I published this 5 years ago. I was diagnosed with a large acoustic neuroma and underwent surgery 5 years ago today. A 12 hour operation and life changed. It changed so much for me but re reading this blog, some of the lessons I learnt then, still apply now.
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This blog is the hardest to write as I had the most difficult night so far. I was so tired and my brain was obviously not functioning normally but I learnt so many things in the first 24 hours.
Lessons learnt so far…
1. My Name Is..
The late great Kate Granger championed ‘My Name Is’ as a mandatory component of NHS culture. It is an introduction that I have always felt to be important, not only to introduce oneself, but also to ensure that patients have a name to refer back to when further questions need to be asked.
The John Radcliffe Hospital in Oxford runs 12 hour nursing shifts so the same wonderful ITU nurse looked after me for the majority of my stay on ITU. She introduced herself to me and I repeated her name so that I did not forget it, a method I have used for a long time otherwise I forget names at parties instantaneously. This time however it did not work as I repeatedly forgot her name, calling her something similar, and had to keep asking her to clarify. She was patient with me and reintroduced herself until I finally remembered. She was compassionate and attentive, constantly keeping an eye on me. I was unbelievably thirsty after surgery and constantly asked for a drink of water. I was lying flat, as apparently the more you sit up the more you suffer with a headache, and drinking laying flat is a real feat. She was amazing, with ice-cold water and a straw at my beck and call.
A relationship developed as I just could not sleep and we chatted about so many things . She needed to go on her break and another nurse covered for her during this time. This new nurse also introduced herself but I did not catch her name as I must have drifted off. When I woke up feeling thirsty a few minutes later, I did not feel that I could call her as I felt rude not knowing her name at all and just shouting ‘nurse’. She did check up on me and asked if I wished to have water. I asked her name again and realised how important this small introduction really is for a patient. Without knowing her name I felt very vulnerable but also guilty that I might be interrupting an important task rather than feeling empowered to ask for help. As a professional, I must remember to make sure to introduce myself to a patient at the beginning of a conversation but also make sure I remind them again at the end so that they have a name to remember if they wish to. Even more importantly, I need to make sure that I do not assume that patients will remember my name from one ward round to another even if on the same day.
2. Sleep is SO important
I slept for an hour and fourty minutes during my ITU stay. Nationally ITUs are noisy! If you are intubated, then it is probably okay but if you are awake trying to get some sleep….
The poor nurse did her best to help me. After surgery my hearing has altered so much. I think I can hear a little from my right ear but noises sound so different. Immediately after surgery, I felt as if I was one of those superheros with amazing hearing, as I could hear everything but could not pinpoint a direction. I could also hear a sound that I thought were vehicles reversing outside of ITU, through the window behind my bed, and only realised the next day that it was the noise of the flotron boots (intermittently inflating boots that you wear on your legs to stop development of a deep venous thrombosis or blood clot in your calves). This also meant that background chatter, bins being emptied or monitor alarms going off repeatedly interrupted any chance of getting sleep. Next time I will ask for ear plugs!
I had slipped a disc many years ago and this had been irritated again during my positioning for surgery. I developed sciatica which was very painful and affected my left leg. I normally struggle to lie flat when I am sleeping as my back becomes uncomfortable, so laying flat after surgery with sciatica was a real challenge. Even more of a challenge was working out which position might be comfortable. I had an incision on the right side of my head and neck which was uncomfortable to lie on if I was rolled onto my right side. In addition, I had a catheter inserted into the vein in my right groin (right femoral). I also had two drips in my right arm. So rolling onto my left side sounded ideal apart from the fact I had a left radial arterial line (a catheter into the artery of my wrist) which was measuring my blood pressure continuously. I also had a catheter into my bladder and the aforementioned flotron boots on both my legs connected to a pump at the bottom of my bed! I could not work out how to lie and so just kept having to move so as to stop the leg pain which was much worse that the headache!
The dedicated nurse tried to get me as comfortable as possible by repositioning me. This was no feat as it meant two nurses helping me to move but they did it regularly without any indication that this was an imposition even though they were so busy.
I still could not sleep and eventually I think drifted off as I was just exhausted at 5am and then woke up again to have my bloods done at 6.30!
3. Let others help
I was laid flat and had slipped down the bed. Hospital beds are so slippy and the stockings to stop you from getting DVTs (TED stockings) mean that you have no grip to move yourself around. I could not really move myself much anyway as I was so tired and uncomfortable. The nurses asked me if I needed help to move up the bed. Miss Independent here thought she would try by herself. That was a big mistake, a) I could not and b) I was promptly sick! I learnt that lesson very quickly ie ask for help.
Nausea and sickness were issues. I was thirsty and sipped water regularly and was promptly sick. The nurse suggested an anti-sickness medication. I thought that the vomiting would settle so I refused. Wrong decision, others know better as they look after patients like me regularly. I needed the anti sickness medication later on and this was important as vomiting increases your blood pressure and this carries a risk of a cerebral bleed (bleed within the brain at the site of operation). Letting others help when normally you are the helper is really hard. I cannot imagine that this is very different for anyone else as we all try to be independent in our own lives. Being a doctor brings the additional difficulty of having specialist knowledge in one small area and trying to apply it in another. Making assumptions causes problems and I had to keep remembering to stop thinking what was best for me and let others make these decisions.
