Tag Archives: surgery

4. ICU

At a number of points during that following week I remember thinking why the hell did nobody warn me of this? It seemed almost cruel to me that they would send me into this week of hell without any warning. Perhaps, ignorance is bliss. Those weeks leading up to surgery were bad enough without having to prepare myself for what was to come after.

My first memories post-op were the voices of James, my Dad and the surgeon chatting to each other…..no idea what about, I just knew they were there and they sounded happy. I was seriously groggy…..could hardly keep my eyes open, just drifted in and out of consciousness peacefully. Nurses kept on trying to wake me…..get me to talk, but I was having none of it! Sleep is far too lovely thank you very much! It’s very strange reflecting on this now actually…..I am searching my memories to remember. So James filled in the gaps for me.

Dad and James went their separate ways after I went through to theatre – Dad went down to the cafe with his iPad to pass the time, James went to the gym. Both had been given a ball-park of up to 5 hours for the surgery and they would receive a call when it was complete. When James finished his gym session, he found a missed call on his phone from my surgeon’s mobile. Way before the surgery was due to finish, he naturally started to panic and called right back. The anaesthetist answered cheerfully and said it’s all done – successful op, she’s doing really well – just being stitched up and you’ll be able to see her in recovery in 90mins. Delighted with the news, he called Dad and they both met again at the hospital to wait for me to come through. I had been booked in for 2 nights in Intensive Care for close monitoring so they waited there. They waited, and waited. Repeatedly asking the ICU staff where I was……they kept on saying the same: ‘she’ll be through soon’. Stress levels started to rise, having been told I would be through a long time ago now….and I think a few frank words were exchanged between my bodyguards and the ICU staff whilst I was in the land of not-wanting-to-wake-up. I remember the nurses trying to wake me….and I just couldn’t shake myself awake. If I had any idea how worried Dad and James were, I would have given myself a good slap. The drugs they had given me had clearly knocked me out!

I have a vague memory of the surgeon showing my Dad a picture of the tumour on his mobile phone, my poor Dad. I really don’t remember much of that first day…..I think they brought me an omelette to try eat, which I tried with Dad’s help. Feeling like a child again, my Dad carefully cuts up my food and helps me reluctantly take a bite or two.

Then it’s night time…..Dad and James have gone home…..I’m behind curtains with orangey-yellow lights and shadows of nurses moving around helping out the 6 patients in ICU that night – a full house and very noisy. All of a sudden I’m aware I can’t move. Can’t sit up, can’t even turn. I feel paralysed, trapped. I look around and there seem to be a hundred different lines coming out of me going into beeping machines. I have 3 or 4 IV lines in my hands and lower arms, a central line in my neck with quite a few lines coming out, an epidural in my spine, oxygen nubbins in my nose and a catheter.

LinesICU

Fear washes over me as I realise how serious my condition is. Not 10 minutes goes by without a nurse coming in to check on you, writing observations down in a thick file of notes at the foot of my bed. I can’t say much – I’m almost incapable of talking. My mind is blank, in shock, struggling to understand why so much fuss is required. I must be drifting in and out of consciousness, because all of a sudden there are 3 nurses next to me man-handling a machine that seems to be misbehaving – my epidural or my pain pump has run out, and clearly the machines are not easy to refill and reset. This happens repeatedly throughout my stay in hospital….various nurses cursing at these new machines that they all seem to hate.

I wake up the next morning for what feels like the 40th time and it seems to be getting light outside…..and all of a sudden I am in a lot of pain. I have a pain pump, a button which releases fast-acting IV pain relief, that perhaps I have not been pressing enough. All I remember is intense burning pain down my right side. They try to roll me on my side to check my epidural line and I almost scream in agony. The reality of my situation dumps itself on me like a lead weight and I feel trapped and panicked. I had no idea it was going to be as hellish as this and I feel angry that I’m mentally so unprepared. In the delirium of my pain, they give me a bolus on my epidural and increased the constant levels. Suddenly I feel like someone is standing on my chest and I can’t breathe…..start to panic and hyper-ventilate. Nobody told me that this bolus would creep up my chest and, in-effect, paralyse the bottom of my lungs. A nurse is there, James is there…..I feel like I might suffocate. I have never felt more close to death. Eventually I calm down and the numbing effect of the epidural blocks my pain.

During the day, my Dad sits patiently by my side as I drift in and out of consciousness. This is what he would do for the entire week – so that James could continue to work this week. Dad was on daytime duty and James was on early morning and evening duty. They were both amazing. On this second day in ICU most people who had been with me in there the night before were moved on down to the ward, so they moved me out of the corner and across to the other side of the room and faced me with a gorgeous wrap-around view of Mount Eden. I remember watching the little figures of people standing at the top taking photographs of the beautiful panorama and wishing I was there, not here. One day soon I will go up that Mount and be one of those little people and I’ll look back at that window and realise how far I’ve come.

