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Handhold, in HDU with respiratory failure and terrified

967 replies

Seafour · 22/11/2018 04:28

Just that, is anyone awake?

OP posts:
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purpleunicorns · 30/11/2018 16:23

I'm here 👋 and like 2018 I selfishly prefer this to a blog as I'm enjoying everyone else's input too. Although I think there's an option to share your post so you could share it onto other sites if that's an option you'd consider

How did you meet your DH? He sounds lovely and I'm glad you have that support with you

I'm counting down the days until your operation and keeping absolutely everything crossed that you're well enough for it. How long do you think you'll be in hospital for afterwards? Is there a chance you'll be able to celebrate Christmas at home? Sorry if you've already said, chemo brain going on here Blush

Justanotheruser01 · 30/11/2018 16:27

May I please join the bus?
I've read your entire thread and honestly I can't put into words how outstanding I think you are,I started reading your thread whilst people watching in times square.
I am afraid I'm a little arthritic so I won't be able to add much to the bus but I have a awesome blanket you can share and (a lot of... whoops) duty free booze ans chocolates you can share. please please keep us updated on your operation, we will be all parked on the bus outside the hospital being your own cheerleaders (in between cocktails etc.. Of course ;-) )
A random question, have you considered a VR headset? You can explore the world with them.
Oh and in a very unmumsnet way have lots of hugs

SandunesAndRainclouds · 30/11/2018 18:19

I’m still here. Had a manic few days culminating in a mega meltdown from DD this morning. I’m good for nothing other than flopping on the sofa. I’m supposed to be marathon training but haven’t run once this week

DaffydownClock · 30/11/2018 18:43

I'm definitely from the traditional school of nursing with full nursing care, attention to what the patient is saying/doing/not doing, getting to know 'your' patients and high standards of care. Today's nurses have little opportunity to do much of this (Return to Nursing course demonstrated just how pressed and exhausted nurses are, to the detriment of the patient). I've recently been an inpatient and although the care I received was excellent I do wonder if it was because I could do most things for myself and I was complies mentis- very different story if you're not.
Anyway making a pot of mushroom stroganoff and a plate of Eccles cakes if anyone's hungry 😋

SandunesAndRainclouds · 30/11/2018 19:39

Daffy I’m old school, kind of... last of the Project 2000 nurses but taught properly, and about to do the Return to Practice course. I’m hoping I can still practice the high standards of Nursing I want to and always used to.

Applesandpears23 · 30/11/2018 19:50

I am still here. You have reminded me I need to sort the advent calendar tonight. I have all the bits to fill the drawers, I just need to do it.

I know it is in no way the same but after my experience on the post natal ward after my first baby my birth plan for the second baby had a huge section on the postnatal ward which included, I must have access to food, drink and pain relief without having to cry or beg and I must not be left alone with the staff at all. Thankfully I was able to have a home birth so I didn’t need to invoke the plan.

Seafour · 30/11/2018 19:54

A Christmas tree has been purchased, one of the NZ parcels has been posted, two more to be wrapped and sent. We had a cappuccino and slice of cake at the garden centre, trouble is now I don't fancy any dinner. Lola and dh have been to visit mil who is in a residential care home, she moved there three weeks ago after me nagging for almost three years about the crappy care she was getting. But it was a battle I couldn't fight she has numerous dc to do that for her. I think they all feel very guilty now because she is a different person, the improvement in three weeks is huge, the previous home had all but written her off.

I need an early night tonight because the two dgc arrive at 9:30am tomorrow for a full on day of fun and frolics, I will be 10 pin bowling whilst blending a ventilator on my lap as I need to keep up with extra daytime ventilation hours on the back of having pneumonia.

Andro nice image of you being a cat chair.

Notapizza hi, I love reading blogs but like you I've never subscribed to any, I have a few that I visit on a regular basis but none that I subscribe to.

Maggienolia it makes me feel very powerful when I delurk someone, it's the virtual reality of persuading someone to leave the house for a walk in the park when they normally only drive to work, the shops or the pub. You and your feline lump (strange name for a cat) are welcome to join us. Consider yourself in charge of oral hygiene and daily retainer soaking.

