I look excited in this picture, the last supper, pre-surgery, pre-nephrectomy, supping on a beautiful glass of our ‘tage, the last for probably a very long time. Enjoying sweet moments of nostalgia with each delightful sip. Surgery was at last here.
I’m not moaning. I needed this surgery. I’ve begged and cried in the surgeons arms to take this thing out of me. I meant it. I did. I researched it. I worked in that speciality. I understand urology more than the average Joe. I was fully aware of what I was getting into. I needed this operation, to survive.
But nothing, I repeat, NOTHING, could ever have prepared me.
If you don’t like graphic details, or you are particularly queasy, please don’t read on.
Being strong is now the only choice I have, and I will do it. I am still the strong and vibrant young person I was, minus one rather dodgy kidney, but now with a future ahead of me without disease. I have learned just how sensitive I am and I know that I scare easy and I tend to panic. But hey, I am only human and I’m not limitless.
The limits that I have were exceeded Saturday 15th October, in a way that could never have been expected.
This account might help someone, it might terrify others embarking on a journey similar to mine, some may not give one solitary fuck, but I have to get this down on paper. I have to get it out of my head. Maybe the flashbacks will then dull. I can’t talk about it anymore. It renders me in full blown panic and anxiety attack mode to even mention the word “tube” out loud. The whole experience was too traumatic for me, the toughie, it completely and utterly blew me away.
So here goes ….
I arrived with a family member at our local hospital at 6:45am. Her intentions were good, driving me to hospital, inviting me to convalesce at hers after the operation. But she was unsympathetic, at times unkind and anything but compassionate. Her constant ‘ordering’ me and ‘telling’ me just how I would need to recover and what she thought I needed to do was now upsetting me, irritating me and scaring me. I longed for her to leave me in silence so I could gather my thoughts, think of how my Mother would have been with me at that moment and to daydream out of the window about other lifetimes. I longed for your hand holding mine telling me it would be okay. But I knew that wouldn’t happen.
They checked me in, all my bags tagged, like an airport, my belongings to be taken away while I was being operated on and I sat waiting until my number was up. The family member obviously sensed my increasing need for solace so she kissed me on the head and left. The truth was I needed the other part of me with me or no one at all. No one at all was just fine, I couldn’t expect you to be here, but it didn’t stop the longing in my tummy.
A guy opposite me was nervously chattering away to me. He was first up, the poor love. He was two years older than me and he had kidney cancer. I tried to calm him with gentle, calm and reassuring words. I’m not sure where I plucked them from if I’m honest, but I delivered them and I think he felt a little easier. He promised to pop by and see me once we reached the ward. Surgery to remove ones kidney was anything up to 8 hours. I wondered rather morbidly if I would see him again. A natural thought to have I guess when you are quite literally on a knife edge ?
I’d been a little unwell the night before, cold and shaky and it began to rear it’s head again. I guess it was probably anxiety based, but the gorgeous nurses wrapped me in blankets and brought me a heater. Unable to eat or drink there was nothing left to do but to doze of to sleep and so I did.
I was awoken an hour later by my team of surgeons and my anaesthetist. We signed endless consent forms and other blurb. They told me to change into my gown. I stripped out of my clothes and the surgeon drew on my stomach and my wrist – to ensure that they took the right kidney out apparently !
They called me for surgery at 11:30am.
I walked into theatre and the familiar clinical room and bed hit me full force. The room was full of surgeons in scrubs. I’d had several ops before, but all fairly minor and exploratory based, none so major, and certainly never to remove an organ from my body. I couldn’t control my trade mark nervous chattering teeth and the team in full scrubs reassured me. I kept asking “but what if I don’t wake up” …. over and over. They gave me some statistics and tried to calm me., it didn’t fucking work !
I was to have a full epidural (spinal block) to numb me from the waiste down and anaesthetic. I’d be away with the fairies for hours. I thought of you as they put the oxygen mask on, I thought happy thoughts as I counted back from 10, our field, our tree, favourite places, my hand in your pocket and I tried to ask for you …. then I was gone.
You never get those lost hours back. It’s always baffled me, but in my experience if you go to sleep thinking happy thoughts you are less likely to awaken screaming and crying. So that was my plan, days before I went in. I knew what I wanted to be thinking of and that was you.
I woke up. I knew exactly where I was. I felt heavy, not in pain, but very unwell. I couldn’t feel my body at all. I remember noticing that I was shaking uncontrollably and a familiar man was administering opiates into my vein. He smiled at me and I reached out to touch his arm but had no control of my flapping limb. He took my oxygen mask off and I remember asking him to stay with me as I was scared. He sat with me holding my hand until the shaking calmed. I felt odd, everything was far away but bright, voices were distorted, but then he asked me how my sausage dog Willow was, he had remembered me from my surgery in July. He woke me then and for some reason I had told him I had a sausage dog called Willow …which isn’t true at all and this time he’d remembered me, and I didn’t feel so alone.
