Life on the medical ward …

I am in past tense still and am going to share my highs and lows of the 10 days I spent on the ‘Medical Ward’ directly after admission.

Thursday 9th June

So I wake up on day one to see the Medical Ward in all it’s 5am glory … if you have slept to 5am on a ward you have had a great nights sleep! The machines are pinging, the sun is glaring through my closed, blue, (polyester?) curtains designed to cook me out and into a social place with the curtains open. Through the gap in the curtain by my toes, I can see the not quite with us yet face of an elderly lady and decided I was not yet ready for this world so I fixed that gap, headphones in and went to the happy place in my head for an hour more.

It’s now 6am and I am STARVING MARVIN and the memory of the two packets of mini cheddars, my entire food intake from the day before is really not cutting it … did I ask for something to eat when I got to the ward or did I do my polite ‘I don’t want to be a bother’ face and go to sleep? Probably the latter of the two – standard Leanne.

I press my buzzer 🚨 and wait a minute or so for someone to appear, feeling like a fraud and a drain on the over stretched under resource of these hardworking people within our National Health Service with ‘Please can I have a cup of tea and some biscuits?’ ☕️🍪 and bless this woman’s heart, at the back end of 12 hours running around after everyone and every noise, making me a cup of tea and making sure it was spot on was of ultimate importance to her. ❤️

Breakfast is served from 8am but by then we are told I am nil by mouth 🤭 just after I finished my Tea and Biscuit’s! *Massive evil cackle* … which is then revoked by lunch time.

The Consultant on the ward and his merry band of juniors do their rounds c. 10am. My master plan was simple, get up, get dressed and look healthy (with a very impressive selection of people looking the exact opposite in the 4 bed bay for emphasis ) ❌ failed miserably as my blood tests would not play the same game!

So now the next part of the waiting game begins, this is the part where we watch for the infection markers in my blood results to decline and prove that the IV antibiotics are working and wait for this CT scan, (The chest X-ray thankfully was clear)!

I wait in my bed and rest up, wait, wait, wait, wait … and can wait no more, I speak to a nurse who tells me that there is no timing or porter or anything yet booked in for CT so I pull on my shoes and let the nurses I am going to find some fresh air and clear my brain 🧠

Now this first stay is particularly medically uneventful except for a key moment or two throughout that I will scoot to in a moment … but let’s start with how this Courtyard actually saved my life! Just having that place to go, it was everything!

The ward was once painted an old pale yellow, this ward is so old and tired the paint is falling away. It used to be a diabetics ward but is now is simply medical beds so literally everything and everybody could end up in a bed on this ward. As always in the NHS the staff are super human … the job and the ward though … holy guacamole Batman!!!

The ward

In the bay around me I have; Brenda* who has dementia, Brenda has hurt her knee and shoulder in a fall, she cries out in pain, really, really cries, she climbs out of bed regularly day and night, she should be supported moving around as she is not steady on the feet and there are signs around her to say call for help if she does try to go wellies. My ‘issue’ with Brenda is how she looks straight at me square in the eyes and does not drop her gaze, with this look that just says ‘Help Me’. I can’t handle this pressure, every look felt like more and more pressure, it is in my nature to help, how can you not but I am running on empty myself and cannot help myself. I am in pain both physically and emotionally – I have to turn away. 😢

Next to me is Doreen*, not sure what her deal is really. There is some diabetes issues that the nurses are taking seriously, high sugar levels etc but Doreen has a stash of hidden sweets 🍫 🍬 and is leading a merry song on some of this. She is laid completely flat and constantly asks ‘What’s that noise?’, ‘Who walked past?’, ‘Is Brenda still there?’ and expects me to be her eyes and to hands to pass her things all the time … I cannot be this person for you Doreen, I am sorry but I am empty. I do some but other times I have to just balance my head phones in my ears and pretend not to hear 🙈

And number 3, opposite me diagonally is Jane* (plus me makes 4 in the bay.)

