The morning of Monday 23 Jan dawned and I was nowhere near ready to go to hospital. I rushed about stripping beds, getting clean bedding and towels out, preparing a heap of washing including all my throws and blankets for the cleaner to take away and then belting out to the dry cleaners to retrieve a mound of cushion covers. I had to line up the house for the local handy man and my friends to make up a load of IKEA furniture for me, that was to replace heavily used and uncomfortable things I had sent off to the Sally Ally.
The cancer car driver phoned to check the route to my house up a winding, badly pot-marked 'road' and announced he was bringing his wife to find the way. I couldn't really object even though the idea of having a jolly jaunt to hospital was not really appealing; I would want to concentrate on sending messges to rellies and mates to ensure they had the contact details for my friend who would moderate my facebook profile whilst I was in hospital. We agreed I would be picked up at 1pm, to be at the hospital for 3pm.
I faffed around changing my packing and having early lunch and then settled back to await the car, which never came. By 1.30pm, I was pretty sure something was wrong and found a missed mobile phone call on my phone. The cancer car driver answered. Are you okay, I asked? No, said the driver! He wailed he was stuck in mud up a track and couldn't find anyone to get him out. I really didn't have time for this so I said he had to dig himself out and I would just have to drive myself to the hospital. So I threw my luggage (mainly squashy dried prunes, figs, apricots, tinned pineapple, tinned sweetcorn and macadamia nuts) and myself into my car and set off at breakneck speed to get to the hospital for admissions. On the way I realised I could not park the car for long in the hospital car park, so I phoned the car dealership where I had bought my car to ask them to take it in as an emergency and give it its annual service, holding on to it until I could arrange collection despite the fact I would be off driving for at least six weeks. The dealership spent about 15 minutes (driving me nuts on handsfree) being very slow and obstructive, until I barracked them and explained I was on my way, they were taking the car like it or not, and they would hold onto the car until I was post-op and ready to arrange collection. (The background to all this being that I had been trying to arrange a car service for about a month, but the dealership had been 'too busy'.) By the time I got to the dealership, I was running ten minutes late and I belted in and made sure they organised a taxi asap to take me on to the hospital down the road (they had refused to drop me off, despite being within the catchment area for drop offs), and I ran out of there after exasperating minutes of them very slowly going over all the details we had discussed minutes before as I had been driving. Grr
At the hospital I took a few minutes to call my friend who would be an Executor if anything went wrong, and then hit Ward 18, the surgical ward. I was sat in the day room until my bed was ready but instantly visited by the consultant anaesthetist who was extremely reassuring. I liked her on the spot and we went through the anaesthetics she would use during the op and the analgesics post-op. We agreed no codeine, no tramadoll, just household painkillers and morphine. I was hugely relieved to have the conversation and know I could trust the anesthetist because I know only too well it is not the surgeons who kill you on the operating table, it is the anaesthetist.
A junior doctor turned up and took me to my bed, which was actually in what I called a single cell. I was so happy - I would be able to get some sleep and be properly rested before the op. A series of nurses and junior doctors came in to do obs and try to take the blood group match blood sample (failing to find a vein three times - this was getting worrying), and then suddenly my next of kin clinical consultant relative tipped up and we fled off to find the canteen for coffee, despite the nurses warning me it was dinner time and I might miss my supper if I ran away. But running away I did and it was hugely helpful and settling to speak to an unflappable medic who understood the basics of what I would be going through. Back on the ward we checked with the nurses station what the next of kin protocol was for post op checking up, and the staff nurse gave us a completely new phone number for the High Dependency Unit I would be in for the first day or so post op. With that settled, I was left to my own devices to arrange supper at 7pm now that the kitchens had closed and a very generous nurse, taking pity, whipped up quite a feast to settle me down. I was surprised how anxious I was just under quite a calm surface. I was very quickly very scratchy. A bit later on, after going through all my tablets and agreeing the morning's timetable, I was left to myself in my single cell to wash my hair and start the pre-op cleansing programme I intended to follow. I was given a blood thinner and told not to take Tamoxifen.
