one of the earrings she gifted me. I’ve searched and the DH has searched but so far no luck in finding it. I’ll keep on looking, though needle in a haystack comes to mind.

When the weather has been good I’ve spent time in the garden, well wrapped up (I don’t cast clouts until May is out and have still been wearing my thermal vest) mainly reading and gazing at the daffodils.

Bandit and I enjoying the sunshine – and oh my god, those thighs. It’s the steroids, honest!

A friend came one day for coffee in the garden – we last saw each other sometime in the summer of 2020 – so that was pretty special.

Also, on Easter Sunday, Wee-sis came round. The weather had changed by then so we sat freezing for an hour but it was worth it. Last time we were together, socially distanced, was back in February when we went for a walk at Rockcliffe and saw the shell tree, which was the day my cough started.

Wee-sis adds a shell to the tree on our last walk together – we’ll be back.

I’m pleased to say I am coughing less than I was a week ago though I am impatient to be rid of it all together and to stop being so breathless on any exertion – perhaps my expectations of how quickly the steroids would work were too high. I remember when Dad was put on a course of steroids and to our astonishment he managed to get out of his wheelchair (he’d lost all mobility months earlier) and take a few steps. Fortunately, the DH was there to catch him before he hit the floor. I was expecting to be skipping around like a lamb after a week on steroids.

I did manage to walk maybe about a mile to and from the osprey viewing platform at Threave and take a photo of the osprey on the nest. I was ridiculously pleased knowing the ospreys had returned and I was here to see them. I also felt quite chuffed at managing the walk. Next day I was tired but thought it was maybe to be expected. The day after, though, I was coughing a lot more again and feeling very fed up with life. Lesson learned – don’t push, don’t try to do too much.

Good to see the ospreys back on their nest

Since then, I’ve limited my walking to short strolls in the park. I’m ashamed to admit we drive there. I can’t quite believe it has come to this. It’s only a few weeks since a friend and I walked from my house to and around the park and back home – under two miles – and now I can’t even do that. Yet. I will, though, I will.

Swans at Carlingwark Loch, Castle Douglas.

From time to time the fact my tumour is reducing in size makes me feel astonishingly joyful, though I quickly resume my usual yes, but, we don’t know for sure what’s happening, don’t tempt fate, wait for the next scan … I sometimes wonder what it must be like to be an optimist.

I am, however, beginning to feel human again: not yet a fully formed human but getting there. I’m doing things. I have the talk for Aberdeen Libraries next week (fully booked with a waiting list, which is good to hear), I took part in the Society of Authors in Scotland inaugural Zoom meeting of non-fiction writers and I’m – almost – beginning to write again.

It has been so long. When we went into lockdown last year I stopped writing. Oh, I was always going to get on with it, but there was something about not actually having to do it which let me off the hook. Fortunately, before my writing muscle totally atrophied I took part in the Writedown project, in which 22 people recorded their reactions to what was happening in lockdown. When, as we were emerging from the restrictions, I was told I was not likely to live more than seven months if I did not go for treatment for lung cancer other writing projects were abandoned. Well, apart from this cancer diary and some very rough draft poems.

The voice whispering in my ear was saying: “Wait and see what the treatment achieves. No point spending time editing the My Dad’s a Goldfish memoir if I’m not going to be around to finish it.” Maybe treatment would grant me more time, enough time even to finish the book. Now, I’ve had the treatment. I know the tumour has been shrinking but won’t have a more definitive (is there such a thing in cancer?) result for another seven/eight weeks. How much time might I have? Will I want to spend it working on a book I may not finish? Would I rather spend my time exploring Scotland (Covid restrictions allowing) or making a final attempt to clear out the attic and my dad’s books?

I feel so wishy washy compared to Sue. When told she had probably ‘three to six decent months’ she worked her socks off editing and re-publishing the books she and Stuart France had previously published plus editing and publishing some new books of her own as well as writing blog posts. It turned out her time was much less than estimated but even when told it was going to be ‘days into weeks’ she didn’t sit back, put her feet up, cuddle Ani and let those days drift by but carried on working, despite the pain she was in, to create a legacy for her family and for all of us.

And so, I salute and thank you, Sue for giving me a much-needed nudge and I will pick up my red editing pen tomorrow and get cracking. First, though, I’ll be out in the garden doing a forensic fingertip search for my lost earring.