I think I was there in recovery chatting random opiate induced babble for an hour in between drifting in and out of consciousness before eventually being transferred to the ward, with my own room by the nurses station. I’d been in surgery for around 6 hours and I vaguely remember the surgeon saying it went to plan and the “beast” was on its way to a lab for testing. The fear began when I realised the tubes were everywhere, I had a catheter bag draining urine from my bladder, tubes between my legs, a drain out of my main wound, oxygen in my nose, and cannulas into my hand and arm. I was scared to move or to touch my own skin – I didn’t know what had happened and I couldn’t move to look, nor did I want to. I felt the most vulnerable I had ever felt in my life. I wanted her or you. I needed someone that knew me and that I had full trust in to tell me it was all okay.
I remember asking the nurse to get my bag and take a picture of me.I had an obsession with capturing my journey so I could remember it. Even in that state I knew what I needed to do. I also knew I had an unpaid parking ticket in my bag that needed paid and told the nurse about that too! Morphine – the king of Truth drugs !
This picture doesn’t truly set the scene if I’m honest, everyone that visited day one and day 2 commented on my colour saying all things considered I looked relatively well, but inside let me tell you – I felt like I was dying.
My brother had been noted as my next of kin so he soon arrived with one of my best friends. I remember feeling embarrassed at how I must look, how I must smell, I could barely speak, and I felt sorry that my little brother that had only my sister and I in the way of family, was now having to see me like this. I remember not feeling “too” bad at this point. But I knew it would be relatively short lived. As soon as the anaesthetic and epidural wore off I’d hit the big wall of reality and I would be in a rotten state.
Within an hour of coming round they were trying to ram food down my throat and I actually asked them to check if I could have food as you are usually nil by mouth after a spinal block. They assured me that I could in fact eat. Having not eaten for days I rammed that marmite on toast into my face and inhaled it within seconds.
I started getting the odd symptom that something was awry and even whilst off of my face on that cocktail of drugs I remember thinking this doesn’t feel right. But I calmed myself by thinking that I’d had a lot more drugs than ever before in my life and so allayed that as the reason why I was so dehydrated, and why I was shaking all over and dripping in sweat, and why everything felt tingly and furry !
Still I attempted to text one or two key people, but it was very much like peeing in the wind, I couldn’t see and I had zero coordination or concentration …. the messages are an epic read !!!
Pain relief was on tap, as you’d expect following such major surgery, oramorph literally as often as I needed, and my god I was so terrified of it wearring off I kept topping it up. I began frantically itching all over by that evening, a symptom of high levels of that vile morphine and I began feeling horrid sensations in my stomach and panic attacks were bubbling under the skin.
I think I drifted in and out of sleep, but it wasn’t restful, at all, I was so terrified of moving due to the pain and all of the tubes my body had become rigid and I was anything but relaxed. My cousin and my friend Phil were first to visit on the Friday day. I felt like I’d brightened a little. I’d got the nurse to change me into my own nightshirt that I’d bought a size too big for comfort. To my horror I was bursting out of it, I couldn’t believe how much I had swelled and I was alarmed that I still had zero control or use over my legs or upper body and literally had to be moved by someone else and dressed by someone else. This wasn’t what I expected.
I remember starting to not want food and I began getting “rushing sensations”. The physio came to me and attempted to mobilise me, I think even he was shocked that I couldn’t even stand unassisted and I literally collapsed in his arms. He said he’d return Monday and shut my door. All of a sudden the warm furry feeling all over my body returned and I knew what was coming, and I knew it wasn’t going to be nice. Being sick is often scary and unpleasant enough, but when you have been cut across your middle any retching, coughing, sneezing etc is enough to rupture a new wound. I proceeded to projectile vomit, repeatedly, spraying the wall at the end of my bed and flooding the bed that I lay in, I couldn’t get breath between more and more of it coming, to even call out. My door was shut , and the physio had placed my emergency buzzer out of reach when he visited and tried to mobilise me earlier. You can not magne the pain, fear or anxiety. I couldn’t move at all. I began calling out and it had to be a good 5 minutes before someone heard my pathetic whimpers.
The nurse buzzed for “vomit back up” and as they tried to carry me carefully out of the bed drenched in my own sick I drowned her in the green stuff too. I did feel a sense of relief, but I knew then something wasn’t right, I couldn’t even hold my own head up.
They stripped me and washed me – naked, wires everywhere, sobbing in agony as each sob wretched at my wounds. I felt violated, alone, out of control and suddenly seriously unwell. The most hideous moment of my entire life.
The sickness eased and my closest friend arrived to see me. I have little memory of this visit but 6 days post surgery today she told me how alarmed she was when she came to see me. She said that I was scratching my skin frantically, a side effect from high doses of morphine, that I was drifting in and out of consciousness and my eyes were rolling back in my head and that I was viably rushing from the amount of morphine that I’d been on. The swelling in my stomach was horrendous, and extremely lopsided, suggesting a blockage of some kind. She talked to me and stroked my hair until I drifted off to sleep but she felt extremely worried.
The next day I was rougher than you can imagine. A friend visited for an hour or so, but I apparently asked her to leave – with that the sickness started again. I was administered anti sickness drugs which didn’t stall it.
