Rally the Troops

⚠️ Grab your beverage of choice (be it a cuppa or booze!) this is one long post! By long, I mean stories of hospital, pleural effusions, many thoracentesis (drains), a pericardial effusion, the life-threatening cardiac (or pericardial) tamponade, Deep Vein Thrombosis, sepsis, a chest infection, acute liver injury, acute kidney injury, hypoperfusion, cancer, bonkers hallucinations, blindness, a lot of love, tears and fluid.... Oh and of me pretty much dying ⚠️

I’m not really sure how to begin. I guess let’s just let it spill forth..... From my various previous blog posts you’ll know on 28th April, I had a drainage procedure where docs emptied 2,200ml of fluid from the pleura of my left lung side. The drain kept the pesky fluid at bay for a bit, enough time for me to have a great time in Bristol and meet some wonderful ladies. (Bristol Bitches I love yous)! Then I had Drain 2 which just felt all wrong.....

21st May - I wake up after my awful weekend and as agreed with Rob, I call Southwater Surgery for an emergency appointment.... 32 times. 32 bloody times. I eventually get through, I request an emergency appointment, "Miss, are you sure it's an emergency, we are very busy...." I finally get an appointment for about 11am.

The time gets closer, I am feeling more breathless, almost at collapse. We are 15 minutes from the appointment, do we call 999...? We decide against it, I do not want to go to Worthing hospital, (our closest A&E as the crow flies). All my info is at East Surrey, my entire oncology portfolio, the recent drain info.... it would not make sense. Decision made. We get to the docs, normally they are gentle, with a “hello, what’s wrong”, but this time when the GP approaches us in the waiting room, he takes us quite brusquely into his assessment room and asks us urgently to explain. We tell him the story  and he immediately ushers us to a side room, tells us he is going to call Tilgate Unit where the drains were done for more information and will let us know what he wants to happen next. There’s waiting, short waiting but this never happens. “Go to Kingsfold Unit Ambulatory Emergency Care and go quickly” we are told. “They will then be expecting you at Tilgate Ward”. We go home, pack a bag and drive there.

We arrive, I am struggling to walk at all without feeling like I cannot breathe. The staff take me through to Tilgate Ward and I am put on a bed in respiratory ward lower end (as in minor concern). They put me on oxygen, I immediately hate it, it won’t stay in my nose and when the machine is in I feel like it’s totally blocking me up anyway. Mum and Col appear, I feel shit but also like this is a bit overkill. I still have oxygen up my nose, the nurses monitor me taking my oxygen levels, pulse, heart rate and blood pressure.

The team do a bedside ultrasound which shows a bilateral pleural infusion. As in the fluid is back. But it's now on the right as well as the left. FML. Apparently there is more fluid on the left than the right. I am told they will try another drain tomorrow on the right side. Oh goodee! So the bastard painful popping procedure didn't get it all. Or did it not work. Or. Or. Or...  Read deeper. They will try again tomorrow. As in that's why the GP said pack a bag. Keep up Jojo, you're supposed to be clever! Aah, click. So I am here overnight, okay cool.

Not so cool as it turns out. I have a mentally sick lady opposite me, I know I had my mental issues last year, but this is quite different. She is being hideously racist, saying heinous things to the nurses. She is stripping and doing full on bendy naked yoga whilst wailing. The nurses try and dress her, she scratches out like a wild animal, clawing at anyone that comes near. It's impossible to know where to look. The nurses are trying their best to stop her. She is then nakedly sitting on people’s beds, I'm willing her to leave my bed alone. Mercifully she does so. Then she stands, shouts in a screaming high pitched chant type thing and does a micro shit on the floor. Wow.

22nd May - I have breakfast, and then vomit everywhere. I am unsure why, I feel quite well. I am told to put the horrible oxygen tube back up my nose. Rob arrives. My breathing feels horrendous, I keep coughing and my chest is tight. The docs attempt to do the drain. Number 3. There is more fluid that has to be got out. I’m far too sore, my body says no. The docs attempt about 8 (!) times to inject, to pierce, to prod to get the fluid out. It is absolute agony. They decide to call it a day thank god. Rob stays for a while, helps me calm down. I am sick again. Then Mish visits, she brings me loads of food and drink goodies as well as her portable DVD player and loads of DVDs.

