The Longest Night…

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(How I felt on the first night after surgery…)

 
 
Stabbing, pulsating pain.
I open my eyes.
It takes me a moment to remember where I am and why. I press the PCA button in my hand and release the morphine. It feels cold as it travels through my wrist vein and up my arm. I retch a couple of times as it makes me feel woozy. Then it settles.
It’s the middle of the night. I must have only been asleep for an hour or so. 
My mouth is so intensely dry. I need to drink water. I adjust the bed, pull my table round with my right arm and pour myself some water. My whole arm shakes as I tip the jug. I become aware as I drink, of a huge mouth ulcer on the inside of my top lip. I must have bitten it under the anaesthetic. 
I can hear the young girl in the bed next to me whimpering and intermittently retching. She seems to have pressed the call button as the night nurse comes in and goes to her. 
‘I’m sorry I can’t give you anymore pain relief. Just keep pressing your PCA.’
She sounds genuinely sympathetic, but the young girl is now sobbing and crying out with pain.
‘Let me see if I can adjust your position. Perhaps that might help…’
I’m so dehydrated. I drink the whole jug of water and as the nurse walks past I ask her for some more.
She returns with a fresh jug and also a plastic cup containing a white fizzy drink.
‘It’s potassium. Your levels are a bit low. It’s not very nice but it’s important that you drink it all.’
She hands me the cup and I gulp the fizzy, salty liquid. It’s not as bad as I expect but I quickly drink a glass of water afterwards to take the bitterness away. 
‘Do you need the toilet?’
I shake my head.
‘Ok. Well, we’ll just keep an eye on that side of things. If you haven’t passed urine by about 5am we’ll need to think about a catheter. We’ve got to support your kidneys…’
Panic comes over me. I do not want a catheter. I immediately drink more water in the hope that it will wake my bladder up. 
My side is throbbing again. I can feel so many different kinds of pain in so many different places. There is the throbbing pain inside my chest which is deep and pulsating. The sharp pain round my top incision which is stinging and fiery. By far the worst though is the pain from the new chest drain wound. It’s both dull and achy and sharp and stabbing at the same time. It also spasms intermittently and feels, I imagine, like a kitchen knife in the chest.
I try to press my PCA again but realise I’m thirty seconds too early. I can only press it once every five minutes. 
It’s incredible how long five minutes can last.
The faceless man from behind the curtain has woken up now too. He starts shouting for the nurse. 
The same nurse who has been looking after me and the young girl rushes in with another male nurse. There is some kind of commotion and I hear the male nurse say he’s going to fetch the doctor. 
The faceless man is crying now and wailing incoherently. 
I feel afraid. 
I’m attached to so many bleeping machines. I have tubes travelling into my side, my left arm and wrist. There are suckers all over my chest. Drugs are coursing through my veins. I have two new swollen, bloody surgical wounds in my side and one has a chest drain sewn into it.
I am so utterly dependent on the medical staff for everything. I’m as helpless as a new born baby. 
Around me these two others are in a similar or possibly worse state than me. 
We are three grown up new born babies relying on the night nurse to care for us.
I’m so relived when the doctor comes in to attend to the faceless man.
Presently he stops screaming. Somehow between the three of them the doctor and two nurses have managed to calm him and ease his suffering.
I feel very emotional. Perhaps it’s all the drugs in my system and the intense pain or maybe it’s just the whole experience… The whole two and a half week nightmare. 
I start to well up.
I wonder how long I will feel this bad for? How long will everything hurt like this? Will I ever feel like my old self again?
It seems so surreal that as little as three weeks ago I was happily going about my daily life with no idea of what was about to happen inside my body.
There is a packet of wet wipes on my table. I take one from the packet and rub it roughly over my face. The coldness is soothing and I try to calm down. Crying hurts so much. I tell myself I must stop it.
I close my eyes for a while, but don’t sleep. 
This night seems to be lasting forever. Time has never moved so slowly. Each five minute gap in between morphine shots feels like an eternity…
‘Can I try you on the commode?’
I open my eyes. The nurse has wheeled a commode in next to my bed.
‘We really need to get those kidneys going…’
I try to lift myself up and realise I can’t. My arms and thighs begin to shake violently when I try to bear weight on them. I can’t manoeuvre my body up at all.
‘Here, let me help you…’
The nurse adjusts my bed to it’s lowest position, then helps me swing my legs round to the side. The commode is as close as it can possibly be next to the bed and somehow with the nurse’s help I manage to clamber onto it.
‘Ok I’ll leave you. Just do your best…’
The nurse pulls my curtain round then leaves me sitting on the commode.
I almost feel like laughing. The loss of dignity has reached new depths…
I try to urinate and encounter the most bizarre feeling. I feel my bladder is full. I feel I need to go but I cannot engage the right muscles. I cannot find the right command in my brain. It’s as though I’m numb from the waist down. It’s so strange. I suppose I’ve always assumed if a person lost control of their bladder muscles then they would immediately wet themselves but I seem to be having the opposite problem…
‘Any joy?’
I say unfortunately no…
‘Ok I’ll give you another five mins or so. If not we’ll need to go down the catheter route..’
The threat of the impending catheter makes me determined to urinate on my own no matter how long I have to sit on this commode.
Eventually after another few minutes or so, I feel a warm trickle of urine come out of my body. I’m so relived. I actually call out to the nurse to tell her….
I smile wryly to myself. I never knew urinating could feel like such a massive achievement…
The nurse takes the commode away and helps me back into bed. 
‘Make sure you drink plenty of water. Your urine was very dark. You need to cleanse your kidneys. They’re trying to rid your body of the anaesthetic…’
About half an hour later after drinking another jug of water I need to use the commode again and this time it comes slightly easier.
‘Well done. Much clearer. Those kidneys are doing a great job…’
The night nurse has been fantastic. What a job she has. She’s genuinely been one of the best members of staff I’ve met in my whole two and a half week stay so far…
It’s light now and the night nurse gives me and the young girl our bed baths, before helping us to sit in our chairs, ready for the doctors to come and assess us on their morning rounds.
The staff change over and a new nurse brings me a cup of tea and some Vaseline for my lips which have started to peel in the night.
For the first time I get a proper look at the girl next to me. She’s so thin and very small. She looks about eighteen. I ask her what’s she’s in for?
‘Lung resection and pleurectomy. I’ve had pneumonia twice and my lung has collapsed five times…’
I find out that the surgeon had tried to perform minimally invasive surgery on her but had been forced to convert to open surgery during the procedure. She’s been in hospital more than ten times with her lungs and she’s only twenty years old…
The morning doctors assess the faceless man first and decide he needs to stay in HDU for now. The young girl is also told she is not ready to be returned to the ward. I am expecting the same.
I feel horrendous. The worst I’ve ever felt in my life…
‘Vitals are good. No air leak at all. Oxygen levels are spot on…
I am amazed. 
‘All looking good. I think you’re ready to go back to the ward…’
I can’t quite believe it. 
Almost immediately after the doctors leave a porter arrives to transfer me back upstairs. 
‘That was quick dear!’ Gloria says as I’m wheeled back to my old bed.
‘We didn’t expect you until at least tomorrow…’
A nursing assistant who I’ve not met before comes in to attach my chest drain to the suction machine.
Unlike the Royal London, the suction machines at St Barts are not portable. They are attached to the wall and the one next to my bed is on the right hand side. The vacant bed opposite has one on the left. The same side as my drain. I ask politely if I could swap beds so I could be connected to the machine on the same side as the drain to give me a little more freedom of movement.
‘Look. We know what we are doing. This is the bed you’ve been allocated. I’ll just cross the tubes over your chest…’
I try to protest. I say surely it makes more sense to put me in the bed with the suction machine on the correct side. If the tubes are crossed over my chest that will really restrict my movement…
The nursing assistant is very terse with me…
‘Don’t argue. It will have been done like this for a reason…’
She proceeds to literally cross the two tubes over each other on my chest. I feel tearful as she marches of.
‘Well..’ says Edna. ‘Sorry to be blunt, but what a bitch!’
I laugh. Edna is normally so polite…
‘Call the nurse, they can’t have you like that for the next few days…’
The Sister comes to my rescue. She may be authoritative and cold but she is professional. 
‘No, no. This is not how they should be… Let me sort this…’
The Sister doesn’t move me to the other bed, but somehow manages to rearrange all the tubing so instead of it being crossed over my chest it’s all behind the bed and not interfering with my upper body. There is enough slack that I can comfortable sit in my chair and walk to the end of the bed.
Just as the Sister is leaving a sporty looking young female physiotherapist arrives to talk to me. 
‘I’m just here to help you with your shoulder and left arm… Can I see what movement you actually have…?’
The physio asks me to raise my arm above my head which I find I can do quite easily. Then she asks me to extend it out to the side.
This proves much more difficult…
‘So I want you to keep trying to extend it to the side like this as much as possible… What we don’t want to happen is that your arms freezes… Try to do this ten times in the morning and ten times at night… You can start now…’
I extend my arm to the side as far as I can ten times after she leaves, as instructed. Each time the chest drain wound spasms and throbs…
I’m exhausted. 
It’s only mid morning but I am so unbelievable tired. It’s not officially ‘rest’ period until one o’clock, but I climb back onto my bed and close my eyes anyway.
Every bit of me hurts. My muscles ache, my wounds throb and I still feel nauseous from the morphine. I’m just going to rest my eyes for a bit I think to myself. I’ll just close them for a minute….
Soon I am sleeping more deeply than I have for days. On top of my bed sheets in the middle of the morning….

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The Cut.

 

(Very groggy, in High Dependency on the day of my surgery)

