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.

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

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

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

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

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

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

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

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

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

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

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

MarySmith’sPlace ~ Cancer Diary #16

Monday, December 21: The day after my last post, I received a call from someone – I think a nurse – saying the oncologist had asked her to let me know she had decided to go ahead with the original radiotherapy. I started to protest about having had eight days of wondering and worrying but realised there was no point in shooting the messenger. She also asked if I’ll like a room booked at the hotel – yes please. And would I like a taxi to take me to and back from the hospital – no thanks. It’s a fifteen minute walk.

On Friday, the oncologist called to say she had changed the schedule! I was less reticent about the chopping and changing. She explained it was because she was concerned about the fact I was having double doses of radiation on three of the days and felt there was a safety issue and it could increase the side effects. Understanding the reasoning behind the changes made such a difference to how I felt.

I won’t be having double doses and will have two Saturday sessions and a final one which will mean coming up and returning home on the same day. She said she’d booked the hotel room and made the arrangements for the extra Friday nights. When the DH checked, the hotel hadn’t had any NHS bookings but the very helpful receptionist said she’d contact the booking person. She called back to say it was sorted. I dread to think how I’d have reacted if we arrived to find no room at the inn.

While I had the oncologist on the phone, I used the opportunity to express some of my concerns, not least that there seemed to be no channel of communication between patient and the consultant. I totally understand we can’t have a direct phone number – consultants would never get their work done with patients calling all day with queries. But, I did want to know there was a way of getting any questions to her. She said I could always pass a message via the specialist nurse.

I said I wouldn’t trust her to pass on a message. There was a pause at the other end so I asked her if she ever received the research papers I’d sent. Another silence then, “No, I didn’t.” This, despite the fact the nurse had told me she’d pass them to the oncologist.

“That’s when trust broke down,” I explained, “and it’s not possible to repair things.” I didn’t tell her about the little power games she plays, like withholding my blood results until I ask, and finally, insist on knowing them. I think perhaps I did mention her voice, which oozes sympathy, but no empathy.

“Well,” she said when I finally shut up, “if it’s any consolation to you, she’s leaving after next week. I think her replacement is excellent.”  

Though she probably won’t ever call me again – our conversation took as long as our last face to face consultation – I felt quite buoyed up by the time the call ended. Explanations to make sense of things, communications are wonderful things.

As the day of my first radiotherapy approached, I found it difficult to sleep. Even when I told myself it would be fine, thousands of people have radiotherapy without major problems, friends have shared their stories to reassure me – but my subconscious clearly was not listening. The main worry is that my throat will be so sore I will first need morphine and when that doesn’t work a feeding tube. My oncologist has told me about these side effects so often they are seared into my brain. I told her if I needed a feeding tube it would have to be a peg tube in my stomach as there was no way anyone could get a tube up my nose. Then, I started worrying about how I could have a tube (down my throat) while wearing that mask.  

The DH drove me to Edinburgh. I checked into the hotel. We went to the Cancer Centre. Someone took off for a chat about everything – when I expressed my fears about feeding tubes she said it was not likely I’d need it – I would have a sore throat but they could do something about it before it reached the stage of needing a feeding tube. As for the mask – apparently they cut a hole in it for the tube – so I know it is sometimes necessary, but am trying not to dwell on it. She said I’d be fine for the first week and would be able to eat Christmas dinner without a problem.

Finally, I was called into the room where it all happens. I can’t tell you much because the moment the mask goes over my face my eyes are shut, so although she had explained the bits of machinery moving around she said I’d see, I didn’t. A few minutes of wrestling with the mask, which as tighter even than the last time (is my face getting fatter?), and the radiographers leave the room and there’s just me and the machines.

The actual treatment took only two or three minutes.

It’s the winter solstice and the days will start to lengthen, even if we aren’t aware of the change immediately, so I hope it’s an auspicious day to start the radiotherapy – one down, 19 to go.  

MarySmith’sPlace ~ Cancer Diary #15

Monday, December 14: When I met with the oncologist last Monday, I’d already received from the Edinburgh Cancer Centre my appoint for the planning scan (08 December) and the verification scan (16 December) and a complete schedule for radiotherapy treatments, starting on 21 December. 

