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.

150 thoughts on “MarySmith’sPlace ~ Circle of hell: Cancer Diary #28

    • Oh my goodness! That litany makes for from reading. And a grimmer experience. I feel embarrassed by the want of personal warmth and care; I like to think of my nursing colleagues as person-centred and responsive. Happy that, eventually, you were given appropriate treatment. Stay as well as you can. Thinking of you here.

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      • It was grim. I spoke to several nursing staff who feel as you do and are ashamed of how some of their colleagues act. I am happy to say once I was moved to a ward things were very different – even though they were also very busy, so much so I had to wait for a bed. Glad to be home 🙂

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  1. You are certainly not a Moaning Minnie. In fact, you are handling this very well. I am sure I would not under the circumstances. Good news about the tumour. Let’s concentrate on that. I wish I was there to give you a big hug but I am sending one through cyberspace. xo

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  2. This all sounds pretty hellish, Mary. I can see you having a small backpack ready prepared with water, paracetamol and oatcakes for the future… it seems the staff clearly expect patients to turn up more prepared to survive their tender care… Hope it’s only good news for you on Monday. X

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    • It wasn’t great, I have to admit. A backpack with supplies is a must. I don’t think the staff even realised no one had provided me with any water or thought about asking if I’d eaten. Fingers firmly if nervously crossed for Monday. x-

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  3. Reading this made me feel more and more angry, and brought up memories of my various times in English hospitals (for various reasons too complicated to into here) which were all exactly like that. Endless waiting, no empathy, no info. Greece might be more backwards, but most medical personnel is very humane, spending hours explaining and reassuring. Of course public hospitals are worse than private ones, because they lack funds. But the humanity is there (been to both). I really really feel for you, things are bad enough without being ignored and sidelined for hours. I hope you get some good news from the oncologist, things will seem better then. Hugs.

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    • I’m sorry you’ve had similar experiences in UK hospitals. On the wards (at least on the ward I was eventually sent to) things are better but on the assessment unit it really is hell. I understand they are short staffed and they are very busy but that really isn’t any excuse for the endless waiting, lack of info and total lack of empathy. Nervous about Monday but hoping to get some answers.

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  4. “patients’ drinking water must come from a deep well guarded by multi-headed monsters”—I know this is life and death stuff and Very Serious. But you’re pretty damn funny.

    So glad you’re feeling better. Fingers-crossed for Monday!

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  5. By gosh, great to hear from you. Figured you had bundled off to Bermuda and simply wished not to be disturbed. Sounds more like a medical community CYA session and that you’ll emerge with flying colors once they have proven whatever point it is they are aiming for. Sending oatcakes and water, ta for now! xoxoxo

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  6. omg I didn’t know whether to cry or scream, just reading this tore me to bits…I know ‘the’ve’ been under pressure but blimey…I just don’t want to be sick, really feel for you and pleased that there’s a bit of a silver lining. Sending the biggest, gentlest hug possible. Fingers crossed for good news from consultant. x

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    • Thanks for the hug – truly appreciated. Yes, the assessment unit is ‘very busy’ as they kept telling me. I did at one point ask if it was written down somewhere that hospitals were not supposed to be busy places to work but no one had an answer. They are short staffed. The night I went in there were two doctors on duty and between 40 and 50 (can’t remember exact number) patients. Does not excuse not automatically providing drinking water to each new patient. The nursing assistants I came across were wonderful – it was with the higher-up nurses things fell apart.

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  7. Hi Mary so good to hear from you. I know exactly what you are saying about these units and wards. Some of the staff really chose the wrong profession. I know they are very busy but some of them have had a compassion bypass.
    You are doing the best thing writing it all out. That is exactly what I did.
    I attended the Mining Memories and it was brilliant, I would of preferred you to of been there but Margaret was brilliant and got us all working and thinking. I do hope you can do the next workshop on the 14th as I am attending that one too.
    Keep resting and fighting you are doing amazingly . Sending good vibes for your Monday appointment with the consultant. Keep those boots shining. Love and hugs 💜💜💜💜

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    • You are so right about the compassion bypass, Willow. That is a huge part of the problem. I am curious as to why some of them chose nursing as a career.
      Glad you enjoyed the workshop with Margaret. She and I teach together on creative writing courses (well, before Covid) so she knew my Mining Memories workshop very well from hearing me do it so often. I’m hoping to be fine for the publishing talk. It’s a talk rather than a workshop – but lots of time for questions. It will be lovely to see you.
      I’ll have my boots polished for Monday.