Finally Mum and Col visit. I refuse to eat. I'm in so much pain. I have a jacket potato with cheese and baked beans. I really really don't want it. The pain is excruciating. Mum shovels as much of it in my mouth as she can. I'm given anti-sickness meds and I’m hooked to a 12-hour bag of IV fluids. Mum and Col depart. Another night with the lady opposite me, she sings show-tunes tonight. Mildly entertaining, I wonder if she takes requests 😋

23rd May - I have an awful sleep, I am in so much pain from where they tried the drain yesterday. I also keep being sick despite the anti-sickness pills. My stomach hurts so much.Whereas before I didn't feel unwell, now I feel atrocious. An ultrasound has shown I have to have a left side drain today, it doesn’t matter if it hurts, it has to happen. I’m taken to a side room, Mish arrives (Rob is already there), as I am wheeled into a side room. There are about 5 people around me all doing various jobs, it’s done under guided ultrasound. pop. There is screaming from me, by christ it hurts. It The team tell me that it is very difficult to get the drain in as there are lots of pockets of fluid rather than one large one. Also my lung is sticking to the lining. Ouchy. I’m told it will drain slowly, does it... Of course not! By the time I’m back at my bed, literally a minute scoot away, 800ml has poured out. The drain is clamped. Rob and I are told about a process called pleurodesis, which is an operation the docs want to look at eventually, but given the amount of fluid pockets on the left side, they are also unsure if it could even happen at the moment.

I'm hooked up to yet another 12-hour bag of IV fluids as I cannot keep any food or drink down. I do not like the fact that I cannot explain away a weird feeling I have. It bubbles under the surface, ironically bubbles pop. Louise and Caroline visit, it's nice to see them but I am lying on my bed the whole time, muted and tired. I am a bit stuck behind some sort of spidery web that I cannot break through. My eyes feel weird. Lou offers to visit me the next day and deep somewhere, something tells me to say no thank you. I really don't know why as normally I'd love to see you Lou! But an unnecessary excuse is made because something, somewhere shouts at me to make this choice....

I am put back on oxygen as my levels show at 88%, normal is 100% (obvious I guess...)

Mum and Colin visit, they help me try and eat but the pain and the nausea just won't allow it. The drain has finally slowed down and about 1,800ml has drained out.

24th May - I feel sick and dizzy. The pesky left pleura fluid will not behave, it keeps refilling, FFS. The acute respiratory docs are concerned about the right side too. FFS. Not only that, an ultrasound has shown potential fluid around the heart. Triple FFS. I am monitored throughout the day. Fluid on the heart is not good, it means your heart is almost wrapped up in a liquidy cocoon and cannot do its normal job. I know I have visits from friends and family throughout the day, but things begin to blur. We don’t know it now, no one did, but it’s the start. It feels like my inquisitive brain is shutting down. I want to ask questions but feel unable to access words.

My blood markers show that I have extremely raised inflammation markers of over 2,200 and normal is 30. Shit. I also have "deranged liver function with  high ALT and ALP". I am started bloody quickly on Amoxicillin and Metronizadole for sepsis. My blood gas also shows metabolic acidosis with high lactate of 6.7.

My kidneys are not working properly due to my lack of eating and drinking but also I have acute kidney injury. Mum and Col feed me, I manage about half my dinner.

More fluid has come out of the drain, it's about 2 litres now.

25th May - How do you begin process the fact you almost died.....

I am moved to the High Dependency Unit - Tilgate Annexe. Rob is at home, he is about to go to the dentist, his mobile rings, it's the hospital, he gets the call... Get here, get here safely, but get here quickly.

He gets to the hospital. I am still me, I am chatting away to everyone around me like everything is OK. However, it's almost like there are two of me and I am observing a play. This feels fecked up.

I am going into something called Hypoperfusion, which is decreased blood flow through my organs. I still have acute kidney injury and acute liver injury. They give me an NAC infusion to counteract the paracetamol in my blood, because now I have liver injury I cannot have paracetamol any longer. I am also started on antifungal drugs.

I see the me that sees Rob, and the people at my bedside but I can also see another me. The other me I can see and feel somewhere inside. This other me is fully aware yet unaware, awake yet asleep, knowing everything whilst knowing nothing. A weird, floating conscious yet unconscious "being", streaming around. Bits of this me feel like they're being tugged at by unknown forces. I don't like this. It sounds so over-dramatic to say it feels like bits of me are being split into sections, mental and physical. It's bizarre, I am almost watching this unfold like a drama series and I am the protagonist.