 
I am awoken by a very young nurse. 
It’s early. Before morning Obs even. It’s still dark.
It must be about half past five, I think to myself as I try to shake the sleep from my head. I know the young nurse is here to prepare me for surgery. 
I’m not ready. 
I try to tell her I haven’t spoken to the surgeon, that I don’t feel confident going for surgery without talking to at least one person who will be in the operating theatre, but as I do so I am overcome with emotion. Without even realising I am soon sobbing on the poor nurse’s shoulder. 
‘I completely understand how you feel. I’ve had surgery myself and I wouldn’t have felt comfortable if I hadn’t spoken to the surgeon beforehand. I’ll go and see if I can find out what’s happening. It will be ok. We can’t do anything to you without your consent.’
She’s lovely. Really sympathetic and caring and I feel a bit guilty for emoting on her as she goes off to find out when the surgeon will be here.
‘Are you alright, dear?’
I hear Gloria’s voice from behind my curtain.
I say that I am. That its all been very stressful and it just got a bit much for a moment there.
‘Well, we’re rooting for you, dear.’
Gloria’s kind words make me feel tearful again and I’m still quietly crying when the Sister comes in to talk to me.
‘I’ve spoken to the surgical team. They will be on the ward at 7am and I’ve told them they must come to speak to you first. In the meantime, have your antiseptic shower, get yourself ready. They are keen to get you done today. I’m sure you’ll feel better once you’ve spoken to them.’
The Sister has a way of making me feel compelled to obey her. A bit like a school teacher or a police officer. I wipe my face then head to the bathroom, clutching my chest drain in one hand and the antiseptic wash in the other. 
I am only just out of the bathroom and still a bit wet, when the Registrar arrives with the surgery consent form.
He’s very blasé. He informs me they do at least one of these surgeries a week and they are really quite routine. He tells me matter of factly there is a 20% chance they will have to convert my minimally invasive surgery into open chest surgery but they will only do so in this in an emergency and it would be to save my life. He then tells me this particular surgery carries a 1% risk of death. 
I’m trying to keep up with what he’s saying but he is talking very quickly and my mind hasn’t really moved on from ‘1% risk of death’. I calculate to myself – one of these surgeries a week with a 1% risk of death… That’s at least one person every two years who doesn’t wake up again from this operation…
‘Do you have any questions?’
I haven’t heard anything he’s said after ‘risk of death’.
Feebly I ask him how many incisions there will be and where they will be?
‘That’s up to the surgeon.’
Suddenly I find my confidence. I tell him it’s important to me that I have an idea of where and how I’m to be cut and I ask him to fetch the surgeon. He looks a little surprised, but reluctantly agrees when I refuse to sign the consent form.
I sit on my bed and wait. 
I don’t know what I imagine the surgeon to be like. I’ve been waiting to meet him for so many days. He’s been spoken about with such reverence by the junior doctors. I’m half expecting a ‘Jesus’ like figure to float in and heal me just by laying his hands on me…
It’s a bit of a disappointment when a short, not very impressive, slightly flustered man in his early forties arrives and shakes hands with me. 
‘I understand you have some questions for me?’ Says the Mediocre Messiah. 
I ask how many incisions he is planning to make and where they will be?
‘Hopefully just the two, possibly three… Have you seen your CAT scan?’
I say I have but I can’t really remember it.
‘Come with me a moment.’
I lift up my chest drain and follow him to the nurse station where he opens up a laptop and retrieves images of my poor broken lung.
‘You can see here you have a bulla in right at the apex of your lung, up in your shoulder. It’s adhered to the chest wall and I don’t want to say for certain I can definitely reach that with two incisions, I might need a third…’
While he is speaking I remember Dr Drippy and Mr Member of Parliament talking about two bullae and a cyst. I ask where the second bulla is and what he thinks of the cyst?
‘They told you that? Based on this CAT scan?’
I nod.
‘Hmmm… There is no second bulla and there doesn’t appear to be a cyst. I’m not sure why they would have told you that… I’ll have a thorough look when we do the operation but based on these images you just have one fairly small bulla and that’s what’s causing your problem.’
We walk back to the ward and he pulls the curtain round.
‘The incisions will be here…’
He places his fingers on my side where my chest drain is already in place.
‘And here…’
Then moves them further down to about where my bra elastic usually sits.
‘And if we need a third it would either be under your breast or here…’
He touches my back just below my left shoulder blade.
I ask if he can use my existing chest drain wound as one of the incisions?
‘If it’s in the right place, perhaps. If not I’ll have to make a fresh one…’
I must look anxious because he hesitates then says ‘I’ll do my very best to keep the incisions to a minimum. I can’t promise anything but I will do my best.’
I do believe him.
He then explains the procedure to me. The bulla will be cut out and the lung stapled, then part of the pleura will be removed to cause inflammation and ‘stick’ my lung to my chest wall. 
I sign the consent form and the Mediocre Messiah shuffles off.
I do actually feel better. That’s all I wanted, just a few minutes with the man who’ll be wielding the knife. Now that I have spoken to him I feel much calmer.
When the porter arrives to take me down I’m a little taken a back that I’m to be transported on a flat bed. I haven’t been moved like that since that first night in the Royal London. I try to get a sense of where I am in the building as I’m wheeled through corridor after corridor, lights strobing above me.
Eventually I arrive at ‘Theatre Two’. 
I’m wheeled into a preparation room and a friendly scrubs nurse begins attaching wires and needles to me. She asks if I’m cold. I say I am and she lays a foil blanket over me which seems to be attached to a hair dryer as soon hot air is blasting through it and warming me up.
Two anaesthetists come in and introduce themselves to me. I can see a huge syringe full of what looks like clear jelly being removed from its packaging.
I hear the older anaesthetist telling the scrub nurse off for preparing me on the same trolley I came down on.
‘We’ll have to lift her once we’re in there.’
I see the clear jelly syringe again as its passed over my head.
I’m full of dread now. Deep unease. I’m waiting to be told to start counting down from ten, like they do in medical dramas on the telly. I’m still waiting when I suddenly feel really woozy….
Blackness.
I can hear voices. My eyes are closed but I can hear voices.
‘Ruth?’
I open my eyes. It’s very bright. Dazzling. I can see a female nurse standing over me…
Then it hits me.
Pain.
I try to breathe but it feels like there is a wall on my chest. I start to panic and try to clutch at my chest.
‘I know you must be in a lot of pain but we are giving you something for that right now. It will work very quickly, I promise.’
The nurse is smiling kindly and now I can see there are actually two of them.
I feel like I’m being crushed under a vice. 
Suddenly I can see the surgeon standing over me. He still has his scrubs on. He’s smiling.
‘It went very well. Only that one bulla. The lung came up straight away. Just the two incisions. Managed to hide the top one in your existing wound.’
I try to say thank you, as I speak I realise my mouth is unbelievably dry and my top lip is swollen.
I ask for water.
The recovery nurses help me sip some water and tell me I’m doing really well.
The porters arrive to take me to High Dependency. I look down as they hook my chest drain onto the side of my bed and I realise it’s a completely different drain. It’s much bigger than my old one. The tube is much fatter and its full of the same bloody mixture that filled Edna’s back on the ward. It’s also in a different place. It’s protruding from lower down my side. The original wound is now sealed with a bandage. Now that I’m aware of this new drain, it begins to intensely throb and spasm intermittently (almost as if my body is attempting to ‘close’ the hole) as the porters wheel me to High Dependency.
Once I’m in High Dependency I’m hooked up to a multitude of machines and monitors. I have suckers all over my chest and an oxygen tube up my nose. 
The male nurse is asks me if I’d like a sandwich and I actually start laughing. I’ve never felt so sick in my life! The idea of eating a sandwich seems ludicrous.
‘You’d be surprised’ he smiles ‘Sometimes people are desperate to eat. Now, your hooked up to a morphine PCA.’
He presses a controller with a button in the centre into my right hand.
‘You can’t overdose on this because it’s on a timer so you just hit the button whenever you feel you need pain relief, ok? Hit it now.’
I press the button. 
I feel a flood of wooziness then suddenly I begin to retch. The nurse passes me a sick bowl. I’m overcome with sickness. Every time I retch I feel like my insides are tearing. I’m scared my lung will collapse again.
‘I can give you something for the nausea. Don’t worry about your lung, it’s fixed in place now.’
I see him reach for another syringe of jelly and inject it into my cannula. 
After a few minutes the sickness has passed. 
A female nurse comes in with two of my friends. 
‘They’ve been waiting outside for you.’
I’m so happy to see them I start to cry but then immediately stop as even gentle tears produce a ripping pain in my chest.
They sit with me for two hours and although I’m in absolute agony I feel so much better that they are here. 
Once they have gone and I am alone I start to take in my surroundings. There are four beds in the unit. There is a very young girl next to me. She is crying and moaning and keeps vomiting. She looks almost childlike, her tiny frame hardly making an impression on the white sheets of her bed. She can’t be much more than twenty. 
There is a curtain partition separating us from the other side of the unit. I can’t see who is there but I can periodically hear a male voice crying out and begging for methadone. The male nurse who was so kind to me firmly repeats ‘You can’t have any methadone. You are on morphine. We don’t want to give you an overdose.’
Time seems to move incredibly slowly, but eventually the staff change over and it is night time. 
I’m absolutely exhausted, but I am in searing, pulsating pain and when I close my eyes I’m overwhelmed with nausea again. I can’t imagine how I’ll ever sleep. Machines are beeping and I can hear both the young girl and the faceless man behind the curtain, moaning and retching. I’m so nauseated. I’m so sore. Bits of me hurt that I didn’t even know existed. How can I sleep? How can I sleep?
I’m still asking myself that question as my eyes droop and my head feels fuzzy. 
I do finally fall sleep.

 

 

The Waiting Game…

 

(Lunches were no better at St Barts…)


I’m awake.
There is no wall clock in my new ward. I’m not sure of the time but it’s early.
There have been a lot of strange noises and commotions during the night that didn’t happen in my single room at The Royal London.
My curtain is pulled round so I can’t see anything much but I can hear a nurse’s voice and one of the elderly ladies vomiting.
I need the toilet but I don’t want to break the security of my closed curtain cocoon.
I lie awake and stare at the ceiling until it’s time for morning Obs.
The nursing assistant pulls my curtain round and I can see that both the lady next to me and the one opposite are already up and sitting in the chairs next to their beds.
I dutifully hold out my arm ready for the pressure cuff as I listen to the two ladies chat.
‘Did you sleep alright?’ Asks the lady next to me.
‘Not too bad’ replies the one opposite. ‘Just these antibiotics they’ve got me on. Make me so sick…’
‘Yes. I did hear you in the night. What a shame. Can’t you ask them to give you something?’
‘They did but it still comes on sometimes…’
Once the nursing assistant has finished taking my Obs she informs me that on this ward patients are expected to get up and sit in their chairs until lunchtime. Then there is a ‘rest period’ between one and three.
I ask her whether there is wifi. She informs me there is not. She tells me there is no TV on the ward either.
It’s just turned 7am.
I do as I’m told and sit in my chair, take my meds, eat my breakfast and contemplate what the next six hours until lunch are going to be like…
‘Are you alright, dear? How was your first night?’
I realise the lady next to me is speaking to me.
I tell her that I didn’t really sleep all that much because I’m not used to being on a ward.
‘Is that a Scottish accent I can hear?’
I nod my head.
‘Oh how lovely. I’ve got a lot of Scottish jumpers. Fair isle knit. And tweed skirts. What about Highland Dancing? Do you do that?’
I say no.
The lady opposite joins in. ‘Oh I used to do Highland Dancing. At school instead of gym class.’
‘Did you? How funny you did it down here but she didn’t do any and she’s Scottish.
‘Oh yes. That is funny isn’t it?
I learn that the lady opposite me is called Edna and the one next to me is Gloria. I ask my two ward mates what they do to occupy themselves since there is no wifi or TV?
‘I’ve got a book’ says Edna. ‘And I do dose of in my chair even though we’re not supposed to..’
‘Well, I do a spot of knitting’ Gloria says. ‘You look fairly mobile dear, there is a breakout room across the way. I think there is a TV in there. You can go and sit in there if you prefer.’
I say I’ll check it out.
I lift up my chest drain and walk out of the ward. Sure enough the ‘breakout’ room is directly opposite. It’s fairly grim. No windows. A few scattered chairs, a table and a very old looking TV. There is nobody else here so I sit down on one of the chairs and turn the TV on with the remote control.
I’m suddenly overwhelmed by the whole situation. Tears begin pouring down my cheeks and before I’ve even realised what’s happening I’m doubled over, wracking with sobs.
What new hell is this? I think to myself. It’s not even 9 o’clock.
I must be making a noise because the ward Sister has noticed and comes in and sits next to me.
She’s an intimidating woman. She’s matter of fact and not too sympathetic.
She tells me I will be having my operation tomorrow and that’s a good thing because my lung is broken and it needs to be fixed.
I tell her I am scared. I’ve never had an operation before and I’m frightened.
She says the surgeon will be coming in to speak to me today and he will reassure me.
I’m calming down. I can sense the ward Sister is not the kind of nurse who’s going to give me a hug and commiserate with me so I tell her I’m ok and I’m just going to watch TV for a bit. She says she will let me know when the surgeon is on his way and leaves me alone in the breakout room.

