Stroke and mirrors

Hospital 3 was my longest stay anywhere, it meant I could form meaningful relationships with the staff, one thing that was important to me was to learn their names, so I could talk to them and thank them by name, it felt a basic courtesy to the people caring for me.

I’ve listed some below and why I likked them, others won’t be listed but that doesn’t mean they weren’t great too, I’ve just forgotten or have no anecdotes

T the malenurse associate, we gelled quickly with a similar humour and love of Kylie and bad pop music.he really understood that it was difficult being young and on a stroke ward, he learnt my biggest hang ups (like being convinced I smelt of wee after nights using urine bottlesand would make sure I got a shower in a morning, would fuss rich and would celebrate my physio development with me, the first time I walked he was there and was as excited as I was about it and regularly told me just how well I was doing and thathe knew these things after so many years based on a stroke unit, what a great boost and it was often when I needed it most

Even when I was feeling rebellious like when I knew I could stand up so asked if I could try a stand up wee, T helped, stood me in front of the toilet, helped me hold the hand rail bbalanced my hips then watched and encouraged with no judgement what a great human.

He’d often pop by my room at the end of his shift to say good night and if he was on early morning would be straight in to get me up for a shower

M, a senior male nurse from Croatia, my second night there he came in the room, big, solid built chap, said he’d read my notes and it was a privilege to look after “one of our own from within the nhs” and then when we discussed my home and work life he started to tear -up, he kept apologising for what had happened to me sometimes people are sensitive souls and he was in the best way. During a day I was very emotionally low he came for a chat, gave me a huge hug, then told me he used to be a volunteer firefighter in Croatia and when they were going into bad situations the fire captain would say “chin up, chest out, smiles on” he would tell me this phrase if he ever thought I looked sad, so it must have been often, he was fussy but with all the best intentions, one day he promised in the morning to remove a remaining suture from my chest left from thrCardiac surgery which was aggravating me he forgot during the day and must have remembered on evening handover, he came running into my room at his home time;full of apologies and removed the suture in seconds, true to his word to the last second,

B a- Portuguese / Albanian young malenurse, gorgeous complexion. Big fluffy beard.

I loved the male nurses it just felt nicer to have people who understood my body a bit better. And they were a bit closer to my age too which was nice

M and B weere both attractive men, one morning M came into my room offering to buy me a breakfast sandwich which I declined (I don’t eat fried foods, certainly not at breakfast time check the link at the bottom of this post for my thoughts on hospital food As B walked past the door waved so I waved and smiled back, apparently it was a big smile. M

Early on in my stay Bsaw me being pushed out into the garden spaces by my parents and on my return said how happy I looked, I said I loved the outdoors andbeing trapped in a room wasn’t good for me. He then said if my family couldn’t get me outside every day, he would do it personally. Shook my hand and promised. m and Bweere both attractive men, one morning M came into my room offering to buy me a breakfast sandwich which I declined (I don’t eat fried foods, certainly not at breakfast time, walked past the door and waved I smiled back, apparently it was s big smile. M took offence asking why I didn’t give him smiles like that, the two bickered about it all day, who got the most attention from me, in another lifeboth would be welcome to my attention for being attractive and caring souls. Link needed to food post

Ly – a lovely nurse who regularly worked nights, had the most endearing habit of saying “night night sleep tight any time she left my room on a night shift, so touching and sweet. She would often tuck me in like you would a toddler pushing the bedding slightly under me it was all just very sincere and made me smile and fell reassured

Angi support worker, never without a smile and cheery outlook, on my final night I’d used a urine bottle and she came to take it away saying “I’ve heard you’re leaving tomorrow, it’s about time but I always knew you’d go home fast” I then showed her that days video of me walking and she teared up, we then had a hug about 3am while I thanked her for looking after me for weeks. She said it had been a genuine pleasure. What a way to go out!

C the hca, like Trealised I had a hygiene concern and a morning routine of breakfast, poo, shower, teeth, dress sbd feel ready for the day, one day I was missed for showers etc inthe morning and we complained to the ward manager around lunch time as I had physio and didn’t want to go feeling dirty the ward manage Le then got C to sort it,

The next morning c arrived st 800 by 805 she was in my room getting me ready to get up; simple but touching

S senior nurse who was with my my first few nights telling me how well I would do, she then came off nights and I missed her, when she came back it was with a new ambition: toget me drinking lots of water, she’d appear through the night with 2 litre jugs of water and in her reasoning, would demand I drank, sbut it drove-me mad, I hate being woken up normally never mind with post stroke fatigue and still recovering from cardiac surgery.

