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 – 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.

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

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

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

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

Looking across to Rough Island

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MarySmith’sPlace ~ Cancer Diary 12

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

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

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

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

Sandy Hills, Dumfries & Galloway

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

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

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

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

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

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

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

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

MarySmith’sPlace ~ Cancer Diary #10

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

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

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

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

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

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

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

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

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

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

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

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