Purpleunicorns I met dh through an online dating site, way back in 90's when internet was dial up, you paid by the minute and there were, I think only two online dating sites. It was very primitive compared to today, I was living two hours away from my office in North London, loving work, happy being a single mum to my five kids but after several years of not dating I felt it was time to have another go. One thing I had learned through two disastrous marriages was that I was useless at choosing men so my eldest three were involved in writing my profile, vetting incoming messages and deciding who was date worthy. I'd given myself a set time to meet a man but although I had some fun dates (and a couple of scary ones) time was up, the gant chart taken down and life returned to normal.
A couple of weeks later I was hanging out with eldest dd and we discovered that a new feature had been added where you could input your ideal partner and it would match you with compatible people. We input all the essentials and it spat back at me four matches out of all the thousands of men on there, that's how fussy year’s of living my own life had made me.
So four potential matches, one of my criteria had been London or London suburbs because in my mind the perfect scenario would be having a relationship with someone who lived near my work, dh lived two and a half hours north of me, so completely the wrong direction which counted him out. Of the other three, one I didn't like the look of, one was a widower who had a perfect dead wife, two lovely dd's and I felt ill equipped to take that on, so I'm down to one who I messaged and it turned out to be one of my favourite clients, we had a couple of lunches but just ended up talking about work stuff and me trying to sell my services rather than my body, mind and soul.
Project "find a man" was dead in the water, to be revisited in a few months time. However I was intrigued by dh's profile and messaged him, he had no photo on his profile (didn't know how to add one) but I wasn't interested in him romantically so that didn't matter. He hadn't seen me either, because of my work I regularly appeared on tv (news, factual not acting) and felt it could compromise me professionally if I was seen on a dating site.
So I was intrigued about why a professional man working full time was alone with four very very young children, we started messaging, fast forward a few months and we progressed to phone calls, still not having seen each other. Another couple of months and we decided to meet, by which time we were very smitten with each other. We agreed that if there was no physical attraction we would go for a drink and walk away, I just remember pulling up in the hotel car park and thinking "thank goodness for that, he's lovely ". Within a year I'd relocated north, adding ridiculous amount of travelling to my life and an additional four full time children.

Justanotheruser welcome to the bus, people watching in Time Square is my idea of heaven, I love people watching although I do find myself looking at some people and thinking "you miserable fucker would it kill you to smile" and I do have days when I can't people watch because I find myself hating complete strangers just because they can walk.

sandunes Super nanny will be on board to deal with meltdowns

Daffy I think part of the problem with me is for very obvious reasons, I don't feel safe in hospital, I do everything I can to make it easy for staff, detailed health passport, photo instructions of positioning and splinting etc etc but they still fuck up. Even on my home ward last week, we hadn't taken the "DO NOT LAY FLAT" sign, I can't turn my head to see what's written on the board, dh had forgotten and on Thursday I was being repositioned and the nurse lay the bed flat, PA was in the loo but luckily walked in and prevented me from going into Respiritory arrest, I was asleep when they came to move me and I guess it's just automatic to do it in a particular way. But and it's a big BUT it shouldn't happen in an HDU setting, or are my expectations just too high? I also think that because my body is so broken it surprises hcp that my mind is so sharp and I admit when it comes to my health I'm a demanding cow.
Mushroom stroganoff sounds lovely.

Sounds as if I'm staying here because I really get a lot from chatting to you lot.

I will try and get fabulous PA to sign up and join so that she can update while I'm in ICU, unfortunately I was banned last year for allowing PA to post on my profile while I was in HDU, the reasons I was given were, allowing someone else to use my profile, even though I couldn't post myself and she is paid to do anything I can't do and suspicious activity because although I was (claiming) to be in hospital the posts were coming from my IP address. I was dictating the posts, when I could and PA was bringing my iPad home to post them as internet was very expensive in hospital, it's free now but I would have been paying £5 to post once a day on MN. Didn't feel fair at all, actually felt like disability discrimination, turned out to be some unpleasant person/people reporting me as a fraud/fake on a board where I had not only bared my soul but also shared photos.

