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 ~ 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.