Hell desended

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I'm recently back home after a 3 week stay in hospital,  my wife came home from work at midnight to find me extremely poorly, very hot and throwing up , she called the out of hours G.P who gave me antisickness meds, I remember none of this and it didn't work , I was admitted to hospital where I continued to be sick a week later. 

They thought at first inhad a skin infection but I didn't,  then they thought I had a chest infection with fluid on my lungs but I didn't so an official diagnosis wasn't given,  antisickness through a syringe driver eased the sickness , this is where the fun began, they kept telling me I didn't need the oxygen that I'd been on for the last year , my stats at test were good so they kept taking the oxygen off me,  my wife was getting frustrated with this and said I needed it to move around , lifting arms etc soon had me out of breath but they wasn't listening so they took it off me again , she came up to the hospital and dragged one of the nurses to my bedside and told me to get out of bed,  I dutidly did as I was asked and within seconds the poor nurse was in a panic and was turning the oxygen back on saying please use it quickly , as amusing as it was I shouldn't have had to go down that road to prove I needed oxygen. 

The next amusing steps was when they gave me a mri and told me I was developing a spinal cord compression which I knew about and which my wife and palliative care team had to explain that we knew about but then they said once they did an operation to help with the spinal cord compression they'd be able to cure my breast cancer,  now my wife and palliative care team had to tell the hospital a few things . One it's too dangerous for me to undergo a operation and 2 they couldn't cure my breast cancer they even had to explain why and the reasons why? My bottom and middle right lobe of my lung collapsed last year and wouldn't be growing back,  the top lobe of the right side is hazy due to the tumour being in the bronchi and blocking the air way .

Yes they thought the dark shadow on my lung was fluid and that's why the lobes had gone , it took someone else to explain the dark area is because there is no lung there anymore and I have terminal cancer and receiving end of life care,  3 weeks it took for this to sink in .

Don't even get me started on the level of care , they asked 3 times in the 3 weeks if I needed a wash,  all 3 times was when I was throwing up so of course I said no , my wife ended up coming in to wash me every day. 

Even during this time they still kept insisting I didn't need the oxygen until I moved an arm then they shoved it back at me .

The NHS have really gone downhill , however the constant being told my cancer could be cured was a bit like dangling a carrot at a donkey and they should have read my notes properly. 

Like I say I'm now back home with my oxygen and when the next infection comes I won't be returning to the hospital,  yes I know it means I could die from the infection but that hospital visit traumatised me that much that I'm prepared to take that risk,  after all I'm already on end of life so what else can GP wrong? 

  • Hi Nala, well this is awful what you have been put through. I hope uour wife or end of life team have reported the hospital and doctors. I've had a few rants at doctors and gp nurses Evan a&e staff for not reading my records. They should share diagnosis, so there are no mistakes. Is there another hospital you could attend in an emergency. There is 1 hospital I've told ambulance crews not to take me to. But I live in a city and we have a few hospitals. I hope the vomiting gas stopped and your settling down a bit at home. Sending hugs to you. XX

    MOI

  • It was so annoying not being listened too and the amount of times they kept saying i didn't need the oxygen or I needed it until they'd drained the none existent fluid of my lung then I wouldn't need it. 

    My wife contacted pals and that was the only reason I got the oxygen reinstated. 

    I live in a rural area so there is only one hospital I'm entitled to go to due to the catchment area this is why I've said no to the next time .

    We know there will be a next time , we know I'm declining and we're aware of the risks. 

    I'm just saddened by the lack of care that I received whilst in hospital x

  • Nala, I was horrified to read through what happened to you in hospital. I do hope you have the energy to put in a formal complaint about it. But most importantly, I hope you are recovering and feeling better now you're home.

    I had a similar experience in March, when I was kept in hospital for 9 days where my endocrine doctor insisted on treating me for a chest infection, which I didn't have, whilst ignoring all the symptoms of the bowel infection that I went in with! It was the most exasperating experience ever! And I too don't want to be taken to that hospital again. But like you, I have no choice of hospital.

    I have filled in an Advance Care Plan, which states my wishes for my end-of-life care. In it, I have stated that I do not want to be treated at my major hospital. This info will be in my medical notes, and also held by paramedics. It isn't legally binding, but there are other forms you can fill in that are, if you live in England.

    I do hope you are OK! 

    Best wishes

    Kate

  • Hi Nala, firstly I hope you are now as well as possible. Whilst not on the same scale as your experience I have similar issues with my GP surgery not reading my notes. They seem fixated on box ticking and making their quotas. The diabetes nurse wanted to put me on Metformin to ‘protect’ me from the effects of diabetes in later life. I asked her if she’d read my notes because diabetes wasn’t going to kill me but rather my Stage 4 cancer. At which point she ‘agreed’ to leave things as there are. Think this shows how the NHS at all levels of care isn’t really patient-focused anymore.

    All the best.

    Maninbath

  • Don't go there re diabetes,  I'm diabetic too and unfortunately my appetite is so poor I can mainly eat fruit and yoghurt, we all know what they are high in, and drinking , I usually go for the no added sugar etc but lately I seem not only manage drinks with sugar In them .

    At first they moaned and then I reminded them that these diabetes problems are what happens 20 odd years down the line, I'm already on end of life care I'm not going to be here then , I'm surprised I'm hear now in all honesty. 

    So I told them it's now a case of eat and drink what I can and want or not eat or drink , they've finally realised what I'm getting at but now and then , yes they have a whinge about my levels , like you say it's all about ticking boxes and dotting the I's,  patient care definitely isn't thought about anymore and if Ithought I could go private then I would. 

  • It is frustrating I agree and it's taken a while for me to start feeling slightly better I no I'm declining and my respect form says I want to die in a hospice or at a push at home not in hospital and I did say i didn't ming been admitted for something treatable like needing IV fluids etc but I don't wish to be resuscitate,  they admitted that because of the state of my lungs they wouldn't anyway .

    I've told my wife that the next time I become poorly we aren't phoning 111 or 999 I won't go into hospital. 

    I was treated less than a piece of meat had to fight to keep the oxygen that I need , no I won't go down that road again .

  • I'm.not sure what an advanced care plan is I just know I originally stated I wanted a DNR and the only time I'd agree to be admitted to a hospital was for something treatable and needing IV but after being treated the way I was I've told my wife and nurse specialist that I won't be ringing thw hospital again , the nurse specialist did say that would shortened my life but at this stage I don't care , I don't really have a life anymore , I'm stuck in bed , use a catheter,  can just about make the one step to the commode but can't clean myself up or get back on the bed so either have to phone my wife to come home or wait for the carer , that isn't living it's existing,  I can't even leave the house anymore , 

    Sorry to sound a Debbie Downer 

  • I don’t know what to say having read this horrible saga (and some of your earlier posts). I hope you can find a way of being more comfortable. 

  • Pain killers are the only way of being made comfortable and oramorph for the breathing issues and sleeping , sleeping is my main thing these days and I sometimes enjoy chatting online to others but it doesn't happen often 

  • Just wanted you to know I am thinking of you and hope you can feel peace and rest in the safety of your own home . X Chris