The oncologist said she was thinking about making some changes to the schedule, perhaps delaying the start date. A week later I still haven’t heard what’s happening. As the accommodation previously provided for patients who have to travel a long distance has been closed – and I really do not want stay on a ward – the DH had booked a hotel room for me from the 21 December. He mentioned this to the oncologist as we need to know when to cancel it.

“Why aren’t you booking it through me?” she asked. “We take some rooms at that hotel and it wouldn’t cost you anything.” Behind out masks we gaped at her – this was the first we’d heard of accommodation being provided for me. We said we were very grateful. She said she couldn’t guarantee there would be a room available. Now, I don’t know when I start radiotherapy (I’ve been holding off writing this in case there was a letter in the post or a phone call today) or if I will have accommodation (other than in a ward). If I do start as originally scheduled I get to see my son as he will come through from Glasgow one day – if it’s later then I won’t see him at all over Christmas. Once again, we play the waiting game.

I know she is trying to extend the time I have to live but at the risk of sounding bloody ungrateful I am mightily ticked off about always being left in limbo waiting for other people to make decisions which affect my life, waiting for answers to my questions, having no direct access to my oncologist, not being able to make any plans.

And it isn’t just me. Sue is in the same position. It’s as if because we have cancer we won’t be doing anything that’s of any importance. The literature we are given talks about the stress of having cancer and the worry of how the treatment will affect us and if it will work. That’s fine. That’s expected. I can’t find anything, though (surely someone has done some research into this?), which talks about the stress and anxiety stemming from being left in the dark, questions unanswered – not to mention the feeling that my oncologist is far too busy to be contacted. Yes, I know that’s what the Cancer Specialist Nurse is for (apart from protecting her boss from patients) but she won’t have the answer to my question so I’ll still be left waiting until she contacts the oncologist to find out and gets back to me.

The day after meeting the oncologist the DH drove us to Edinburgh to the Cancer Centre at the Western General for the planning scan, preceded by the mask fitting. A very nice person talked me through the process and showed me a sample of a mask, and what it looks like before being moulded to fit the patient.

The plastic mesh before being softened

It went in a water bath to be softened, then was fitted over my face, neck and shoulders and screwed onto the table on which I was lying. I’d to wait until it dried terrified I’d need to cough before having it removed. Afterwards, I asked what to do if I did have to cough. “Just cough,” she said. I’m still wondering how. Swallowing felt difficult enough. I dressed, moved next door to the room with the scanner and undressed again. They gave me a ‘modesty cloth’ – a piece of paper about the size of two squares of kitchen roll. Fortunately, despite putting on so much weight since my cancer diagnosis I’m not a big girl and don’t have much to cover up. The mask was re-fitted, now feeling much tighter as it had cooled further, and it and I were screwed down again.

My mask

As always when undergoing scans, I close my eyes and wait until it’s over. This is a newer version of the CT scanner in Dumfries and while there was the sound of an aircraft preparing to take off – and land at the end – there were other sounds I’d not heard before – bells ringing, for one – and a feeling of a bright light washing over me. I’ll ask next time.

Made to measure – never realised what a big nose I have

For some more pictures of how the mask is made, take a look here. The really good thing about having to wear the mask is that I don’t have to keep my arms raised above my head, but can rest them at my side. And I can take it away with me as a souvenir when the treatment is finished.

While waiting for the DH to return for me, I went into the Maggie’s Centre across the road. Oh, my, what a find! I’ve known about the centres and the work they do in providing cancer support and information through support specialists, psychologists and benefits advisors. I live in Dumfries & Galloway, home to Maggie Keswick Jencks who founded the centres but I’d only read about them. I had no appointment but was met by friendly, welcoming staff who introduced themselves, provided coffee, chatted to us (the DH arrived mid-coffee), gave me all sorts of tips, a contact email address and – best of all – for the first time since my diagnosis I felt I was being seen as a person, not a patient. It was a glorious feeling.

