MarySmith’sPlace ~ #CancerDiary44 – up, up & away – #palliative care

After my last post recording my decision not to go for further cancer treatment I really did intend to post an update a bit sooner than this. I should have remembered the unpredictability of cancer and not made assumptions things would tick over just the same.

The couple of weeks before my last post were busy seeing friends, doctors and the dentist (another emergency – broken filling)! I had an online consultation with the palliative consultant and she changed some of my medication. I’d been on a combination of codeine and paracetamol to try to suppress the constant cough and it was making me feel nauseous most of the time which rather put me off eating.

The consultant prescribed morphine instead, both a tablet and a liquid form. The tablet creates a slow release background dose to provide pain relief, help the breathlessness and suppress the cough and I could take the liquid stuff when required. The pain is something fairly new; a difficult to describe sharp pain along my right shoulder.

Then, the weekend after friends we met in Pakistan thirty years ago came to visit. Usually, they would stay with us and we would never go to bed the same day we got up. This time they booked into a hotel which, although not how I wanted it to be, was incredibly thoughtful. I could come home in the afternoon to have a nap before meeting again in the evening – but my goodness did it not make me feel horribly old to be the person who needed to nap!

Other friends had, unbeknownst to me, had been plotting to arrange a flight for me in a two-seater Piper Pup plane – something I didn’t know was on my bucket list.

Wow! Despite the less than elegant scramble getting in and out of the aircraft, it was absolutely amazing. The sun shone, the flight was stunning and, at the risk of upsetting my friend Beetley Pete, I think it really was awesome. I am so, so glad I went and it happened when it did. I seriously doubt if I’d manage to get in the plane now.

Things went downhill after the weekend. I thought at first it was a result of doing too much and a few days of rest would put me right again. Deciding to have a bit of quiet time, I cancelled engagements, apart from my appointment with the palliative consultant – this time, a face to face consultation. We also cancelled our planned trip to Aberdeen to visit our son at the weekend. That was a good call as it was the weekend of Storm Arwen so travelling would have been a mistake.

Concerned about how breathless I’d become in case there were blood clots in my lungs the consultant organised a CT scan for the next day (the next day!) and upped my morphine.

No blood clots to be seen, which was a relief but nothing else pointed to a cause of the breathlessness. In case it was a return of the pneumonitis, I was put on steroids. Remembering how fast they took effect before I was looking forward to feeling much better after the first couple of doses over the weekend. Unfortunately, I wasn’t.

The GP called me on Monday evening after seeing the scan results and suggested an antibiotic as there was a suggestion there could be an infection. I’m over half way through the course now without any improvement.

I had my first home visit from a Macmillan nurse this week. She further increased the morphine medication, assuring me I am still on a very low dose. We discussed the difficult topics of putting in place DNR (do not resuscitate), which actually isn’t so difficult when you understand your heart stopped because we’re all done here and breaking ribs to re-start it – possibly very briefly – isn’t a great idea.

I have an appointment with the consultant at the beginning of the coming week. I have to say I am very impressed and very glad of the support network which has, seemingly seamlessly, appeared in place.

I’m tired in a way I’ve never been tired before. Chemotherapy made me tired, radiotherapy wearied me deep in my bones but this – this is something else again. In the morning I make and eat my breakfast then go back to bed with a cup of tea. It’s stone cold when I wake up. Talking makes me cough. A short chat on the phone leaves me breathless, coughing and exhausted. I’m a talker – this is hard. I’m hoping further tweaking of the meds will help to relieve some of these symptoms, at least for a while.

I would like to do some writing – there’s still the Goldfish blog to convert into a book and there are poems to be written and edited – but it will depend on my energy levels and focus. I apologise for not reading and commenting on as many of your blog posts as usual. That takes stamina. I will try to respond to as many comments on my blog as possible – it’s always been a cardinal blogging rule for me to engage – but if I don’t please don’t be offended. I’m just a wee bit knackered right now.

The last couple of weeks haven’t been easy, not least getting my head round the fact the increasing amount of medication I’m taking is not going to make me better, but there have been some wonderful highlights which I’ll enjoy remembering.