Mount Eden

Some time later on that day, I had my first complete meltdown. My pain levels increased again and the nurse told me off for not staying on top of it by pressing the pump enough. Apparently you need to press the pump in advance of pain, keep on top of it. Well I’m sorry, but firstly I’ve never used a pain pump before, secondly I’ve never had surgery on my abdomen….and quite frankly, I’ve never experienced such pain in my life and my pre-planning rational mindset is not quite in gear. So forgive me for being on a learning curve! I remember crying, no actually sobbing….hyperventilating again, totally flipping out. No father should have to watch his daughter go through such a thing….I could feel his heart breaking as he watched me go through hell and back and I felt so guilty I couldn’t be braver for him. The nurses fluster around me trying to make me more comfortable. Dad holds my hand as I try to calm down. All I want to do is escape my body that seems to have broken down to a point I never thought possible….I just want peace, no pain. I feel desperate. Eventually I calm down and I find myself staring at that beautiful view and the miniature people again. My Dad continues to hold my hand, sits patiently watching me. He really is an amazing man.

The next morning is a repeat of the first….I wake up in ridiculous amounts of pain, clearly not been on top of it again. The anaesthetist visits me, as he does every day, and looks though my file and what levels of the drugs I’ve been on. He suggests a new drug to add to my cocktail that might help – clonidine. I nod, trusting him and desperate to try anything that might help….so long as it doesn’t give the same suffocating effects of the bolus on my epidural the day before. So clonidine is added to one of my IV lines, and within minutes I’m out-of-it. James arrives and, not that I remember, he told me I couldn’t even string a few words together. I was totally doped. He came all that way to find me incapable of communicating in any way. It must have been a shock for him to see me like that…..and afterwards I feel guilty that I’m not braver and able to handle the pain. I think I came around in a few hours…..my Dad was there again sitting by my side and I had no recollection of anything past my anaesthetist talking to me at 6am.

After 2 nights in ICU, I hoped to be able to go down to the ward. My noradrenaline levels had been reduced right down, to counteract the effects of the drugs I had taken prior to surgery. My other observations and tests seemed to be going well. But the biggest test for being able to go back to my room on the ward is getting on my feet. Sounds easy…..really, no. The Physio arrives and helps me sit up on the edge of the bed. I have never felt so heavy in my life. My legs seem to hang, incapably down from the bed and I can hardly keep my head up. My right leg is numb from the epidural spreading. Instantly, nausea sweeps over me. The nurse takes one arm and the Physio takes the other and they lift me to my feet. My tummy pulls – won’t allow me to stand up straight, and I’m forced into a hunched position. I remember having to tell my own feet to take a step. Shuffling like an old lady with lines dragging behind me, they walk me in a very small circle in the curtained-off area round my bed. The whole time my body is screaming out ‘get me back to bed, I just want to lie down’. Getting mobile after a surgery like this is one of the hardest things to achieve….and this was just the beginning.

The Physio, not convinced by my first attempt, returns in a couple of hours and we repeat the process again, this time with my Dad helping by holding me up on one side. I remember thinking again how sad it is that he should be having to do any of this. Pleased that I managed it twice, I got the clearance to go down to the ward. Dad and I waited for the nurse to come and he pushed the bed with her down to my room.

Dad pushing me down to ward

No more bright lights in the night time, patients calling out, noisy machines, alarms, constant checks. The staff in there were just incredible and I am humbled by the job they do – it can’t be easy taking care of such acutely sick people and dealing with their stressed loved-ones…..and they work ridiculous hours. It takes a very special kind of person to do that job and I am full of admiration and gratitude.

Two nights in ICU had felt like 2 months and I have to say I was glad to leave. Now I had the peace of my own little room, a place where I would overcome a lot of battles in the week ahead.

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3. Alien Resection

The following Monday I met with my anaesthetist. You would imagine it would be the usual height, weight and standard questionnaire but instead, it was another lesson on the functionality of my tumour and how we need to prepare for surgery. With 10x too much adrenaline being released from this Pheo, there are certain precautions that must be taken. Mainly, for me to take alpha blockers for the week prior to the op to adequately ‘block’ the effects of excess adrenaline secretion and therefore avoid dangerous swings In blood pressure during surgery. This relaxes the constricted blood vessels but speeds the heart rate, so in turn a few days before surgery beta blockers are then introduced to fix that problem. He tells me that during the op he will have a number of upper and downer lines going into me that he will have to adjust constantly in order to keep my blood pressure at a steady rate, even whilst the Pheo is being manipulated and squeezed. I’m not a classic case for a Pheo though, being mainly asymptomatic these days with uncharacteristic low blood pressure. He tells me it will take a while to know what is ‘normal’ for me, so he can identify if I’m misbehaving….therefore he will need to see me a few times prior to the op to take blood pressure readings etc. I listen attentively, the shock of the past few weeks fading as my former assertive self steps back in. I’m so intent on getting this alien out now, and I’m fascinated by the balancing act this man will have to perform in order to keep me safe. I imagine him almost needing to ‘play’ me, like an instrument. I feel very lucky to have such competent professionals dealing with me.