We ended up having a great relationship I’d be happy if she turned up on nights and she told me she always chose to nurse me on a night which in a way I think is sweet.

Id ask her some obscure things from time to time, sometimes if I’d made a mess with urine bottles I’d ask her to check the sheets were dryand without hesitation she would, I once got her to scratch my back with her fingernails as I was itchy and couldn’t reachIt’s also something I love being done to me as a reassurance thing. She did it without hesitation and then other nights would ask if I wanted my bsck scratching,when she foun d out about the “night poo nurselink to one bad staff” who had upset me she picked up extra nights to come in and care for me.

Names- one of the first things I did was learn as msnystaff names as I could remember in my newly jumbled brain. I regularly spend my days at work managing 100 people per day, I was once told if as a manager you could ask people to do things by name you’d be respected more and it levelled the hierarchy, I think it’s a basic courtesy too. So deciding these people on the ward would be doing a lot of my caring for weeks / months to be able to say thank you with their name would build a nice relationship and I think it worked, a few would tell me I was their favourite patient and some would do extra things to make my life better, if you’re on a rehab ward mmy tip is to learn the staffs namess sbd aowayssay thank you.

C the ward manager whose office was opposite muy room found out we were nhsmanagement equivalents, would ask me about some management interests we shared like:staffing numbers, Rotas incident reporting and appraisals, she would arrive in a morning stand in her office doorway and shout over to me to see if I was ok; lots of nhs managers particularly at ward level now don’t have patient contact but we built a fast relationship which helped me with the one staff member I did have an issue with (see cchapter) to initiate that conversation though I was in my wheelchair in the corridor and saw her so shouted her name ” at which point she started boasting to the support staff with her that she was my favourite and that’s why I knew her name, the support staff told her I knew everyone’s names, I’m pretty sure I could name all the staff at that point and with how happy they were and how quick to correct her I thought I’m definitely doing something right by learning their names.

Sexy Andrea appeared late on into my stay in hospital 3 as she had Been off, an instant favourite for telling ne with 2 Andrea’s on the ward she wasn’t being “big Andrea” but sexy Andrea instead, she falls into the NWCWI category, alittle rough around the edges but her heart was 100% in the right place, constantly full of praise for my progress and would give me lots of nicknames’my little cockasparrow’she would sing to me in the shower too, and made crude jokes, if there’s a way to my heart it’s compliments and dirty jokes; she became a fast firm favourite.

At times it felt like I had my own cheer leading squad ready to boost me. I suspect I was a bit of a novelty as a young and mentally cognitive patient, I was going to miss a lot of them.

Hospital food

niwcws

Northern inspirational working class women saviours, from ages 17-21ish I worked in a pub and one hospital I worked in was located An-ex mining town, I’ve had a fill of working class northern women in my life,

I didn’t realise they actually run the nhs though, I thought they were generational and had mostly gone away but as a multi week, multi site patient was happy to be proved wrong,

They could instantly lighten my mood with a “hiya love” always sincere and warming like a verbal hug.

I came across niwcws in all 3hospitals.

In hospital 1 Doreen*prowled the ward with the biggest tea pot I’ve ever seen (in a better time I’d have tried to bicep curl it. One Friday night told me she was off t’ “werkin Mens club” where I’m sure she had a regular seat with the same people she’s sat next to for 40 years and would tut-if anyone talked through the sacred texts of bingo.

Hospital 3s had some belters, no airs or graces. Honest, down to earth, funny and loving. I’d bet a tenner they can all make a better Yorkshire pudding than aunt Bessie. if I buzzed for help in the night it was always a niwcws who appeared as they were nearly always support workers they would often help shower me in a morning too and it was always entertaining; when you’re sat broken, naked, immobile being scrubbed you need some humour and grace , one of them also worked in a social club and i bet could drink it dry if you let her, the other smoked about 40 a day and had a voice so gravely b&q would sell it on a rainy bank holiday weekend. My absolute favourite was a woman named Beverly she was a larger lady both in physicality and presence. The first time we met she introduced herself with “I’m Beverly* I know there’s another Beverly on the ward so you can remember me as the sexy one” the dry self deprecating humour, naughty twinkle in her eye and volume instantly endeared her to me.

I would try to work out her shift pattern so I knew when she was around to entertain me. she called me her cock sparrow and I loved it, never really knowing if it was a bird or slang but loved out of all her patients I’d garnered a nickname.