MarySmith’sPlace – #Afghanistan #Friendship # Family

In my last post I said my next one would be about the discussion with the oncologist. I’ve changed my mind. I’ll put up a cancer update soon, but in the meantime, I want to introduce you to a special person who is part of my extended Afghan family. In fact, I’m going to let her do the introduction herself but before she does, I’ll fill in a bit of our shared family history.

I met Sausan’s grandfather, Jawad in the Jaghori district of Ghazni province in 1989, the year the Soviets left Afghanistan, when he came to work as a driver for the leprosy/tuberculosis NGO (non-government organisation) for which I was joint co-ordinator. Later, he moved to an administrative role in Quetta, Pakistan, which was, at the time, our operational base.

His family joined him in Quetta. They were among the first visitors when my son was born. I remember looking at Jawad’s wife as she held him and seeing the longing in her eyes. I was pretty sure another addition to their growing family would be coming along. Jawad didn’t think so – I was right!

Shahnaz, Jawad’s daughter, holding David soon after he came home from the maternity hospital – 30 years ago!

David’s birthday – 21st March – is also the Afghan New Year. This embroidered cloth was a gift to him from Jawad’s wife on his first birthday.

Exquisite embroidery in each corner of the cloth.

It became clear we had to move operations to Afghanistan or risk being robbed every time we shipped medicines and supplies across the border. In 1993, Jawad went ahead, finding a suitable building in the northern city of Mazar-i-Sharif and I followed with David/Daud, who was then two years old.

The children playing together on a picnic in Balkh, described by Marco Polo as a ‘noble and great city’.

Jawad being used as a climbing frame! The noble and great city was renowned, in our time, for its delicious kebabs.

You can read about the following three years in Mazar-i-Sharif and my work teaching health volunteers in rural Hazara Jat, or Hazaristan, in Drunk Chickens and Burnt Macaroni: Real Stories of Afghan Women.

When I returned to Scotland, there was no Facebook – very few people even emailed – and keeping in touch wasn’t easy but we always managed. Taliban came to power and the family escaped to Pakistan. The DH, David and I went to Pakistan several times to meet up.

After Taliban was pushed out (temporarily as it turned out) Jawad and family moved back to Afghanistan, to Kabul. Mustafa and his sister Shahnaz won scholarships to India and we visited Mustafa there (regretting we didn’t have enough time to visit Shahnaz as well). We also returned to Afghanistan for an all-too-brief reunion.

Time together in a recreation park near Kabul when we visited in 2006.

Farid, Mustafa and David in Kabul, opposite the museum.

Mustafa later did his Masters in the UK. His parents looked forward to seeing him graduate and we looked forward to a grand reunion over here. However, when the hoops the British government made his parents jump through for a visa became unsurmountable we went to Bristol to be there for him.

Mustafa’s Graduation day in Bristol

Jawad’s son Murtaza was the first to be married and he moved to America where he and his wife Soraya live in Connecticut. It is their daughter who adds the next link in the family chain. She and I ‘met’ when she visited Kabul earlier this year for her aunt’s wedding and we chatted on a video call after she’d read my book and had some questions for me.

Here she is:

“I am Sausan Farhnaz Jawad. I was born in Hartford, Connecticut USA, July 2nd 2010. Originally I am from Afghanistan, Jahgori District where my father, Murtaza Ahmadi, was born.

My grandfather, Jawad Ahmadi, was running an international NGO (LEPCO) to treat leprosy and tuberculosis in the very remote area in central highlands of Afghanistan.

I live in Simsbury, CT. I have gone to Afghanistan two times, already. Kabul the capital of Afghanistan is surrounded by high mountains. My last visit to Kabul was in May 2021 to attend the wedding of my aunt which was held in a very nice wedding hall.

Unfortunately, I could not attend the wedding of my uncle which was held on August 8th. It was celebrated in Kabul’s famous garden, Bagh-i Babur (a very old and famous garden, where the Mogul Emperor Babur, one of the Genghis Khan’s descendants, is buried.) The reason I could not attend my uncle’s wedding was because Afghanistan was having trouble with the Taliban and the flights were cancelled. If I went to his wedding I would be stuck In Afghanistan. Luckily, my grandparents and the newlyweds left the country. But sadly, some of my grandparents’ relatives are still stuck in Afghanistan.

My family nation is Hazara. This is a tribe mixed with Mongol and Turkish which is living in the centre of Afghanistan.”