I spend the next couple of hours texting my friends and watching morning television.
I head back to the ward when lunch arrives.
‘Oh dear’ says Gloria. ‘What on earth is that?’
She’s referring to the ‘pie’ both she and Edna have been presented with. My own cheese and onion ‘pasty’ is not much better…
‘You know I think tomorrow I’m just going to ask for a sandwich’ says Edna. ‘They can’t mess up a sandwich can they?’
I say I wouldn’t bet on it and we have a bit of a laugh exchanging horrendous hospital food stories.
‘You’re very young to be in here, dear’ remarks Gloria. ‘What happened to you?’
I recount the story of my pneumothorax and both Edna and Gloria are very kind.
‘How terrible, dear. Must have been a dreadful shock’ sympathises Gloria.
I ask them if they have been here for a while?
‘Well, I’ve been in and out. They found a shadow on my lung before Christmas. It turned out to be cancerous so I’ve had a lobe removed. Now I’m stuck till the lung stops leaking. Bubbling everyday though…’ Says Edna referring to her chest drain, which unlike mine is filled with a bloody mixture.
‘I’m waiting for a triple bypass. Can’t go ahead till they’re happy with my blood pressure so I’m stuck too.’ Gloria tells me.
I am filled with sadness at the seriousness of their conditions. My pneumothorax is so terrible to me but in comparison to lung cancer and a triple heart bypass it starts to seem fairly minor…
Gloria takes a nap during our ‘rest period’ but Edna and I quietly chat until it’s time for visiting.
‘Do you have people coming?’
I say yes, a few friends and ask if she has anyone visiting?
‘Not today. My son’s very busy and my husband doesn’t keep too well. My daughter might visit later in the week…’
When my friends arrive I suggest we go through to the breakout room as it feels a bit insensitive to have loads of people crowded round my bed when I know Edna has no visitors.
We sit in there for several hours, playing cards messing around. My friends pop out at dinner time and bring me some nice M and S salads and snacks. I tell the man with the dinner trolley not to even plate mine up when he comes round. No burnt quiche and solid mash potatoes for me tonight!
My friends say they will hang on until I’ve spoken to the surgeon. I check with the Sister and she says he is definitely on his way. We continue to play cards….
Time is ticking on and it’s eight o’clock. The end of visiting. I’ve been told they are quite strict in St Barts about people over staying past visiting hours, but the surgeon hasn’t been yet….
I ask the sister if they can stay with me until he comes?
‘I’ll make an allowance since it’s the night before your surgery, but you’ll have to stay in the breakout room as people in your ward may want to sleep…’
We resume our card game until an anaesthetist asks to have a word with me.
‘I’ll be one of your anaesthetists tomorrow’ says the tall young man.
‘Have you ever had a general anaesthetic before?’
I reply I haven’t.
‘I would consider you to be very low risk. Your young and slim and have no underlying health issues other than your pneumothorax… You can eat normally until midnight, but then don’t eat or drink anything, even water, as your first on the morning list… The surgeon will be along soon I’m sure.’
Nine o’clock. Still no surgeon. I go and ask the Sister.
‘Actually I’m not sure what’s going on here. He should have been by now. Let me call him…’
Around half past nine the Sister returns.
‘The surgeon is not coming in today but he said he has asked the registrar to speak to you. We are just trying to track him down. This is very unusual. I would expect someone to come and speak to you tonight as your first on the list…’
Ten o’clock.
Half past ten.
My friends are getting very agitated on my behalf. One goes to speak to the sister again.
Eleven o’clock.
The Sister comes into the breakout room.
‘We can’t get hold of the registrar. His phone is switched off. No one is coming tonight. This is highly unusual. You are first in the list. They will come to speak to you tomorrow morning. Your friends can come back then if you’d like them to be there…’
I’m really confused and a bit distressed. How can I consent to surgery tomorrow when I have not even met a single doctor since I’ve been in St Barts?
‘It is very unusual. Usually the surgeon does meet all his patients the day before… You don’t have to consent to anything if you are not happy…’
My friends need to go or they’ll miss their last tube. They tell me to text them as soon as I know what’s going on. I feel very bereft once they do finally leave.
I try to sneak quietly back into the ward so as not to wake Edna and Gloria but they have both been waiting up for me…

 ‘Has he still not been dear?’ Gloria asks me as I sit on the bed.

I say no.
‘That’s terrible’ chimes in Edna. ‘We knew you were still waiting… We said we’d stay up to see if he came to see you.’
‘It’s shocking treatment dear’ says Gloria ‘You know you don’t have to consent to anything until they explain it to you properly!’
‘Came to see me a few times before this’ says Edna indicating towards her drain. ‘I can’t believe they let you hang on all day like that!’
I tell them I won’t consent to anything tomorrow morning unless the surgeon comes to talk to me first. I say I don’t care if he’s the best surgeon in the world, its my body and my lung and I want to know what’s he’s planning to do to it!
‘Quite right dear, you are the one who has to live with it, after all…’ Gloria agrees.
I assure Edna and Gloria it’s nothing personal but I’m going to pull the curtain round again tonight just for privacy. Just because I was so used to having my own room.
‘Of course dear. Whatever makes you most comfortable.’ says Gloria, kindly.
Once I’m safe in my curtain cocoon. I lie staring at the ceiling mulling over the day’s events in my head. I don’t feel ready for surgery at all. It seems surreal to me that I am supposed to be going first thing tomorrow. I don’t even know what they are planning to do to me. How can they expect me to be comfortable without even meeting a single doctor?
I make a decision. When I’m woken up to prepare for surgery in the morning I’m going to point blank refuse to go anywhere or do anything until I speak with the surgeon.
This decision seems to have a calming effect on me. Soon I am struggling to stay awake. I just keep reminding myself over and over in my head that they can’t operate without my consent until finally exhaustion takes hold and I drift off into a deep sleep…

St Barts

 

(My Easter Sunday chocolate with Rufus and Allan…)


 

I feel a hand on my shoulder and awake with a start.

‘Oh I’m so sorry! You looked so still. I just wanted to check you were alive! Sorry… You were so still… I did say your name a few times first!’

It takes me a moment to remember where I am as I look up at the timid young nursing assistant standing over me.

‘Can I do your Obs now?’

I present my arm ready for the pressure cuff…

Day thirteen.

Obs, Meds and breakfast pass in a sleepy blur and soon it’s mid morning. I haven’t even got out of bed yet. Wearily I throw the sheets back, swing my legs round to the left, lift my chest drain and stand up.

I walk to the window and look out at the ominously overcast sky above the city. It looks dark grey and angry. I decide it might be quite exciting watching a dramatic thunder storm up here. I start to imagine torrential rain bouncing off the pavements, loud thunder claps growling and fork lightning dancing off all the tall buildings surrounding the hospital. I can see the tiny worker bees on the ground running for cover as they are suddenly drenched. The roads turn quickly into rivers…

‘Good Morning’

I jump slightly, not realising there was anyone in the room and turn round. A young female doctor who I’ve not met before is standing next to my bed. 

‘I’ve just come to check in with you before your transfer to St Barts later’

I’m confused. I’m not going to St Barts until Tuesday. Today is Easter Sunday…

‘Has no one told you? The bed manager has finally admitted you. You’ll be going later today. We’ve ordered your transport. In the meantime, we’ve had a look at your X-ray this morning and the lung is still about 50% down so surgery is definitely still the correct option…’

I’m a little taken a back that I’m being moved today, on Easter Sunday, after Mr Member of Parliament and Dr Drippy were adamant I would not be going until Tuesday. My mum is coming down today, just for the day, she’s spent a lot of money on a flight. I really hope she will be allowed to travel with me to the new hospital…

Despite my shock at the transfer news, I do still remember to question why the doctor from yesterday told me my lung was ‘very nearly fully inflated’ if it is in fact still 50% down?

‘She told you that? Er… Well I’m not sure why she would have said that. It’s not the case. Your lung is still half collapsed… I’m really not sure why you have been told that. It’s not correct. I’ll ask for you but I’m pretty sure you shouldn’t have been told that… Er…. Anyway, so you can start to pack up your things.’

She looks around awkwardly.

‘You’ve been really lucky so far haven’t you? Having this big room to yourself for so long. You’ll probably be on a ward in St Barts, better get used to sharing!’

I attempt to smile. My face only half moves. I don’t feel very ‘lucky’. Thirteen days in hospital and counting with a collapsed lung feels pretty unlucky to me, private room or not.

Once she has gone, I wash myself and change my pyjamas. My sister left me a ‘honey moisturising face mask’ sachet, which I smother all over my cheeks, forehead and chin. I leave it to soak in as I sit in the chair next to my bed and read a magazine. For a while, sitting in the quiet, undisturbed, I feel almost normal.

Soon it’s time for lunch and it’s another bizarre combination. Chickpea curry, rice, a lot of peas and some tinned carrots. I wonder if the food at St Barts will be any better? I pick at the curry and eat some of the carrots but leave the rest. 

It’s not long after lunch that my mum and friend arrive. I feel a bit emotional hugging my mum. She presents me with a white chocolate Hello Kitty Easter egg – It is Easter Sunday after all – and a packet of milk chocolate mini eggs. I immediately begin demolishing the mini eggs as I tell them I am to be transferred later today. They help me to pack all my things into my rucksack and two shopping bags and we sit, ready to go at a moments notice…

There is a knock at the door and we all jump up, assuming it’s the porters arriving to take me to the ambulance. It’s not. It’s the smiley nurse from a few days ago.

‘I hear your finally moving today. Oh I’m so glad. I hope they get you fixed up soon so you can go home. Now I’ve been sent in here to give you a message… You asked why the doctor yesterday gave you the wrong information? Well the consultant told me to tell you that the doctor yesterday would have been correct in another situation if she was dealing with another patient, but in your case, with you, she wasn’t…. Does that make sense?’

The three of us look at the nurse and say nothing.

‘Oh it doesn’t, does it?’

She sits on the end of my bed.

‘You know they just send me in here to do their dirty work. The consultant should have come in here himself… She got it wrong but they don’t want to just say that so they send me in and give me something stupid to say instead…’

She looks slightly emotional and I offer her a mini egg and tell her it’s not her fault. She smiles and takes a handful…

‘It’s ridiculous isn’t it? If you were a different patient in a different situation she would have been correct! What a load of rubbish – she got it wrong!’

She is till sitting on the end of the bed laughing with us when two men in paramedic uniforms arrive with a wheelchair to transfer me to St Barts.

‘Good luck! I hope you get to go home soon!’

The nurse gives me a hug and leaves. I ask the two ambulance men if my mum and friend can come with me or if they will have to make their own way to St Barts? 

‘That’s fine love, we’ve plenty of room’ says the older man as he tucks a blanket round me on the wheelchair.

‘Can we just check your chest drain, before we set off?’

The younger man, crouches down and inspects my chest drain, making some notes on a form attached to the clip board in his hands.

‘Did they put that in Resus?’

I nod.

‘Without knocking you out?’

I nod again.

‘Must have been nasty.’

He sounds genuinely sympathetic.

‘Not very pleasant things, chest drains… Ok, all good to go…’

The younger man stands and walks ahead as the older man pushes me through the corridors towards the lift. I feel emotional. It’s finally happening. I’m finally going to St Barts… I thought this day might never come!

Once down at the ambulance my mum gets in the front with the younger man and my friend comes in the back with me and the older paramedic.

‘I’m just going to take your blood pressure before we leave…’

I hold my arm out like a robot… I wonder how many times I have had my blood pressure taken since my lung collapsed? Must be at least fifty…

The cuff tightens and tightens, then fails to take a reading. He tries again…

‘Your blood pressure is quite high. Are you nervous?’

I say I suppose I am a bit but usually my blood pressure is low. He tries one more time, gets a different result and records that one instead.

‘Alright mate, your good to go now’

The younger man starts the engine and we begin the journey to St Barts.

I can’t actually see anything sitting in the back. I think we are driving down Whitechapel road but I’m not sure, I’m just guessing the route in my head.

The older man asks me what I do, when I’m not in hospital with a pneumothorax and I tell him I am an actress.

‘An actress, eh? I’ve worked on a few films myself. As a medic. I was one of the medics on Skyfall. I won’t name names but some actors are right wimps. Especially the men. Calling for the medic when they just need a paracetamol for a headache… I’m sure your not like that though…’ 

Once we arrive at St Barts they put me into another wheelchair and push me into the George V building via the back entrance. 

It’s a shiny, new, modern building but completely deserted… It seems like we are the only people here as I am pushed through the ground floor towards the lift.

‘Easter holidays. It’s a skeleton crew…’ says the younger man.

Even most of the lights are off…

Once we do get to the Cardiothoracic ward there are two nursing assistants chatting at the Nurses Station. The first staff members we’ve seen. One comes over and introduces herself. The two paramedics wish me well and leave me in the nursing assistant’s care. She leads me, my mum and friend through into a ward with four beds. There are two elderly ladies in the beds closest to the window. The other two beds are empty.

The nursing assistant walks to the bed on our left as we enter the ward.

‘This will be your bed.’

She indicates towards a cupboard and fridge on the right.