Jane I really just could not. Jane had end stages Pancreatic cancer and had already been in for 2 weeks trying to get her blood sugars controlled enough for her to just go home and do her thing. Jane alternated between good days where she would be out sitting in her chair, smiling, chatting eating anything and everything that got too close, to the worst days where she would not open her eyes for the whole day, just cry to herself in and out of sleep in all of her pain. Jane has a lovely husband, daughter and son in law who would alternate with her throughout visiting hours during the day, 1 visitor per bed was the rule of the moment and side rooms for infection only.

Some days if I had no visitor at the time, Jane’s daughter would come and sit with me for the 15 minutes of visitor overlap and talk across the room to her mum and guest. With everything she had going on with her own mother, during the 9 days we were cell mates, Jane’s daughter would always be so concerned that I was ok too. They were all so lovely!

But Jane was very quickly slipping away. The fight to get her home became a fight for a hospice place, became a fight for carers for the weekend just to allow her final moments to not be in that pale yellow painted hospital ward. The other ladies in the bay were sleeping most of the time, visitors came and went during set times and all I could do was watch Jane lay there getting that little bit closer every day/second.

Everyday this broke me a little more. All I could think of was my Nan, Little Nanny Bournemouth down the road with Grandad Bournemouth and Solo and their little house by the sea … they are all gone now ❤️ The ward Nan was on was much nicer, the NHS was less broken, there was provision and process for my Nan to leave us peacefully in a side room to rejoin Grandad and Solo in whatever beautiful place you believe in.

It was difficult enough as my brain was forcing me to look around and hear and see the noises of the ward and put them into the context of my Nan passing on and filling in the gaps of non visiting hours etc. I did not like this at all and just cried. I cried for my Nan and for your Nan and for every Nan and every other family member that essentially missed out on the passing on that they deserved because of the crappy Tories underfunding, because of the Pandemic and because of a million reasons.

Now my Nan did have a ‘good passing’ as I remember it and for whatever that actually means, she was in a nice room, on a nice ward, surrounded by the love of her family and as she had been in and out of this ward for a while, the love of the nurses/HCA’s on the ward. So when she did let go, she did so in a way that worked for her. She would have always done it her way.

*names changed of course but all these ladies were my jail mates on the Medical Ward. Jane was discharged on the Friday 17th June with the assumption she would not see the Monday … that was a few weeks ago now, but I do really hope for her and her family that she is no longer in any pain. 💔

Friday 10th June

A very poor night sleep, huge amounts of pain from myself and from the others on my bay so nobody really got much sleep. The nurses and the Health Care Assistants do so much to try and keep you comfortable but for me, nobody knows what is wrong. Yes I have an infection but what is this pain in my stomach and until you know what it is you cannot treat it!

Awaiting Doctor with hopefully more answers on when I can get the CT and then hopefully be treated as an outpatient and go home 🤞🤞🤞

Doctor confirms that my Haemoglobin levels are 78 … anything below 80 he recommends a blood transfusion … which adds a new question, where is my blood going? CT booked for 4pm … and I am weirdly excited. After weeks of not being listened to, this is finally being actively investigated and any answer is an answer. Any diagnosis can be treated/managed/handled/helped in some way at least 🤞

You have Crohn’s Disease and a Perforated Bowel

So it is now 5pm and back from CT and a new Dr to speak to. He is asking how my Crohn’s has been managed to this point … what Crohn’s? Are you telling me I have Crohn’s? Is that finally my answer and we can all go home and I will stop eating X or whatever it takes to get on top of this?

Dr skims notes again and with a deep breath sits on my bed before talking me through my CT … I have an angry 20cm section of bowel that will at some point need to be removed, this bit of bowel has perforated and is leaking into my stomach – this is where the infections have been coming from.

Yes in all likeliness it is Crohn’s Disease but to truly diagnose that will take biopsies and other invasive procedures that we are likely heading to naturally.

