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#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#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 – Good news and sad news; Cancer diary #29

My tumour, and its radiotherapy treatment area. It’s shrinking.

Tuesday, 30 March: As you know I had a meeting yesterday with the oncologist to hear more about the scan result.

I was aware from the hospital’s discharge summary the tumour had shrunk but didn’t really understand all that implied, especially as the CT scan had been done earlier than it would have been. Usually, the scan would be carried out 12 weeks after the end of the radiotherapy but because I’d become ill it was done to determine the cause of my cough and breathlessness – done, therefore, before the radiation had stopped working.

Although, it’s not definitive and nothing is ever certain in cancer, the oncologist said she is pleased with what the scan shows, saying it is as positive a scan as she would hope to see.

When I had the PET scan done back in July, the tumour was 7.5cm. It continued to grow between then and when I began chemotherapy. Although I didn’t write down its measurements then, it was large enough to cause a partial collapse of the upper right lung.  Now, it is 3cm and the mediastinal lymph nodes have also reduced.

Other good news is that there’s no sign of metastatic lung disease or spread to other organs. Looking at the remaining lump in my lung she hopes it is all dead tissue but “it never goes away to nothing”. If they are all dead cells it will stay like that but there is a significant risk that there could still be some active cancer cells I’ve been told that tissue will remain which will contain the dead cells that over time could and would grow. No crystal ball to say if this will happen or when. As ever with cancer, there are no certainties.

I’ll have another scan in eight weeks when everything should have settled down. I know nothing is ever certain in cancer and I remember our short-lived jubilation when Sue’s tumours reduced from the size of doughnuts to walnuts but I’m cautiously optimistic about the result. That’s a pretty brave thing to say for the glass half empty kind of person I am!

I’m going to be on steroids for the next six weeks for the pneumonitis. Unfortunately, the cough and breathlessness are not much better but the oncologist thinks they will improve gradually as the inflammation in my lung subsides.

Absorbing all the information is quite difficult and I’m so glad we have the discussion recorded and can listen again. If I didn’t have the pneumonitis causing such debilitating breathlessness I’d be absolutely delighted with the results. I moan about how radiotherapy is the gift that keeps on giving in terms of horrendous side effucks – but it is also the gift which is smashing up the tumour in my lung.  

Other good news – my mammogram came back clear. Being recalled would probably have finished me off.  I’m booked for my second Covid vaccination on April 10.

And the oncologist says I can go ahead with my hair appointment on 23rd April – and should be able to hug my son soon after that.

For everyone (all of us) who loves to see lambs!

In the midst of yesterday’s good news, my friend Sue passed away yesterday. She was diagnosed a couple of weeks after I was. In fact, she had thrown her bag in her car to drive up to meet me the day she had her scan result. Her tumours were in her left lung, mine in my right – “a right pair of bloody bookends” was the description we both thought of at the same time. Since then, we kept each other company on this very strange odyssey, sharing much laughter, frustration, tears, anger and love. Sue reached the end of the journey before I did and it is going to be hard to carry on without her.

But, perhaps she will always be my side.

MarySmith’sPlace ~ Circle of hell: Cancer Diary #28

Saturday, 27 March: After such a gap, this will be a long post so grab a coffee or a glass of wine and some cake. At the end of my last diary entry on March 10 I still, despite antibiotics, had a hacking cough. On Monday 15 I had more bloods taken at the health centre. The practice nurse thought I felt a bit warm, took my temperature and spoke to the GP who was able to see me after the last patient. Stronger antibiotics and a codeine-based cough syrup prescribed.

Just after 6pm the GP called to say my CRP (C-reactive protein, which can be an infection marker, or indicate inflammation such as in pneumonitis, caused by radiation) was, at 128, much higher than before and wanted me to go straight to the CAU (combined assessment unit) at the hospital. Someone there knew I was coming in. Hah! That person must have gone off duty by the time I turned up, rang the buzzer and waited in the cold for ten minutes before someone came to fetch me.

Admitted at 7pm, nursing staff did the basic observations. Fortunately, I’d had experience of being in the unit before when I had the pulmonary embolism so I knew patients’ drinking water must come from a deep well guarded by multi-headed monsters and had brought some with me. I wasn’t offered any. Everyone on the unit is “very busy”. At midnight, a doctor came to examine me. She prescribed intravenous antibiotics, booked me for an x ray – and said I could have a couple of paracetamol to bring my temperature down.