‘Here you can store your things and any food or drink in the fridge…’

I zone out as she continues through her introduction. My eyes wander to the two other patients. The lady opposite on the left is sitting in a chair. She looks very poorly. I can see she has a chest drain in like me, only hers is full of blood. Deep, dark, crimson blood. The lady directly next to me is fully dressed and reading in her chair. She looks perfectly healthy. I wonder why she is here?

‘So I’ll leave you to get settled in.’

The nursing assistant leaves and I realise I haven’t really heard anything she’s said.

My mum and friend help me unpack and sort out my things. My mum leaves first. She has a plane to catch. I feel very emotional saying goodbye. I’m glad she was here for my move. I wish she could be here for the surgery too though. Both my mum and sister had hoped to be here for it when they booked their travel but with all the delays and uncertainty both their visits have come and gone and I’m still waiting…

My friend leaves soon after. Unlike The Royal London, St Barts are quite strict about visiting hours. Strictly no visitors after 8pm, I’m told.

Once I am alone I try to become accustomed to my new environment. There is no wifi or TV in the ward but there is a day room with a telly just opposite… I don’t have my own room but I can pull the curtain round for some privacy at least.

The two elderly ladies chat for a bit. Their conversation is inane and irritating. I feel very unkind for thinking that.

‘Am I dribbling?’ says the lady next to me as she drinks a cup of tea. Her voice reminds me of Terry Jones’ mother in Life of Brian. 

‘Since I had the mini stroke I can’t tell if I’m swallowing properly… I think I’m dribbling…’

‘No, no I don’t think your dribbling…. Mind you my eyes aren’t the best…’ The other lady says in an old fashioned cockney accent, a bit like Barbara Windsor’s.

‘I always think I’m dribbling! It’s terrible really when you can’t tell if your swallowing or not…’

‘Yes, yes it must be…’

Barbara and Terry continue in this vein until the nurse come in to do our Obs. 

I’ve said exactly nothing. I know I’m being mean. Really unfriendly. I think to myself – tomorrow. Tomorrow I’ll make an effort and try to get to know my ward mates. Tomorrow I’ll feel less unkind. Tonight I just want to keep myself to myself and go to sleep…

The nurse pulls the curtain round to do my blood thinning injection. I lift up my pyjama top. She pinches a lump of my already bruised flesh and plunges the needle in. I feel a tear roll down my cheek. 

‘Shall I pull the curtain back?’

I ask if she can leave it closed. 

Once she’s gone I try to close my eyes and get some sleep. I am completely exhausted but it takes me a while in this strange, unfamiliar environment before I’m able to relax. Soon, despite all my worries and fears, sleep comes over me and I eventually drift off…

Cardiac Arrest

 

(This really was as bad as it looks… And why so many peas?!)


Pain.

Sharp pain.

I’m ripped awake. 

For a moment I’ve forgotten where I am and what’s wrong with me…

My chest…

I lift my hand up and touch the chest tube wound. In an instant it all comes flooding back… But why is it so sore? What have I done? Is it twisted again?

I reach for the call button and press for the nurse.

I adjust the bed into a sitting position and look to see if I’ve pulled the stitches or twisted the tube? I can’t see anything different. My armpit wound seems the same. The crusty blood is dried and old, not fresh… The stitches look intact. 

Something isn’t right though. It really hurts. 

I look down at the drain. The water seal is bubbling. The fluid in the tube is still ‘swinging’ up and down as I breathe like it’s supposed to…

The pain is really intense now. I can’t work out where it’s radiating from? Is it the wound site or inside my chest? It seems to be coming from everywhere on my left side…

The male nurse on night shift rushes in.

‘Are you ok?’

He switches off the call button.

I explain my chest really hurts. That I was awoken by sudden pain…

He examines my armpit wound, the chest tube and drain. 

‘It all looks fine. Bubbling and swinging. The wound looks ok. No bleeding. I think it must be coming from inside your chest. I’ll call the doctor…’

He puts the call button into my hand.

‘If it gets worse while I’m gone press it again and keep pressing it until someone comes, ok?’

I nod.

He leaves to get the doctor. I am alone in my room, with the call button pressed into my right hand. I try to breathe through the pain. 

It’s 5am.

Almost time for morning ‘Obs’ I think to myself… Then it will be Meds, then breakfast…

Day twelve in hospital.

A young female doctor I’ve never met before comes in along with the male night shift nurse.
‘Your experiencing some chest pain?’

I nod.

She also examines, my wound and chest drain. She listens to my chest and feels my pulse.

‘Ok I’m fairly sure it’s not your heart, but I’m going to order an ECG anyway just to be on the safe side and an X-ray. I think what’s probably happened is the tube inside your chest has moved slightly and is either pressing on a nerve or has slipped and is too low down… The X-ray will show us. If so we’ll probably have to change it…’

Once the doctor leaves the nurse gives me my morning Meds. I take the two paracetamol and two codeine with a swig of water.

‘If the pain is still as intense in twenty minutes let me know and I’ll bring you some Oramorph too…’ He says on his way out.

The nursing assistant takes my ‘Obs’ as usual. She wheels the sphygmomanometer towards the door and almost crashes into the young nurse who is coming in with the echocardiogram machine. It takes them a both a moment to negotiate the space and manoeuvre around each other.

‘Can you lift your top for me please?’

I do so.

‘The pads will probably feel a bit cold..’

She begins to stick the small square electrode pads to various points on my chest and belly. She has difficulty sticking one of them to my upper chest and it keeps pealing off…

‘Do you have lotion or moisturiser on?’

I say no and try to make a joke that I must just be naturally greasy but she doesn’t understand me and looks stoney faced.

She tries again and eventually it stays put.

I can’t really feel anything as the machine takes it’s reading. 

‘All done.’

The nurse tears off the paper print of my results and then helps me remove the electrode pads.

When breakfast arrives the drugs have kicked in and the pain is much less intense. I manage to eat the banana and yoghurt but not the cereal. I make myself a lemon and ginger tea with the hot water I’m brought and wait for the porter to come to take me down to Imaging.

It’s only just 8am and I am already exhausted. 

I am much more comfortable in my chest now so I get out of bed and go to the window. I look out at the rainy city as usual but for some reason today my eyes are also drawn to the other hospital building slightly to the left of the one I’m in. I can see the backs of ‘Get Well’ cards pressed against the glass of windows like mine along with vases of daffodils and other flowers. I look down at the cards and daffodils on my own window ledge and wonder if anyone is looking at them now in the other building? From the outside we are just floors and floors of identical patients…

I lift up my chest drain and go to the bathroom. I brush my teeth and splash my face with water, as I do so I notice my left arm is a lot stiffer than it has been. It’s painful to lift my hand above shoulder height. I end up attempting (not very successfully) to apply facial wash to my cheeks with just my right hand. I end up soaking my pyjamas, getting soap in my hair and not really washing much of my face…

‘Hello?’

I hear the porter’s voice calling while I’m still in the bathroom. I shout that I’ll just be a minute and try to towel my pyjamas dry…

Once out of the toilet I carefully climb into the wheelchair and clasp the chest drain tightly between my feet. The porter puts a blanket over me and wheels me through the corridor towards the lift.

We stop at each one of the floors beneath Ward 13F on our way down to ground level. The doors open at Imaging and as the porter pushes me out of the lift I hear a Walkie Talkie crackle…

‘Cardiac Arrest in X-ray…’ 

The doctor, who had been standing behind me quietly, literally breaks into a full sprint out of the lift. Suddenly it seems as though half the hospital are pushing my wheelchair out of the way and running towards The X-ray department. 

I hear more Walkie Talkie’s crackling and two medical staff jog up behind us pushing what I think must be a ‘crash cart’… The porter stops at the side of the corridor and tucks my wheelchair in close to the wall to let them pass.

Once I’m parked up in X-ray it’s clear that the cardiac arrest has occurred in the actual room I’m due to go into for my Chest X-ray. 

X-ray room 2.

I sit a few meters away from the closed doors and can hear the charge of the defibrillator inside. I must have seen this scenario in a million films. My mind paints the image. The hands pressing the paddles down onto the bare chest. The body jerking with the shock. 

I am filled with sadness. Who is this poor person fighting for their life? 

Four more medical staff arrive and enter the room. Two people leave.

Then a long time of nothing.

I sit staring at the closed door of X-ray room 2. 

Whoever you are in there, fight for your life! Fight for it!

Eventually after what seems like an age, the doors open and a lot of staff slowly wheel a young man out on a trolley. He looks very beaten up, like he’s been in a car crash, he has visible head injuries. There is, what looks like an inflated plastic balloon over his mouth. A nurse is carefully squeezing it every few seconds presumably helping him to breathe.

I had expected them to wheel out a body bag. 

I had expected that poor man to be dead. I am choked with emotion as he is wheeled away still alive. I hear the doctors praising each other on a ‘good job’ as a young radiographer approaches me and wheels me into the same room where they brought the young man back from the brink of death just moments earlier.

The radiographers are still talking to each other about it as they position the X-ray machine at my chest height, then duck behind the glass.

‘And breathe in and hold…. And…. All done.’

I carefully get back into the wheelchair.

‘There nice and easy. No drama with you!’ The young radiographer says smiling and she wheels me back out.

By the time I am back in my room in Ward 13F I am completely drained and in pain again as my Meds are wearing off. 

Lunch is possibly the most depressing yet. A huge mound of peas, a scoop of mash and a burnt quiche square. It’s not actually edible. It looks like the plastic food nursery children play ‘house’ with… I’m not particularly hungry anyway. I gratefully take my Meds when they arrive and wait for my visitors. 

My friends arrive around two o’clock complete with some M and S lunch items and snacks. We sit for the next hour chatting, laughing and messing around. 

There is a knock on my door and the young female doctor from early this morning comes in. I momentarily wonder what kind of bizarre shift pattern would make her still on duty at three in the afternoon? Had she only just arrived when I saw her at 5am this morning then? 

‘Is it alright if I speak in front of your friends?’

I say it is.

‘Well the good news is your heart is fine. As we thought. Lung looks good too. Like it’s really coming up. I’d say only a day or so until it’s fully inflated’

I freeze… This goes against EVERYTHING I’ve been told over the last few days…

‘The chest drain looks fine too. The pain was probably it pressing on a nerve while you slept – so we’ll keep an eye on it but no need to do anything to it yet I don’t think’

I question her on what she means about my lung ‘looking good’?

‘Just a tiny tiny bit still to come up but really it’s nearly there. So it’s good news. In fact – place your hand on your chest and say ‘ninety nine’

I do so.

‘Can you feel the vibration?’

I’m not sure I can….

‘Well that’s your lung working again…’

I’m not convinced at all. I can’t feel anything. My left side feels totally flat when I say ‘ninety nine’…. Her opinion seems to be the complete opposite of every other doctor I’ve spoken to in this hospital… I am not heartened by what she has to say at all. Just dubious. 

Before she leaves, I do at least get permission for my friends to take me outside for some fresh air. 

‘As long as you don’t go far, you stay in the wheel chair and if anything happens you know to say ‘left side pneumothorax’ it should be fine….’

Just in case anyone else comes in and tells me I’m not allowed to go outside I immediately send my friends to get a wheel chair. 

They patiently wheel me down to ground floor and outside for a half circuit of the hospital. 

It’s cold and wet, but to finally have fresh air on my face after so many long days inside feels wonderful. Even as it begins to rain heavily just before they take me back inside, I appreciate every wet drop that lands on me. It’s just so refreshing after nearly two weeks of nothing but stale air conditioning… 

My friends stay with me until late in the evening. They are with me when the nurse comes to give me my night time Meds. Once she has left, my friends are observant enough to notice she has forgotten to give me my daily blood thinning injection. It’s still sitting in its plastic packet on the counter. They make me promise as they leave that I’ll ring the call button and remind her. I say I will do.

I don’t.

I just can’t face it. I hate it so much. I know I should call her but my poor tummy is covered in bruises and it’s just one night without it…

One night won’t do any harm, surely?

Only one night….

I tell myself I’ll walk around lots in my room tomorrow to make sure I don’t get a blood clot. I’ll spend all day circling my ankles and screwing up my toes. I’m still telling myself all this as I begin to drift off into a deep, exhausted sleep…

‘Hospital Time’

 

(Horrible omelette and vege but strangely addictive hash browns…)


Awake. 