I felt horrible on a day when she got herself into small trouble because of me. I had needed to go somewhere, likely the toilet, she had arrived in my room, with a wheelchair, I was just about standing up on my own feet again, certainly not walking and turning. It was decreed I needed 2 staff to help me move of my bed . Impatient she said “come on” hovered over me while I wobbled to my feet, she placed my hands on her hips and essentially span me towards the wheelchair where I crumpled. I remember being pleased I’d done my first little turn and without a physio supporting me. However when she admitted this to someone else it got her in bother for doing a 2 person move alone, I felt wretched, she had been trying to help me and her actions full of good intention and kindness.

I think of all these nwcisws often even 18 months post event,

*- not actual names, I’m cautious to never name anyone or any centre on the blog but sometimes using a name helps with the flow of a story or post.

surrendering for theVATS cardiac surgery

I knew I was on the ‘urgent waiting list and early May confirmed this with the waiting list manager at the hospital I would be treated in, hospital 1

I got phone call to say the following Wednesday would be my operation and to await a call the Monday before, 

Monday came with instructions on covid testing, and where to attend for admitting the afternoon and night before which would be Tuesday

Tuesday rolled in sbd I had a call to say “we don’t have a bed, don’t come, sit tight”. 

Impatient I took the dog for a walk and as I often did on walks talked to her, I told her I was worried about the surgery, if it went wrong I might not survive and if it didn’t fix my heart we were reaching a dead end of options;while walking. they phoned agsin to go in to the ward asap a bed had been sorted

I checked my packing list one last time and needing more space moved everything from my overnight bag I’d already packed and into a suitcase whivch instantly upset the dog, she hates suitcases as thinks it means we’re going away, she was correct just I wasn’t going on a weeks holiday to the sun. I stood with my case at the door, the dog ignoring me but giving sad eyes from the top of the stairs looking down

I droveto the hospital just after lunch and parked, me and rich walked into the ward I was going to, he took my case across the car park as apparently I was making so much noise with it (still no idea what I was able to do that it was just the wheels on a concrete floor I was seated on a bed, had my valuables taken away and admitted to the ward, Rich left shortly afterwards, that night I didn’t eat, too stressed and anxious, I did meet the anaesthetist and surgical registrar who told me I was first in the morning, to rest well and did my consent, the registrar said “I understand from your notes that you know this procedure well at a prior meeting with the consultant I explained I knew some thorocoscopic surgery from my work sbd thst i had researched the procedure he was planning to his amusement I smiled and nodded he did explain risk factors “death, conversion to open ie ribs cracked open and stroke all under 1%” which sounded great odds to me, i signed the consent then took myself for a walk outside.

On my return the nurse gave me 2 bottles of a highprotein / carb drink saying I needed 2 tonight and 2 in the morning to aid with recovery rather then being starved for surgeryI Idrank one it was allegedly lemon flavoured as in it tasted like those lemon hand wipes you get in restaurants after eating chicken wings smell,

I slept a lot of the evening despite the man next to me taking phone calls every 5 minutes, selfish bastard

In the morning I woke up and the 2 additional lemon bottles were shoved at me, I chewed them down, still unpleasant and then I decided I felt like I had sboulder in my stomach, sharp exit to the loo where it turned out the drink hadn’t agreed with me, or I had a evere “stress belly” and had some terrible diarrhoea, at which point I thought “what if I shit all over the operating table, having just beeng warned I’d soon have my pubic hair shaved off apparently my trimmed look wasn’t enough due to the consultant surgeons immaculate standards on infection control, he wouldn’t be happy with any hair I debated saying I wasn’t well enough, but the theatre staff were waiting for me outside the bathroom and no escape was possible, after a close encounter with a shaver and my scrotum, it was all go.I walked down to theatre with two staff, met the anaesthetist again who had decided overnight I needed closer monitoring through my surgery and arterial and central lines (arterial lines go in through your wrist into an artery to measure blood pressure constantly, central lines go from your neck into your heart to allow fluid control to be quicker and Venus pressure monitoring; I knew from my work as an anaesthetic practitioner how thesethings worked but also the implication meant the anaesthetist had some concerns, another flag I wish I’d paid more attention to, I still could have jumped up and escaped. I remember him scanning my neck with an unltrasoind to place the central line and not much after that