There are 5 doctors around my unit bed which has now been moved to the ward section which is highest rate of critical before the ultimate level of intensive care. There is a blockade in my head telling me it's not really happening. My oncologist is there, my SBCN is there. Rob is told everything that is happening is bloody unusual. No-one could have foreseen it all happening this way. I am  given an urgent echocardiogram which shows I have a fluid on my heart with right atrium and right ventricle diastolic collapse (blood going into the right ventricle).

Rob must have made some calls as at some point Mum and Col arrive ashen. My army marches forward. I recall seeing Mum and Colin's wan and terrified faces. They are all then told it’s fucking serious. My life balance is 50/50 at best. I apparently laugh and say I feel fine and I don’t know what the fuss is about! 

I am dying. 

But then somewhere in the shitstream my brain shouts stop, just stop. I look at Rob's grey, frightened face and I look at my Mum and I look to Colin. I see concern and I know, this is terrifyingly real. They have to drain the fluid that is going to suffocate my organs and they have to do it now. I feel myself beginning to go blind. Things are closing down. My heart can only pump a small amount, it cannot supply my body with what it needs.

I recall being rushed to the cath lab. I see Mish as I am being whizzed away, I remember smiling at her but I have a vague recollection of her looking like she is about to puke!

I am told afterwards I apparently talked coherently to the doctors and nurses during the periods I was able to. I ask questions, I want to know what’s going on. I’m on the brink of death yet I still want to know what the procedure I’m having done is! Typical nosey, inquisitive Jojo.

I recall being rolled onto a bed, multiple people around me, each partaking in critical role in what still seems like a big fuss to me! But then I recall needles. I recall a very blue room. I recall a hot searing pain. This must be the pericardiocentesis and they drain 800mls liquid. Through a foggy delerium, a very bright light suddenly becomes darkness. I apparently ask the time. 

Rally the troops. I am just a few rooms away. Rob, Mish, Mum and Colin are in the waiting room. People call my nearest and dearest, my Dad. He mobilises the Scottish contingent, Gillian, my Kitty, my Henry, Kitty's wonderful chauffeur boyf Mike whom I have not yet met. Top top lad to have helped out like that.

How those words are passed on, I don't know. But they get the sinister cogs in motion. They will arrive Saturday.

Rob calls Amy, I know she would have come anyway, however she could have done, she'd have made it work. It was just fortuitous that she had her phone with her (she was training not teaching so it was able to be answered) and it just happened to be bank holiday weekend and therefore half term the week after so it would not affect her job. Colin calls Alex, who mobilises Milly and Oscar.

Hideous call list done. The furthest distance troops are mobilised and speed towards me.

Apparently about an hour goes by, I cannot imagine what the waiting room is like. And suddenly I am out of the cath lab and moved to intensive care. I am whizzed by the waiting room window and I look and I stare. Somehow I can see through the actual blindness. Everyone in that room sees me and bursts into tears. I am awake, I have made it through the first step.

I have vague trace memories of what happened next but nothing concrete. They are whispering, floating, wispy fleeting ghosts. I don’t know if they will ever come back, and in truth do I need them to do so?? I imagine they will revisit me when I least expect it, but for now they can remain as ghosts. Buried ghosts of being a bit too close to the end. 

I am both awake and asleep. I  remember kisses, squeezes, tears, I can obviously guess who those were from, but if I told you that I knew then that would be untrue. I am still terrifyingly very blind and feeling totally incapable of making any neural pathways. Things are not connecting or joining. Words are stuck and I am being totally non-sensical. At some point Amy comes in, I am blind yet I know it's her. I lucidly thank her for driving in bank holiday traffic. I am a weird mix of being totally in the moment, all knowing and yet confused and questioning as feck. I know Alex, Milly and Oscar come in at some point. As does Mish. I presume the nurses begin to stagger the visits.

