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!’
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.
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.
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.
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.
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!
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.
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.
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.