A cannula was fitted for the IV antibiotic, a Covid test was carried out – then nothing happened for a while until just before 2am two people arrived to take me for the x ray – but the nurse wanted to put in the IV antibiotic first and made them wait. I was still waiting for the paracetamol – they had to check the doctor had written up that I could have it. Finally, roughly two hours after seeing the doctor I got paracetamol to bring down my temperature – and, I hoped, so something about the banging headache I had.

TOP TIPS for being admitted to a “very busy” NHS assessment unit – bring in plenty of drinking water; have a packet of paracetamol hidden in your handbag or trouser pocket; and a wee packet of oatcakes to provide sustenance. Unfortunately, I’d only managed to bring water.

The drip was put up. When it gave the two minute warning bleep that it was about to finish, I pressed the buzzer. After a while, I got up, opened the door and stood in full view of every member of staff until someone finally came to see what I wanted. I was told the drip would finish in a couple of minutes. I asked if she would hear it bleeping or should I press the buzzer? She said she’d hear it. If she did, she was ignoring it – and my buzzer. Again, I opened the door and waited until asked what I wanted. I explained the drip was finished (of which she was well aware) and I was desperate to go to the loo – was told to unplug it at the wall and take the drip stand into the loo. Fine, but that does not stop the bleeping.

For another forty minutes I listened to the bleep and the buzzers buzzing all around before a nurse finally removed the drip, though not before letting me know there were patients with more serious issues than waiting for an IV line to be removed – so that was me told. Well, maybe, it was true, but I’d been coughing constantly for days, was breathless on any exertion, had a high temperature and was exhausted, desperate to sleep. I just wanted it all to stop and told her every minute spent here was making a trip to Switzerland and DIGNITAS more and more appealing. She said it wasn’t a nice thing to say. I wondered if she knew how not nice it felt. She offered me a cup of tea. Said she could probably even find a biscuit.

Early in the morning they moved me into a different room. As I was being pushed along the corridor, sitting on my bed heaped with my belongings, a nursing assistant said she’d managed to find me a breakfast. I told her I loved her. She brought a tray which contained not only breakfast, but a jug of fresh water.

The doctor appeared on the morning round, with the doctor from last night and some students. Said the x ray showed a lung infection (didn’t tell me he’d decided it was community acquired pneumonia – that little nugget came from the DH who was told when he called to find out what was happening) and I’d continue with the IV and oral antibiotics. Said he’d seen my tumour on the X ray (really?) Then followed a squirm-making commentary on how I had to face up to some serious decisions about whether or not I would want to be admitted to an ICU, be put on a ventilator, have ribs broken if I didn’t have a signed DNR … It made me query the seriousness of the infection I have. He assured me it would respond to the treatment – he was talking about the future.

I realised I wasn’t going to get home which meant I was going to have to pull out of the Mining Memories creative writing workshop I was to deliver the next day. I felt so bad at letting people down and so disappointed that the one ‘normal’ working activity since my cancer diagnosis wasn’t going to happen. Spent some time ringing the organiser and my friend, writer Margaret Elphinstone, who I hoped could step in. She did, which was a huge weight off my shoulders. The talk on publishing and marketing has been postponed until April 14, by which time I hope to be able to talk for more than five minutes without coughing.

You, know, I’m not going to give a blow by blow account of the rest of my time in the CAU – one of Dante’s circles of hell. This post could become the length of a novella. I queried the pneumonia diagnosis a few times but, hey, I didn’t do any medical training so what do I know about how long it takes for antibiotics to start to treat an infection. They made not one tiny bit of difference – coughing did not ease, breathlessness increased, for the first time ever my oxygen saturation stats were low and my temperature continued to climb. At least by day two of my incarceration it was taking less than two hours to give me paracetamol to lower my temperature. My CRP (an infection marker or a sign of inflammation) had risen from the 128 which concerned my GP to 200.

I’d fallen out with most of the staff over various issues – like not bringing me something to spit into after using the nebulizer to try to loosen phlegm. Excuse for not providing the container – “Your cough hasn’t been productive.” The timings of the IV antibiotics (I know they weren’t actually doing any good but I harboured a vague hope that if administered as prescribed they might) so one occasion the 4pm dose was going to be at 4.30 but the cannula had ‘tissued’ and had to be removed. The nurse struggled to insert another and after a couple of goes asked a junior doctor who said they’d be along after seeing two patients. It was well over an hour later when the doctor arrived, put in the cannula – but wouldn’t give the antibiotic (nurse’s job) so I waited again. It was finally administered about 7.20pm, over 12 hours after the previous one. I used to think timings of medication mattered, were important. Silly me.

I was suddenly moved to a ward. When a nurse came to give my antibiotic I pointed out it was only three hours since my last dose. They checked and said it showed on the computer it had been raised at 4.20pm – so even though the dose hadn’t been administered then, that’s what showed on the computer.  