I leave you with an image of a full-throated song of joy.

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 ~ Cancer Diary #23 – cast adrift on a sea of confusion

Wednesday 10, February: I had my first Covid vaccination on Thursday. If there were any side effects they were camouflaged by the radiation side effects – didn’t even have a sore arm. I don’t know when I’ll receive the second on – maybe in about 12 weeks, depending on supplies.

On Sunday, I managed to stay awake all day for the first time since I finished my treatment and went out for a short walk. We’ve escaped Storm Darcy’s snow but my goodness it was freezing – much too cold to take my gloves off to take photos. In the evening I tried a little glass of wine as the acid reflux has improved with the change of medication. Can’t say I particularly enjoyed it though.

Having been quite chirpy by bedtime on Sunday (it was a tiny glass of wine so it wasn’t that) I was bitterly disappointed on Monday to find I felt worse than ever. The radiation side effects were no worse: in fact, the ‘sunburn’ is now a small patch and the swallowing pain is manageable without pain relief. I do have to remember I can’t eat like I did before. I have to be much daintier. Always a fast gobble of an eater, if take too big a mouthful the pain on swallowing is dreadful so it has to be little bites. I can only say I felt like shit – a feeling which didn’t go away. And, I found I couldn’t sleep at night. Until now, no matter how many naps I took during the day it didn’t stop me sleeping at night. Now, I’m scarcely napping during the day and not sleeping at night.

I think it’s probably ‘scanxiety’ setting in early and to make matters worse it turns out the scan is not going to be six weeks – but 12 weeks after the end of radiotherapy. Last week, blogger Stevie Turner said she’d had to wait three months before her post-treatment scan. I just assumed it was because we had different cancers. Turns out I was wrong.

The specialist cancer nurse called today (and next week’s call is in our diaries). He mentioned I’d see the oncologist at the beginning of March for a six-week post-treatment review and said: “The follow up CT scan will be 12 weeks after the end of your treatment – and then if it’s necessary you may see the doctor.”

To say I was gobsmacked is a gross understatement. I raised my voice, I used the F-word, I cried. He explained the radiation continues working for more than the six weeks I thought, so there was no point in doing a scan until after 12 weeks. OK, I get that, I can understand that (still curious as to how I so thoroughly misunderstood the timings) but what I can’t get my head round is a review when the oncologist can’t know what’s happening to the tumours or the lymph nodes and yet after the CT scan it seems the oncologist might not deem it necessary for us to meet. That surely can’t be right, can it?

I did quite a lot of squawking about how wretched I feel and how I’m worried about my lack of energy and if this is as good as it’s going to get then I wish I hadn’t bothered going for the treatment. I tried to explain how cut adrift it feels – treatment finished, off you go, bye bye. He starts to worry about my mental health and asks if I’d like to talk to someone like my GP. I say I spoke to my GP last week. I don’t say I’ll write my blog tonight and that will sort out the depression – nor do I say, as I wish I had now (and will next week) that by continuing to let me talk – we got onto the subject of chips and mayo at one point – my mood did lift a bit. It’s not always talking about how we feel which helps, it’s feeling connected to another human.

And it’s lifting further tonight – phone conversations with two good friends, a bit of time in the garden breathing fresh air, writing this, realising that if I have until early April before the CT scan, I can be fairly confident no one expects me to kick the bucket in the meantime (they don’t, do they?) so I can look forward to spending time in the garden in March, maybe walking more. And it’s probably not expected I’ll die immediately after the scan so maybe I have some more months, even a year, to be here – just let them not be months of feeling like shit.

Speaking of which, the lactulose helped in the short term but having stopped all pain relief, there’s now no need for the laxatives – yay.  

Twelve weeks before finding out what’s going on inside my lung still seems a long, long time to wait.

MarySmith’sPlace ~ Cancer Diary #13

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

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

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

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

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

Brambles in November – not that you could eat them as the Devil spits on them after September.

Castle Point, near Rockcliffe

The beach below Castle Point

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

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

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

Isn’t she lovely?

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

MarySmith’sPlace – Pregnant in Pakistan#02

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

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

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

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

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

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

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

In competition to see who could carry the heaviest load

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

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

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

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

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

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

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

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

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

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

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

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

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

I should have known better.

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

MarySmith’sPlace ~ 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 – 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!