You may be wondering, why this post now? Since Taliban once again took control of Afghanistan earlier this year I’ve turned down several invitations to speak in public about the situation and I’ve not written about it on my blog. I couldn’t. I was too angry and heartbroken to find a way to talk about it. Taliban’s takeover and the plight of those desperate to leave the country were on the front pages of our newspapers until the day the last soldier left Afghanistan. After that Afghanistan stories were found half way through the paper – scarcely newsworthy.

Jawad’s family and mine have been friends over many years and across many miles. I really hope people reading this will see individual people not a faceless mass of ‘refugees’ or ‘asylum seekers’ – real people.

Our friendship will last as long as I do and be remembered for even longer and I look forward to more conversations with the youngest (for now) in the family – the delightful Sausan.

And I hope with all my heart that one day Jawad’s family will reunite in Afghanistan, an Afghanistan free from Taliban.

MarySmith’sPlace ~ # Islay #CancerUpdate#42

Thanks to Wee-sis, she and I finally made it to Islay together for the first time since we left the island in 1961. My last visit to the island where we were born was over twenty years ago although Wee-sis has been going more recently.

I spent the weeks before we went terrified I wouldn’t be able to go because cancer cells would suddenly multiply or my throat would stop working or something. In fact the worst that happened was a filling coming out (M&S salted caramel Florentines – delicious but not recommended if you have dodgy fillings). I was able to get an appointment to have a temporary filling put in.

The after our return I had an appointment to meet with the oncologist and tried, mostly successfully, to put it out of my mind and not dwell too much on the decision I knew I had to make sooner rather than later. I’ll do an update on that meeting in my next post.

It was a magical week packed full of memories. It was a week of connections old and new, of friendship, laughter, good food (pizzas by the sea, Indian curries, home cooking and posh restaurant) and drink. We were taken on a mystery tour and picnic (the most amazing potato curry and puris) one day; on another we visited the Singing Sands. We didn’t get to visit all the beaches I remember from my childhood but we managed a few and we watched seals watching us and saw thousands of Barnacle geese.

If you can zoom in on this pic the grey dots are not stones but geese!

The dentist on the island has bought the house Wee-sis and I were born in. He and his wife invited us to see it. Wee-sis doesn’t remember it (she was only three when we left) but I could still recognise the layout of the house – the front hall (which seemed so much smaller than in my memory), the curved staircase, my bedroom, Dad’s office …

In the round church in Bowmore, where we were christened, we found our names on the Cradle Rolls on display.

Cradle Rolls in Kilarrow Parish Church, Bowmore, Islay

Interior of the church known as ‘The Round Church’.

The main central pillar of the church is of timber.

The Order of the British Empire awarded to the Rev Donald Caskie, born in Bowmore. He was minister of the Scots Kirk in Paris when the Germans invaded in 1940 and stayed to help British Civilians escape. He later helped British and Allied service personnel escape (for which he received the OBE) until he was captured by the Gestapo. A German padre saved him from being executed. His autobiography (1951) is called The Tartan Pimpernel. He died in 1983 and is buried in the church cemetery.

And I found the name of my best childhood friend, born two days before me.

Friends reunited after 60 years

She and I were the first babies the new doctor on the island delivered. She and her family left Islay some years after we did but she has relatives still living on the island and visits regularly. We managed to meet for the first time in sixty years. We would need days, probably months, to catch up properly on our respective histories.

Pizza by the sea night – cooked in a pizza oven in a garden overlooking Loch Indaal

Cows because why not?

The Singing Sands

They have a lot in common – sheep and geese.

Carraig Fhada Lighthouse, near The Singing Sands

It was a wonderful trip but exhausting. Towards the end I was definitely flagging and had to turn down an invitation to a girls’ night party, which I’d been looking forward. However, my energy levels had dipped too low. I also dropped out of a walk with Wee-sis and her dog because I was concerned I might not manage the return part. I cried as I made my way back to the car, hoping anyone seeing me would think it was the wind bringing tears to my eyes.

It was an emotional week with a feeling of a circle being completed and a final farewell made.

Kildalton Cross, one of the finest. most complete Early Christian crosses in Scotland.