If PA doesn't sign up I will try and find a rl person to do it, MN needs a secret handshake to identify mumsnetters.

OP posts:
Justanotheruser01 · 30/11/2018 20:06

Oh a secret handshake would be excellent. Didn't they a long time ago have an unofficial mumsnet scarf or have i imagined that one?

Izzy24 · 30/11/2018 20:47

Sea,
Yes, please stay here!

I’ve been at work all day but I feel you have been busier - your energy is very impressive.

I completely understand your concerns about your impending admission. It’s a dreadful state of affairs that as patients we feel we need to be on a high state of alert to keep ourselves safe and I agree with Havering that 12 hour shifts have a lot to answer for.

As a cost saving exercise trusts get an extra half shift a week from each nurse/midwife/support worker but at whose expense?

I will be counting down the days with you to next Thursday . In the meantime have a fabulous Granny Weekend.

Crownandheelshigh · 30/11/2018 21:03

@Seafour

Still here, just got a poorly ear (drs not sure I'll get my hearing back but I've gone 4 years above what they said I would)

And a little man going through a leap!

Oooo and my op on Tuesday.

Hope ur ok xx

WitchDancer · 30/11/2018 21:26

Wasn't the scarf one with little horses heads on?

DaffydownClock · 30/11/2018 21:38

I hope you have a wonderful time with your dgcs Seafour, and that you're not completely exhausted! My gorgeous dgs' are fabulous fun too but at the moment I can't get to see them much, hopefully that'll change 🤗

Seafour · 30/11/2018 21:51

Crown sorry about your ear, I hate earache but more importantly what operation are you having?

I don't fancy the horses head scarf, maybe we should all have key rings fashioned out of a tampon, much more likely to get noticed.

OP posts:
WitchDancer · 30/11/2018 21:55

Maybe something wool related to reflect on Woolly Hugs? I'm not going to explain the tampon key ring to my kids! 😂

2018SoFarSoGreat · 30/11/2018 23:25

oh the tampon keyring. Hmmm. A wrapped one would be fine, but have to be one of the plastic wrapped, not paper.

I like the idea of a wool thing (being a knitter) - let's brainstorm...

WheresTheCoffee · 30/11/2018 23:27

I've been quiet and working away in London this week @Seafour, it's been a busy week and whilst I love it, it always feels a bit surreal in contrast to home in the Midlands.
I hope you got your early night ahead of tomorrow's action :-)

Seafour · 30/11/2018 23:49

Witch, I think maybe you just volunteered yourself to knit 200 tampon shaped key rings 😂😂😂😂

Coffee you do realise you are living my old life - living in the midlands and working (often) in London, East or West Midlands?

Don't worry I'm in bed, on the ventilator but we were woken up by beeping from the ventilator, always unnerves me a bit so rarely go straight back to sleep.

OP posts:
MintyT · 01/12/2018 04:59

Enjoy your day I'm off to Stamford with my best friend just looking around the Christmas shops have a coffee and later wine, I'm going to tell my friend all about you and your life enjoy today. I'm counting down with you

Crownandheelshigh · 01/12/2018 08:55

@Seafour

Ear aches horrible but it's not painful I just can't hear out of it unfortunately due to lots of scar tissue they aren't remaining hopeful.

I'm having Botox injected into my bladder as I have an overactive bladder and a sensory bladder. It's my second round as had the first lot back in 2015 but then couldn't get my local hospital to agree to it (for some reason it was diff hosp the first time) plus they can't do it while pregnant. I'm stupidly excited but nervous as hate being away from my little dude! Xx

Seafour · 01/12/2018 09:44

Five days to surgery

My chest sounds a lot clearer today so I have to say a big thank you to everyone on this thread, if it hadn't been for you lot I'm certain I would have cancelled my surgery, my default mindset is to think of others before myself and I would have been thinking how awful it would be to get to Dday and then have to pull out. The wasted theatre time, the potential for numerous spinal ops to be carried out if I give enough notice, the huge team involved in my surgery twiddling their thumbs on the day.

My SATS could be better, 90% which would leave a normal person feeling rubbish but I'm used to running that low and lower. I've been visited by Elsa the cat who seems to sense the my dgd is coming (it's her cat) and is very excited. Lola has just bounced

I finished writing detailed Christmas lists last night, along with detailed instructions about what to do when.