But for now, the number 1 aim is to get rid of the infection, my body is temporarily sealing the bowel as bodies are just smart like that, IV Antibiotics are started to kick the infections arse and then when that is all set, they will send me home with steroids and make me and my bowels strong, then come back in 6 weeks for for a laparoscopic resection (chop out nasty bowel piece) and then start real groundbreaking treatment for Crohn’s … also the IBD nurse will be around and talk you through everything.

Simple enough, hey?

Lots of days that look and sound the same …

The days drag on and on … the infection is not coming down, my temperature is through the roof without old trusty paracetamol keeping it at bay, the Sepsis protocol is busted out and I am now on multiple different antibiotics and paracetamol infusions and fluids and transfusions to try and get this infection in line.

As long as I have an infection, I have a bed on the Medical Ward and I need my bed, I need sleep, I need to see my dog, I need to go home!

Plus this ward was never set up for a heatwave!! ☀️

The cycle continues, on and on, each morning someone takes my bloods, Dr appears an hour or so after and tells me my infection markers have either not changed or INCREASED (WTF!) We change antibiotics again and on we roll.

I feel my Mental Health suffers every day. This ward is just feeding my anxiety, every noise, every beep, every time someone is screaming in pain … and then the nighttime!

There is a fellow on the ward with Covid … Jane cannot afford to get sick, none of us can but she needs to get out and get home!!! So Covid Carl as I call him, is in a private room, he is to go in and shut the door. Need anything, press the buzzer and staff can gown up and go into the room and assist.

Nope.

Up and down the ward he walks all day, sometimes in a mask, sometimes not. The nurses and HCA’s do their best to get him back to his gold dust of a private room but pace up and down he must. Stopping at odd bays as he passes. Brenda tries to wave him in to our bay each time and they just look at each other for a while before one of the HCA’s encourage him back to bed.

Every so often the official Sister of the ward who sits in an office outside of the main ward will come in and roar at everyone and Covid Carl that he has – 3 options, 1) you go into that room yourself and stay there and we will continue to treat you. 2) I can post a security guard on your door to ensure you follow the rules 3) you can leave. Covid Carl would then slowly and sadly walk back to his room … for now.

And then there is Maggie … I have no idea what this sweet girls name is but in my mind she is Maggie a sweet young thing that really needs a cuddle, and she really needs her mum.

But little Maggie was there under the mental health act and was under supervision of a HCA at all times. Lovely as the HCA’s are, that little girl needed her mum.

Maggie scared me a lot. Just to look at her, she was broken which is how I felt and how she cried, she just openly cried like a small child and throughout my time on the Medical Ward, I lost count of how many times I must have looked the same, just sat alone and openly weeping over those 10 days … in reality nothing had happened to me yet and more than anything I was feeling relief that people were listening to me but little Maggie just broke my heart 💔. Little Maggie, She must have been mid 20’s, long beautiful brown hair to the middle of her back and when she was not crying, she was vacant, completely empty behind those big sad eyes.

One night, I was fast asleep (which was big news for me on this ward!) and I woke to the sound of Maggie by my right foot of my bed. Hysterically crying, along with this animalistic there is nothing left in the world howl of pain tied into it. I spoke quietly with her for a few minutes about nothing, I told her how tired I was and how much I wanted to cry too. I don’t know if she could hear me or even as much as listening but she did not cry as I spoke to her and in a moment or two the HCA caught up with her and softly took her back to her bed.

Maggie and Carl are just not unique … as humans of course they are but as patients on a Medical Ward that is just not set up to help them, they are not unique. I was told on a bad day they can have up to 1/3 of beds used for patients that they are just not suitable for. These young people should be in Mental Health Wards with Specialist Nurses and Health Care Assistant’s who have knowledge and understanding, processes and procedures to help. The Medical Ward and it’s noise and light and chaos for someone like me who suffers occasional anxiety was soul destroying … let alone Little Maggie 💔