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      • I was so annoyed reading what you went through it brought it all back to me!
        I am looking forward to your talk too. Margaret was great. You have your boots polished and I will cross my fingers and toes for yo.💜

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  8. Hugs, hugs, hugs. So sorry you got the hell ward. Glad about the tumour, and that you’re home. I’m sure your postponed talk will be even better than the one you didn’t get to deliver. Be very very kind to yourself.

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      • I have a much less serious complaint than you, but mildly analogous. I have twisted my ankle quite badly and been told it will take six weeks’ rest to heal. Six weeks not going for a proper walk in the springtime! But if I do, I’ll set it back, and the not-walking will be for even longer. Hopefully your talking is the same and if you rest your throat it will become easier again in time. Meanwhile, practise ferocious expressions and all the body language you can!

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        • Ouch. And I feel for you not being able to walk in the spring. We’d have gone mad if not able to walk when we were first locked down last year. Maybe you could hire a mobility scooter so at least you can be out in the fresh air while still resting your ankle?
          I will practice ferocious expressions, though they might frighten the consultant tomorrow.

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  9. “She’s a right old ‘Moaning Minnie’, full of complaints and criticisms,”
    No, you’re not.
    You are a seriously ill person with side effects, and whether there are people with more urgent needs or not, you deserve to be treated kindly.
    But at least you can let off steam and tell us all about it.
    Roscoe has lost weight, but he’s off his antibiotics now, and very pleased about it. And he’s decided he likes his food supplement (it’s a bit like Complan!). Come to think of it, he may have been under the weather because he was sympathising with you in spirit. ❤

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    • I can’t tell you how very glad I am to have this support network allowing me to let off steam.
      Glad to hear Roscoe is off his antibiotics now (so am I but I’ve been switched to steroids) and enjoying his food supplement. Maybe, like me, he’ll start to put on some weight.

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  10. Oh Mary, I can’t believe they have been so unsupportive and inconsiderate in hospital. It’s as if you are a product on the assembly line which isn’t urgent. I do hope you will be feeling a bit better soon and the nursing staff will start treating you with respect. My experience of hospitals has been mixed, one terrible childbirth, one really good (my GP & community midwife using hospital facilities) old fashioned gallbladder op with 8 days in hospital with my own room NHS & great treatment & recently amazing one day lumpectomy plus really kind radiotherapy dept. However when my Dad went into a different hospital with rapidly increasing dementia the mixed ward of doolally men made life awful for the women. They lost Dad’s teeth, gave him C-difficile & after 7 weeks ignoring his heart condition he died of a heart attack on a Sunday evening which they didn’t notice for some time. I hope you don’t mind this long reply but it’s in response to the way you have not received proper care & kindness.

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    • Oh, Liz, I’m so sorry to read about the horrors your dad went through. Although my dad survived his various stays in hospital when he had dementia the treatment he received was often way below what it should have been – and what is so worrying is that nothing seems to be improving, at least in that area of care. I’ve heard from others about how well treated they have been when having a lumpectomy and radiotherapy.
      I think what irks me most about my stay on the assessment ward is that it was clear the staff knew I wasn’t receiving the care I should be but they thought ‘we’re very busy’ made it OK.

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  11. When I read posts like this one, I want to bang my head against a wall in frustration. But despite all of the issues with the NHS, try to imagine being in Brazil, or India. To counteract this experience, I offer my own, from this week. Not as serious, I hasten to add.
    I had an infected horsefly bite. My hand swelled to twice its size. The doctor was contacted the next day, and a Practice Nurse phoned me. By 2 pm, I had antibiotics. And they immediately reduced the pain and swelling,. A wonderful service, free of charge.
    So I have to conclude that they have ‘given up’ on you, Mary. If that’s the case, then that breaks my heart, for so many different reasons. It really does.
    Best wishes as always, Pete. x

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    • Pete, I have to say that my GP practice went well above and beyond what seems to be the norm these days. I saw the practice nurse late morning to give blood for testing, she thought I felt warm, checked my temperature, talked to the GP who saw me within minutes and prescribed antibiotics. The moment the bloods came through the GP was concerned enough to talk to the assessment unit and arrange for my admission then called me to let me know I was expected. All that in a few hours. They could not have done more.
      It all unravelled when I was admitted to the assessment unit, which is described on the website as the ‘front door to the hospital’ so you have to go through it. It was decided I had pneumonia and even when the treatment made no difference they wouldn’t reconsider. Only when I was finally shunted off to an appropriate ward and the consultant voiced concerns about a wrong diagnosis did things change.
      Some of the staff I spoke to really are banging their heads against the walls in frustration and anger at the way some of their colleagues are dragging down the service.