This year we won't be participating in the living advent calendar for our village, it was a close call last year with me making the decorations from HDU, we ended up with the three kings in the form of the dog, giant rabbit and tortoise. I haven't mentioned the tortoise, he's in his 90's but we've only had him since 2008, bought from a reptile rescue centre he had been owned by a lovely man who'd had to move into residential care. He's a leopard tortoise and has never hibernated so he lives in the house during the winter, hangs out near the Aga and is a grumpy old man in a shell. He won't be coming on the bus because he bites people's toes and once a week empties his bowels all over the kitchen or garden room floor, tortoise shit is evil, really evil so he can stay at home.

Yesterday we were discussing dental hygiene and the fact that good old fashioned nursing seemed to make it far more of a priority than modern nursing. I will now tell a truly shocking tale of poor hygiene in hospital which unfolded on the spinal ward following one of my surgeries. There was a young lady in my bay, let's call her Mel, she'd had surgery three weeks before being readmitted with a serious wound infection, had required a general anaesthetic to have the wound debrided and cleaned, when I arrived she had a vacuum pump fitted to the wound. She was very unwell and taking lots of pain relief, she was also being offered (as was usual on the ward) a sleeping tablet during the last drug round which often didn't happen until 11:30pm or later. Every morning without fail Mel would be comatose and when she was asked it she was having a wash she would mumble "no I want to sleep" she always missed breakfast and would eventually surface in time for lunch. The only visitor she had was her boyfriend when he wasn't working and could catch the two buses to coincide with visiting times.
They were judged, without a doubt by nurses, hca's and to a certain but lesser extent by doctors. When I had observed for five days and knew that Mel hadn't washed, changed her pyjamas or brushed her hair or teeth I spoke up. I had a quiet word with one of the more experienced hca's and told her. I was shocked at the response "it's up to her, if she doesn't want to wash" I suggested that maybe she did but because she was always asleep nobody was offering to help her later in the day, the hca suggested that maybe Mel was just one of those people who never washes which is how she got a wound infection in the first place.
I spent time chatting to Mel, she'd grown up in care, had no family, had mixed with a bad crowd and lived on the margins of society until she met her boyfriend. He too had grown up in care, he worked hard to provide for them, they lived in a small flat and Mel had been crippled with back pain for several years and unable to leave the flat.
Her surgery had been a big operation involving breaking vertebrae and having numerous rods inserted, she was discharged home on day four post surgery and readmitted under blue lights. She'd been ill for over a week a gp had diagnosed flu over the phone, she hadn't been seen at home by a district nurse for a wound check and her boyfriend sought help from the lady downstairs because he was worried, she phoned for an ambulance.
I spent some time chatting to her boyfriend and asked if Mel had any clean nightwear, wash things, she didn't but he said he would bring some in, they were obviously not blessed with the biggest brains in the world, out of their comfort zone and didn't really know what was expected of them.
I had taken my concerns to a senior nurse and then to the ward manager, I was told to mind my own business, by now Mel hadn't washed or changed her pyjamas for almost two weeks, I encouraged her to ask for help getting washed in the afternoons but she was painfully shy and was never going to speak up for herself. She now had wash things, clean pyjamas and I'd been down to the shop and bought her dry shampoo and a hairbrush. That evening, I brushed her hair and put it up in a bun, gave her some baby wipes and helped her change into clean pyjamas. The next day her consultant ordered the vacuum pump removed and I decided I would email him and suggest he got the nurses to help her wash first, I went to have a shower and when I returned the pump was removed, I did email her consultant who came and spoke to the nurse in charge. Mel was given the mother of all bedbaths but later that day developed a temperature, started vomiting and was clearly very unwell. I sat and watched, seethed to myself, felt guilty. It was me that went and helped her rinse her mouth and clean her teeth, moped her brow, phoned her boyfriend. She was moved to a side room, went back to theatre for more debridement.
Mel ended up in intensive care with sepsis, a hole in her back which took ten months to heal, she's needed skin grafts to close the wound.
I went to see her boyfriend at home, they had nothing, a feted mattress on the floor, one sheet, a duvet with no cover, no washing machine, few possessions, they didn't claim the benefits they were entitled to because they were both barely literate.
Mel was a tragedy waiting to happen, she shouldn't have been discharged on day four to go home and sleep on the fucking floor, they had no pillows, no carpets, nothing. She should have been seen by a district nurse, gp, anyone who could have stepped in and supported them. They were just two people doing their very best when the world had crapped on them from a great height their whole lives. The whole thing left me seething.

