Handhold, in HDU with respiratory failure and terrified

[Seafour]

Just that, is anyone awake?

Delurking from this thread to wish you luck in your surgery - I've been hanging on your every word and would definitely read your book if you ever write one!

×seafour× I'm loving your fireplace.
Just popping in to.widh you well before your surgery. I haven't been able to speak to my dsis about her experience as a hdu nurse. I'm totally horrified about the story of Mel. Are you in contact with her?

I'm totally amazed at what you have gone/going through and are still looking out for people like Mel. You are a rare jem xx

Oh my. I genuinely laughed out loud at sedated while they slit my throat...

Your surgery is fascinating, thank you for all the gory details. I had to Google nasal pillows and have to ask- do they or the masks ever feel claustrophobic? I struggle with things on /around my face and neck (thanks to the xh) and my first thought was that it would take a lot of getting used to.

Another lurker here who has read your story open mouthed and just want to wish you all the best for your op!

Bobbiepin as cancers go it's probably the best one to get, I have bigger things to worry about, I'm sure it will be fine.

Crownandheels good luck with your operation, be sure to post when you're on the other side to let us know you're ok.

Itssquidstella thank you.

Rach thank you, can't beat a real fire. Yes I'm still in touch with Mel, I acted as her advocate at the beginning of her negligence case until we found a case manager she could trust. It's been very rewarding and humbling to watch her go from a shy, frightened kid to become an ambitious young lady with a future full of hope. It compensates a little bit for the fact that her body is scarred and deformed by what happened to her. To be neglected in care is bad enough but as an adult at the hands of the caring profession is shameful. I'm proud to be her friend, she's a warrior.

inflag just having to trust a machine to breathe for me is hard, hate the masks, it makes your mouth dryer than a camels hoof. I have a kind of love hate relationship with the ventilator. Love what it gives me but hate what it takes away. Nights can feel lonely, three splinted limbs, mask, sats monitor, there's never going to be any middle of the night fumbling in my bed, I miss that

Delurking to say how much your posts have touched me. Wishing you the best of luck and you'll be in my prayers.

Agent13 making people delurk makes me feel powerful, hop on board and settle in for the ride.

@Seafour defo will!!

Speak to u all when I'm on the other side.

Getting nervous now 😪

Hi Seafour, thank you so much for taking the time to post such an interesting (and somewhat scary) thread. Now I've found you, I'll be following your progress with everything possible crossed.

Your story has reminded me of an articulate, passionate and very funny man that I once met on a training workshop for an NHS volunteering role I had started. He was the guest speaker for the afternoon session and his job was to talk to HCPs about his experiences of the NHS as a patient who was paralysed from the neck down.
He started by talking about the life that he had carved out for himself at home, the work of his PA and how he was able to live an independent life. Then he went on to speak about the absolute fear with which he faced his regular admissions to hospital whenever he picked up any sort of bug. Not because the bugs themselves were particularly dangerous, but because they triggered a cascade of events which were dangerous.
His PA could not work 24 hours a day, so if he was poorly and needed more overnight care than normal his PA couldn't safely provide it after a full day shift. But getting a carer with appropriate training at short notice is almost impossible, so his only alternative was to be admitted to hospital for care (the bugs did not require hospital treatment).
But being admitted to hospital disrupted his routines, physio to help his breathing would be missed, so his health would begin to deteriorate. Then he might aspirate vomit or maybe get some fluid build up and the decision would be made to intubate him for ventilation - at which point he would no longer be able to speak or explain his needs and he would be left 100%, silently reliant on the people whose slapdash approach to his care had led to the worsening of his situation.
He explained all this patiently, even humourously, but with a quiet fury. He generously answered all our questions with honesty and openness. Listening to him was life-changing and a huge education - much like reading your thread.
He hoped that his work speaking to HCPs would lead to better communication, more empathy and better listening so that patients could be safer in hospital. I hope that this thread is also read by HCPs who might think more carefully about their own practice in future.