View from the ward window, somewhat hindered by the blinds – and the window doesn’t open.

The consultant who came in the morning (the one who first told me about my tumour back in July) said she doesn’t think its pneumonia and suspects pneumonitis – in which case antibiotics will do nothing as pneumonitis requires steroids. She orders a CT scan, which I have done at 5.30pm. Next morning the scan report proves her suspicions were correct. I started on steroids – temperature subsided immediately and when there were no further spikes I was allowed to come home. I’m still coughing and am very breathless. I hope it improves soon. If I sit very still and quiet and don’t talk, the coughing isn’t so bad. Maybe the universe is simply trying to make me stop talking!

In case you are reading this and thinking, “She’s a right old ‘Moaning Minnie’, full of complaints and criticisms,” I should say they were validated by various members of staff – nurses and doctors – both on the CAU and on the ward.  

There is some good news – maybe. Although the CT scan was to see if I did have pneumonitis, it obviously showed up the tumour and there has been some reduction in size. I have an appointment with the oncologist on Monday at which I will learn more about what’s actually happening to the cancer – as opposed to the side effucks from the radiotherapy.

I hope my next update will be a lot sooner.

MarySmith’sPlace ~ Hacking coughs, fevers and wobbly bits: Cancer Diary #27

Wednesday, 10 March: By last Wednesday evening I sounded like I was trying to cough up my lungs and had a bit of high temperature, fortunately brought down with a couple of paracetamol.

Finished radiotherapy on January 18th – have no idea whether or not it worked

On Thursday I met with a friend for a socially distanced walk. In the spirit of doing shorter walks, as recommended by the oncologist, I suggested we just went to the local park – masses of snowdrops, crocuses and very active swans. The weather forecast, she emailed, said there was a six per cent chance of rain. It arrived as we started out – we were appropriately dressed, hadn’t seen each other for months and had much to talk about so carried on. I think it stopped raining when we ended our walk.

My temperature was raised again in the evening – much higher than the previous night. The DH was making noises about going to A&E or calling whatever the out of hours number is. I took more paracetamol and said I’d see what news GP had next day on the urine test. Of course, it was clear so no UTI. Whatever is causing the temperature spikes is a mystery. The GP prescribed a course of antibiotics. Almost at the end of the course now, there’s no change to the hacking cough so it would seem to be safe to conclude it has nothing to do with whatever infection I have.

On Sunday the DH and I ventured round my on-loan field. I don’t think I stopped coughing and felt I ought to shout tot he fisherman in his boat on the river that I truly don’t have Covid.

There was snow across the water last time we were here.

When the specialist nurse called today he asked if I’d heard anything about the brought-forward scan appointment. When I said I’d heard nothing he looked it up on the system – and found I was booked in for April 12. That would be the original scan date, 12 weeks after the end of treatment. This is not a brought-forward date! He says he’ll look into it. And will I get bloods done after I finish the antibiotics?

Right now, I said I need something which will suppress the cough for an hour or so while I deliver the creative writing workshops. In fact, right now, I doubt if I could lie still on my back for the scan without coughing. He has asked the GP to prescribe a ‘simple linctus’ – which he did. To be honest, it’s not going to make any more difference to my cough than Manuka honey, boiling water and malt whisky. I do promise that I will find a way to not cough throughout the workshops.

I forgot to mention last week (probably deliberately because I’m so mortified) I was weighed when I went to meet the oncologist and, since I started chemotherapy in September 2020, I have gained over a stone and half in weigh – 21 pounds – no idea what it is in kilos, which is actually what they weigh me in. This is not steroid-induced. This is weight gained because I’ve hardly exercised like I did before when five or six miles several times a week was the norm – and I’ve fallen into the habit/trap of allowing myself treats, lots and lots of treats.

It has all gone on around my tummy, creating the classic apple shape which is so unhealthy and carries higher risks of health issues such as heart disease and/or Type 2 diabetes. Like having lung cancer isn’t enough. My jeans, trousers and skirts are all way too tight and I really don’t want to buy a bigger size – not quite ready to give in.

I’m thinking about this and how long it will take to lose the weight I’ve gained over six months and I reckon it will take at least a year of healthy eating (cutting out the killer treats) and proper, regular exercise (which is a bit of a problem as I am permanently knackered). That’s a long time. I don’t know if I have that much time – and if I do, do I really want to deny myself, chocolate, ice cream, tablet….? Even more so if I don’t.