4. Time passes slowly
There was a clock on the pillar opposite my ITU bed. I could not sleep soundly and was grateful when I drifted off. When I regained consciousness, I felt as if hours had gone by. Sadly it was only ever a few minutes and the night felt so long. The clock suddenly became the focus of my attention and this made time pass even more slowly. The nurse pulled the curtain around my bed so that I could not see the clock and this made my night slightly easier! This really was the longest night ever.
5. Yes, you can
After little sleep and a cup of tea, I was informed that I had progressed well and I would be transferred to the neurosurgery ward once a bed became available. The right femoral line and left arterial line were removed and I sat up a little. The physiotherapist came to visit me and suggested that I could stand. This would improve my breathing as my oxygen levels were a little low as I had been laying flat all night. I laughed. I could hardly sit up and could not pull myself up in the bed. And she wanted me to stand? Remember what I said ‘Making assumptions causes problems and I had to keep remembering to stop thinking what was best for me and let others make these decisions’. This applied again, I was in her hands. She asked for help from other nurses and patiently sat me up on the edge of the bed. I felt nauseated and strange but I managed it. I thought she might be satisfied with this as it had been very hard work. But no, she really did want me to stand! I was really anxious as my left leg was so uncomfortable. With the help of two, I did eventually stand and it felt so good. I felt like I had achieved an important goal but was so glad to get back into bed. I felt like I had done a marathon and really needed that second cup of tea!
6. Believe what the doctor says
I was eventually moved to the ward. I slept, took painkillers, had observations and slept. My surgeon visited and was pleased with the progress and reminded me that I should expect to feel exhausted and although this would improve, it would last three months or more. Although he had told me this prior to surgery, I had not believed him. I cannot explain how exhausted I felt. Thinking hurt, sitting up in bed hurt, coughing hurt, turning my head hurt as did brushing my teeth. Lying still and flat in bed did not! Tuesday and Wednesday passed without much change. I required another CT scan on Wednesday and all was well. The dreaded urinary catheter was removed on Thursday morning and this meant I had to get up and get to the toilet as otherwise I would need to use a commode. This felt like a challenge and I love a challenge. I needed the help of two nurses but I managed to get there and back but again felt like I had achieved a Herculean task and went back to bed. The physiotherapist came to see me and persuaded me that I could do one more walk to the door and back. I did it and was then again straight back into bed! She also suggested that I try to brush my hair as otherwise this would become an impossible task. This took me 20 minutes as lifting my arms seemed to be so difficult.
I really wanted to have a shower. The male member of nursing staff suggested that he would help me after lunch. Miss Independent came back into action. I really wanted to do this myself. My nurse helped me into the bathroom and brought everything to me. I sat in the shower and explained that I like to get on with it but would ask for help if needed. It took me an hour but I did it. But I did need to ask for help. I managed to dry myself, get my pyjama top and underpants on. I managed one leg of my pyjama bottoms but then ran out of energy and could not get the other leg on!!! My nurse came to the rescue and helped me to finish dressing and then get back into bed! In my mind I had planned to leave hospital on Sunday and this now seemed to be an impossible task.
7. Compassion and Diversity: worth their weight in gold
I had outstanding care through these days from a diverse workforce spanning from the Indian subcontinent, the Caribbean, the EU as well as from UK institutions. The one conversation that unified the nurses looking after me was the lack of assurance to colleagues from the EU living in the UK. The majority of the nurses from the EU were at the beginnings of their careers. Their biggest concern was that their original plan, to spend a period of time here and then return to their home countries with an enhanced skill set benefitting their own communities, was now uncertain. This was forcing many to rethink their decisions, and consider travelling home and forging their careers there or in another country.
You might anticipate, that in this hard pressed environment, these EU nationals would just work out their contracts, preparing to go home.
Absolutely not. I received the highest standard of care. There was excellence in care from all staff groups including those unsung heroes who cleaned the wards and ensured that all patients were fed and watered. I witnessed many staff going beyond what would be expected as normal professional behaviour.
The hard-working nurse who looked after me in ITU took her break and did personal development plans with her team. The nurse managing a difficult patient with memory problems went out of her way to ensure that this patient was looked after with dignity. The member of staff managing the patient, who had returned from surgery for head trauma, patiently managed the expectations of the patient and their family. The junior doctor looking after me came to see me four hours after his shift should have finished to reassure me that my CT scan was normal.
The compassion, goodwill and professional care of the staff in the NHS is worth its weight in gold. The NHS is in crisis with its workforce and surely this is not the time to hold the EU NHS staff group as a bargaining chip in the BREXIT discussions? There is a motion calling for a guaranteed right to live and work in the UK for all EU citizens working in the NHS and care services. Surely this be supported, as without it the NHS will collapse and patient care will suffer.
All I know is that without these fantastic individuals, my care as a patient within the NHS would have suffered. The question remains today as it did 5 years ago. How do we recruit, retain, value and reward our wonderful NHS staff, who continue to deliver more and more. Especially when they are now harrowed and exhausted having battled with Covid-19 over the last two years?