MarySmith’sPlace – #SilentSunday

MarySmith’sPlace ~ biopsies, blood clots & garden pics in CancerDiary#37

Saturday, 31 July: I’ve not yet quite got into the swing of regular blogging after my break and was shocked to find over a week had gone since I last posted.

On Wednesday, 20 July I had the ultrasound on the lump on my neck, which turned out to be three small lymph nodes, suspicious enough in appearance for the doctor to decide to do a biopsy. He said in the lab they will be looking to see if the cells are cancerous or not. If there are cancerous cells he thinks the oncologist will want to look at treatment options.

I’m not sure when I’ll hear the result and I so hate the waiting. Since the tumour in my lung was discovered last July, there have been endless periods of waiting – during which my imagination runs riot, scaring myself stupid with ‘what ifs’. Funny they never include a ‘what if, there’s a totally innocuous reason for the dodgy lymph nodes and all’s well! No, it’s what if the cancer is back, what of it has spread to …. (name every organ in the body) or …?

In the meantime, since Saturday, 16 July I’ve had a painful right calf. I initially assumed I’d pulled a muscle but not only did the pain become more painful, the leg began to feel hot. When, on Wednesday night, I asked the DH if one leg looked bigger than the other he insisted on taking me to A&E. Two hours later, the doctor said someone would call me next morning to come in for an ultrasound on my leg for a suspected deep vein thrombosis (DVT).

The ultrasound was done on Friday (all the slots for the next day had already been taken by the time the A&E doctor put through the request – it was about 2am by then) and the DVT was confirmed. By this time my right ankle had vanished into the general puffiness, my shin was hot with skin so red and shiny it looked like it might just burst open and it was painful.

As the ultrasound request came from A&E it was to there the report was to be sent and I guided back to A&E. Things became slightly bizarre then. First, I was surprised to be called into the triage nurse’s room where she asked me what had brought me to A&E this morning. I explained I’d just had an ultrasound which confirmed a DVT and the report – I pointed to the computer – should according to the radiologist, be there and I was to see a doctor. The nurse maintained she’d never heard of such a system and sent me out to wait.

Bandit the cat inspecting the dead patch of lawn!

Deciding dead lawns are too exhausting to think about!

It wasn’t long before I was called by a doctor, who must have received the report, and who showed me to a bay. He excused himself, saying he’d back in two minutes. A nurse came in and asked if I’d mind moving to a different bay. As she started to push the bed out the door ‘my’ doctor returned to ask where she was going with his patient. “Two bays down,” she replied, “as it will be easier to carry out her eye procedure there.”

This year the DH managed to prevent the delphiniums snapping off in the wind.

Luckily, the confusion was soon sorted out (and it soon would have been anyway the moment someone tried to get anywhere near my eyes!) and after an examination I was prescribed Dalteparin injections. The doctor said a nurse would come to administer the first one and teach me how to do it. Sometime later, saying the nurse was ‘too busy’, he returned to give me the injection (can’t say it constituted a teaching session). The prescription pad was finished and he said he didn’t know how long I’d have to wait until a new one appeared but I could leave if I wanted, with three injections, and call my GP practice to ask for more. I said I’d leave.

My GP was able to write up a prescription for more injections so I’m now stocked up for a few weeks – though I still need to be shown properly how to administer the jags myself. The DH, fortunately, is very competent but if I want to go away by myself I need to learn.

On Monday, 26 July I was taken aback when my oncologist phoned me. It’s only the second time she’s ever called. The biopsy report hasn’t come through, of course, but she’d been informed about the lump and the biopsy and the DVT. She is arranging for me to have a CT scan as soon as possible so she can see exactly what’s going on. And so, I wait.

I hope by this time next week I’ll have news of results.

My friend Farah’s fig tree.

MarySmith’sPlace~CancerDiary#34

My next scan is coming up soon!

Thursday, May 13: Well, the ‘blip’ proved to be a bit more ‘blippier’ than anticipated. I did all the things everyone advised me to do and rested completely over the Bank Holiday weekend. The weather was pretty awful so it wasn’t too hard to stay inside with a well-stocked kindle. Unfortunately, it didn’t make any difference to the cough.

On May 05, I spoke to the Specialist Nurse (SN) who sounded disappointed about the downturn. We talked about the possible reasons for the breathlessness and the cough. It came back to what I suspected: either scar tissue in my throat from the radiotherapy targeting the lymph nodes above my collarbone or too big a reduction in the steroids. Specialist Nurse said it wouldn’t be problem to increase the dose.

