I wasn’t initially going to write about how horrible the aftermath of the operation was (for the sake of the squeamish) but in view of everything I’ve learnt and thought about since, have decided to put it all in – gruesome as it is, as I’m now at home and feeling so much better (as well as p…..off).
My first experience of MRI (acute medical ward) for the fluid draining in November was fantastic. I was in a single, en-suite room (so really quiet at night) with super-efficient staff and systems, and once the fluid had all been drained, I felt really well and enjoyed the chance to read and to talk to visitors. It was like being on holiday – apart from the food, which was terrible. But, as I said to visitors – “I don’t have to shop for the food, to cook it or to wash up after it, so I’m not complaining”.
This recent experience (in the ‘recovery’ ward - what a misnomer) was very different. I was in a 7-bedded women’s bay alongside were other similar bays (some for men) as well as single rooms. I don’t know exactly how many bays or rooms altogether because I was never well enough to really explore.
Each bay seemed to have a senior nurse in charge (who probably also had to oversee the single rooms) with a variable number of support staff – some were obviously more junior nurses and some were students. Others were called ‘carers’ and some were ‘domestics’ (ie cleaners, bedding changers etc). The ‘hierarchy wasn’t clear (and of course never explained to anyone) but there was a blurring of roles anyway, presumably based on individual competencies. Sometimes domestics would come round to do the ‘obs’ (the checking of blood pressure, temperature, blood oxygen levels and breathing rate and recording pain levels) - a nursing job, although done by machine. As in any organisation, some staff were competent and over-worked (and usually they were the ones who would make time to do things for patients), others were slow and lazy and never around when needed. On my 5 day-shifts and 4 night-shifts I experienced 4 different senior nurses and only 2 of them would I rate as being on top of the job (and with a caring and compassionate manner). Most of the time there were only ever 1 or 2 members of staff in the bay, so patients needing attention just had to wait. Coming from the teaching profession where ones competencies and skills are constantly under evaluation from both internal and external bodies, I’d be interested to know what similar evaluations are carried out in the NHS. Under the old Community Health Council system we used to do ‘unannounced’ visits to wards on a randomised basis in order to check on patient care and things like the state of the toilets and rest rooms etc, but I’m not sure if there is anything in place of that system now.
On admission, the amount of unnecessary paper work that had to be laboriously hand-written, on more than one occasion, by nurses who had too many other things to do, was unbelievable. Routine information (such as address, date of birth, illness history etc) was repeatedly asked for, hand written and put into separate files, although it was all already on the hospital computer.
I was allocated a bed on Monday afternoon, settled myself in and co-operated with all the form filling. My first experience of the nursing incompetence was after a blood sample had been taken and it turned out later that the nurse had forgotten to send down the appropriate signed form with it, and so needed to take another sample. Given my needle phobia, you can imagine how I felt about that. I was tempted to refuse on the grounds that it was her problem not mine, but decided that I really had no option but to co-operate. At 10 pm I had my last intake of food (ie 2 pieces of cold white toast with butter) and warm milk, had a sleepless night and at 10 am on Tuesday was taken down (in my bed) to the operating theatre. The anaesthetist had also visited the evening before to go through (again) my medical history and allergies etc and explain what would be happening, but the Theatre nurse explained it all again, which was useful, because I’d forgotten that they were also going to do a bronchoscopy. Then the catheter was put in my arm and the anaesthetic pumped in and that was me then out like a light.