Again.

It’s 4am…

The nights are getting longer and longer. This is the 10th one I’ve spent in The Royal London, Whitechapel. I feel like I’ve been here for several years…

I’m not sure whether to give in and sit up or close my eyes and try to get more sleep?

There is no point in closing my eyes. I am agitated. 

The Registrar said I would be going in the night. That he was sure I would be moved to St Barts some time during this never-ending darkness. 

‘Two, three, five in the morning, you will be going tonight….’ 

I remember his words….

I throw the covers off me, adjust my bed to sitting position and swing my legs round to the side. I pick up my chest drain and walk to the window.

The moon is full and bright. The deep blue of the night sky contrasts against the bright orange of the city lights. I can see, despite the hour, there are a few people wandering about outside… Is it a late night or an early morning for them? Are they on their way home or off to work? Are they as tired as I feel right now?

I’m already washed and in clean pyjamas by the time the nursing assistant arrives to do my ‘Obs’. 

I tell her this might be the last time she does them for me, while we wait for the pressure cuff to tighten. 

‘You are going home today?’

I explain that I’m not, but I am being moved to St Barts for surgery – possibly even later today…

‘So you are a step closer to going home then… You’ve been here a long time!’

She wheels the sphygmomanometer out. Meds and breakfast follow in quick succession. I realise as I look at the cardboard like cereal that what I’d really like is a slice of toast. A nice big bit of wholemeal bread, toasted, with some melted butter and maybe a touch of marmite… I’m unsure of exactly why but toast is not a breakfast option. Just plain bread. Apparently they used to make toast fresh on the ward but it was stopped for some kind of ‘health and safety reason’, according to the nurse. I leave the cereal bowl on the tray and place it on the counter near the door. I eat the banana and drink the orange juice in the little plastic carton. 

Still no porter. 

I am filled with unease. Why am I still here? Why has no one come to take me to St Barts yet? I start pacing around my room as vigorously as the chest drain will allow…

Not long after breakfast, the nurse comes back in. She looks apprehensive.

‘The consultant has asked me to come and speak to you. I don’t want you to panic….’

I immediately panic. What on earth is she going to say to me?

‘Your not on the list for today’s surgery. Actually there isn’t a list. It’s because it’s Good Friday. The consultant thought there would be a list for today but there’s not.’

I try to take in what she has just told me. I ask if I’m still being moved today?

‘Oh yeah! Your still going to St Barts. The surgeon’s been on the phone requesting your transfer. Your going today – later this afternoon I think. But you won’t have surgery till after the Easter weekend now… You can relax for a bit. No one’s going to move you till after lunch anyway…’

I realise that actually I am not at all surprised by this news. In fact in some ways I am relieved (I certainly didn’t like the idea of being rushed in an ambulance to St Barts ready to have surgery in a few hours…) but on the other hand the Easter weekend is four days long. I am not now going to have surgery before Tuesday. 

Tuesday!

Tuesday will be my fourteenth day in hospital. Two full weeks. Days and nights take forever in here. The pain, the boredom and the lack of privacy. There is ‘real’ time and ‘hospital’ time. How much more ‘hospital’ time until I can finally go home?

I text my sister and let her know there will be no surgery today and that I will still be here at the Royal London for the start of visiting at least…

I hear voices outside my door and the dithery Registrar asks from behind the curtain if he can come in.

‘I just wanted to ask if it would be alright if I brought some students in to do a little bit of teaching?’

I remind him that yesterday he said if I was still here he would look at my CAT scan and talk me through it.

‘Ah. Yes. I did say that. In an ideal world of course I would do that but I haven’t actually had time to look at it yet… You weren’t supposed to be here after all!’ He says with a smile.

I feel blood rush to my cheeks. Still being here is hardly my fault! 

I reply that ‘in an ideal world’ I’d give permission for him to bring his students in but until I get my CAT scan results I’m not going to allow it. 

The smile drops from his face.

‘Er…. Yes, yes of course. Right. Just give me a moment to get the laptop…’

After a couple of minutes he wheels in a laptop on a trolley and brings up on the screen several images of my lungs…

‘You can see how full and expanded your right lung is and how small your left lung looks in comparison…’

I can see. My left lung looks withered and tiny. It makes me feel sad looking at this broken part of me.

‘It looks to me like you have two bullae, which are the little air blisters we spoke to you about, in the apex of your lung. You also have some fluid, which is to be expected when a lung has been down as long as yours… And it looks like you have a fairly big cyst too…’

Nobody has mentioned the possibility of a cyst before. I ask him what that means?

‘People can have cysts all over there bodies. It looks a simple cyst… I wouldn’t worry about it. That not what’s causing the air leak… Unless, do you have cysts on your kidneys?’

I look at him confused. How could I possibly know if I had cysts on my kidneys? Nobody has ever scanned my kidneys…

‘There is a cystic condition can cause lung and kidney lesions… It only affects women and can sometimes first present with Spontaneous Pneumothorax. It’s very rare. You are in the right age bracket… I’ll order a blood test just to rule it out… Now can I bring my students in?’

I nod yes. I try to take in what has just happened as Dr Drippy mumbles on about my X-ray’s to his two female students. I was expecting to have lung bullae. That’s the classic cause of Spontaneous Pneumothorax but I feel unsettled at the thought of this ‘cyst’ and the mysterious condition I’ll need to be tested for…

‘Ruth will be going to St Barts today so this is probably the last time we will see her…’

Dr Drippy suddenly extends his hand out for me to shake it. I snap back into the room. 

‘Good luck and goodbye – I mean this in the nicest possible way but I hope I never see you again’ 

Dr Drippy and his two students leave.

I’m going out of my mind with boredom by the time lunch arrives. It’s a rather sorry looking affair. I leave the rubbery omelette and the tinned diced vegetables but I find myself strangely enjoying the cheap hash browns. Sometimes pure stodgy potato carbs provide comfort in a way nothing else can!

It seems a long, tedious, wait between lunch and my visitors arriving although in reality it’s probably less than an hour.

I immediately apologise to my sister and friends as as they arrive because I’m acutely aware that at any point during their visit the porters could arrive to transfer me to St Barts…

We spend the next few hours chatting, laughing and playing games. Very quickly I’ve forgotten all about the move to St Barts. It’s only when dinner arrives I realise I start to wonder if the transfer is still happening? 

Soon I get my answer. The nurse from earlier comes in, looking nervous and (I’m sure I’m not imagining it) slightly tearful.

‘I’m so sorry. You’re not going now. I feel so bad I told you this morning you would be.’

I ask her if she knows why I’m not now being moved?

‘St Barts won’t admit you. They don’t have enough staff on over the bank holiday weekend. Not enough nurses. They won’t admit you until Tuesday now. I’m so sorry.’

Then I ask if I’m not being moved till Tuesday, does that mean surgery won’t now be until Wednesday or Thursday?

‘I don’t know I’m sorry. Probably not. I’m so sorry.’

She looks tearful again.

‘You know I feel like I’ve spent this whole shift giving people bad news…’

I say she shouldn’t feel bad as it’s not her fault and offer her a Lindt chocolate from the box one of my friends brought me.

‘Oh thanks. I’ll save this for when I finish! Now I’ll leave you to talk to your friends…’

Once she has left I feel myself welling up. This whole thing just seems to be turning into an unending nightmare. When will I get out of here? When can I rejoin society and become a normal person again?

My sister and friends comfort me as the tears roll down my cheeks. They remind me it’s only a few extra days and in the long run of my life it’s a very short space of time… 

I know they are right but it is incredible how ‘hospital time’ makes me feel. Every hour drags. Every day is both mind numbingly dull and completely exhausting at the same time. Every night is restless, long and lonely. Now I face another torturous weekend of nothingness while I wait to be transferred.

My sister and friends stay with me well past the end of visiting and are with me for the dreaded blood thinning injection. 

My sister is going home tomorrow and I get emotional again when it is time for her to leave. I had hoped she would be here when I had the surgery, but instead she is going home and I don’t even know when my operation will be…

When everyone has finally gone I am tired. I feel emotionally drained. I’ve spent the last few days waiting to be moved any second. Now at least I know I will not be woken at two o’clock or five o’clock to be transferred in the night. I’m going nowhere. Hopefully this means I can sleep…

I lie starring at the ceiling for a long time, endlessly repeating unanswerable questions in my mind. Why me? Why did this have to happen? Why did it have to coincide with the Easter Weekend? When will this all be over and when can I go home?

Eventually, even with all these thoughts floating around in my head, I begin to drift off. My mind wanders and I start to dream…

Polo Mint

 

(A get well message from my mum’s dogs…)


 

I am restless.

I don’t know when I will be moved to St Barts and it’s making me anxious.

I drift off again and dream it’s time for me to go now. I need to get my things! I have to sort my stuff… 

I wake up with a start, expecting a porter to be at the end of my bed ready for me to leave right away…

No one is there.

It’s 4:30am.

Everything in my room is quiet and still. I can feel my heart pounding in my chest.

I lie awake, staring at the ceiling, until the nursing assistant comes in to do my ‘Obs’. 

I make eye contact with her. I don’t need to be asked. I’m a seasoned expert…

Right arm up ready for the pressure cuff. She attaches it firmly round my bicep. Next, finger out for the blood oxygen counter clip. Attached. Then I tuck my hair neatly behind my ear, ready for the thermometer. Inserted. 

We wait.

The thermometer clicks and is removed. The pressure cuff tightens and tightens, then releases. The Velcro is pulled apart and my arm is released. Finally we both watch as the blood oxygen counter goes up and up. 78 – 82 – 89 – 96 – 97 – 99…. It settles on 99 and the nursing assistant records this on my chart then removes the clip from my finger.

She wheels the sphygmomanometer machine out. Neither of us said a word during the whole exchange.

I get up and go to the bathroom. It’s still close enough from my release from the suction machine to make using an actual toilet feel like unbridled luxury. I’d really like to have a shower but there has been some disagreement between the nursing staff about whether I should be showering at all while still attached to the chest drain. I settle for a wash in the sink instead. I scrub my face and brush my teeth. My hair feels greasy and is stuck to my forehead. I can see flakes of dandruff through it. I decide that rather than ask for help washing it from a nursing assistant, I’ll wait for my sister to arrive and ask her. In the meantime I scrape it into a pony tail to stop it falling into my face.

My morning Meds arrive and I knock the six pills back with water in one big gulp. I’m not sure if it’s a codeine or a paracetamol but one of them gets stuck on its way down and I burp up a bitter medicine taste into my mouth. It’s rancid and takes a long time to fade. Breakfast is soon here but I don’t want the sad looking cereal. I keep the banana and yoghurt for later and make a lemon and ginger tea with the mug of hot water I’m given. 

I stand up and look out the window. It’s much cloudier than it has been. I wonder how hot it is? It’s hard to judge the temperature from just looking. It could be muggy and warm, or bitterly cold. I’m too high up to to tell if the insect like people below are wearing coats or not.

It’s still very early. It will be a long time before any visitors arrive. I’m not sure how to entertain myself. I start to flick through the various magazines I’ve been brought. They tell me that Kate Middleton’s bump is growing and Clare Danes really fancies her husband. Then I learn that I really aught to grow my eyebrows in because they are too thin. There are various pictures from the 1990’s of Kate Moss, Gwen Stefani and Madonna with plucked thin arched eyebrows. Then next to them are current ones showing the same women sporting much bushier brows. Thick eyebrows ‘make you look younger and suit every face shape’ apparently…

My door opens and Mr Member of Parliament comes in. I quickly stuff Gwen Stefani’s eyebrows under a pile of other magazines on my bedside table.

Something unexpected happens.

‘How are you feeling today?’

I look up at him, shocked and completely lost for words.

Before I answer, he carefully sits down in my chair, obviously mindful of me chastising him yesterday for towering over me.

‘I appreciate how stressful this situation has been for you and I’m hoping your feeling a bit better today?’

