Alt Text: A small painting of mine in inks and watercolours of the part of an arm just above the elbow. There is a ‘Picc Line’ inserted into the skin and a large plaster (partly transparent so tiny amounts of bleeding can be seen) is holding the cannula in place. Various tubes trail from the cannula.
“Look, I know we’ve discussed some pretty mind-bending things here but when you read about me on paper, it’s always worse than what actually happens in reality. I bet you that I come round ok, I don’t need a ventilator & it’ll all go completely fine.”
This is how I ended my video call with the Consultant Anaesthetist, my Breast Cancer Nurse & the Access Officer at Charing Cross Hospital. It was my usual upbeat tone, trying to make it ok for everyone else as well as remaining positive for myself. We’d had a tough hour together. At the start of July 2020, the surgeon said it was safe enough to bring me into hospital for my lumpectomy, so the Consultant Anaesthetist was discussing how she was going to make the surgery as safe as possible. Placing a patient who has conditions like mine under general anaesthetic is a tricky business. On advice from my consultant at the Royal Brompton Hospital, a ventilator was prepared, & I had a bed waiting in ICU (Intensive Care Unit) for me as part of the after care.
During the video call, the Consultant Anaesthetist explained that for every 30 minutes to an hour that she was to keep me sedated, it would take a year off my life, so we were all keen to keep the surgery to the standard an hour & a half for a lumpectomy. We also had to have more serious conversations about what could happen to me during surgery too, so I put my affairs in order.
I did fine during the operation; I came round in recovery about 6-6.30pm (the last time on the clock that I remembered was 3pm) & I didn’t need a ventilator. I came home the next evening (most patients return home in the same day or the next). We’d planned for a 3-week stay in total; 2-3 days or perhaps longer in ICU, & a couple of weeks on the general ward afterwards.
When we returned home that evening, my boyfriend & I dragged my luggage back into the flat, shut the door, & then I burst into tears of relief. Understandably I’d had some very dark thoughts about the whole ‘going under’ business. Some people say that the moment you drift off to sleep only to wake up high is the best part of any surgery. It isn’t for me. I’m always scared that I won’t come round again.
But you know what, I did come round, & I didn’t need a ventilator. And everyone was surprised & delighted that the procedure was relatively straightforward & that I was able to return home so quickly. When I expressed on the video call that I might not need a ventilator, I was ‘hedging my bets,’ so no one was more surprised at the outcome than me!
But in between the surgery & returning home, I had to spend a night in ICU. To say it overwhelmed me, is an understatement.
When I arrived in ICU it was 8pm. I only know that because my bed was located opposite the clock & the clockface gave me something to focus my attention on whilst I was drifting in & out of consciousness. I have no idea what happened in the time that I left recovery & arrived in ICU. I’d never seen so many nursing staff on one ward, but that could have been because the day shift staff were handing over to the night shift staff. Plus, I didn’t realise that a lot of ICU care is ‘one-to-one.’ It was incredibly noisy & busy. I could sense tension between the two nurses handing over to the nurse assigned to me for the night. I remember asking quietly if they could not please argue with each other around my bed as it was making me nervous & tearful. I think that’s when the nurses realised that I was more alert than I appeared & they all apologised. I was kind of mentally alert but physically weak. This state of being always scares me because I can’t make a quick get-away. In ICU, an escape was even more unlikely with the Picc Line & other medical paraphernalia that I was hooked up to. Being honest, I was nervous because I couldn’t control the circumstances that I was in. I use the term ‘alert’ very loosely because there were periods of brain fogginess, caused by medication & sheer exhaustion. In these circumstances, I become very afraid of losing the ability to self-advocate. In ICU, all I had was a very weak voice.
All my disabled friends have the same fear about losing the power to self-advocate in hospital. This fear is now acute since the pandemic & the DNR (‘Do Not Resuscitate’) orders came about.
I wasn’t prepared for the sights & sounds of ICU. Throughout the night, the ward became calmer & less full of patients. I’m not sure why & I’m not going to speculate on this. Sounds become even more intense at night when you’re trying to get to sleep. I’m also at my most anxious in the wee small hours. I was awake for most of the night; I think I managed about an hour between 6 & 7.30am; I was exhausted, but I was on ‘hyper-alert.’