Thank you again

Delurking here to give you a bit more power, might not post much but be assured I wish you all the very best for your op (and to crown too). What an inspiration you are. My mum was an old school nurse (born 1925) and my goodness your story and that of Mel would have be unthinkable when she was nursing. Nowadays there are so many drugs, so much machinery and so much paperwork and yet such appalling lapses in the basic standards of care. I am renowned (and get sighed at by the family) for drawing attention to failings because I always think the next person might be another Mel who can't stand up for themselves. I worry that if just small failings become acceptable then bigger, more dangerous ones will creep in until we look back and it is too late. Luckily they only tend to be about minor matters so I am looking up to you as a warrior!

Two days Seafour I would wish you luck or all the best but you don't need all that. I firmly think that you've got this.

Your PA sounds fab.

For me things have moved along, I might ask for details of your solicitor...

Have a great time with your DGCs.

Good luck *Crown!
*
We are still all here, happy to budge up for the rest of you.

Glad you had a good visit with your brother. It must be hard for him to see you get ready for this.

As a mouth breather with sleep apnea the darned masks have foiled all efforts. I'm also a side sleeper, so full mask managed to move my lovely (horrifyingly expensive) crowns just enough to cause a very painful abcess. That was the end of that. Nasal pillows are fine, except I still breathe through my mouth so all is for naught. Waiting for a new idea. Not that I'm complaining! I don't think I warranty any complaints once aware of what you go /have gone through. You have made me thankful, grateful. And much less whiny. My DH thanks you 😍

Delurking to add to the many who have read your thread in wonder and admiration.

One key point I've missed is why you need the surgery? Given the risks and that you won't be able to bend forward in future?

All the best for the op.

2 more days Sea you can do this!

The best of luck today Crown. Let us know how you're doing when you can

Morning everyone, I've just made a cup of tea and bought it back to bed to catch up on the thread before I get up and face the day.
How you doing this morning @Seafour? Do you get nervous in the days leading up to surgery? I often think of you throughout the day (does that sound creepy?! Don't mean it to!)
Have you read a book called The Choice by Edith Eger? I read it in the summer and you remind me of her - been through a terrible time yet never given up and are using your life to stand up for others and make a difference in the world.
Hope everyone has the best day they can.

Hi seafour. I’ve been reading your thread whilst recovering from surgery but haven’t known what to post! You’ve had me in tears, but above all I am just utterly amazed at what you have gone through but yet here you are inspiring us all and making us laugh at times.

I’ve been feeling sorry for myself as recovery from my surgery is taking longer than I had hoped... it’s regarded as major surgery but compared to the procedures you have been through I would class it as around scraped knee level!

Sadly I also found some of my “care” in hospital appalling and shocking. Whilst on the same day receiving genuine care from the kindest staff you could ever meet. I have worried what happens to the more vulnerable, and you have highlighted that with your tale about Mel. Thank god you were there to advocate for them. Imagine where they would be now if not for you?

So I’m hopping on the bus too as you’ve given me a massive kick up the bum to stop feeling sorry for myself. We may not be in the hospital with you when you go for surgery, but we won’t be far away.

Hi Seafour just delurking to wish you all the best for surgery and a speedy recovery

Countdown to surgery 48 hours, we will be arriving at the hospital at 7:00am on Thursday morning.

I've had a pretty rubbish night, loads of secretions which make the less effective and a suction machine doing overtime, a small grey and white dog sniffling and snuffling in the bed next to me. She is allowed the occasional sleepover I think more for our benefit than hers.

I switch to a very light diet today and clear fluids only tomorrow, my descending colon and bowel along with my bladder are all completely paralysed. So it's beneficial for all involved if there is less shit to deal with immediately post surgery. It will be the aspect of my care that causes the most problems, pain and if previous admissions are anything to go by arguments too.

Perspic I would happily go and speak to hcps if the opportunity arises, I think it's so easy for people to forget that behind the disability is a person who had a life before, we often had careers, hobbies, status and power a wheelchair can strip all that away in an instant.