I’m still stunned but I manage to respond that I’m feeling alright. Not in too much pain but obviously very bored and frustrated to be still stuck in hospital after ten days…

‘Well we are hoping to get you moved today. It’s going to have to be today really or tomorrow morning if you end up on the afternoon surgery list. In the meantime I’ve ordered your CAT Scan for later this morning.’

I ask him when they will know if I am on the morning list or afternoon list for surgery on Friday?

‘Should know today. My registrar will be here later. I’ll ask him to drop in and let you know. I can get him to look at the CAT Scan for you too.’ 

I ask him what kinds of things they are hoping to see on the CAT Scan?

‘These things sometimes show up blebs and bullae which are little air blisters on the lung which can burst and cause a pneumothorax. They are present in 80-90% of all lungs operated on for pneumothorax. Sometimes the CAT Scan shows up nothing at all, but it’s good for the surgeon to get a look at what he’s dealing with anyway… Now is there anything else you’d like to ask me today?’

I say no and Mr Member of Parliament leaves. 

I reflect on what has just happened. He seemed like a different doctor just now, polite and genuinely concerned… Perhaps my temper yesterday has yielded some results! I start to wonder what it would be like to meet Mr Member of Parliament, the T-1000 and some of the moodier nursing staff out in the Real World? Would they be as patronising and dismissive of me if I met them dressed in smart clothes and fully healthy? Doctor/Patient is a very unequal relationship. It’s too easy for medical staff to forget we have lives outside our current illnesses. I want to shout Mr Member of Parliament back in and tell him I haven’t always been pyjama clad and dependent!

I retrieve Gwen Stefani from my bedside table and continue to read about eyebrows…

Lunch and the porter arrive at the same time. I ask the nursing assistant if it is possible to keep the macaroni cheese warm until I come back from the CAT Scan? She informs me it is not, so I quickly eat a few mouthfuls. Tinned macaroni cheese tastes even worse when eaten in a hurry. I take the orange juice and yoghurt off the tray and put them in the fridge. There are several yoghurts and juices already in the tiny fridge, carefully stock piled from previous lunches and dinners earlier in the week. Momentarily it occurs to me I am like a squirrel hiding my hoard for winter…

The nursing assistant takes the lunch tray away and I climb into the wheelchair, positioning my chest drain between my feet ready for the journey to Imaging.

I’m taken to a different waiting area than the one I’ve been to for X-Rays. It’s much bigger, has its own reception and is bright white. It’s full of very sick looking people, laid out on portable beds, partitioned by curtains. The elderly lady directly in front of me looks very thin and is attached to a drip. Presently a doctor comes to speak to her and pulls the curtain right round for privacy. I hear him loudly discussing her liver biopsy and I wonder if he thinks that the flimsy curtain is somehow sound proof too? I’m sure the poor woman doesn’t want us all to hear her medical details…

‘Are you Ruth Tapp?’

I look up and see a young radiographer smiling at me.

I nod my head and she goes behind me, unlocks the wheelchair brake and pushes me towards the CAT Scan room. 

‘Have you had a CAT Scan before?’

I shake my head.

‘No problem, I’ll talk you through what to do’

I am wheeled into the Scanning Room and confronted with what looks like a giant, rotating, Polo Mint. There is a flat bed which stretches through the mint’s hole with several pillows scattered across it.

‘Can you get up ok?’

I nod my head and she asks me to position myself lying flat, feet facing the hole, with a pillow under my shoulders and neck. There is a buzzing noise and the bed moves like a conveyer belt positioning my chest directly under the top of the huge Mint.

A voice comes over loud speaker.

‘I’m going to give you some breathing instructions to follow’

The Polo Mint begins to whirr and rotate. Faster and faster…

‘Take a deep breath in and out. In and out. In. And hold…’

The noise and rotation reach a peak then begin to slow, then stop.

‘And breathe normally…’

The conveyer belt begins buzzing again and I am ejected from the mint with the hole…

I get into the wheelchair and the young radiographer takes me back to the waiting area. A porter arrives quickly and I am again taken up to Ward 13F.

I am not long back in my room when my sister and friend arrive. They have brought me some healthy salads from Tesco, some lip balm for my dry lips and a moisture mask for my flakey skin. My sister helps me wash my hair in the sink and I feel so much better. We sit chatting and for a few hours at least, I feel relatively normal. 

No sign of my hospital transfer yet. I’m starting to doubt it’s going to happen. Surely surgery tomorrow is off the cards now?

Dinner arrives and it’s a rather bizarre combination of vegetable lasagne with mashed potato so my sister and friend go out in search of a pizza place recommended to them by the Nurse on duty.

While they are gone the Registrar bumbles in. He tells me in a round about way he has not had a chance to look at my CAT Scan yet but will do tomorrow morning – if I am still here. Then he explains I won’t be as he is expecting I will be moved at some point tonight.

‘It could be 2, 3, 5 in the morning, but you will be going tonight, I’m sure.’

He’s none the wiser as to where I am on tomorrow’s surgery list though, but it can’t be the morning I think to myself – nobody has told me to stop eating tonight for a start…?

When my sister and friend return with pizza I tell them I should be transferred some time during the night and that when they come to see me tomorrow it will most likely be in a different hospital. I may even have had the surgery I say, not really believing myself.

They stay with me way past visiting hours. The nurse comes in to give me my night time Meds but doesn’t say anything about my visitors still being with me. It’s good to have them there for the blood thinning injection. I get them to distract me and tell me jokes as the needle goes in. I focus on their conversation as it stings… My stomach is riddled with five pence piece sized bruises. Some are purple, some blue and some almost black in colour now.

Eventually my sister and friend leave and I realise I’m back in the same position as I was this morning. Lying in bed, alone, feeling anxious about when exactly this move to St Barts will happen. I have to be prepared it could be at any point during the night.

I try to tell myself I can’t control when it will happen so there is no point worrying about it, but it’s so hard to stop my mind racing. What will St Barts be like? Will I be on a ward rather than have my own room? Will the other patients be nice? If I fall asleep now will I just be woken up again in half an hour and told it’s time leave? And the most overriding thought of all – Surely I cannot now be having surgery tomorrow with this little preparation?

I lie starring at the ceiling for what seems like an age, until I eventually begin to tire. I start to fret a bit less. My mind is drifting and I without realising it’s even happening I fall into a deep, exhausted sleep. 

 

In Defence of the NHS…

 

(The various medications I was discharged with – all of which cost me £0.00)


It has come to my attention that my blog posts so far could be misconstrued as ‘anti NHS’. 

That in detailing my nightmarish three week hospital stay I am somehow attempting to provide evidence of why a government run National Health Service is a fundamentally flawed concept. 

This couldn’t be further from the truth!

I am a passionate believer in the NHS, despite my recent negative experiences and in this blog I will attempt to set out why.

Firstly let me say that I believe a ‘bad’ medical experience could happen anywhere in the world and under any kind of healthcare system. I do not think poor practice is in anyway exclusive to the British NHS. The shoddy care I received was in the form of organisation/administration issues relating to my transfer between The Royal London and St Barts, staff shortage, resulting in ‘cover’ staff with no idea what was going on and arrogant doctors with poor people skills not communicating with me properly. However ANY ‘system’ be it public or private can end up badly run, short of money or short staffed. These things, more often than not, are caused by management decisions, regardless of whether that management is business or government led. In the end I got the correct surgery, performed by an excellent surgeon and while a private medical experience may have been more pleasant I am sure the surgical outcome would have been the same.

Unlike many other things in life, healthcare IS something we will all need. It’s a very rare (or non existent!) person who lives their whole life from birth to death without illness or accident and who passes quietly away in their own home without ever needing a doctor. Even if such a person were lucky enough to exist they would still have family, friends and loved ones around them who weren’t so fortunate. We are mortal beings. Not one of us are unaffected (directly and indirectly) by ill health at some stage in our short lives.

So, with this in mind, is the ability to access healthcare considered a basic human right?

Yes, it seems it so…

The UN Universal Declaration of Human Rights, Article 25, states: ‘Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services’. There is a certain ambiguity in this though; the right to medical care does not necessarily mean the right to FREE medical care.

Of course there is no such thing as free medical care. All medical treatment costs money and all medical staff need to be paid. The question then becomes how should the costs be met? Is it up to the individual himself to foot the bill or is it the responsibility of society as a whole? 

Nye Bevan, grandfather of the British NHS and Labour Health Secretary during the 1940s, sums up the argument for me in this quote: ‘No society can legitimately call itself civilised if a sick person is denied medical aid because of lack of means’ 

I believe the way we care for our most vulnerable citizens is one of the most important differences between a just and unjust society. I want to live in a country that takes responsibility for the disadvantaged and does not turn its back on the elderly, sick and disabled.

I’m proud that the founding principle of the British NHS is that it is ‘free at the point of need.’ 

In order to meet this requirement it is entirely paid for by taxation and National Insurance – from the information I was able to access on the Internet it seems currently about 4% of tax taken from an average wage is spent on Health. There are now some small costs – in England some prescriptions cost around £8 (though not in the other UK nations where they are universally free) and NHS dentistry (which was partially privatised under Margaret Thatcher’s government) usually incurs a fee, but essentially the NHS overall still remains a free service. 

I believe in its sixty seven year history, the British NHS has benefited this country immeasurably. From mass vaccination programmes, to cervical smear testing and the availability of the contraceptive pill, the Nation Health Service has prevented disease and suffering as well as treated the already sick and injured.

When I decided to write this article I posted various messages on social media asking for people’s personal thoughts and stories about the NHS. The general consensus from those who contacted me was that while there maybe issues in its current organisation or with individuals working within it, overall it is a fantastic and completely necessary institution that we in the U.K. are privileged to have and must fight to keep.

The main thing I believe the National Health Service has to its advantage is that is is ‘not for profit’. At the root of all private sector ‘competition’ is the drive to make money. Ultimately any private medical business has to make healthcare decisions based on both patient need AND financial gain in order to maintain its existence in a way that the public sector does not. 

In order to illustrate this point I’d like to use two examples of friends of mine, one here in the UK under the NHS and one in the U.S.A., where there they have a private medical system.

My UK based friend, Amy, a self employed woman in her early thirties, was struck down with a stomach condition in 2009. Over the next two years she required hospitalisation for some nine operations, all kinds of scans, treatments and consultant appointments until she was finally discharged in 2011. All this treatment was given free at the point of delivery by the NHS.

Amy says ‘There is no way I could have had THAT much treatment if I’d had to pay for it. Obviously I’m a freelancer so had no insurance or anything. The care I received was amazing really. Yes the length of time you have to wait for consultant appointments can be ridiculous and not all of the ward nurses are as good as each other BUT overall I feel very lucky to live in a country where you don’t have to be rich to be properly cared for…’

Contrast Amy’s story with the experience of my U.S. based friend, Rob. He and his wife were already paying $850 a month on general medical insurance when they decided they wanted to try for a second child. Under their insurance system they had to add a ‘maternity rider’ to their existing policy for another $150 per month in order to be covered.

Rob says ‘We looked into adding the maternity rider, but you can only add it during the one month adjustment period in November. This was in February. Then we come to find out that after the maternity rider is added, there is a six month waiting period before a pregnancy is actually covered. In essence the insurance company was dictating that we had to wait fifteen months before we could even start trying to get pregnant if we wanted coverage. So we decided that we’d absorb the costs and go ahead without maternity coverage. When Luke was born, we had spent $3000 in pre natal care. The birth itself cost $19,000 and postnatal care was an additional $5000. Luke is 4 now. We just finished paying off his birth. And we have a six figure annual income.’

It’s worth bearing in mind that under the U.S. System if even someone on a good income can end up in difficulty owing thousands of dollars, where does that leave the poor and disadvantaged? I certainly can’t imagine how I would have felt, if after all the stress and pain of my pneumothorax, I was then presented with a bill for thousands of pounds for the cost of my treatment. 

Presumably the Health Care insurance company that Rob uses in the U.S is a private company, with shareholders and is striving to make the biggest profit it legally can each year, as would be the case with a retail company or restaurant chain. In which case can it really be said that it has its clients health at the core of its practice? 