I slept well with my excellent earplugs and started the day of the op, Tues 24 Jan, at 6.30am having been nil by mouth since midnight. I had a final shower and wrestled on my surgical stockings and hospital gown. Sitting to attention, I then received a stream of visitors - nurses doing obs, other nurses doing pre-op questionnaire checks, junior doctors checking I had had nil by mouth - and then the surgeons and an assisting anaesthetist. The assisting anaesthetist asked all the wrong questions and I was was pretty short with him that he had neither read my notes nor discussed my allergies or intolerances with the consultant anaesthetist. He wandered off vaguely with my notes and left the nurses belting around trying to find what he had done with them. The surgeons came in three batches. First came the mastectomy consultant, who introduced himself and seemed okay, if slightly pompous. Then came my lead plastics reconstruction consultant, who was reassuringly keen to get moving and get the show on the road without being hurried. Then came a couple of other assisting surgeons with the main assisting reconstruction consultant surgeon, a lady with a PhD who styled herself Dr as opposed to Ms. It was at that point, with all of them squashed in at the bottom of my bed in my single cell that the mastectomy consultant grandstanded me, meaning he started talking in a commanding way to his audience without much reference to me as the patient. He announced The Lump was at least 4.5cm and if it was found to be over 5cm I would automatically need radiotherapy and possibly chemotherapy as well. This was news to me, so with a few minutes to go before been taken down to theatre, I mounted as spirited defence I could muster, saying that actually my oncologist had decided from all the evidence so far that The Lump was 3cm, only estrogen and progesterone receptive, nothing else, self-contained because all the nodes biopsies had come out clear, would need neither chemo nor radiotherapy, and post-op would be treated only with Tamoxifen to stop recurrence and maybe sterilisation in due course, but nothing in a hurry. There was a bit of shuffling and the consultant breast surgeon started back tracking saying that of course he knew my oncologist and would make sure she had all the information from the mastectomy, and that it could be difficult to decide on really what size a tumour was from imaging. So with minutes to go until what I had been told was a twelve hour op, I was suddenly confronted by the prospect of a far worse tumour at stage 3, not stage 2, with far greater risks and the need for the plastic surgeons to fill my tit to the max in case I needed radiotherapy. How bloody unhelpful.
The surgeons left in a gaggle and the last ward checklists were read at me to yes or no, and off I was wheeled for theatre. The orderly explained they don't let people walk down any more because their knees would buckle half way and it was getting a pill having to scrape patients off the floor to get them into theatre. So luxury bed service was now the norm. In the recovery area outside theatre, I was moved onto a surgical bed and then wheeled through to the anesthetists' anteroom. There was my lovely consultant anaesthetist being reassuring and she set about putting in a canula, and explaining how many others would be put in once I was under. And off I went quite comfortably to sleep.
I was woken up in recovery with the good news that everything had gone well. The lady Dr surgeon popped by to say things were looking good and I felt pretty comfortable. My teeth started chattering and they whacked some extra blankets on me but this is a normal tendency I have to get extremely cold after a general. They had me on fluids, a morphine drip, a catheter, three drains and a round ball of local anasthetic plumbed straight into the tummy tuck wound called a haggis. After a while of more sleeping, I was taken up to Ward 19A, the post-surgical High Dependency Unit. I am a bit vague about the timings but I think I was out of surgery at 4.30pm and up on the ward by 6pm which was much, much faster than I had been lead to expect. Up on the HD Unit, a group of very canny nurses set too creating a wadding and tape padding construction to lift my fragile new tit towards the sternum and support it from dragging on its new blood vessel plumbing. One particularly amazing nurse did a runner down to the breast care team and whipped a mini pink love-heart cushion to use as a tit prop, which is what volunteers sew them together to be. Just at the critical moment, the lady Dr surgeon popped by again and started talking about boob tubes or sports bras, but all the nurses just ignored her and got me comfortable instead to much giggling. The night shift kicked in and I started getting annoyed that although I was the ony patient on the four bedded ward, the nurse was making a meal of looking after me. In hindsight, the general clearly started wearing off. At the time, I felt the nurse doing the obs kept me awake solidly with lights shining on me, much prodding and what I felt was unhelpful faffing. Whatever the reasons, I was getting the grumps.
Next day, sleep deprived, I seemed to feel better but I can't remember eating anything. I was visited by the surgeons on the ward round and they said I was doing well. I can't really remember much more. The problems started during the second night and I was told I would be staying put on HDU and not going back to Ward 18 yet. I wasn't clear why but they wanted to keep an eye on me a bit more. I remember I did have a brown bread sarni which I later regretted. A lovely nurse, Anne, who had met me whilst I was pre-op on Ward 18 appeared for the night shift and did a great job at looking after me, doing regular obs whilst also trying to give me a chance to get some sleep. However, by 6am she was worried because I had stopped producing urine and I was worried because my hands felt swollen and the catheter felt stingy and uncomfortable. My tummy was beginning to be extremely painful and distended and I started to feel unwell. Anne and the junior doctor she called started trying to figure out what was going wrong and rather soon my blood pressure dropped rapidly and they started trying to organise a bladder scanner, both of which appeared to be in different parts of the hospital either being used or suspected to be broken. This went on for about and hour, trying to locate a scanner, with the junior doctor in the meantime asking me helpful questions which instilled no confidence like had I 'had heart or kidney problems before?' Now feeling panicky, I listened to the junior doctor telling Anne to run fluids into me very rapidly to get my blood pressure up, which is when I felt I was about to have a heart attack and felt incredibly sick and unwell. I really thought it was the end and managed to find a quick gap in proceedings to text my consultant next of kin relative and ask WTAF he thought the junior doctor was doing. He phoned back to say that it was unlikely they would find out what was going wrong but that in fact I would probably sort myself out and the junior doctor sounded to be doing the right thing. Eventually the bladder scanner arrived and it was indeed broken. By now it was around 6.30am and I had both persuaded them to stop the fluid being pushed into me as I seemed not to be able to process it, and also persuade them just to change the catheter anyway, because I found it really uncomfortable. Anne took this on and low and behold, slowly I started producing urine again. The day shift nurses came on and Anne bade me farewell by saying she would try to check up on me during the day even off shift. The junior doctor disappeared and the ward round doctor came and prodded me with mild disinterest at how distended my tummy was, as I now had reasonable blood pressure and I was peeing for Britain into the catheter, so the pain I was in around my tummy tuck was not relevant to him. He did agree, however, to take me off the drip, slow down the fluids in take and also take me off the morphine drip. I would be allowed to have morphine tablets and liquid morphine to top up instead. To me, however, the tummy tuck straining was the focus of my pain and frustrating that the new nurses were similarly disinterested in helping me reduce the distended tension. It was only at about 10am that my main reconstruction surgeon came by and told me the distending was just flatulance caused by the operation. He was the first person to actually have an answer of sorts. The pain specialist popped round and suggested I drink a lot of peppermint tea, and went off to find a teabag herself. She had been told to take me off the morphine drip and was struggling to find me an alternative other than long-lasting morphine tablets as the base analgesic because I refused codeine or tramadoll.