Might not be a problem for SN who isn’t the one with swollen ankles, fluid-filled lumps which can be squished from front to back of my shoulders (when Sue told me her swollen bits moved around her body I wasn’t sure what she meant – now I know), a neck so swollen it would look good on a Galloway bull and puffy eyelids. On Friday when SN called to check on me I said things were much the same so there would be a discussion on Monday between SN and oncologist and SN would call me either on Monday afternoon or Tuesday morning.

See the neck on this very lovely Belted Galloway!

I did briefly think about making the radical suggestion the oncologist could phone me directly.

I reduced my steroids from 15mg a day to 10mg on Friday and felt OK when speaking to the SN. Friends came round later, bringing lunch for us to eat in the sunshine (real proper warm sunshine which had us taking off jackets) in the garden and I still felt fine and so happy to see them.

Saturday, however, was a rubbish day. It’s hard to describe how different everything felt. I spent most of it asleep, occasionally waking up to read for 20 minutes before dozing off again. The DH cooked our evening meal. The DH has done quite a lot of cooking over the last 10 months. It hasn’t improved and after coming home from my last spell in hospital I’ve cooked. I like cooking but on Saturday I couldn’t have boiled an egg.

On Sunday I had a lazy morning, going back to bed after breakfast, dozing rather than falling soundly asleep and in the afternoon the DH and I went to a garden centre. I felt a bit more like myself. I cooked. The next day was a better day and I spent a bit of time in the garden.

Then on Tuesday, SN called to say the oncologist had agreed that I should increase the steroids and review the situation in another week.

We had a brief negotiation session during which I admitted I’d had a really rubbish day on Saturday, the day after my steroid dose reduction, but had rallied on Sunday. I suggested, as I was now over half way through the 10mg week, instead of increasing the dose, I stayed on the same dose for the remainder of the week and for following week. This was deemed acceptable. I suspect I might have gone ahead with this strategy regardless because I really, really don’t want to increase my steroid dose and be on them the drug for any longer than absolutely necessary – wonder drug that it is.

I was starting to feel well enough to spend some time in the garden (pottering rather than full on gardening) and start walking again. Short walks.

Mrs Duck really did not want to be in the same picture as Mr Duck!

The other thing which happened on Tuesday was a telephone consultation with the pulmonary rehab team leader about my breathlessness and coughing issues. This is partly why I didn’t suggest the oncologist phoned me herself because the SN was instrumental in this consultation taking place – though only because I asked.

Top Tip – ask! If there’s anything you need to know or something you feel might be available to help, then ask. I asked so many times over several months about exercises to help my breathing. To start with, I got nowhere. This was partly my fault for not making clear what I was asking for. People heard ‘exercises’ and thought I meant running or cycling or other kinds of physical exercise when I meant breathing exercises and partly the fault of everyone involved in my lung cancer care who didn’t think about the benefit of breathing exercises. I didn’t even know a pulmonary rehabilitation person existed.

Finally, my new SN appeared on the scene, understood what I was asking and talked to the lung physio about it. I was sent an initial handout with some exercises and one, simple, brilliant method to control short of breath breathing. That alone endeared me to both of them! By the end of the phone consultation with the pulmonary rehab person on Tuesday I was convinced I could learn how to control this cough (it might even have become a habitual cough and there are strategies to deal with it) and what is described as ‘dysfunctional breathing’.

Today, I received in the post from my lung physio more handouts with exercises and strategies, a relaxation CD and a follow-up appointment and I’m wondering what happens to lung cancer patients who don’t ask for this kind of help because they don’t know it exists. Why the lack of communication? The lack of joined up thinking?

Also, today I received the appointment letter for my CT scan. This is the one which will tell how effective the cancer treatment has been. It’s at 10.30 on May 27 and I’m practically counting the hours, which is daft because the day of the scan tells me nothing (it does let me don scrubs and feel as though I have a walk on part in Holby City, which is the most fun part of it all) and I won’t know the result until Monday, May 31 when I meet the oncologist.