Within minutes there must have been half a dozen Drs at my bed, now laid flat, I could sense the panic rising in the room. I was certain the horrendous vomiting had ruptured my wounds and I was by all counts screaming the ward down in pain. I was totally and utterly delirious by this point. The next thing I remember is voices asking me to swallow gently and them telling me to stay very still. They put an NG tube up my nose, and down my throat to aspirate the sick out of me, whilst they were doing this to me another team of doctors were tearing up my gown and administering local anaesthetic to reopen my wound, right there on my bed whilst I was awake. Apparently they were concerned that gasses that were used in keyhole surgery were trapped in large quantities behind the wound and they needed to release them. They did this twice before I eventually passed out.
I was then for some reason being wheeled on my bed at speed for an emergency CT and all I kept hearing is “her bowel has blocked”, “her bowel has failed”. I saw my friend and her Dad outside the scanning machine – apart from the absolute agonising screaming in pain I have little memory. It flits in and out, different people visiting, doctors and consultants checking on me, waiting for surgeons to make their mind up whether to operate on my bowel. I apparently text a few people and I called my closest friend. She couldn’t understand me, apart from me asking her to call you. Which she knew not to do unless it was an absolute necessity. I actually thought I was dying that night. I was terrified.
The specialist pain team came out to me and put me on different pain meds, but I had to have the NG tube into my stomach for a further two days and couldn’t eat or drink for 5. That morning the surgeons advised that the surgery had indeed caused my bowel to go into a paralysis. At this moment they didn’t feel they had to operate, and fit me with a colostomy bag, as they hoped my bowel would miraculously awaken of its own accord …. Apparently it’s a 1 in 10 kinda stat that you’ll end up with this following my operation …. Cheers for the heads up !
I can honestly say that I thought I was going to die in those hours, I have a patchwork of inconsistent memories. Those close to me grew more and more scared. But somehow I dragged myself through it, I’m not sure what kept me going.
It took several further days before I was able to even sit up. I had now not eaten or drunk for 5 straight days accept for tiny sips to moisten my arrid mouth and I’d had everything pumped out of me that resembled any goodness. The NG tube that was suctioning stomach contents out of me was increasingly uncomfortable and I could smell and taste sick contantly. If you tilted your head at a certain angle the tube gave the feeling that you were unable to breathe or swallow – my biggest fear in life is being suffocated, so to have this tube fitted I couldn’t relax, sleep, talk, eat, drink – I felt dreadful.
My sister visited to wash me to conserve any shreds of dignity that remained. I remember feeling so grateful for her kind and gentle touch as every pore of my skin hurt to even touch, but somehow she made me feel not quite as disgusting and vile.
My wounds were sore and bruised and I was so anxious of the tubes bring pulled or tugged after a nurse tripping over the tube of my catheter bag … that was attached to my bladder, I was now so anxious of moving that I daren’t even attempt to get up.
The consultants did their ward round the following morning and reported that my blood gasses had stabilised and that my bowel was showing signs of waking up from its paralysis ! Silly sleeping bowel !
The NG tube was removed later that day and I literally sobbed, alone in my bed as I let out the panic and anxiety that I’d somehow been managing to control for the past three days. It was so traumatic for me to have that feeling of suffocation 24 hours a day, but I knew what that tube was saving me from, so I had to endure it. But now it was over.
Over the following 24 hours tube after tube was removed, gingerly, and a liquid diet was reintroduced. Due to the bowel paralysis, the major surgery and severe lack of nutrition by now I could not stand at all. I really couldn’t imagine ever getting stronger. I couldn’t talk very much without getting out of breath, I couldn’t wash myself, hell I couldn’t even bare to look at or touch my own scars.
That day my best friend had announced that she’d transformed her dinning room into a bedroom for me and that I’d be moving into hers instead of with a family member …. her and her family had worked till midnight getting the room ready for me, I couldn’t comprehend how I was so lucky to have such beautiful friends around me.
The following day I came home. I couldn’t walk to the lift
I’ve been in bed for two days now, getting stronger by the day. My friend lovingly feeding me tiny bit by bit, carefully rebuilding my strength, showering me and washing me, and her and her beautiful family loving me back to me, piece by piece.
I felt so vulnerable and so scared. But with the love and gentle hands of my angel friends I am starting to feel like me again.
It takes months for the anaesthetic to actually rid itself from your body and I’d say after that, the spinal block and the rest of the drugs I’ve had my emotions will probably be a little delicate for a while.
The superb news is my kidney didn’t appear to contain anything anymore sinister, this will be confirmed in the coming weeks once the results arrive from the lab, but at this stage there is nothing to suggest that the initial tumour found 6 years ago was cancerous.
I’ll be able to clear out my medicine cabinets, I’ll be able to safely and excitedly plan for the future, my goodness I can’t wait, the healthy and happy me ….. But I’ve got a little way to go, baby steps for some weeks.
I just can’t be more grateful for the support I’ve had around me and the chance I’ve had at life again free from kidney disease.
I never want to see the inside of a Hospital ever again. Ever.