At about 4 or 5am, my nurse appeared with a blood-thinning injection. I freaked & blurted out that I had a needle phobia. She proceeded to say that it was only a small needle & showed it to me. Trust me, that’s not the thing to do when someone has a needle phobia! I explained that I wasn’t prepared for another needle & that on the operating table, the majority of the needles had been put in whilst I was asleep because of my phobia. My nurse felt really bad when I started panicking & in turn, I felt sorry for her because she went to get the consultant & asked him to administer the injection instead! He had to talk both me & her around – me into having the injection & her into giving it to me. He stayed by my side & distracted me whilst the needle went in.
The consultant then said that he’d noticed that I hadn’t slept – was it too noisy, were the lights to bright? Because my ability to process what entered my head before it came out of my mouth had disappeared due to heavy medication, I told him straight up that I was scared to sleep in case I stopped breathing, which was likely, because I was sleeping on my back. Over a year later I still cringe at myself for saying that. The consultant gently reminded me that that’s why I was here; that if I had an issue with my breathing, I was in exactly the right place for something to be done about it, so I could just may be try to sleep? He also said that my oxygen levels had remained very stable after the operation & that he didn’t foresee an issue with my breathing anyway. But I wasn’t to be persuaded, forever the control freak. Like I said earlier in the blog, I think I got an hour or so of sleep just before breakfast.
During my stay, I worked out from snippets of conversations drifting over closed curtains that the lady next to me had collapsed into a coma after a long-haul flight. She’d had no previous history of fainting or epilepsy before. Staff were communicating with desperately worried relatives, half-way across the globe. Her assigned nurse attended to her all night, adjusting various drips & machines, trying everything to elicit some sort of response. This nurse took only a short break in 12 hours. I heard her say to the manager that she wanted to try everything she could to get a response from her as well as preparing all the machines & drips for the day staff, so they didn’t have so much to do. I was humbled by her dedication & determination.
My assigned nurse was equally as kind. She helped me phone my boyfriend to let him know that I was ok – unfortunately, I wasn’t in a fit state until midnight to say a few words to him, but that late call was crucial. He only recently confessed that he knew I’d survive the early-stage cancer, but he was terrified that my lungs would give out & I wouldn’t make it through the operation. My nurse also chit-chatted to me on & off which helped distract me from what she knew I was hearing around me, & she helped me wash in the morning before she handed over to the day nurses.
The act of distraction was important. In the early hours of the morning, the patient next to me suddenly let out a long, primal scream which started in a low octave & finished in a high one. I’d never heard any human or animal scream like that in my life & it absolutely terrified me. And then she was silent once again. When I was moved to a general ward in the morning, she was the only patient left in ICU.
There was another guy over the far side from the ward who I assumed staff were trying to wake from a coma or help him come off a ventilator because they frequently played him music & were periodically calling his name, saying it was time to wake up.
The ward slowly emptied throughout the night. I think about those patients that I was with in ICU every day & wonder if they’re ok. I would really, really like to know if they’re ok. I’m just going to tell myself that they are ok, that they’re much better now & they’re having a great life. The memories of ICU float around in my head, especially at night. Occasionally I have nightmares about it. I think I probably have to live with this trauma my whole life.
All too soon morning came, & my surgeon appeared with a physio. He was delighted that I was awake & he said I looked remarkably well. He asked me to raise my right arm (which was affected by surgery because of the lymph node removal). I did that with ease so he said that I could go home later that day. The physio intervened to say that she needed to see me do some arm exercises at first & I did those with ease. The only task left was for me to practise transferring from bed to chair & vice versa. I did this a little later on the general ward and to the horror of the physio, I did the transfers without my brakes on (I rarely use my brakes!) All the exercises hurt like hell but I was desperate to leave the hospital as soon as I could.
I had to move to a general ward for a few hours because no-one can be sent home straight from ICU. After tea & toast, & various tubes & lines being removed, I was on my way back to a general ward. Several ICU staff spoke with me & one expressed how nice it was to have a conversation with an ICU patient because it was so rare that anyone was awake. I asked if it ever played on their minds what happened to the patients once they had moved on from ICU. I confessed that it was playing on mine. They took what I said seriously & urged me to get support in processing what I’d heard during the night. They answered my question honestly; they said very occasionally they heard follow ups on their patients from other departments, but mostly they didn’t get to know outcomes, & they were trained to try & move on emotionally.
I’m trying with CBT (Cognitive Behavioural Therapy) techniques to move on from my night at the ICU too.