I don’t remember the initial recovery either but I do vividly recall cardiac intensive care.the first time reality began to hit home. I was sat upright on a bed with my husband rich to my right, I was sliding down the bed, put my arms out to push myself back up and found I couldn’t, unable to understand what was happening I got frustrated and Rich tells me almost aggressive, he called a nurse who said it was likely just pain and went to get some pain relief, at this point I remember someone (maybe the nurse) saying my face looks lopsided) and went to call the surgical team, a doctor came and said to me she was very concerned something had happened to me and was organising a scan, I knew she wanted a brain scan and they are only CT or MRI and asI’d had an MRI a year BEFORE THAT ENDED IN A PANIC ATTACK AND Mebeing very upset afterwardsSo I wanted to know what I was having I ttried to ask but couldn’t as the words weren’t coming out so using my right arm which was working I tried to draw the letters C and T onto a pillow under my arm but no one could see, so I grabbed Richards hand and started scratching the letters in his palm until he was able to ask on my behalf and it was a Ct. which I found reassuring but slowly began to recognise that a brain scan, left sided weakness, unable to speak were all stroke symptoms

At some point I had a scan they returned me to CICU with Rich AND a Neurology doctor who told us both at that point I’d had a pretty severe ischemic stroke where a blood clot had stopped an area of my brain getting the blood supply and oxygen it needs and causes damage in most cases a stroke, make sure you’ve checked my timeline post to understand where and when things happened before it gets a bit more personable

:5turbulent years to a stroke.

Hi and welcome to stroke and mirrors my memoir of having a stroke aged 36, but before that let’s fill some history inIt’s 2018 and I’m 32, relatively fit and healthy, certainly no known medical issues, one night in the summer I wake uop barely able to breathe and having a panic, I decideed it was likely hayfever which was bad at that time, the next day I got myself one of those rare emergency gp appointments but with a practicenurse , first thing was some basifc observations “Ben are you fit? She asked I briefly looked at my belly bloated from last nights beer “nah not very fit””so not a marathon runner?” I knew where this was going “your heart rate is very very low, I’m just going to grab a doctor and returning with a very nice GP, the pleasant doctor again asked about my sporting prowess or lack of it and asked if I felt ok. And was I busy? I was heading into work after for a surgical clinical list, he wanted to call an ambulance but I said no, work were already asking what time I would be in.

Instead he did a referral to cardiology, within a week I went to cardiology clinic had an ecg and sat with a doctor who said my heart rate was still very low and pushed a leaflet about pacemakers towards me then took me to coronary care to see a consultant who allowed me home but said I had to be aware of not over exerting myself and if I felt I’ll or faint to attend A&e and he would be seeing me in the future, msybe 6 days, 6 weeks or6 months but I would be back

I made it to 6 months toDecember, I’d had s very stresssful day in work jumped on a tram home which had a technical failure the stop before where my car was parked so I set off in the cold and rain to walk the last 2,miles to my car, after failing to find a taxi. While on the tram I had felt lightheaded but put it down to the stressful day

By the time I got home I could barely stand and laid in the living room floor holding on to the carpet for stability, I felt like I was sliding off the world rich ordered a domino’s pizza.

After it came he said “right that’s it. We’re off to A&e we went up and after observations showed a heart rate of 32 I was placed in the resus area with a defibrillator next to me, the next morning my cardiology consultant came to see me and said I’d be staying on coronary care for a while. I did 4 days before on the Friday I was released if I came back Monday to have a pacemaker fitted,,this went smoothly, made a quick positive chsbge to my health and never caused any issue, it went so smoothly thst during a follow up support call from the British heart foundation they asked me to join them on an episode of their podcast The Ticker Tapes to discuss having a pacemaker so young.

But there were questions about why it had happened I was referred to a specialist cardiology centre near by where I had genetic testing: echo’s and mris, it was eventually found to be a genetic inherited conduction disease. In late 2022 I got a call asking me to visit my pacemaker device clinic as it sent data every night to them and something was wrong, that something was Atrial Fibrillation, when the ekectric signal In the heart isn’t working properly I was soon seen again by the genetics team who said this was fixable with surgery and referred me to cardio thoracic surgery, likely for a vats (video asssted thorocoscopicsurgery known as maze procedure; I learned that all this was, essentially cardiac keyhole surgery by poking the camera and instruments between my ribs, it would likely be very successful and the surgeon had done lots of these cases in fact he told me no one else would be able to do the surgery in the uk, I did my research on it too and his name was on every paper

http://Now move to https://strokeandmirrors.uk/y2023/07/18/the-admission-surgery-and-