The NHS, despite its many problems, is a service in the same way as libraries and schools. There is no profit to be made from a person’s illness in our system and I believe this is the way it should stay. Our country is unequal enough as it is without imagining the two tier society that would emerge were the rich and privileged to have insurance granting them access to state of the art treatment while the poorest members of the community had to rely on charity or face massive debts every time they became ill.   

Thankfully the way our NHS is currently implemented there is not one person in this country who does not rely on it to some extent. Even if I was a billionaire and had the best insurance money could buy if I crashed my car in the UK tomorrow it would be an NHS paramedic who performed CPR on me and an NHS ambulance that would drive me to to an NHS A and E department. This means (hopefully) that everyone of us should have a vested interest in maintaining and supporting the NHS. 

History shows us that the dismantling of previously state owned services does not always go well. British Rail may have had its problems but at least they were clearly accountable under state owner ship. Now it’s difficult to know who or which company is at fault when things go wrong. Punctuality was supposed to be improved under privatisation but this has not been the case and as someone who travels regularly I can vouch for the vast disparity in fare prices in different parts of the country. 

Now while it maybe annoying if a train is delayed or a fare price inflated, it would be unthinkable if an appendectomy cost an individual £5,000 in Brighton but £2,000 in Glasgow because of a different service provider. I don’t think the public would accept this. 

In fact the NHS is consistently voted the most beloved institution in the UK. I think it’s incredibly unlikely any government could conceivably pass a bill announcing its privatisation in the next few years. What I think is more likely (and dangerous) is the dismantling of it piece by piece. We’ve already seen some non medical services such as laundry and catering outsourced to private companies. This is both insidious and under reported. It’s also possible that under ‘austerity’ as the NHS budget gets squeezed the public become so dissatisfied with the service, lawmakers can justify suggesting privatisation as a way of ‘solving’ the problem. I think we must be aware of and rally against any attempts to privatise the NHS via the back door. 

This is not to say the NHS is perfect the way it is and does not currently face a huge funding crisis. Jen, a Theatre Director friend of mine, who has had more than her fair share of hospital stays, summed it up perfectly, I think, when she said to me ‘The NHS is the victim of its own success – people live longer thanks to better medical care, long-term conditions can be managed for longer times, there are far more conditions that actually are treatable than when the NHS was founded… none of that is going to change, and treatments are going to continue to improve and be expensive……’

Interestingly everybody I spoke to said they would be willing to pay higher taxes if it meant a better funded and better run National Health Service, but throwing money at it alone is not the only answer. It’s clear there are deep flaws in the way things are currently run. 

Sarah is a thirty- five year old Consultant Anaesthetist working within the NHS, she described to me some of the problems she faces:

‘On a daily basis we are short staffed, badly. Perhaps not quite so bad in theatre because someone, probably a cocky surgeon (or anaesthetist!), would stamp his foot and refuse to work in an unsafe environment, but the wards are appalling and it shows. Never a nurse to find to ask about patients, get medicines prepared, feedback to post op or to look after a sick patient – they are run off their feet and massively understaffed.  ‘Sickies’ often get moved to high dependency when they could probably be managed in the ward, just because of staffing ratios (which is of course is better in HDU but should not be as bad as it is on the wards).’

This certainly seemed to be the case when I was a patient; many more ‘cover’ staff than permanent  ones, very few nurses per bed, some nursing staff so overworked they were almost in tears in front of me.  

Sarah explains ‘A lot of places have a restriction on employing permanent staff (nurses especially) so they function from a nurse bank. Historically, this was made up of staff who worked in the hospital anyway and were basically doing overtime. But various changes mean that some people (those with children, relatives to look after, often those from other countries) are permanent bank staff. Medicine needs continuity of care. It is so frustrating to turn up on a ward and ask a question about a patient, only to hear this is the nurse’s first day or she doesn’t usually work on this ward and doesn’t know.’

From what I’ve read in the last few days and from my own experience as a patient I’d say NHS managers have too much pressure on them to reach targets and stick to quotas rather than meeting the needs of patients at ward level. An example during my care was when I was still at The Royal London Hospital. My consultant told me that they could do nothing more for me there, I had to be transferred to the Chest ward at St Barts. Despite his request and that of the Surgeon at St Barts, management refused admit me on the basis of a nursing staff shortage over the bank holiday weekend. This was on the Thursday. Management initially said I couldn’t be moved till the Tuesday. The consultant and surgeon made repeated phone calls and even my ward Sister tried phoning the Sister at St Barts (who she was friends with) to see if anything could be done. I really got the impression the medical staff were fighting to get me moved. Eventually someone relented and I was moved on Easter Sunday.  

I have no doubt that being a nurse or doctor in a modern hospital is stressful and emotionally draining enough without having to battle management at every corner too. My conversation with Sarah reminds me that the vast majority of doctors and nurses do go into the profession because they care about people and want to make a difference. Perhaps sometimes that gets lost a bit somewhere a long the way but there must be moments when even the toughest medical professional is affected by what they have to deal with…

‘Holding someone’s hand and telling them you will take good care of them as you put them off to sleep, knowing fairly well that they probably won’t ever wake up again (not due to my shoddy anaesthetic!) is something that sends a chill down my spine every time. And I have done that. Lots.’ Sarah tells me.

So despite the issues she faces on a daily basis does she still believe in the NHS?

‘If you are sick, no matter who you are, you should be able to turn up at a hospital and be treated, with the best medicine, doctors, nurses and ancillary staff. You shouldn’t have to foot a bill for this. You shouldn’t have to worry about whether you can afford to pay for your specialist diabetes appointment (which if badly controlled can lead to infections, gangrene and amputations and serious impact on function and quality of life) or whether it is actually a heart attack. I don’t know what the answer is. I’m not a health economist, but we need to keep the NHS…’

Whilst I feel incredibly unlucky to have had a pneumothorax at all (especially since it’s most common in tall, thin, male smokers – all of which I’m not!), I do feel I am fortunate that I live in a country with comprehensive, free, medical care. I cannot imagine the strain of living under the American system where the whole three week hospital stay could have left me in financial ruin worrying about my future.

However, worse even than that, I wonder what would have become of me if I had been somewhere like Sierra Leone or The Democratic Republic of Congo? I probably wouldn’t be writing blogs while recovering from surgery that’s for sure…

There are many many countries in the developing world where the population have barely any access to medical care at all. Women give birth on a daily basis with no midwife care, many die in the process. Children are born with HIV and receive no treatment. Diseases like malaria and even simple diarrhoea end lives and destroy communities. 

We are so privileged in the UK to have The National Health Service. We grumble about it and we rightly point out its faults and debate ways to improve it, BUT we must never lose sight of how important it is. How many of us wouldn’t be here without it? How many of us were Caesarian births, or had our appendixes out, or have diabetes? 

Nye Bevan, Clement Attlee and that post war Labour administration gifted us one of the most comprehensive National Health Services in the world. In these times of austerity and uncertainty we must not forget what we owe to those who fought to give us the NHS. We must preserve it ‘free at the point of need’ for all the generations to come…

‘Where’s Stanley?’

(My cat Barbara’s get well message to me…)

I feel a cold hand shake my shoulder…

‘I need you to get out of bed please…’

I open my eyes and look at the very young nursing assistant standing over me. She can’t be much older than twenty, I think to myself, groggily, as I try to wake up. 

‘I need you to get up please…’

There is a sense of urgency in her voice that makes me think something serious is about to happen. I move the bed into a sitting position, pull back the covers, swing my legs round to the left and manover myself out of bed. I pick up my chest drain and unravel the tubing so I can sit in the chair by the window. 

I glance up at the clock. It’s 5:30am.

The nursing assistant has no ‘obs’ machines with her to check my blood pressure or temperature. No morning ‘Meds’. She hasn’t brought my breakfast… 

She hurriedly starts stripping the bed. I wonder what she is doing?

‘I’m just stripping the bed so we can fit the incontinence pads’

I’m confused. Why at 5:30am has it suddenly become really important to fit my bed with incontinence pads?

‘For the diarrhoea…’

I am slightly shocked. Incredulously, I say that I don’t have diarrhoea…

‘You don’t have diarrhoea?’

I explain that while things are bad, they are not quite that bad. Yet anyway… 

I don’t know why but I can feel the corners of my mouth turning up slightly. I want to burst out laughing.

I tell her that I am fully able to use a comode and actually have been on laxatives to counteract the opposite problem caused by all the codeine I’ve been given…

She looks wide eyed and stunned.

‘Oh no, I’m so sorry! I must have got the wrong room. Sorry…’

She flaps like a small flightless bird as she remakes my bed. She says another quiet ‘Sorry’ as she dashes out.

I stay sitting, in silence, on the chair, thinking about what has just happened. I wonder who the actual patient with diarrhoea is and if the young nursing assistant got to them in time. I imagine them frantically ringing the bell, panicking that they are about to soil the bed…  Poor soul. Dignity really is left behind at the door in this place.

I’m too awake to go back to bed again so I open the curtains and wait for early morning observations. I hear the familiar rhythm of helicopter blades as the Air Ambulance once again takes off from the roof and I watch as London starts to wake up. There are so many people down there, scurrying around. I am so high up they seem like an army of ants, drones and workers, busying themselves, foraging through the city for the good of the colony…

Once Obs, Meds and breakfast are out of the way, I carefully lay out my tubing as far as it will stretch from the Suction Machine and wash myself in the sink. It doesn’t sound like much but it’s amazing how much better splashing my face with hot water and brushing my teeth make me feel. My skin is still peeling from my face in chunks though and even my scalp is flaking now. It can’t just be the oxygen mask, I think to myself, it must be the artificial hospital air too…

I decide to inspect my chest drain wound. I haven’t looked at it for a while. My left arm has definitely stiffened. It’s hard to lift it up high enough to have a look. I can still see the crusty blood from when it was first put in place, gathered round the outside of the tube as it leads into my chest cavity. I can also see where the stitch was pulled out during the ‘TwistGate’ incident a few days ago. There also seems to be some skin irritation underneath the transparent dressing. It looks a bit murky under there, red and inflamed, with lumps of black glue collecting at the edges. I’ve had the chest drain in for nine days now. I start to wonder if the dressing really aught to have been changed at least once by now? Something to ask the nurse.

I hear the door open and a large number of voices talking.

‘Hello, May I pull the curtain back?’

I recognise Mr Member of Parliament’s Received Pronunciation.

I sit back on top of the bed and call him in

He brings with him around six other doctors, who all have note pads and are busy chatting to each other. 

He approaches the bed on my left side and leans over me.

‘I believe my collegue prepared you yesterday for surgery?

I say not really. I start to say he didn’t really prepare my for anything but as I do so I get distracted by all the junior doctors around my bed, goggling at me and writing things in their folders. I trail off… I feel my cheeks flush red. I realise I am angry. 

‘Are you alright?’ Mr Member of Parliament asks me.

I don’t know where it comes from but I tell him that No, no I am not alright. I say that I think it is rude for all these people to pile round my bed, starring at me, but for me not to be told who they are and why they are here. I ask if everyone apart from the consultant could please leave?

‘Erm….  Yes, yes ok. Is it alright if my registrar stays?’

I nod my head.

Everybody else piles out.

‘So I believe my colleague prepared you for surgery when he came to see you yesterday?’

I’m fired up. I repeat that no, he did not prepare me for anything yesterday. All he did was say surgery was necessary. He gave me no other information at all. Then I ask both Mr Member of Parliament and his registrar to please sit down and stop towering over me because it’s very intimidating.

They drop like stones. The registrar into my chair and Mr Member of Parliament onto the end of my bed.

‘I am very sorry. Yes, the doctor who came to see you yesterday was only covering and perhaps didn’t have the answers to your questions. I can see that has frustrated you.’

I nod. I can feel my cheeks are now scarlet.

‘Let me see if I can fill in some gaps. As you know our medical interventions in the form of the chest drain and suction machine have failed to reinflate your lung. Your last X-ray showed you still have a very large pneumothorax. We have been in contact with the Surgeon at St Barts, he’s excellent by the way, and he wants to surgically fix your lung’

I ask if he knows what specific procedures the surgeon wants to carry out?