When I’m in Edinburgh for my radiotherapy treatments, I’ll certainly be visiting again. And lobbying for one to open in Dumfries!

MarySmith’sPlace ~ Cancer Diary #14 Scan results and what’s next?

Monday, December 07: From last Monday to this, the side effects continued to linger – nothing specific just a general mixture of ‘meh-ness’ and fatigue.  Unfortunately, the breathlessness became worse. We did one of my favourite circular walks between Rockcliffe and Kippford – an area known as The Scottish Riviera. Last April, I blogged about it, calling it a short walk of 3.5 miles. You can read the post and see the pics here.

Last week, on a lovely bright day, I could have cried with frustration at how difficult I found this same walk. I’d have said it was mostly level and yet it suddenly seemed to have grown hills I didn’t even remember. I had to stop to catch my breath and did wonder if I’d have to stay in Kippford while the DH walked back to Rockcliffe for the car. However, I made it.

A couple of days later, we visited Neilson’s Monument on top of Barstobrick Hill near Ringford.

The monument was erected by his son in 1883, in memory of James Beaumont Neilson who invented the hot-blast furnace in 1828, which revolutionised the practice of smelting iron. I’ve always enjoyed the walk there as, though the hill is not high, the views are wonderful on a clear day.

I had to stop a couple of times to get my breath back – I mean I do always puff when climbing any hill but I never used to have to stop on the way to the monument. Although I skipped back down the hill with no problems I came home feeling pretty miserable.

Walking is a huge part of my life – with a walking group (in pre-Covid days), with my sister and her dog, with the DH, on my own – and to feel this is being taken away from me is devastating.

By the weekend, the prospect of today’s meeting with the oncologist to hear the scan result and decide on next steps looming large I was in no mood to attempt a walk. I hardly slept last night and when I did it was to dream of conversations with the oncologist.

I told her I was extremely anxious about the scan result so she agreed to discuss that first – last time we had a medical examination and lots of questions about how I’d been, when all the time I just wanted to know the result. This time, we got to that bit first – and – cheers all round – the tumour has indeed shrunk. Unfortunately they said it was difficult to measure so I don’t know by how much it has shrunk – but the juggernaut has stopped and gone into reverse.

The summary of the report says: “Interval reduction in the volume of the right upper lobe tumour with re-expansion of apical segment of the right upper lobe. Lymphadenopathy is stable. No new lung lesions. Abdominal scan is unremarkable.”

Don’t put away your kick ass boots yet, though, as there’s four weeks of radiotherapy to be gone through try to continue the shrinking process.

The oncologist repeated what she said at the beginning of this horrible journey, she is not expecting the treatment to be curative and, though she said it bring a cure for 1 in 8 patients, it seems clear I’m in the 7 in 8 category who can hope for some extended time. She says at least a year or two.

I’m not sure how I feel – very happy the chemo has done something to shrink the tumour a bit. I’d have been utterly squashed if shoving toxic chemicals into my body with the resulting horrible side effects had done nothing. Very nervous about what’s coming next. Very worried the radiotherapy side effects will make me feel worse than I do now. I guess they have to spell out the worst-case scenarios but really – throat so sore when I swallow I’ll need morphine strength painkillers or even a feeding tube; permanent scarring on my lung causing breathlessness.

As you can imagine, it’s a lot to take in and process. We recorded the discussion and have already listened to parts of it again. Tomorrow – Tuesday – I go to Edinburgh for the planning scan, which does not sound fun – lying completely still with my arms above my head for twenty minutes – and wearing a mask. Not the kind of mask we’re all wearing these days but something over my entire face and neck. I wonder if I’ll have the courage to ask someone to take a photo for the blog.

Please, keep those kick ass boots at the ready. Mine are!

MarySmith’sPlace ~ Cancer Diary #13

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

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

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

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

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

Brambles in November – not that you could eat them as the Devil spits on them after September.
Castle Point, near Rockcliffe
The beach below Castle Point

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

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

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

Isn’t she lovely?

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

MarySmith’sPlace ~ 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”