I am on a strong dose of Fentanyl and this apparently is what is accounting for my hallucinations and inability to join the dots. It is 100 times stronger than morphine! They are using it because:

Fentanyl has established medical uses in treating a variety of moderate-to-severe pain, including:

• Before or after major surgery
• Chronic pain requiring continuous opioid use
• Pain resulting from cancer and cancer treatment
• Following a heart attack or for patients with poor heart function source

At some point day becomes night and I start to hallucinate, I shout, I tell everyone this is a lie, that I am in a tv show. That they got me ha ha well done and that it was time for the Truman Show to stop. I begin to pull at my arms to rip things out. Where the feck did the cannula come from? And holy shit where did the catheter come from?! I cry. Big blobby sobs. This is not real. This is real. Rob’s ashen face comes into my head, the only thing telling me it’s actually true. It actually happened. Holy crap.

26th May - Dad, Gillian, Kitty, Henry and Mike arrive from Scotland at some point in the early hours.

It’s now Saturday afternoon. Rob arrives about 1pm and I apparently task Rob with getting in touch with people and being the main point of contact. I am obsessed with not being able to see. Rob puts a brief message on Facebook, I want people to know how I am, that I made it through. However we do not have all the same friends and this bizarrely becomes all-consuming for me for a while, we get a mini solution though and Rob makes a Facebook status with a public setting. My brain is apparently satisfied with this solution.I have vague memories again but flutters come back as I type this. The visitors come in Noah’s Ark stylée as far as I know. No overwhelming allowed.

I randomly am convinced my bed is my primary school?! Absolutely no idea where that came from!

I don’t remember eating or drinking a thing. Maybe I did, maybe I had fluids. Who knows. It may seem unimportant but I am finding being mentally "stuck" very hard. I apparently try and make conversation but I can access nothing easily, words are had. My vision is very slowly coming back, it is really blurry despite my glasses. I think parts of my organs are awakening. It’s odd, beyond odd. I am obviously on an enormous concoction of medications on top of the whole dying thing!

Rob apparently co-ordinates who goes into see me and when, as well as me requesting people like some kind of demanding diva - I have no recollection of this.

All my troops continue to visit, I apparently see Oscar and beam, I wish I could remember this!

Mish arrives, we apparently have various conversations, I don't remember this at all.

I summon Amy at some point and say something silly to her, she gives me a soft toy shark - I get why immediately! He is called Recky.

Recky, my tiburón de la suerte 🦈

Love you Amy 

I remember Dad visiting with G. They tell me a story about car insurance, I laugh even though I am unable to understand. I want my brain back! I think it must be undergoing an awakening trauma of a kind.

Once again day must become night, I am unsure who is around, I guess people have gone home to sleep.

That night I am convinced the hospital is a cheese factory and I am the Cheese Director?! The brain sure is a weird thing! What even is a Cheese Director? No clue but sounds like a fun job - haha!

The popping has bizarrely returned, it's so background but the noise is there. Perhaps before it was a breaking down and now it's fixing... .?

27th May - My heart drain and catheter are taken out. I am shown a breathing trainer I have to try and use. The objective is to get the yellow ball in the left tube in the middle (there's a smiley face you can't really see) and raise the white part on the right with as many mls as you can whilst holding it steady. I try and fail immediately. Great.

I am moved out of Intensive Care to the respiratory equivalent of HDU, Tilgate Annexe, where I was on Friday morning. I am on the opposite side to where I was on Friday, a lady called Karen is where I was, she tells me we have swapped places. It’s mercifully quieter than ICU, my vision is beginning to return and I am beginning to grab at memories, words, thoughts and processes. My loved ones visit. I’m sure there are tears from many. I cannot remember them but I can tell they were there. Trace memories of tear tracks on my face.

Kitty tells me at a later date I have a hilarious nonsensical conversation with her and Henry, partly about Henry's awesome upcoming trip. I am totally high on god knows what and recall nothing of this! I am also apparently eating a jacket potato, beans and cheese which I keep referring to as the #JacketOfDreams 😂

The furthest away troops plan their journeys home. I am in severe pain and still so confused but just so, so grateful to have such wonderful friends and family. They all made the effort. I am told I am daft and I laugh. I understand, I would have done the same in a (non-fluidy 😜) heartbeat! Those who live close obviously can stay, the others drift homeward bound.

That evening my friends do an Escape Room and have a curry, some normalcy for them amongst all that has happened. My heart sings for them all, I am beyond happy that they are happy.

Breathe.....