The next thing I became aware of was feeling very cold, in a lot of pain, and with a sore throat and dry mouth. I was vaguely aware of a person (male) at the bedside and of trying to transmit my condition. I kept repeating through chattering teeth - “Cold! Pain! Need water!” - but to no response. Eventually the person said –“you can’t have anything to drink because you’re still coming round from the anaesthetic; the pain relief will kick in soon”. He did however let me wet my mouth with a sip of water. I was aware of him having a conversation with another person about shift times and holidays and feeling frustrated that I couldn’t make him understand that I was still cold and in pain. Eventually I felt some warm air being pumped into the bed clothes around my feet and did get another mouthful of water to relieve the dryness and sore throat (from the bronchoscopy). Then I lost consciousness and was wheeled back up to the ward (around 2pm). I kept dozing off all afternoon, but every time I looked at the clock it would only be 5 minutes after the last time I looked, so I didn’t feel as though I was sleeping. When the evening meal came round at 5pm I felt too nauseous to eat it. A nurse did eventually come round to see if I could be persuaded to eat anything and I thought I could maybe manage a yoghurt, which (with some difficulty) she eventually managed to track down from somewhere. It was a struggle to get even this down given the state of my throat but it wasn’t enough to stop my empty stomach producing acid at a rate of knots and increasing my discomfort and nausea. I wasn’t conscious of any pain, and could manage to get myself to and from the loo, but didn’t sleep much during the night (too much noise from other patients, constant electronic bleepers going off and night staff chatting in the corridor).
The following day was a nightmare, with too much happening to capture here (partly involving incompetent staff and general lack of nursing care for patients other than me). When I asked in the morning about the outcome of my operation, I was told that the surgeon (Mr O) and his assistant were both on leave that day but the doctor doing the round that morning would be able to tell me something. When the Doctor did come round and looked at the notes he said - “it just says they didn’t do the Pleurodesis!” I was dumbstruck because I had the ‘holes’ on the left side of my chest wall (and the bruising and pain, which had really kicked in by then). He didn’t know any more than that, but since the surgeon dictated notes during the procedure which would have been typed up by his secretary, he promised to go and find out for me and come back later. I’ll draw a veil of the pain and discomfort of the next few hours and skip to the Doctor returning in the late afternoon with the information from the operation. Apparently there was insufficient gap between the pleural membranes to even get the camera in, so the surgeon had tried another place and found the same problem. In other words, the membranes had apparently glued themselves together after the liquid had been drained out, so the whole operation was completely unnecessary. The doctor tried to re-assure me that there would have been no way of knowing this beforehand, but I’m still not convinced given that the radiologist had told the Oncologist (Mr B) on 3rd December that the ultrasound showed no further fluid build up and therefore the operation might not be necessary and he decided to go ahead anyway (without taking into account the effect on the body of invasive surgery and the amount of recovery time necessary).
So, my confidence in the medical profession was/is significantly eroded. Somehow, I got through the rest of Wednesday without much to eat or getting much sleep. On Thursday morning when Mr O came on his rounds he said the bronchoscopy hadn’t shown anything and that the attempted pleurodesis shouldn’t delay the start of the chemotherapy – without seeming to take seriously the after effects of surgery (I wonder if any surgeon is really aware of the after-effects and the impact of lack of sleep and lack of good nutrition afterwards). But he said I could go home that day!
By the time I got home on Thursday evening I felt absolutely dreadful, but was so thankful to be out (felt like I’d been released from prison). But Karen cooked me a lovely meal and I dosed myself with painkillers and went to bed.
I slept for 7 hours and felt tons better this morning. After a nice breakfast, a bath (which I managed without any assistance) another sleep, a hair wash and a nice lunch I now feel like a human being again. After a long telephone conversation with my GP I’ve now got better pain medication and have a lot of time to reflect on the experience.
The two most important factors needed for recovery from any operation (sleep and good nutrition) seemed to be completely lacking in that ward. I’m told that the High Dependence Unit is superb, so I mustn’t judge the whole hospital by it, but something needs to be done about it (and when I’ve the energy, I will try – with the help of one of the other patients there with whom I struck up a bond).
I’ve now got 3 holes in my side causing enormous bruising and discomfort (if you’ve ever had a bruised or cracked rib – multiply the pain by 3 and then double it and you’ll have some idea what it feels like) and the task of building up my strength ready to face the chemotherapy, and a lot more questions I intend to ask at Christie’s on Wednesday.
If you want to visit, please contact my very efficient ‘appointments secretary’ (Karen) on my home number.