Then, another thought pulls me up sharp. My funeral. I’m fine about there being a need for one, sooner than I once expected. It’s not the being dead and cremated which bothers me – no, specifically, it’s the funeral director. I live in a small town. I’ve known him practically all my life. He’s a lovely guy. He’s patted my shoulder and hugged me at funerals. His wee brother was in the same class as Wee-sis. Now, a first class roofer who has clambered over my roof many a time, he was a naughty boy in school. His sister was a year above me at school and I was so in awe of her sophistication and older boyfriend. Next generation down, I took her daughter on her first ever job as a local newspaper photographer. Thinking about it, she drove. Their dad ran a sweetie shop which we kids loved – then he opened a sports shop which my dad loved better.  

Bad enough my funeral director friend would see me naked at any time – so much worse when I’m a stone and a half overweight with wobbly bits. Wee-sis says he could promise to keep his eyes shut as he says he did for a friend with the same dilemma a few years ago. Do we believe him? When he retires his gorgeous daughter will take over completely – she’s so slim – hope she doesn’t judge!

I guess city folk don’t have this problem. The funeral director is probably a total stranger who has seen more wobbly bits than the rest of us have had hot dinners. And, I do know logically when the time comes for him to get me into that casket I won’t know a thing about it and won’t hear see his surprised expression – he wouldn’t comment, surely – about my wobbly bits.

I didn’t meet any lambs this week so enjoy the splashes on colour in the garden.

Pleased to capture the cat, who is not usually amenable to having her photo taken

MarySmith’sPlace ~ Cancer Diary #26 – all kinds of medical questions; so far without answers

Wednesday, March 03: My appointment with the oncologist was on Monday morning. I felt bad when the receptionist asked if I was coughing or had any other signs of Covid but I wasn’t going to miss the chance of seeing the oncologist so I shook my head.

When I mentioned it to the oncologist, she said they’d do a Covid test just to be sure. I agreed as long as someone carried it out as I know there is no way on earth I could shove an extra-long cotton bud down my throat to meet my tonsils, nor up my nose towards my brain. The specialist nurse said he’d do it. I did wonder if that might be the end of our barely-begun relationship. It was good to meet the person who has so far been a voice on the phone – can’t really say what he looks like because as we (I) were running late this morning, I left the house without my glasses so couldn’t see very much.

My list of questions wasn’t really very long: Is the breathlessness and the cough symptoms of a side effuck such as pneumonitis? If so, what’s the treatment, how long will I have it and what’s the prognosis?

As it was too early to have the scan done, I’d assumed this consultation would be a bit of a formality. Oh, no. The consultant did a thorough examination, including a fair bit of prodding at my neck. My blood pressure was very high and though she did say it was possibly because of seeing her, I should check it over the next few days. Oxygen levels were 100% so then she had me marching me up and down the corridor with her to check the levels of breathlessness and pulse rate.

It was as we were about to go back into the consultation room, she asked me about my friend, Sue – floodgates opened. She was apologetic about the timing of her question but as she said, when I’d stemmed the flow of tears, “There are no words.” Probably the best things she could say.

I explained we were going to meet with a mutual friend, Barb from Arran but currently locked down in Florence, on Zoom that afternoon, so she sent me off to get an X ray done immediately as sometimes there can be a wait and she wanted me to be on time. The specialist nurse did the Covid test (almost painless), and I had an armful of bloods taken.

The oncologist thought she might have felt a swollen lymph node in my neck – but couldn’t say for sure if it was that or if it was inflammation from the radiation. As she doesn’t like not being sure, she has decided bring forward the scan to see what’s going on.

Yesterday, the Covid test came back negative so I asked the specialist nurse what else could be causing the breathlessness and the cough if it’s not Covid and not pneumonitis. Is it, in fact, the tumour tweaking its tail? Is it growing instead of shrinking? Blocking my airways as it did before chemotherapy reduced it? He said there was a possibility of scarring of the lung tissue. That would be permanent. I’d always be breathless.

Today, specialist nurse said the bloods were all good apart from raised C-reactive protein (CRP) and would I mind arranging a urine test. That’s gone off for testing. I do think they should give you the label to attach to the sample container after it has been filled – and dried. Just a thought.

I’m a bit more worried than I was first thing on Monday morning before the consultation. It seems to have been such a medical-focussed couple of days and it seems a lot more things could be not going quite right.

As for the fatigue – “rest, don’t try to do too much” – so the contents of the larder will remain all over the kitchen worktops for now. And she thinks a two-mile walk is a bit ambitious. Better to do shorter walks and not get so tired. Oh, and on top of all that, I’ve been summoned for a mammogram!

I promised more lambs!

And other signs of spring.

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.