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      • Welll I am pleased to hear that you had good service from the GP surgery at least. Perhaps those ‘truculent’ staff need to be complained about more? It sounds to me as if they are in the wrong job.
        Best wishes, Pete. x

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  12. Oh, Mary…I’d have raised holy hell! It stuns me to hear how unsympathetic and uncaring these alleged “health professionals” are–not to mention rude. In treating your fever, cough, and pneumonitis, they disregarded the fact that you’re a cancer patient. To me, that’s heartless, cruel–and I’d fire their asses, if I could! The problems is, no family members are allowed there with you, to make sure you’re properly looked after. Used to be we could sneak food and other items to our loved ones in the hospital, to help provide comfort. Now, patients are at the complete mercy of the medical staff.

    I’m sorry you had to endure such terrible treatment. The only positive: Your tumor has shrunk. That is welcome news! I will keep praying and hoping for the best. Just so happy to hear from you, as I know everyone else is. Take care of yourself…

    Big hugs,
    Linda

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    • Thanks, Linda. I am not sure what makes some people think a career in nursing is for them when, as someone else pointed out in a comment, they have clearly had a compassion bypass.
      No visitors but the DH was able to send in supplies, which was useful.
      Anyway, I’m home. Trying to relax and not do too much. Feeling nervous about seeing the oncologist tomorrow and hope she has some positive news – and it’s not another set of unknowables.

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  13. Mary, I am so impressed once again with your strength and ability to find humor in what would “piss me off to no end.” Hospitals are too often filled with people who don’t remember what it is like to be a patient. I am thrilled that you finally got someone with a brain to give you the correct treatment. I hope the news on Monday is good and makes you smile.

    Sending gentle hugs and as always, prayers.

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  14. Oh Mary, I’m exhausted again after reading about your experiences but relieved to hear you are out of hospital again. The smaller tumour size is great to hear. Please let it stay that way and Monday be a positive consultation.
    Juliet xxx

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    • I was pretty exhausted by the time I came home, Juliet. I only ever slept for two to three hours before waking up. Lovely to be home in my own bed. The cat seemed quite pleased to see me back 🙂 Fingers crossed for Monday – ooh, that’s tomorrow.

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  15. I’m almost speechless but not surprised sadly, at the lack of attention to detail (or even to the broad brushstrokes never mind the fine detail) by the staff. Thank God you have voice and can speak. Imagine the people going through similar who can’t speak. Good that there’s a reduction in tumour size. Fingers crossed for more factual information on Monday. Keep us posted. We’re all with you. xxxxx

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    • Thanks, Janette, keep those fingers crossed. I’ll report back with whatever news I receive. I have a feeling I won’t hear anything definite, though, as in theory the radiation is still working so they can’t know what’s going to happen to the tumour. I suspect it will be more of the waiting game.

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  16. You may not be able to talk a lot now, but thank the heavens you can WRITE. And you are no Moaning MIllie – you are patient – hear you roar! These days, it seems a patient must be full-thinking and fully righteous to get half-way decent nursing and doctoring done. A sad course of health care. So keep on roaring, Mary. As others say, keep us posted (haha, that’s a pun, get it? blog posted…) and know we all care a LOT. xo

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    • Love your pun, Pam – and yes, I got it 🙂 I will keep you posted!
      I hope I will be able to talk a bit more soon – it’s very difficult for me to shut up, but at the moment it does seem to ease the cough. Possibly the DH and the universe conspiring to keep me quiet, do you think?
      Thanks for your support.

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    • I’m so pleased to be home, Kim. It’s good to be able to sleep in my own bed and have access to food and drink whenever I want. I’m trying not to think too much about the shrinking tumour until I hear from the oncologist tomorrow.

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  17. I thought I would pop over and see if there was an update…glad that at least your cough subsides when you are sitting quietly and not talking!.. And that the tumour has shrunk.. I guess you will be on tenterhooks until Monday but hopefully further encouraging progress with both cough and fatigue.. You have been through the mill and back but are still standing… those kick ass boots clearly were doing their job.. wear them on Monday. Thinking of you..♥♥

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  18. Thanks for the update.