So off I go, tablets in hand. Because of my low blood pressure, he warns me that it’s not going to be a fun week: the meds will make me feel weak, dizzy and possibly quite unwell. But there’s no way around it – no blocking, no op. No blocking, no alien resection. Not entirely true, I would have to wait another week…..but I’m just about sick of waiting and want this thing gone ASAP. Waiting is not an option.

Back to another challenging week at work, punctuated with appointments for more blood tests and scans. Another hideous breath-holding MRI to check my whole body for any spread of tumours. A chest CT to look closely at my lungs – where the tumour is growing into the blood flow of my vena cava, the surgeon is concerned there might be some spread into my lungs. An echocardiogram to check my heart functionality with all this adrenaline pumping around my body.

Thursday comes around and my lovely Dad arrives…..flown in all the way from Spain to be with me. It was supposed to be a surprise but James ended up telling me as a boost when I was feeling low the week before. Just knowing he would be here made such a difference on my mindset. The spokesman for my family and my connection to home at a time when you feel so far from home. My second rock, along with James. I get home from work that Thursday and there he is nodding off on the couch, tired from his long journey. He wraps his familiar arms around me into a hug I will remember forever….like he might be able to hug away all my fears.

Me and my bodyguards

By the time Friday came around, the meds were making me feel more than a little ropey, so I took the day off work, resigned to the fact that this would be it now until I’m fully better.

Admission into hospital was Sunday, so me and my two bodyguards trooped off to the hospital in the late afternoon. Sitting in the back seat looking out of the window, my Dad and James chatting in the front, I looked up at the Spring blossoms and new leaves growing on the trees. They looked beautiful.

The nurse takes my height and weight and shows us to my room. Then she gets her BP machine out and looks alarmed when she sees how low my BP is. My Dad, now an expert on this, almost cheers as he sees it – he knows, of course, that the lower it is, the better. My anaesthetist arrives and repeats the process and instead of looking alarmed, he gives me the nod – I’m blocked and safe to proceed – alien resection is go.

After a quick bite to eat out with Dad and James (feeling like an escaped patient with my hospital tag on my wrist)….they go home and I get ready for bed on my own in that little room. Suddenly I feel lonely and afraid….and a little bit lost. I remember sitting on that bed and wondering how the hell I had got here. The stress of the last few weeks hit me and I feel overwhelmed. Is this really me? Is this really happening? That familiar feeling of being on the outside looking in creeps in. I wouldn’t have been surprised at any point in this whole sorry tale to wake up with a start in bed at home and realise it was all just a bad dream. Then the nurse bustles in, breaking my mourning feel-sorry-for-me moment…..and tells me all about coughing pillows. I really don’t know what she’s going on about and can’t focus enough to listen. Probably a good thing, because I’d learn all about them and the hideous pain related to them soon enough. She gives me a sleeping pill and I drift off into a troubled sleep.

The next morning the nurse wakes me. I shower with a special disinfectant scrub and get into a hospital gown. All of a sudden time speeds up and everything’s a-fluster. It’s all machines, checks, anaesthetist and surgeon visits….’ready?’…..as I’ll ever be. Then it’s a sombre silence – just me and Dad and James in that little room waiting for what seems like an eternity whilst they prep the theatre.

Soon enough, another nurse comes in…..I haven’t met her before, dressed in theatre scrubs and telling me in a reassuring tone that she will be the main assisting nurse during the procedure. At this point I thought I would have to say goodbye to my Dad and James……tears already starting to warm my eyes. But then she tells us they can come all the way up to theatre to say bye. Amazing! I love kiwis. This would never happen in the UK.

Wheeling me up on my bed, I look fondly at my Dad and James walking behind me…..my two bodyguards. These two amazing men would help me get through this nightmare that’s about to begin. I start to feel emotion kick in…..and a whole heap of anxiety. Double doors flip open and there’s my anaesthetist, who I feel like I know pretty well now. I hate to admit it…..but when I kiss James and Dad goodbye and the involuntary globby tears start to roll out (I had held it together pretty well to this point), I actually wonder if this is it. This might very well be my last moment of consciousness. I have never had such a heavy heart. Staring my mortality in the face, I have a feeling inside me that words just can’t possibly describe.

My anaesthetist gently takes my hand and tells me I’ll feel a scratch…..then I’ll begin to feel a little sleepy. That’s the last thing I remember.