‘I’m not a surgeon so I can’t say. That will be up to him but he has requested we do a Cat Scan so I’m sure he’ll make those kind of decisions after he has a look at it…’

I accept he can’t answer the surgery question but can he at least tell me what will happen now?

‘Your on the list for Friday, so as soon as a bed becomes available we will transfer you to St Barts to the Cardiothorasic ward. I can’t tell you when it will be. It could be anytime in the next 48hours but you will be going there… You’ll be given notice of course when a bed becomes available.’

Then I ask that since it’s not working, do I have to stay attached to the Suction Machine?

‘No, no you don’t. I’ll detach you now…’

Mr Member of Parliament reaches behind my bed to the power socket and switches off the Suction Machine. The whirring noise that has been in my ears continuously for the last five days slows down then stops. My chest feels tight, painful and I suddenly feel a bit dizzy… He pulls the redundant suction tube from my chest drain and I am released.

‘You’ll probably feel a bit odd for the next few hours as the pressure inside your body adjusts…’

After the Two doctors leave I try to process the information I have been given. At some point in the next 48hours I will be transferred to St Barts by ambulance. Before then I will be given a Cat Scan of my chest here at The Royal London. Once I’m at St Barts I am due to have the operation sometime on Friday. It’s good to finally know what’s happening but I start to feel a deep sense of dread at the idea of having surgery in my chest…

Lunch arrives but I don’t feel very hungry. I play with the frozen vegetable mixture with my fork and count out exactly how many peas I have on my plate – twenty two. I know my friends will arrive soon so I’m hoping they will bring something a bit better for me to eat…

Presently a nurse and a porter come in and tell me I’m to be moved. 

I’m shocked that my move to St Barts is happening so quickly. I thought I had to have a Cat Scan here first. I’m slightly panicked. My friends are on their way here to The Royal London…

‘No! Oh no! Sorry to confuse you – You’re not going to St Barts just now – No. No we just need to move you to the room next door. To room two. We have a critical patient who needs this room as its in full view of the nurse’s station.’

I start to get up, so I can gather all my things…

‘No don’t get up, no need, stay there we will move everything…’

The nurse then begins to pick up all my belongings and pile them onto the bed with me. It feels bit dramatic as I’m wheeled out lying flat on the bed when I’m only moving to the next room. I’m not even attached to the Suction Machine anymore. I could easily have walked…

Room two is identical to room three but the other way round. It is like my first room in Ward 11F…

Once the nurse leaves me. I rearrange my stuff and put my Get Well cards up along the window ledge. I take full advantage of my new found, post suction, freedom and use the bathroom…

My friends are on their way and I text them to let them know I’m now in room two.

Whoever was in room two before me has not texted their friends to say they have been moved though as every hour for the next five or six hours various visitors open my door, walk in, look confused and ask ‘Where’s Stanley?’

I say I’m afraid I don’t know but it might be Stanley who was moved into my old room –  room three…

It’s almost time for my friends to leave when the door opens again. I expect it to be another stray visitor looking for Stanley.

It’s not.

It’s my sister.

She’s come down from Scotland to see me. She wanted it to be a surprise and it is, I feel myself welling up. Although it’s late tonight and she can’t stay very long she’ll be back tomorrow and is staying til Saturday so will be there when I wake up from surgery. 

I’m so happy to see her.

Once everyone has left and I am alone, I lie staring at the ceiling. My emotions are all in a muddle. I am so happy my sister will be here when I have the surgery. I’m so glad she came down, but I am starting to become really afraid of what the operation will involve, how painful it will be and how long it will take for me to recover.

While these thoughts are whirling around in my head the nurse comes in to give me my night time Meds and blood thinning injection. I lift up my pyjama top and look away as she plunges the needle into my belly. I feel a tear roll down my cheek. I hate that stupid injection so much!

Soon I am alone again and I realise I am really tired. At least things are happening now, I tell myself. Tomorrow I’ll have the Cat Scan, then I might even be moved straight after that. This time next week it will all be over. I’ll have had the surgery and maybe I’ll even have been discharged. I might be at home.

That thought comforts me.

Home. 

I think about Barbara, my cat, and imagine being in my own house with her on my lap purring. How soothing her purr is. I try to remember exactly how it sounds. 

I feel my eyelids drooping as I picture her little black and white face and soft fur. I start to drift into a deep, exhausted, sleep.

Dr Who?

 

 

(The London Air Ambulance as seen outside my window in Room 3, Ward 13F)

 
I’m on a stretcher. 

I’m moving.

The oxygen mask I sleep with is still over my face. I check with my left hand that my chest tube is still in place. I can feel it but where is the drain? I move my hand to my chest. There are suction pads and wires all over my left side… Am I attached to a heart monitor now too?
I can see the dawn sky directly above me. It’s deep blue and lovely. I can hear the voices of paramedics and radio noises around me. I feel wind blast my face and I hear the whirring of the Air Ambulance’s helicopter blades. I am on the roof.

Am I being transferred? Am I going to St Barts now? Why has nobody told me what’s going on?

Then a bright light, like a flood light, blinds me and I screw up my eyes. Even through my eyelids the light is penetrating, burning… It’s hurting my brain!

I realise the helicopter noise is receding. It’s getting quieter and quieter. More and more distant. Then I feel a familiar tugging at my arm…

In that instant I know exactly what’s happening. I know where I am.

Room 3, Ward 13F.

The nursing assistant is attaching the pressure cuff to my arm. The curtains are still drawn but I can hear that the Air Ambulance is actually outside my window. It’s loud enough to be heard even over the Suction Machine. I wonder if it’s racing off to some emergency or if it’s on it’s way back bringing some poor traffic accident victim to Resus? As the sound of the helicopter decreases I decide it must be leaving rather than arriving… 

Once the nursing assistant has taken all my observations I adjust the bed into a sitting position. I feel slightly nauseous and strange. I have that disturbed feeling of having been ripped from a particularly vivid dream.

Breakfast is brought in and the nurse opens the curtains when she brings in my morning Meds. After yesterday’s codeine trouble she asks me if I’ve managed to move my bowel? I answer yes and she says she’ll check it as she wheels out my comode. Lovely.

I can’t face the cereal but I wash the codeine, paracetamol and senna down with a banana and a yoghurt. I’ve learned that as suspicious and dubious as most of the meals in here are it’s always safe to eat the yoghurt… Infact I order a yoghurt with every meal now so I know that no matter what I’m presented with there will be at least one edible item on the tray.

It’s another beautiful day. I look at the sun kissed city. It’s been over a week now since I’ve been outside at all. I try to remember what fresh air on my face actually feels like. I try to imagine that feeling now…

I spread my tubing carefully out on the floor as far as it will stretch to reach the hand washing sink. I brush my teeth and wash my face. I’ve been sleeping every night with an oxygen mask on my face for over a week and it’s completely dried out my skin. I can literally peel huge chunks of dead skin off from around my mouth and cheeks. I feel like a snake. The skin underneath is pink and irritated. There isn’t enough moisturiser in the world to sort this face out, I think to myself. I’d need to soak my cheeks in Creme De La Mer for about two years to get them even close to normal!

I change my pyjamas and sit in the chair next to my bed. I pick up a gossip magazine that one of my friends brought me yesterday and begin to look at pictures of celebrities like Jennifer Anniston and Natalie Portman in beautiful dresses, looking perfect and extremely moisturised. I realise how much I miss wearing clothes. Not necessarily fancy designer ones (although that would be nice) any garment, other than bed wear, would do… Except perhaps a shell suit. I’d probably prefer to stay in my pyjamas than wear a shell suit…. Or a puff ball skirt… 

A puff ball skirt!

I’m sure I used to have a puff ball skirt at one stage when I was at primary school in the 1980s. Or was that Nicola Robertson?

The door opens and an unfamiliar voice shouts ‘hello’ from behind the curtain. 

I put well groomed Jennifer and Natalie down and call this stranger in.

He fails to introduce himself by name.

‘I don’t usually work at this hospital. I’m covering on this ward today for your consultant…’

My consultant. 

Im still not sure who that is. It says on the whiteboard behind my bed that my consultant is Dr White. I’ve never met anyone called Dr White. I thought Mr Member of Parliament was my consultant but I haven’t seen him for three days now… 

‘I did come to speak to you yesterday but you were asleep… Now I’ve had a look at your X-ray but it’s not shown much improvement I’m afraid. So really I’m here to prepare you for surgery.’

I ask what he means by not much improvement?

‘Well you still have a very large pneumothorax, infact I’d say slightly worse than the last X-ray. The lung is still about 50% down.’

‘The’ lung again. It’s MY lung, I think. I feel myself bristling…

‘Much better than when you first came in though of course. That first X-ray in A and E was pretty spectacular…!’

I’m not sure how I feel about my collapsed lung being described as ‘spectacular’…

Then I ask what he means by ‘prepare me for surgery’.

‘Yes. To let you know that is going to be surgery in this case’

I question him as to what kind of surgery?

‘Well I can’t really answer that, I’m not the surgeon’

I then ask when this surgery is likely to be?

‘I’m not sure. I don’t usually work at this hospital. I really have no idea…’

Then I seek clarification on what will happen now? Will I stay on suction? Come off suction since it’s not working? Will I be transferred to St Barts?

‘I’m not your regular consultant. I can’t answer these questions’

Then I joke that it’s not really ‘preparing’ me for surgery is it? Not if he can’t tell me what the surgery involves, when it’s likely to be and what will happen in the meantime. It’s not really ‘preparing’ me for anything…

He looks at me blankly.

‘You strike me as an emotional person. I’m not sure it would help you to know these details… You’d probably just worry about them. Now I can’t spend all my time here I have other patients to see. Is there anything else?’

I am dumbfounded. He has all the compassion of a T-1000. I’m waiting for him to turn into liquid metal, shape shift, then terminate me.

I say no and the T-1000 marches out.

I feel quite tearful and afraid. Despite what the Terminator said I think it would help me to know some of these details. If I’m to have surgery I would like to understand what will be done to my body. It is still MY lung no matter how many doctors decline to use a possessive pronoun. Will someone come tomorrow who can tell me more? Will somebody come tomorrow at all? How long am I to be left here, alone in this room, with no idea of what’s to happen to me? 

Lunch is brought in but I’m not hungry. I save the yoghurt and the orange juice to have later when I feel better. 

Some friends arrive and I pour my heart out to them. One has had surgery in the past and tries to reassure me that if it is necessary I will be ok in the end. That I don’t have to agree to anything being done to my body until someone has explained it to me properly. That somebody WILL have to explain things to me legally before any surgery is performed. 

They’ve brought me some chocolate and soon we are demolishing it and laughing and gossiping. It feels so good to have company. They stay much later than they are allowed and when they do finally leave I am worn out but much happier. 

It’s so frustrating still being attached to the Suction Machine as it continues to hoover out my chest. The Terminator said my X-ray yesterday was slightly worse than the one before I was connected to it. If it’s not working what’s the point? 

I ask the nurse, when she comes to give me my night time Meds, if she can detach me from it? She says she can’t. That decision has to come from a doctor and there isn’t one on the ward at the moment.

I take my Meds with water and lift up my pyjama top ready for the blood thinner. I have a five pence piece sized bruise on either side of my belly button from the previous two nights injections. I’ve got used to having blood taken from my arms and the backs of my hands, to having a cannula attached to me for days, to having a tube coming out of my chest attached to a Hoover sucking at my insides and yet I can’t imagine ever getting used to this! 

An injection in my stomach. 

I turn my head to the side so I can’t see the needle going into my flesh. It stings and stings.

Once the nurse has gone I lie on my bed staring at the ceiling. I really hope somebody comes and tells me more tomorrow. I realise I’m actually hoping Mr Member of Parliament comes back. For all his ineptitude he has at least met me a few times. Or if not him at least someone who is a permanent member of staff and not just ‘covering’

Soon I’m tired and my eyelids are getting heavy. I start to wonder if I’ll dream about the Air Ambulance again tonight?

Soon after I wonder that, I begin to drift into a deep sleep…