    That nurse who told you that other people were worse off must not have read your chart. I am happy to see that you are giving them “what for” (otherwise known as advocating for yourself). It can be a very hard thing to do, but there are times that it can save your life.

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    • I don’t think the nurses on that unit paid much attention to anyone’s notes. It is quite tough doing your own advocacy and part of me wishes I could be a patient patient and just keep quiet and go with the flow. Anyway, I survived the assessment unit and reached a ward where everything was so different and now I’m very happy to be home – even if I still can’t talk without coughing!

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      • That’s the great thing about writing. It rarely makes us cough. 😊

        RE: self-advocacy. My mom nearly died twice when I was born. The first time, they didn’t realize she was allergic to ether. After I was born, there were complications and they had to stop the bleeding. Then, days later, her doctor had just arrived back from vacation (golfing in Arizona) and told the nurse to make my mother get up and walk. The nurse told him to look at her chart. He told the nurse (basically), “I’m the doctor.” The moment my mother stood up, she started bleeding again and almost bled to death. She did nothing about it because back then doctor’s were treated like gods.

        And we wonder why hospitals and doctors started getting sued?

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        • Glad your mother survived, even if she didn’t complain. My parents’ generation was so happy to have the benefits of our National Health Service that they did treat doctors like gods. I remember my mum changing the bedding and cleaning the bedroom before calling the doctor out when I was ill.
          A few doctors still think they should be treated like gods, though I had more problems with nurses who wanted to be treated like doctors.

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          • In the USA, we have nurse practitioners. In rural areas, they can diagnose and prescribe just like a doctor. Funny thing is — many times there is more caring, compassion, and a willingness to listen from the nurse practitioners than the doctors.

            I have run into nurses like the one you described and agree. I call it “Wannabe A Doctor Syndrome” (WADS for short). 😊

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  19. Oh Mary, so sorry that some of the staff turned your stay in hospital into such a challenging experience. Good to hear they eventually worked out what was going on, put you on the right meds and you’re now home. Great that the tumour has reduced in size too. Wishing you all the best for Monday. Sending love and hugs.

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    • Thanks, Wendy, I’ll let you know how the meeting goes with the oncologist. I’m feeling nervous right now.
      Some of the staff were brilliant – professional, caring and kind. Others should not be allowed anywhere near patients.

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  20. Sorry to hear you had to report again and again of the beeping and they told you it was not as serious as other patients. It was good to know by having the CT scan, the result showed a reduced size of the tumor. Continue to pray for you, Mary! ❤

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  21. Right! Backpack packed tick, Boots… toes sharpened and the rest polished tick,…Good news on the tumour shrinking…Yay for your original consultant doing her job as for the rest…shame on them and no you are not a moaning Milly…remarkably composed I would say as I most likely wouldn’t be…Big Hugs and best wishes for Monday 🙂 x

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    • Oh, I didn’t think to sharpen my toes – good idea! The backpack of essential supplies will definitely be with me if I ever have to enter the assessment unit again. Thanks for your good wishes for Monday – will let you know. xx

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  22. Goodness Mary I’m speechless! Just so glad you made it through all the ineptitude and bungling and finally feel a bit better. Hope Monday brings you positive news. Will have my fingers crossed for you🤞xx

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    • It’s been a pretty horrible couple of weeks, Sue. I thought by now – over a week on steroids – the cough and breathlessness would be easing but I’m afraid not. Let’s see what the oncologist has to say tomorrow. Thanks for the crossed fingers – mine are, too 🙂

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  23. Where did they send you? Which hospital so I will know to give it a miss? This sounds like Reading or Weston General 40 years ago – sure you didn’t pass through a time warp? However did you survive such none-care. Only one up-tick, the tumour has lessened. I know one thing Mary, I don’t have your strength. 🙂

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    • Nope, no time warp, Barbara – 21st century nursing care on a very busy (as they kept telling me) assessment unit! Anyway, I’m home now and just trying to get myself psyched up for tomorrow’s meeting with the oncologist to hear about what the tumour is doing.

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  24. Hi Mary. I am so glad to hear news, I was getting worried. I am also sorry that your experience in hospital was so unpleasant. It sounds like some of the staff were just down right rude. But your good humour saw you through it and will continue to sustain you. Good news about the tumour being smaller. I hope the good news continues. Take care. Thinking of you. xx

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  25. Whenever I’ve stayed in hospitals, the windows are always locked ‘for my safety’. I crave fresh air, and always have an urge to throw something through the windows. Perhaps they think we’ll throw ourselves out?