I helped them move into a fully furnished flat before Mel was discharged, they received a gift of bedding, towels, pillows and a second hand laptop loaded with software to help them with basic literacy and numeracy. They were put in touch with a lovely solicitor and their case has settled out of court, my diary was used as evidence. We're still in touch, they are lovely people, they just needed someone, anyone to give a crap about them. Mel is at college, she's doing seven gcse's and loving learning, she's predicted high grades and wants to go on to study and become a counsellor working with care leavers. She's transformed into a bright, outgoing, caring young woman, her boyfriend has learnt to read, drive and has been nurtured by his employer once he learnt what was going on in his personal life. They are two people I'm proud to call my friends. Our NHS was able to neglect and almost kill Mel, nobody cared because they were labelled as sub human by the very people who should have cared most, shameful and telling their story has made me cry.

Dgc have just arrived, the bowling alley awaits. Have a lovely day.

OP posts:
Seafour · 01/12/2018 09:47

Whoops, always proof read, lola has just bounced into the bedroom *

OP posts:
NancyWho · 01/12/2018 14:54

I'm here Seafour I read up a lot but can't always post a reply.

In fact, a part of my job is to work with young people in care so your post about Mel & partner resonated with me. My team work very hard to improve post-care outcomes for the people we work with. Unfortunately not all of the people in our service have a similar work ethos.
In common with the NHS our services have been cut to the core. We have had many successes, every day, but some people fall through the cracks. Most days we're fighting ferociously to provide support and help for these people but many outside of the 'system' aren't even aware of the type of challenges that people leaving care face, let alone knowing that these people need help.
Needless to say it keeps me awake at night. Plenty in my service do care but a service is only as good as that particular individual working within it.

Thank you for answering my previous questions about solicitors and your court case.

Apologies that once again this post is all 'me, me, me'. It's simply that I identify with some of your experiences.

While you are in hospital can you access MN to read posts, even if you can't reply?
If so, is there anything you would like us to post to you?

I don't live in London or the Midlands but since you wrote about it I have been trying to remember to appreciate the feeling of walking, the spongy ground under my feet.

As identifying keyrings go could we have a knitted ladybird or similar? My work means a knitted tampon wouldn't be allowed, I'm trying to think of something innocently funny but my brain is failing me!

Crownandheelshigh will you let us know how your bladder Botox goes? My face ate my Botox Grin forehead, entirely vanity, no biggie I hope you have better luck with your bladder Thanks

Seafour Will there be music and Netflix on the bus, please?
Enjoy bowling and I'm keeping everything crossed for Thursday. ❤️

Andro · 01/12/2018 15:51

Glad your chest is better today Seafour, what you did for that young couple just highlights how special a person you are!

I've spent the morning making soup, so we are now well supplied with carrot and celeriac, mixed veg (my dc call it kitchen sink soup because if a veg is available it's in there) and finally beef and tomato soup. I've also made sourdough bread and ciabatta...I've a feeling both the soup and bread may be decimated before tonight!

Knitwit101 · 01/12/2018 17:12

We have a small tortoise and I'm always amazed by the size of its poo. Compared to the size of its body they are flipping huge.

yawning801 · 01/12/2018 17:14

The fact that no district nurse went to see Mel reminds me of what happened after my surgery. I was told that I needed a wound check and the dressings removed at ten days post-op. I was really struggling, I could barely make a few minutes downstairs let alone out of the house, but they refused to send a district nurse and so I had to struggle to the my doctor's surgery in the middle of town to get the dressings off. Hence nearly collapsing in the pharmacy. God knows how I made it home that day.

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