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.