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    • I don’t get the locked windows, either, Stevie. In the assessment unit, they could unlock them – a whole two inches! The ward was on a floor above but even if the temptation to throw myself out was there I wouldn’t have been able squeeze through two inches. The other thing is that the Venetian blind is between two panes of glass. I’d love to sit down with the designer to hear his/her thinking 🙂

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  26. I am glad you got in that remark about Dignitas, I hope she remembers it! This is the dark side of hospitals and the caring professions. Not all nurses are angels. Lots of the medical profession are wonderful of course, but I bet many of us have had similar experiences, in a smaller way than your horrendous stay, but that awful helplessness.

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    • I think she thought I was extremely rude to mention Dignitas 🙂 You are right, not all nurses are angels and some should not be allowed anywhere near patients. Some are brilliant. I fear they are the ones who will leave the NHS because nothing can be done to ease out the useless ones. I realise from the comments I am far from being alone in my experiences. The helplessness is horrible and, of course, patients can’t have visitors to help make their needs known.

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  27. Oh, my goodness, Mary – you moan all you want as any complaints are completely justified! What a horrible experience. Thankfully you got the correct diagnosis and treatment in the end and that little bit of hope that the tumour is reducing. Keep being so strong and telling it like it is.

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    • Thanks for your kind comments, Rosemary. It has been pretty horrible. I’m glad to be back at home and it’s such a relief not having high temperature spikes. If the cough would clear up and my breathing improve life would seem a lot rosier. I’ll find out more about the tumour tomorrow – fingers crossed!

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  28. How anyone could call you a moaning minnie is beyond me, Mary. Not being listened to, waiting so long for a drink of water? Good on ye for making a stand. Hope you have a better experience in next wee while. Very moving, Mary. Thank you,

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  29. Dear Mary, Was so pleased to hear your cancer has shrunk, but aghast at your other inhuman treatment! It brought me to tears. Hang on in there – you’re wonderfully strong. Am rooting for you. Hope springs eternal. xx

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    • I have to admit, I was brought to tears more than a few times during the first couple of days in the hospital. It was very different when I was finally sent to a ward – of course, the consultant there took action to get a proper diagnosis and correct treatment. Thanks for your support – it means a lot.

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  30. I am glad you are at least home, Mary, and they did find out the cause of your cough in the end. The NHS certainly seems to be struggling to deliver a decent service lately. I’m reading about a lot of bad service and long waits in the blogosphere.

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    • I’m so glad to be home, Robbie. Even if I’m still not well, it’s just good to be in my own space with access to anything I need when I need it. There are definitely problems in the NHS but I don’t know exactly what is the cause of the bad service and long waits. I suspect Covid will be blamed for much of it but I’m not so sure it really is the cause, especially in my area where there is hardly any.

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  31. Mary, I’m glad you’re home after such a gruelling time in hospital. Good for you for speaking up and standing up for yourself, but so difficult when ill, weary and just wanting care and rest. It is horrendous how some staff will cease to believe a patient can have a brain and heart once in a bed. It must have been a huge relief to be home once again and thank goodness you saw your original doctor. I’ll be thinking of you tomorrow … there seems to be some light for you, for now, thank goodness. hugs xx

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    • It wasn’t fun, Annika and it reduced me to tears on more than one occasion. I was so pleased when the consultant came into my room on the ward and said she suspected I had pneumonitis – a definite turning point.
      I’m becoming really nervous about tomorrow’s meeting now. It doesn’t seem very far away. I must write up my list of questions before I go. Hugs back, xx

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  32. I was wondering if Covid has made frontline health workers burned out and insensitive, but of course that’s no excuse. Thank you for sharing these experiences, Mary. Canada has a publicly funded health care system like the NHS, which is a blessing but can be a curse when things go wrong. It’s good to know it’s okay for patients to self-advocate when necessary. I’m glad to hear your tumour is shrinking and hope you will experience better health as spring comes on.

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    • I live in a rural area which did not have huge numbers of Covid cases, though I think the protocols put in place have disrupted services. And there are serious staff shortages – but no, there really is no excuse for not providing a jug of water when a patient is admitted. Fortunately, on the ward rather than the assessment unit, it was very different, even though they are also very busy!

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