Roystonv thank you for delurking, I think some of what goes on is down to the little failings as you say but there is a much bigger problem on some wards with the way staff are recruited and managed. Sometimes a culture of neglect develops unchecked and lives can be lost. Mel would have died if I hadn't been there, they attempted to isolate her from me by putting her in a side room where her care was virtually non existent. I twice found her covered in vomit and laying in a soiled bed, her medical notes showed failure to act immediately on the hospital sepsis protocol. If I hadn't been there she would have died, of that I have no doubt. Keep speaking up, always no matter how small the incident. We all have a responsibility to look out for each other, it's what makes good humans.

Sadly Mel is not the only person I've helped in hospital and I'm only too aware that I escaped with my life last year ONLY because of my PA.

Nancy pm me if you want to

2018 get your dentist to make you some retainers, the pressurised air and dryness it causes can lead to tooth decay.

Maggie thank you for delurking, I need surgery because my spine isn't straight where it should be and has no lumbar curve where it needs to be curved. It's compressing my lungs which impacts on my respiratory failure. Without surgery I would most likely be suffocated from the inside over time.

Bex do I get nervous, apprehensive maybe, feelings of dread a tiny bit. I know I'm going to be in a lot of pain, I know I'm going to suffer but ultimately it should improve my quality of life as long as I work hard during recovery. I will suffer the pain with a smile on my face, it's just something I have to go through to get where I want to be which is on a plane to New Zealand in January 2020.

justasyouare don't invalidate your own suffering, surgery is tough on the body and mind, be kind to yourself and eat lots of protein.

Albus welcome and thank you for delurking.

This thread is fabulous, you lot are fabulous. It would appear that we have brought kindness and compassion back to Mumsnet, quite some achievement people.

Seafour delurking to say your thread has been an inspiration to read (you should definitely blog) and to wish you well for your surgery

Seafour another delurker and cpap user wishing you well. You are one inspiring and amazing lady.

On my way to hospital... nervous!!!

And been a bit silly and had a cry as left my son with a friend (who loves him to bits and he's fine) 😪.

Thank you all for the good luck messages!

I will post as soon as I'm able!

Posting on here (sorry @Seafour) has made me feel less alone (anxiety and depression sufferer and don't like talking about it with others as I feel I'm a burden)

@Seafour Not long until your op! Xx

Crownandheelshigh - thinking of you today and looking forward to seeing your posts when you're on the other side.

Seafour - Still here and thinking about you, I saw earlier that you don't object to people praying for you so I'll keep you in my prayer as well.

Crownandheels you don't need to apologise, we're all here to listen to you.

Just found this thread and read it all the way thorough, what you've been through! I can't even conceive of half of it and you're still fighting and advocating, it's really inspirational!

Sadly I've had experience of the NHS "you peasants can wait" culture - I've been on respiratory wards twice now with massive blood clots on my lungs (they still don't know why, seems I'm just clotty).
That meant I was on a ward for a week with 5 old ladies who all needed help with various things like toiletting, but I was totally alert and fairly mobile after the first few days. The amount of times I had to "pop over" to the nurses station where they were leaning on the desk chatting away about weekend plans while all ignoring the buzzers from patients badly needing to pee was infuriating.

We had one lady who liked nothing more than to shout for them every half-hour or so and their solution was to ignore her. The rest of us, next to her, wanting badly to sleep at 3 in the morning while she shouted, sadly didn't have the option to just "be further away" like they did. When I eventually went and told them she was shouting they claimed not to have heard. I could hear her from their station, clear as day. They totally missed one old lady whose IV had slipped, leaving blood dripping (or this may have been catheter and urine, I cant precisely remember), I do remember she ended up being rushed out to a critical care unit in the middle of the night.

I like to think that I am understanding when people are overworked, and that one person can only do so much, but my experience has overwhelmingly been that the patients are getting in the way of them chatting and that we'll be gone in a week anyway, and who are we going to tell?
That's not even including things like the photo I took of a broken bed and old IV stands totally blocking a door marked "FIRE DOOR KEEP CLEAR", I wish I'd actually sent that in to the complaints people like I intended.

Storm welcome, your NHS experience doesn't surprise me one little bit. Sadly the PALs service although run by independent volunteers all of their protocols have been written with "litigation prevention " in mind. The reality of PALs is that they will sit and listen sympathetically but have no power to bring about meaningful change.