Now feeling very sleep deprived and miserable about having such a painful football of a tummy, I asked for suppositories to help me go to the loo. The day nurses rolled me over and settled me onto my new tit, which the nurses on Ward 18 later criticised at as being completely wrong, and left me lying on my drains and surgery wounds for half an hour. I was beginning to doubt the way the daytime nurses were behaving. I could hear them muttering about being landed with difficult patients other wards did not want to have and I started feeling unwelcome. Also, the two main nurses came across as not wanting to look after me as not being challenging enough, instead preferring a trainee nurse to do most obs and drugs handouts, which involved her not being able to do anything without the say-so of a trained nurse, thus doubling the work for everyone. They then persuaded me I was better off standing up and using a commode rather than a bed pan, and in fact the physios would be in soon to get me to sit up in a tall-backed chair. I protested I was not feeling well enough but the nurses were quite clear this was the way forward, and I needed to start lowering my morphine doses at the same time, so I managed to persuade them to let me have some liquid morphine before starting the actions to get me to the commode, but they had not given me my regular painkillers of paracetamol and ibuprofen. Siting on the commode and getting nowhere fast, I nearly passed out and my blood pressure plummetted, so the nurses rapidly had to get me back into bed.
A while after this, I was encouraged to have another go and I was promised a clean up with soapy water if I sat up. This I agreed to do and so we got me propped up on the commode, at last making a bit of progress but then the student nurse started cleaning me up and she kept leaving cleaning things lying around leaving me feeling very twitchy. I had still not had my basic pain relief apart from a couple of paracetamol which are nowhere near strong enough for two days after the op. The long-lasting morphine pills had not been given to me as they had been prescribed at 10am and for some reason that meant I would not get them until later in the evening. I never did understand the logic of that. Meanwhile the pain I was experiencing was becoming crippling and I just burst into tears. I pleaded with the student nurse to get me back to bed and give me some painkillers as quickly as possible, which she said she could not do as she needed the other nurse to agree to give me liquid morphine. By now, I was running on empty in relation to painkillers and the liquid morphine was not strong enough to dull the pain. I carried on crying in fits and starts for about an hour and the physio turned up to get me to sit up in the armchair and I just broke down on her. She asked what was wrong and I started begging to be got off the HD Unit and get me onto Ward 18 where I knew the nurses were a bit more savvy. She kept asking me what was wrong and I said I had not had enough painkillers and now I was unclear that they would give me the morphine I needed. I didn't trust the nurses and I felt unsafe. It took a lot to say I felt unsafe but that was the truth of it. Being made to sit up without having eaten, without the right pain relief and sleep deprived had been too much. So the physio agreed to leave me until the evening to see if I could sit up then, and did what she could to say the operation had been very large so I would feel unhappy about that. But I was clear I was not traumatised. I was simply in too much pain. Eventually the nurses gave me more pain relief, emptied my brim full catheter, found me some food to have for lunch and left me alone to get some sleep. After a while, they agreed I could be moved to Ward 18 again and by 9pm, after at last giving me some long-lasting morphine tablets so I started feeling better, they moved me back to a blessed single cell on Ward 18. There another wonder nurse, Jade, who had seen me on my first night of HDU welcomed me back to the ward and, taking one look at me, exclaimed "what on EARTH have they done to you?", at which I burst into tears again, confessed I had hated being on HDU and she swept around the room sorting me out in seconds and saying, right, eat all these drugs and the sleeping tablet, get some sleep and I'll do your obs whilst you are asleep and you'll have no idea. I felt safe again and I'll always be grateful.