I’m in a strange space at the moment. There’s no point in crossing fingers and toes because the work of the treatment, both chemotherapy and radiotherapy, is done, so whatever it has achieved (or not) has happened. It’s still hard, though, not to cross fingers and hope.    

Until then, I’m not going to post an update. You’re probably as fed up as I am about the wait for concrete news – though do let me know if you want more information on how to correct a habitual cough (it includes sharp sniffs and effortful swallowing) and dysfunctional breathing.

Our walk this evening – all calm and quiet at the castle

Looking in the other direction and wondering if we’d make it back before those clouds dumped the rain on us. We didn’t! But, hey ho! it has been good to be out and about again.

MarySmith’sPlace – #SilentSunday #ThreaveCastle #Photography

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#31 #randomthoughts #randomphotos

Friday 16 April: This is going to be a brief update (do I hear sighs of relief all round????) and I’m aware I’m a couple of days late if this is a weekly update.

My breathlessness and coughing continued to lessen and I felt better, both physically and emotionally (as long as I didn’t/don’t think about the next scan and its result). On Wednesday, the Lung Specialist Nurse, and as I don’t name names on this blog I really ought to pin down what his title is, called to see how I was doing.

I was doing fine. I hardly coughed during our conversation. When I asked about my last blood tests he said the CRP (C – reactive protein), that marker of infection or inflammation was within the normal range. Wow! After only a week the steroids had got on top of the pneumonitis. Chuffed!

He said I sounded well and positive and elated and before I started to backtrack and say things like ‘well, today things seem fine but…’ or ‘we don’t know if this is really an upturn’ or … I remembered a comment from Kim Ayres on my last update: “Not allowing our optimism now, will in no way prepare us, or cushion the blow if negative news comes along. It’s too big. So if it happens, we wasted those chances to feel good.” I decided I wanted to agree with the Specialist Nurse – I was feeling decidedly better than when we last met and he could tell the oncologist so and that I was not sounding as grumpy and bad-tempered as usual.

Bought this at Tesco last year – have no idea what it is. It looks like it’s going to be huge,

Wednesday was also when I was doing my talk in the evening for Aberdeen City Library on routes to publication and selling your book once it’s out there. I think the title of the talk was a bit snappier than that. I did my prep. I think the talk went well. The organiser has been in touch and said the feedback has been excellent, which is very pleasing. It makes me feel I can get back to this kind of work – helping and encouraging other writers. Despite a cancer diagnosis it is possible to carry on with ‘normal’ creative practices.

What did annoy me, however, was the number of ‘no shows’. The talk was fully booked with a waiting list. On the day of the talk, a few people contacted the organiser to cancel and she was able to give places to people on the waiting list. Three people were still on the waiting list a few minutes before we went live but did not get the chance to join despite several people not showing up for the talk. Perhaps some, to give them the benefit of the doubt, had technical problems but not all. I have to say I feel signing up for events online and not turning up without sending timely apologies is disrespectful to the organisers of the event who put in huge amounts of time and energy, to the guest speaker and to other potential audience members who could not attend because the event was fully booked and over-subscribed.

Please, please, don’t regard online events as something to sign up to even though you know you might not (probably won’t) attend. Signing up should be a commitment in the same way as buying a ticket for a literature festival event or a concert.

From the organiser of several library events: “The British Library has found it beneficial to charge for their events. Consider people obviously attach more value to something they have paid for – even if just a very small amount.  It is something we are considering.”

Part of the ‘osprey walk’ at Threave Castle

I did enjoy doing the talk though at the end of the official part of it I felt we should be sitting together having a really good blether, preferably with a glass of wine in hand (looking at you John Nelson) about writing, publishing, the ridiculous behaviour of publishers instead of saying a stilted goodbye.

What has any of this to do with lung cancer and not knowing what the next scan will show? Absolutely nothing and absolutely everything.

Random photos will have appeared throughout this blog. I haven’t been to see any new lambs but have managed a couple of visits to the garden (mainly thinking about how small my garden is until I’ve lost a precious earring and then it seems to be enormous), the osprey walk.

Oh, and I’ve had my second Covid vaccination and should be fully protected by the time I do the next update. And if all of this (brief? Yeah right,) update seems a bit disjointed and a bit rambling it’s because I’ve drunk a lot of red wine (apologies to non-drinkers) – and I’m still alive.

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.